My husband was diagnosed with this last year Sept 2022, it attacked his lungs. Almost lost him, 40 days in the hospital, excruciating pain, not able to breath without oxygen, fever was 104/106 for a week, not going down. Thank you for sharing and sorry you are going through this I understandyoucompletely. Fortunately the specialist has been very on top of his treatment, he has been disabled until his oxygen reach at least 96-97 % capacity walking. It has been a very traumatic journey but with the Lord's help and the Doctors we keep fighting.
What a harrowing journey! When my lung disease came on it was fast and furious. I lost 60% of my lung capacity within 6 months and was on the transplant list within the first year. The good news (such as it is) is that autoimmune Pulmonary Fibrosis -- rather than its cousins, can be relapsing/remitting. So, I have regained some lung function and even come off oxygen full time. It is a terrifying thing to watch and even scarier to live. My thoughts are with you. There's so much that doctors (and oxygen companies) don't know about living with supplemental oxygen so do join your local chapter of PFF Society/Better Breathers, etc. If you'd like to schedule time to talk about things -- you can do that at my website annetteleonard.com/schedule Sending you love and prayers.
I too was diagnosed in 2019. It's been a journey. Still trying to figure out how to get back to the old me, or as close as possible. Having a rare disease that's invisible to the eye is frustrating. Especially when there isn't anyone to really talk to about it. The joys! 😅
Oh, Jacqueline, I get it.... After YEARS spent trying to get back to what/who/how I once was I realized I was chasing a dream. I don't tell you this to burst a bubble or tell YOU how to be, just that I was breaking my own heart. Once I realized that I had to start from where I was and figure out how to move forward I've learned how to have more peace: in my life, with my illness, with what I can and can't do. I hope you're experiencing some real relief!
I am so glad I have found you! Recently I was diagnosed with ASS. It is pretty scary to me. Wanting to know more about it (having tested positive for the PL-7 antibody) I searched for information. That is how I found you! I've also been diagnosed with ILD, Pyoderma Gangrenosum, Asthma, and Arthritis. Currently I am on azathioprine and low dose of prednisone. Trying to live with my "new" normal. Until I read through the posts it didn't hit me that others can't see the disease. They can't, I guess, until it gets so bad. I do not know how I got to this point, or where it leads me.
I was diagnosed with this too in september 2023, its attacking my lungs plus the muscles. In the beginning they had no idea what was wrong with me, they kept coming up with all different medical issues. But the one doctor wouldnt give up and kept looking into my symptoms and put it to a panel of other doctors who then got the ball rolling and finally diagnosed me with this condition. Couldn't find a lot out about it and I felt alone until I found a facebook support group and we share our experiences and its been wonderful to mix with people from all around the world telling their story and what helps for us.
Oh, Sharon, I'm so sorry you're part of this club! However, I'm so thankful you had a persistent physician who didn't give up until there was an answer -- that's so fortunate. Yes, the Facebook groups can be so helpful since this one is so rare we often don't live near others with the same condition. I hope you've also looked into myositis.org and understandingmyositis.org both are WONDERFUL resources and host patient conferences (and online trainings) that are *incredible* resources. I'm so glad you're educating yourself and getting connected with others. These illnesses can be so isolating and difficult to manage/live with/understand. I hope, too, that you've found some good docs who are helping you get your symptoms under control. Best, Annette
I have Antisynthetase Syndrome, too. Initially, I was diagnosed with SLE in my early 20’s. Mostly managed but a few episodic flares requiring hospitalization. My joints have been run down and I’ve had a few surgeries as a result - everything to keep from actual joint replacements due to fear of rejection. I’m now 44, but just shy of my 40th birthday (May 2020) I began experiencing a flare the likes of nothing previously experienced. It’s was so much all at once. The deep fissures on all my fingertips that even superglue couldn’t keep sealed because every finger would swell so badly they’d just pop open again. I couldn’t write, open doors. Basically, everything you described. I became so weak I couldn’t take my own bra off or brush my hair. And for the first time all my joints physically matched the way I was feeling. They were hot and angry red. In a weird way it was satisfying because maybe my husband & family could finally see how badly I hurt. The list goes on and on to all the symptoms experienced that seem to grow day by day. I was so distraught that I looked for a new rheumatologist. I was waitlisted until late August. In between that time I had surgery for grade 4 carpel tunnel in my right hand. No real relief except the shooting nerve pain in my hand and arm subsided. I saw a dermatologist for my hands - I was told I washing them too much. Actually, in the midst of the pandemic I wasn’t washing as often as I should because it hurt so damn bad. Finally saw the new Rhuemy - he ordered a slew of labs. He personally calls before the end of the week to ask about my weakness symptoms. My legs and arms. The next day I was set for a liver ultrasound and a special MRI of my left leg to look for a suitable muscle biopsy site. I didn’t know what to think. He explained that my liver enzymes were alarmingly high as was my CPK levels and if the ultrasound was good then it was indicative of muscle wasting. By the end of September I had a diagnosis of Antisynthetase Syndrome, SLE, & suspected RA. Anti-Jo1 positive, as well as Anti-ro52, Anti-RNA Pol III, with a really high titer for my ANA. Also, a chest x-ray showed infiltrates in the lower bases of both lungs. I have to tell you, I wasn’t quite okay with accepting all this. I arranged for a second opinion via the Mayo Clinic. I took a month off work in December of 2020 just to help get to the bottom of it all. I saw every specialist under the sun while in Rochester. It’s a good thing, too. It would have taken me months to get through to all these doctors here in Texas and for three to even be on the same page would have been a miracle. Somehow I’ve been blessed that my pulmonologist has seen my disease before, as has my pain specialist. Between my knowledgeable specialist they ensure anyone else I see for coordinated care knows what to look for and how to approach my treatment. Fours years later and definitely have RA as well as some minor bone erosions. My ILD had progressed to moderate but with a lot of treatment I’m back to mild fibrosis at this point. I’ve been through the I get on treatments but through it all I’ve still managed to hold down a full time & stressful job working in senior management in aviation. It gives me a reason to get up and try every damn day! But it makes me feel hopeful to see there are others like me. It’s not just me struggling to find ways to explain exactly what this super rare autoimmune disease/syndrome is to people. I sometimes wonder if people think I’m this crazy person that loves the idea of having multiple autoimmune diseases like some weird badge of honor? Just four years ago, if someone told me they had all the issues I suffer from I would have rolled my eyes and thought “okay, sure ya do!” I applaud each and every one of you. It’s not easy but we’re doing it. I’ve joined every database or clinical trial I’ve been asked about. I gave the Mayo Clinic an open-ended approval to use my labs and DNA for anything that will lead to meaningful therapies. Someone asked me if I was worried that my dna could be used to clone me or some other crazy stuff and my reply was that I’m more worried that nothing will be done with it! Anything I can do to help - I will!
Oh Frances, what a journey! I'm SO grateful that you've had such competent physicians getting you to the diagnosis and treatments you need. Things can progress in such alarming and terrible ways with these diseases! I'm also interested in the fact that our onset hit at the exact same time in our lives... that's so interesting. I agree, there have been times during this journey that I've wondered whether people thought I was attracting chaos to me, if they'd stop caring because the journey was just too unbelievable/dramatic for anyone to understand or relate to. What an epic trial these illnesses can be. I'm so thankful to have a partner and core group of friends who have hung in there. It makes SUCH a difference to have highly qualified specialists who know about and see these diseases with some regularity. My local rheumatologist has only me on his roster with Antisynth. I got to the point where I felt like we were reading the same journal articles. However, I see a pulmonologist 5 hours away (because I was on the lung transplant list) and so I asked to see a rheumatologist up there and they see dozens of AS patients and it has been a game changer. I'm SO impressed you've been able to keep up with such a demanding job while managing these illnesses. What a testament to your strength. Wishing you the best and feel free to reach out here or on my website if you want to connect. Best, Annette
Deborah, oh my dear. I'm so sorry to welcome you to the club. We're quite exclusive (rare) and often diagnosis takes a looooonng time so I'm glad to hear you're on the right path with diagnosis. This can be a tricky disease (or set of diseases depending on your circumstance) to get under control but detection and diagnosis is key. Feel free to reach out (you can book a call to chat with me at my website if that feels good -- annetteleonard.com/schedule) However this goes -- you are not alone. Finding quality physicians and a rheumatologist with experience in the myotises helps a lot but that sometimes means traveling. Sending you big hugs and hopes for answers and comfort.
I have anti-synthetase syndrome was diagnosed October of 2023. I was diagnosed with Lupus almost 13 yrs ago but they are now saying it was probably misdiagnosed to begin with. I currently have mechanics hands, interstitial lung disease, as well as muscle weakness.
Oh Tonya, I'm sorry to welcome you to this club. It's crummy (not that Lupus is fun...) It is so tricky to diagnose -- so often missed, overlooked, misdiagnosed. I'm sorry to hear that you're suffering from the greatest hits (hands, muscles, lungs). It really is s*itty. I hope you're working with a skilled rheumatologist. There are solutions, they do take time, but things CAN get better. I had been on the lung transplant list and now I'm not and I don't have to use oxygen full time so I really mean it that things can improve. If it would help to talk to another person with antisynthetase syndrome, surf over to my website and lets set up a time to talk. This disease can be so lonely because there are so few of us. (annetteleonard.com/schedule) Even if you don't take me up on that -- know that you aren't alone. Sending you gentle hugs and strength for the journey ahead.
Hello! I’m so glad I found this video and you! I was diagnosed back in November 2020…. What a time. It is nice to see and hear from you as it is such a rare dx. This may sound forward but if you ever want to chat about your experience thus far please reach out to me:)
Stephanie! I'm so glad you found this video, too. It's so uncommon to connect with other antisynthetase folx out there. We are rare. I'm sorry you've been diagnosed with this rotten complex of illnesses! I would be GLAD to make time to talk. I have a scheduling app on my page annetteleonard.com/schedule if you'd like to find a time there. Gentle hugs and endless reschedules (if you aren't feeling well) allowed ❤
I was diagnosed in 2007 with Lupus, Raynaud's and Sjorgren. Last year I was diagnosed with Rheumatoid Arthritis and Antisynthetase. I sometimes wonder how I got so many autoimmune issues. My main issues are extreme fatigue, joints and muscles. I am 70 and still working full-time because I enjoy my job.
Hi, I have recently been diagnosed with antisynthetase as of sept 2024 at first they told me I had UCTD but suspected lupus. I had all the characteristics of the disease. Joint pains, rashes, raynauds and muscle pains here and there. I had a cough beginning of this year that would not leave me so I went to the doctors he listened to my chest and said there was an infection but I also requested an X-ray, by the next week I had to go for a CT scan to which they found quite a bit of scarring on my lungs to my surprise. This is all very new to me still! But thank you for the video nice to know I’m not alone
Oh Natasha, welcome to a very exclusive club you never wanted to join. I'm so sorry to hear you have antisynthetase syndrome. It can be so hard to live with and get on top of/manage symptoms. I hope you have a good rheumatologist you're working with -- someone you like and trust. Also, it sounds like you aren't experiencing muscle wasting (?) that would be *great!* I'm thankful they got you a chest CT but I hope they also scheduled you for PFTs (pulmonary function tests) to get some baseline data for how your lungs are functioning. I'm sorry to hear you have scarring and know that there are ways to live with and manage this (these) disease. Reach out if you need support. Sending gentle hugs. 🤗
Hi Annette, thank you for your kind words and advice. I haven’t had the smoothest ride with my rheumatologist to be honest but we’re getting there, however I am very lucky in some respect as my pulmonologist is great! He is very giving and super attentive. I haven’t noticed as much problems in terms of muscle wastage but I definitely will be keeping an eye. I have had a PFT thanks for mentioning all the results are in the 50%- 60% range but my pulmonologist is optimistic and glad we spotted the scarring sooner rather than later. Thanks again 🤗
@@Natasha1829 I'm SO glad to hear you have a kind and competent pulmonologist -- having a partner in this can make all the difference. It's great that he's optimistic (there's reason to be!) and working with you. Please reach out if you need support. You are not alone.
This is so interesting. I'm 51 and only recently been diagnosed with psoriatic arthritis and there are so many more things that my doctor said someday they'll be discovered but right now they don't have the tests for them. So good to have a doctor who is trying to help me, especially after having been dismissed by so many doctors (including missing the huge tumor that messed up my spine years ago) I'm having so many issues with not regulating the temperature in my hands especially. One thing I do know is that I have hemiplegic migraine, which are migraines that mimic strokes. I only discovered that from a fellow UA-camr and yes, it's what i have. So definitely grateful to hear about your experience! Makes so much sense what you said about demographics. I'd never thought about that.
Ahhhh someday, too bad that doesn't help us TODAY! But I do hope your doctor is correct that *someday* they'll have better diagnostic and treatment tools. Perhaps with gene editing -- although, with the state of health care, I do wonder. Thinking about your hand temperature/regulation issues, I'm assuming you know about the rechargeable hand warmers that are now available? I have three and keep them stowed everywhere so I'm never without one.
Hi, I was diagnosed last year, fatigued right now. I am on 200mgs of Azathioprine and if it's not working, I going to be put on an IV. I have OJ Autoantibodies, so even rarer than those with JOs. Yay. Anyway, going through bad and good days. Hugs to all.
Sherri -- that's SO CRUMMY. It was *really* difficult for me to find the right combination of meds. I'm glad that they're changing what you're on because there are ways to manage these diseases and even to get them into remission. Bad days (bad months, bad years) are so taxing on our mind and spirit. Be kind to yourself. There is hope for improvement but for now there is just getting through... Sending you lots of love and crossing my fingers that the next med is the one that will unlock some relief! 🙏🤞❤
I was diagnosed with antisynthetase syndrome in April 2023. I was put on immunosuppressants and I am participating in a clinical research protocol. It is a debilitating disease, very rare and which made me suffer a lot during the first weeks of its manifestation... 
Christine, I'm so glad you found a diagnosis and have gotten on medication! For so many it can take YEARS to get that far. Yes! antisynthetase syndrome comes with a lot of suffering and difficulty getting treatment. However, it can be relapsing so hang in there! Things can get better. Take your meds, get LOTS of rest, be loving, gentle and kind to your body in every way you can. There is reason to hope you'll improve. Sending you love and strength.
My 72 year old mother was diagnosed with a rear form of Statin Induced Polymyositis. She just had a stroke last week. They were treating her Polymyositis with steroids and IVIG. It's been very difficult specially when there is not a specific treatment. I would love to hear other people's stories to learn how they manage the symptoms.
Thanks for sharing a bit about your mom's story. If you haven't already found myosistis.org and understandingmyositis.org they are both REALLY helpful sites. This disease is so mysterious and pernicious! It can ravage a body and be *very* difficult to get under control. Many patients find IVIG helpful -- I used it for symptom management until the side effects (meningitis) were too much for me to bear. However, there seems to be an occasional link between antisynthetase syndrome and clotting -- I developed blood clots and now have a diagnosed autoimmune clotting disorder. I mention this because you talked about a stroke and I wondered whether that has been ruled out for your mom. If you'd like to schedule time to talk about this one on one, you can find time to talk to me on my website at annetteleonard.com/schedule Wishing you and your mom the very best.
Hi- thanks for posting! I too have ASS anti-jo1 with interstitial lung disease. Spreading knowledge about these rare diseases is how we get them further studied and hopefully some day a cure 2:20
Hey there! I'm anti-jo1, too. Thanks for commenting. My pulmonary doc was actually a resident at Rochester when the anti-jo1 antibody was discovered in connection with ASS. He told me this bit of trivia -- the guy who they first identified it in was named Joseph -- so they called it anti "jo" as in against Joseph. I've often wondered if any of the other synthetases follow the same pattern. Is the Ro one named after Robert, etc?🙃
My maternal grandmother had ALS, because it, too, involves muscle wasting I've often wondered if there is any genetic link that has yet to be found (confirmed, seen...) between ALS and Polymyositis. You, too, have a heavy, hard, difficult to treat diagnosis. Lots of love and healing energy to you. Thanks for commenting!
@@Chronic_Wellness sorry to hear your grandmother had ALS. I strongly believe that there are so many genetic links to diseases we carry through generations. My mum became terminally ill when she was pregnant with me. So much more research is needed to fully understand rare diseases and how and why they develop.
Was diagnosed with this at the beginning of the month after 15 months of dealing with the pain and inflammation and doctors kept saying I was fine and may have just been from having a baby.
THAT'S SO FRUSTRATING!!! I'm so thankful you were FINALLY diagnosed. I hope you're getting the *very* best possible care and that you really trust your rheumatologist. It IS a rare disease, however, it uphauling how long people have to wait/experience medical gaslighting/deteriorate before they get good care. I hope you're on the path to good care. There are a lot of great resources out there. Be gentle with yourself. These are relapsing/remitting conditions and it CAN get better!
I am a 56 year old male from South Africa. I have been diagnosed with antisynthetase syndrome. No clue how it came along but 8 months ago I was still doing my daily manual tasks. Most of the pain is in the hands, forearms, shoulders, thighs and calves. I wake up constantly during the night as it is painful to lay in one position for too long. Not on any medication and I am frantically searching the internet for some info. Trying to follow dietary advice as I have seen it mentioned that most diseases begin in the gut. Will update in your comments if I discover any information or treatment to share. Thank you for listening to my complaints :). Stay strong and hopeful .
Many illnesses do begin in the gut and I am a big supporter of cleaning up our diets as a component of addressing autoimmune disease. I'm also VERY interested in the stress-disease connection. There's a lot of very good information out there on this subject but the book that MOST spoke to me about this is called When the Body Says No, by Dr Gabor Mate. I can tell you that after 10 years of fighting this disease, I believe I am in a remission and am working with my doctors to see if I can come off my harsh/heavy-duty medications.. We'll see. I do know the pain you're describing and I also know that not getting enough/enough refreshing sleep has terrible health impacts, too. You're in my thoughts. Reporting your symptoms is not complaining! Thank you for sharing some of your story.
Hi Annette, I have all those diseases you have. I never heard of ASS. I am getting better, but I still get tired when I walk too much, which is very annoying for someone who was very active. This is resulting in weight gain now...ugh!
I HEAR YOU!!! Gaining weight because we can't breathe or move is SO FRUSTRATING -- not to mention the prednisone! It's so hard letting go of the lives we used to live, the people we used to be, the things we used to be able to do. I'm so sorry for what you've lost. Thanks for commenting. You are not alone. This s*it is hard.
From zero medication to a lot of them. I was diagnosed with the syndrome, end of 2023. My lung capacity dropped to 50 percent and I got reasonably better due a combination of Medrol and Cellcept and now on Cellcept pills. But almost three months ago my knees started to play up.I have difficulty to raise up from a chair, climb the stairs etc... We are trying to find out if the syndrome causes this. If so I will receive Baxters. I have already lost a lot of hair in the process as well. Thank you for reading this.
Oh, my sweet! What a journey! My lung disease progressed rapidly like that, too. It's SO SCARY. I don't think anything can prepare you for oxygen scarcity. It's not a feeling I would wish on anyone. I'm glad to hear that your symptoms have improved. How perplexing about your knees... That isn't one I'm familiar with -- but this disease is TRICKY. And, I've found that many of us are susceptible to more/other autoimmune diseases now that we have these... so... that's fun. I hope you have skilled and attentive practitioners working with you. Keep asking questions and advocating for the care you deserve! Sending gentle hugs.
Next month supposedly to get diagnosed again. Was IBM, then mitochondrial disease or PM or maybe IBM but NT5 C1a antibody is disappearing over 5 yrs. No antibodies to MG but respond strongly to Mestinon. He is still arguing if I could have more than one disease because I am not following the books. Dude, I am writing the book. Keep up.
So many of us with rare diseases are doing the heavy lifting of educating our doctors. You ARE writing the book which is *exhausting* while also LIVING the book!! I find it so interesting how double-edged diagnosis can be -- so validating and invalidating, seen and unseen. But, it is such a helpful starting place. It's difficult falling through the cracks, being mysterious and having no place for a toe-hold.
I think I have antisynthetase. Two weeks ago I was diagnosed with undifferentiated connective tissues disease, with anti-ro. I have lung involvement, raynauds and mechanics hands. I think they tested anti Jo and it was negative, but I need to push for more testing. I’m waiting to see the lung specialist. I’m just worried hydroxychloroquine won’t stop the lung inflammation 😔
Becca, I'm glad you're staying informed and advocating for your care! Yes, anti-ro is one of the autoantibodies that is also affiliated with antisynthetase syndrome. Get into that pulmonologist and get your baseline PFTs (pulmonary function tests) those will help a lot in your continued care. Understanding what lung function you're starting with (and perhaps doing some imaging (CTs give a better picture than X-Rays) will give you some insight as to whether there is lung involvement. It's true, hydroxycloroquine does not slow the progression of scar tissue in the lungs. However, talk to your rheumatologist or GP about NAC. [I'm not a doctor, don't take medical advice from me..] It's a supplement that is now in trials for antisynthetase pulmonary fibrosis. My pulmonologist recommends taking 600mgs 3x/day to slow the progression of lung disease. Best wishes and touch base if you want support. Sending gentle hugs!
Hi Annette, thank you so much for the advice. I will definitely ask about the NAC. I’m booked for more lung investigations in November and the wait is quite frustrating. My mum bless her keeps calling the hospital to see if there’s any cancellations.
@@beccafranklin6683 I'm glad you're booked for more thorough testing. If you're able to breathe right now, you should be able to wait until November, but bless your mama for making those calls. You're lucky to have someone helping you advocate! Sending gentle hugs. A
Glad to find this video! All of the above and alsi ild and sjogrens....any tips on helping w the cracking skin on fingertips. Doctors see it as the least of my worries, but it is so painful and affects my quality of life daily. Aside from high doses of prednisone nothing helps. Any product, supplements or meds that have helped?
Ohhhhh Courtney!!! I'm so sorry to hear you're experiencing Mechanic's Hands. The swelling, cracked fingertips, and soreness... it's tough to explain how awful it is to someone who hasn't experienced it. The short answer is, no, I haven't found any good remedy. High dose predisone is the ONLY thing that ever make a REAL difference for me. I've tried "O'keefs Working Hands" and wearing Vasoline under cotton gloves at night. Those helped marginally with the dryness/cracking, but nothing but the big guns really resolved the problem.
AGREED! It is difficult (and sometimes not possible) to stay positive in the face of what this illness has to throw at you! Me and cellcept were NOT friends and, well, you know the ride that prednisone puts you on... What I can tell you is that there are ways to get this under control. It has take me YEARS and lots of work -- both personally, and with my physicians, but I've now found some equilibrium, where I don't feel like the meds or the illness are wreaking havoc at all times. This is a relapsing/remitting condition and there are ways to get to remission. Hang in there and reach out if you want chat. It is so complex and isolating but there are ways through. Best!
I was just diagnosed with A.S.S. a month ago after being treated for lupus for 4 years😢. I also have all the symptoms you described except ILD. However, I may have autoimmune hepatitis. Has anyone else had liver issues associated with their autoimmune disease???
Deanna, oh sweetheart, what a lot! I'm so sorry you were misdiagnosed. I wish that was uncommon. These diseases are so rare I expect a rheumatologist could go her whole career and not have an A.S.S. patient on their roster -- they don't expect to see us and so they don't. However, I'm glad you're getting treated NOW. One thing about not having ILD -- you may request to get PFTs (pulmonary function tests) done NOW so you have a baseline. Because this disease so often comes for the lungs at some point, it's helpful to know what your starting point is/was. Regarding your liver. I don't have a lot of experience with this so I can't say much except that you can not be the first. If your doc doesn't have experience and you are able you might consider traveling. I travel 5.5 hrs away to see a specialist who KNOWS what they're doing with my diseases and isn't just reading the same journal articles I am. Also, because the meds they give us are often so toxic, you want to make SURE they're protecting your sweet liver. Get good care. Sending gentle hugs and glad you're now treating the *actual* problem! 💞
Im a 17 year old male with cracking of skin on the hands, and I have had this on my hands since around 16. I have no issues with lungs or muscles. Could this be ASS?
Amaan, what a good question. I'm not a medical professional so definitely talk to your doctor about your symptoms! The condition "mechanic's hands" accompanies my disease. I don't know if it can show up on its own. You might look around. In addition to cracking skin, it causes thickening of the skin, the fingers to swell painfully and the inability to bend or use your fingers very much -- is that consistent with your experience?
I do have ASS all of those symptoms you mentioned I started with severe carpal tunnel in both hands and had surgery also other symptoms include, dry eyes and mouth and some dysphagia.
boooo! I'm so sorry. Do you think the carpal tunnel was at all related or just a coincidence that it started prior to the onset of your illnesses? Has the dysphagia been progressive? Relapsing/remitting? I hope you're finding light in your days in the midst of what it takes to manage this difficult set of illnesses. Sending gentle hugs.
That's a great question! I don't know of any supplements that have been *proven* to work. But again -- we are a rare disease so who's testing things with our population??? My rheumatologist wonders whether either creatine powders or collagen taken regularly can help with the muscle wasting part of ASS. Additionally, my pulmonologist has had me taking 600mg of NAC 3x/day for years for lung function. However, I'm not a physician and you should talk to your health care providers before making any changes to your supplements, etc. 😉 Best wishes and hope you find solutions!
I'm so sorry to hear that. How are you managing? Have you been able to halt or slow the disease progression? Where did it start? With one of the myosotises?
Oh Janice, thanks for responding here. I'm so sorry you, too have this complex and difficult disease. Have you been able to find stability? Were you diagnosed first with one of the myosotis's?
My husband was diagnosed with this last year Sept 2022, it attacked his lungs. Almost lost him, 40 days in the hospital, excruciating pain, not able to breath without oxygen, fever was 104/106 for a week, not going down. Thank you for sharing and sorry you are going through this I understandyoucompletely. Fortunately the specialist has been very on top of his treatment, he has been disabled until his oxygen reach at least 96-97 % capacity walking. It has been a very traumatic journey but with the Lord's help and the Doctors we keep fighting.
What a harrowing journey! When my lung disease came on it was fast and furious. I lost 60% of my lung capacity within 6 months and was on the transplant list within the first year.
The good news (such as it is) is that autoimmune Pulmonary Fibrosis -- rather than its cousins, can be relapsing/remitting. So, I have regained some lung function and even come off oxygen full time.
It is a terrifying thing to watch and even scarier to live. My thoughts are with you. There's so much that doctors (and oxygen companies) don't know about living with supplemental oxygen so do join your local chapter of PFF Society/Better Breathers, etc. If you'd like to schedule time to talk about things -- you can do that at my website annetteleonard.com/schedule
Sending you love and prayers.
I too was diagnosed in 2019. It's been a journey. Still trying to figure out how to get back to the old me, or as close as possible. Having a rare disease that's invisible to the eye is frustrating. Especially when there isn't anyone to really talk to about it. The joys! 😅
Oh, Jacqueline, I get it.... After YEARS spent trying to get back to what/who/how I once was I realized I was chasing a dream. I don't tell you this to burst a bubble or tell YOU how to be, just that I was breaking my own heart.
Once I realized that I had to start from where I was and figure out how to move forward I've learned how to have more peace: in my life, with my illness, with what I can and can't do.
I hope you're experiencing some real relief!
I am so glad I have found you! Recently I was diagnosed with ASS. It is pretty scary to me. Wanting to know more about it (having tested positive for the PL-7 antibody) I searched for information. That is how I found you! I've also been diagnosed with ILD, Pyoderma Gangrenosum, Asthma, and Arthritis. Currently I am on azathioprine and low dose of prednisone. Trying to live with my "new" normal. Until I read through the posts it didn't hit me that others can't see the disease. They can't, I guess, until it gets so bad. I do not know how I got to this point, or where it leads me.
I was diagnosed with this too in september 2023, its attacking my lungs plus the muscles. In the beginning they had no idea what was wrong with me, they kept coming up with all different medical issues. But the one doctor wouldnt give up and kept looking into my symptoms and put it to a panel of other doctors who then got the ball rolling and finally diagnosed me with this condition. Couldn't find a lot out about it and I felt alone until I found a facebook support group and we share our experiences and its been wonderful to mix with people from all around the world telling their story and what helps for us.
Oh, Sharon, I'm so sorry you're part of this club! However, I'm so thankful you had a persistent physician who didn't give up until there was an answer -- that's so fortunate. Yes, the Facebook groups can be so helpful since this one is so rare we often don't live near others with the same condition. I hope you've also looked into myositis.org and understandingmyositis.org both are WONDERFUL resources and host patient conferences (and online trainings) that are *incredible* resources.
I'm so glad you're educating yourself and getting connected with others. These illnesses can be so isolating and difficult to manage/live with/understand. I hope, too, that you've found some good docs who are helping you get your symptoms under control. Best, Annette
I have Antisynthetase Syndrome, too. Initially, I was diagnosed with SLE in my early 20’s. Mostly managed but a few episodic flares requiring hospitalization. My joints have been run down and I’ve had a few surgeries as a result - everything to keep from actual joint replacements due to fear of rejection.
I’m now 44, but just shy of my 40th birthday (May 2020) I began experiencing a flare the likes of nothing previously experienced. It’s was so much all at once. The deep fissures on all my fingertips that even superglue couldn’t keep sealed because every finger would swell so badly they’d just pop open again. I couldn’t write, open doors. Basically, everything you described. I became so weak I couldn’t take my own bra off or brush my hair. And for the first time all my joints physically matched the way I was feeling. They were hot and angry red. In a weird way it was satisfying because maybe my husband & family could finally see how badly I hurt. The list goes on and on to all the symptoms experienced that seem to grow day by day. I was so distraught that I looked for a new rheumatologist. I was waitlisted until late August. In between that time I had surgery for grade 4 carpel tunnel in my right hand. No real relief except the shooting nerve pain in my hand and arm subsided. I saw a dermatologist for my hands - I was told I washing them too much. Actually, in the midst of the pandemic I wasn’t washing as often as I should because it hurt so damn bad.
Finally saw the new Rhuemy - he ordered a slew of labs. He personally calls before the end of the week to ask about my weakness symptoms. My legs and arms. The next day I was set for a liver ultrasound and a special MRI of my left leg to look for a suitable muscle biopsy site. I didn’t know what to think. He explained that my liver enzymes were alarmingly high as was my CPK levels and if the ultrasound was good then it was indicative of muscle wasting.
By the end of September I had a diagnosis of Antisynthetase Syndrome, SLE, & suspected RA. Anti-Jo1 positive, as well as Anti-ro52, Anti-RNA Pol III, with a really high titer for my ANA. Also, a chest x-ray showed infiltrates in the lower bases of both lungs.
I have to tell you, I wasn’t quite okay with accepting all this. I arranged for a second opinion via the Mayo Clinic. I took a month off work in December of 2020 just to help get to the bottom of it all.
I saw every specialist under the sun while in Rochester. It’s a good thing, too. It would have taken me months to get through to all these doctors here in Texas and for three to even be on the same page would have been a miracle.
Somehow I’ve been blessed that my pulmonologist has seen my disease before, as has my pain specialist. Between my knowledgeable specialist they ensure anyone else I see for coordinated care knows what to look for and how to approach my treatment. Fours years later and definitely have RA as well as some minor bone erosions. My ILD had progressed to moderate but with a lot of treatment I’m back to mild fibrosis at this point.
I’ve been through the I get on treatments but through it all I’ve still managed to hold down a full time & stressful job working in senior management in aviation. It gives me a reason to get up and try every damn day!
But it makes me feel hopeful to see there are others like me. It’s not just me struggling to find ways to explain exactly what this super rare autoimmune disease/syndrome is to people. I sometimes wonder if people think I’m this crazy person that loves the idea of having multiple autoimmune diseases like some weird badge of honor? Just four years ago, if someone told me they had all the issues I suffer from I would have rolled my eyes and thought “okay, sure ya do!”
I applaud each and every one of you. It’s not easy but we’re doing it. I’ve joined every database or clinical trial I’ve been asked about. I gave the Mayo Clinic an open-ended approval to use my labs and DNA for anything that will lead to meaningful therapies. Someone asked me if I was worried that my dna could be used to clone me or some other crazy stuff and my reply was that I’m more worried that nothing will be done with it! Anything I can do to help - I will!
Oh Frances, what a journey! I'm SO grateful that you've had such competent physicians getting you to the diagnosis and treatments you need. Things can progress in such alarming and terrible ways with these diseases! I'm also interested in the fact that our onset hit at the exact same time in our lives... that's so interesting.
I agree, there have been times during this journey that I've wondered whether people thought I was attracting chaos to me, if they'd stop caring because the journey was just too unbelievable/dramatic for anyone to understand or relate to. What an epic trial these illnesses can be. I'm so thankful to have a partner and core group of friends who have hung in there.
It makes SUCH a difference to have highly qualified specialists who know about and see these diseases with some regularity. My local rheumatologist has only me on his roster with Antisynth. I got to the point where I felt like we were reading the same journal articles. However, I see a pulmonologist 5 hours away (because I was on the lung transplant list) and so I asked to see a rheumatologist up there and they see dozens of AS patients and it has been a game changer.
I'm SO impressed you've been able to keep up with such a demanding job while managing these illnesses. What a testament to your strength. Wishing you the best and feel free to reach out here or on my website if you want to connect. Best, Annette
I was diagnosed last month-finally. Getting a CT scan the first part of may to see which myositis I have. Will share more later.
Deborah, oh my dear. I'm so sorry to welcome you to the club. We're quite exclusive (rare) and often diagnosis takes a looooonng time so I'm glad to hear you're on the right path with diagnosis. This can be a tricky disease (or set of diseases depending on your circumstance) to get under control but detection and diagnosis is key.
Feel free to reach out (you can book a call to chat with me at my website if that feels good -- annetteleonard.com/schedule) However this goes -- you are not alone. Finding quality physicians and a rheumatologist with experience in the myotises helps a lot but that sometimes means traveling. Sending you big hugs and hopes for answers and comfort.
I have anti-synthetase syndrome was diagnosed October of 2023. I was diagnosed with Lupus almost 13 yrs ago but they are now saying it was probably misdiagnosed to begin with. I currently have mechanics hands, interstitial lung disease, as well as muscle weakness.
Oh Tonya, I'm sorry to welcome you to this club. It's crummy (not that Lupus is fun...) It is so tricky to diagnose -- so often missed, overlooked, misdiagnosed. I'm sorry to hear that you're suffering from the greatest hits (hands, muscles, lungs). It really is s*itty. I hope you're working with a skilled rheumatologist. There are solutions, they do take time, but things CAN get better. I had been on the lung transplant list and now I'm not and I don't have to use oxygen full time so I really mean it that things can improve. If it would help to talk to another person with antisynthetase syndrome, surf over to my website and lets set up a time to talk. This disease can be so lonely because there are so few of us. (annetteleonard.com/schedule) Even if you don't take me up on that -- know that you aren't alone. Sending you gentle hugs and strength for the journey ahead.
Hello! I’m so glad I found this video and you! I was diagnosed back in November 2020…. What a time. It is nice to see and hear from you as it is such a rare dx. This may sound forward but if you ever want to chat about your experience thus far please reach out to me:)
Stephanie! I'm so glad you found this video, too. It's so uncommon to connect with other antisynthetase folx out there. We are rare. I'm sorry you've been diagnosed with this rotten complex of illnesses! I would be GLAD to make time to talk. I have a scheduling app on my page annetteleonard.com/schedule if you'd like to find a time there.
Gentle hugs and endless reschedules (if you aren't feeling well) allowed
❤
I was diagnosed in 2007 with Lupus, Raynaud's and Sjorgren. Last year I was diagnosed with Rheumatoid Arthritis and Antisynthetase. I sometimes wonder how I got so many autoimmune issues. My main issues are extreme fatigue, joints and muscles. I am 70 and still working full-time because I enjoy my job.
Thanx for posting ❤
Thanks for watching! You're the reason I do this ❤
Hi, I have recently been diagnosed with antisynthetase as of sept 2024 at first they told me I had UCTD but suspected lupus. I had all the characteristics of the disease. Joint pains, rashes, raynauds and muscle pains here and there. I had a cough beginning of this year that would not leave me so I went to the doctors he listened to my chest and said there was an infection but I also requested an X-ray, by the next week I had to go for a CT scan to which they found quite a bit of scarring on my lungs to my surprise.
This is all very new to me still! But thank you for the video nice to know I’m not alone
Oh Natasha, welcome to a very exclusive club you never wanted to join. I'm so sorry to hear you have antisynthetase syndrome. It can be so hard to live with and get on top of/manage symptoms. I hope you have a good rheumatologist you're working with -- someone you like and trust. Also, it sounds like you aren't experiencing muscle wasting (?) that would be *great!* I'm thankful they got you a chest CT but I hope they also scheduled you for PFTs (pulmonary function tests) to get some baseline data for how your lungs are functioning. I'm sorry to hear you have scarring and know that there are ways to live with and manage this (these) disease. Reach out if you need support.
Sending gentle hugs.
🤗
Hi Annette, thank you for your kind words and advice. I haven’t had the smoothest ride with my rheumatologist to be honest but we’re getting there, however I am very lucky in some respect as my pulmonologist is great! He is very giving and super attentive. I haven’t noticed as much problems in terms of muscle wastage but I definitely will be keeping an eye. I have had a PFT thanks for mentioning all the results are in the 50%- 60% range but my pulmonologist is optimistic and glad we spotted the scarring sooner rather than later.
Thanks again 🤗
@@Natasha1829 I'm SO glad to hear you have a kind and competent pulmonologist -- having a partner in this can make all the difference. It's great that he's optimistic (there's reason to be!) and working with you.
Please reach out if you need support. You are not alone.
This is so interesting. I'm 51 and only recently been diagnosed with psoriatic arthritis and there are so many more things that my doctor said someday they'll be discovered but right now they don't have the tests for them. So good to have a doctor who is trying to help me, especially after having been dismissed by so many doctors (including missing the huge tumor that messed up my spine years ago) I'm having so many issues with not regulating the temperature in my hands especially. One thing I do know is that I have hemiplegic migraine, which are migraines that mimic strokes. I only discovered that from a fellow UA-camr and yes, it's what i have. So definitely grateful to hear about your experience! Makes so much sense what you said about demographics. I'd never thought about that.
Ahhhh someday, too bad that doesn't help us TODAY! But I do hope your doctor is correct that *someday* they'll have better diagnostic and treatment tools. Perhaps with gene editing -- although, with the state of health care, I do wonder.
Thinking about your hand temperature/regulation issues, I'm assuming you know about the rechargeable hand warmers that are now available? I have three and keep them stowed everywhere so I'm never without one.
Hi, I was diagnosed last year, fatigued right now. I am on 200mgs of Azathioprine and if it's not working, I going to be put on an IV. I have OJ Autoantibodies, so even rarer than those with JOs. Yay. Anyway, going through bad and good days. Hugs to all.
Sherri -- that's SO CRUMMY. It was *really* difficult for me to find the right combination of meds. I'm glad that they're changing what you're on because there are ways to manage these diseases and even to get them into remission. Bad days (bad months, bad years) are so taxing on our mind and spirit. Be kind to yourself. There is hope for improvement but for now there is just getting through...
Sending you lots of love and crossing my fingers that the next med is the one that will unlock some relief!
🙏🤞❤
I was diagnosed with antisynthetase syndrome in April 2023. I was put on immunosuppressants and I am participating in a clinical research protocol. It is a debilitating disease, very rare and which made me suffer a lot during the first weeks of its manifestation...

Christine, I'm so glad you found a diagnosis and have gotten on medication! For so many it can take YEARS to get that far. Yes! antisynthetase syndrome comes with a lot of suffering and difficulty getting treatment. However, it can be relapsing so hang in there! Things can get better. Take your meds, get LOTS of rest, be loving, gentle and kind to your body in every way you can. There is reason to hope you'll improve. Sending you love and strength.
My 72 year old mother was diagnosed with a rear form of Statin Induced Polymyositis. She just had a stroke last week. They were treating her Polymyositis with steroids and IVIG. It's been very difficult specially when there is not a specific treatment. I would love to hear other people's stories to learn how they manage the symptoms.
Thanks for sharing a bit about your mom's story. If you haven't already found myosistis.org and understandingmyositis.org they are both REALLY helpful sites. This disease is so mysterious and pernicious! It can ravage a body and be *very* difficult to get under control. Many patients find IVIG helpful -- I used it for symptom management until the side effects (meningitis) were too much for me to bear. However, there seems to be an occasional link between antisynthetase syndrome and clotting -- I developed blood clots and now have a diagnosed autoimmune clotting disorder. I mention this because you talked about a stroke and I wondered whether that has been ruled out for your mom. If you'd like to schedule time to talk about this one on one, you can find time to talk to me on my website at annetteleonard.com/schedule
Wishing you and your mom the very best.
Hi- thanks for posting! I too have ASS anti-jo1 with interstitial lung disease. Spreading knowledge about these rare diseases is how we get them further studied and hopefully some day a cure 2:20
Hey there! I'm anti-jo1, too. Thanks for commenting. My pulmonary doc was actually a resident at Rochester when the anti-jo1 antibody was discovered in connection with ASS. He told me this bit of trivia -- the guy who they first identified it in was named Joseph -- so they called it anti "jo" as in against Joseph. I've often wondered if any of the other synthetases follow the same pattern. Is the Ro one named after Robert, etc?🙃
Thankyou for the video, really informative as I had never heard of your disease. I have ALS which falls in the rare disease category. Sending hugs💕
My maternal grandmother had ALS, because it, too, involves muscle wasting I've often wondered if there is any genetic link that has yet to be found (confirmed, seen...) between ALS and Polymyositis. You, too, have a heavy, hard, difficult to treat diagnosis. Lots of love and healing energy to you. Thanks for commenting!
@@Chronic_Wellness sorry to hear your grandmother had ALS. I strongly believe that there are so many genetic links to diseases we carry through generations. My mum became terminally ill when she was pregnant with me. So much more research is needed to fully understand rare diseases and how and why they develop.
Was diagnosed with this at the beginning of the month after 15 months of dealing with the pain and inflammation and doctors kept saying I was fine and may have just been from having a baby.
THAT'S SO FRUSTRATING!!! I'm so thankful you were FINALLY diagnosed. I hope you're getting the *very* best possible care and that you really trust your rheumatologist. It IS a rare disease, however, it uphauling how long people have to wait/experience medical gaslighting/deteriorate before they get good care.
I hope you're on the path to good care. There are a lot of great resources out there. Be gentle with yourself. These are relapsing/remitting conditions and it CAN get better!
I am a 56 year old male from South Africa. I have been diagnosed with antisynthetase syndrome. No clue how it came along but 8 months ago I was still doing my daily manual tasks. Most of the pain is in the hands, forearms, shoulders, thighs and calves. I wake up constantly during the night as it is painful to lay in one position for too long. Not on any medication and I am frantically searching the internet for some info. Trying to follow dietary advice as I have seen it mentioned that most diseases begin in the gut. Will update in your comments if I discover any information or treatment to share. Thank you for listening to my complaints :). Stay strong and hopeful .
Many illnesses do begin in the gut and I am a big supporter of cleaning up our diets as a component of addressing autoimmune disease. I'm also VERY interested in the stress-disease connection. There's a lot of very good information out there on this subject but the book that MOST spoke to me about this is called When the Body Says No, by Dr Gabor Mate. I can tell you that after 10 years of fighting this disease, I believe I am in a remission and am working with my doctors to see if I can come off my harsh/heavy-duty medications.. We'll see.
I do know the pain you're describing and I also know that not getting enough/enough refreshing sleep has terrible health impacts, too. You're in my thoughts. Reporting your symptoms is not complaining! Thank you for sharing some of your story.
Hi Annette, I have all those diseases you have. I never heard of ASS. I am getting better, but I still get tired when I walk too much, which is very annoying for someone who was very active. This is resulting in weight gain now...ugh!
I HEAR YOU!!! Gaining weight because we can't breathe or move is SO FRUSTRATING -- not to mention the prednisone! It's so hard letting go of the lives we used to live, the people we used to be, the things we used to be able to do.
I'm so sorry for what you've lost. Thanks for commenting. You are not alone. This s*it is hard.
From zero medication to a lot of them. I was diagnosed with the syndrome, end of 2023. My lung capacity dropped to 50 percent and I got reasonably better due a combination of Medrol and Cellcept and now on Cellcept pills. But almost three months ago my knees started to play up.I have difficulty to raise up from a chair, climb the stairs etc... We are trying to find out if the syndrome causes this. If so I will receive Baxters. I have already lost a lot of hair in the process as well. Thank you for reading this.
Oh, my sweet! What a journey! My lung disease progressed rapidly like that, too. It's SO SCARY. I don't think anything can prepare you for oxygen scarcity. It's not a feeling I would wish on anyone.
I'm glad to hear that your symptoms have improved. How perplexing about your knees... That isn't one I'm familiar with -- but this disease is TRICKY. And, I've found that many of us are susceptible to more/other autoimmune diseases now that we have these... so... that's fun.
I hope you have skilled and attentive practitioners working with you. Keep asking questions and advocating for the care you deserve! Sending gentle hugs.
Next month supposedly to get diagnosed again. Was IBM, then mitochondrial disease or PM or maybe IBM but NT5 C1a antibody is disappearing over 5 yrs. No antibodies to MG but respond strongly to Mestinon. He is still arguing if I could have more than one disease because I am not following the books. Dude, I am writing the book. Keep up.
So many of us with rare diseases are doing the heavy lifting of educating our doctors. You ARE writing the book which is *exhausting* while also LIVING the book!!
I find it so interesting how double-edged diagnosis can be -- so validating and invalidating, seen and unseen. But, it is such a helpful starting place. It's difficult falling through the cracks, being mysterious and having no place for a toe-hold.
I think I have antisynthetase. Two weeks ago I was diagnosed with undifferentiated connective tissues disease, with anti-ro. I have lung involvement, raynauds and mechanics hands. I think they tested anti Jo and it was negative, but I need to push for more testing.
I’m waiting to see the lung specialist. I’m just worried hydroxychloroquine won’t stop the lung inflammation 😔
Becca, I'm glad you're staying informed and advocating for your care! Yes, anti-ro is one of the autoantibodies that is also affiliated with antisynthetase syndrome. Get into that pulmonologist and get your baseline PFTs (pulmonary function tests) those will help a lot in your continued care. Understanding what lung function you're starting with (and perhaps doing some imaging (CTs give a better picture than X-Rays) will give you some insight as to whether there is lung involvement. It's true, hydroxycloroquine does not slow the progression of scar tissue in the lungs. However, talk to your rheumatologist or GP about NAC. [I'm not a doctor, don't take medical advice from me..] It's a supplement that is now in trials for antisynthetase pulmonary fibrosis. My pulmonologist recommends taking 600mgs 3x/day to slow the progression of lung disease. Best wishes and touch base if you want support. Sending gentle hugs!
Hi Annette, thank you so much for the advice. I will definitely ask about the NAC. I’m booked for more lung investigations in November and the wait is quite frustrating. My mum bless her keeps calling the hospital to see if there’s any cancellations.
@@beccafranklin6683 I'm glad you're booked for more thorough testing. If you're able to breathe right now, you should be able to wait until November, but bless your mama for making those calls. You're lucky to have someone helping you advocate!
Sending gentle hugs. A
Glad to find this video! All of the above and alsi ild and sjogrens....any tips on helping w the cracking skin on fingertips. Doctors see it as the least of my worries, but it is so painful and affects my quality of life daily. Aside from high doses of prednisone nothing helps. Any product, supplements or meds that have helped?
Ohhhhh Courtney!!! I'm so sorry to hear you're experiencing Mechanic's Hands. The swelling, cracked fingertips, and soreness... it's tough to explain how awful it is to someone who hasn't experienced it. The short answer is, no, I haven't found any good remedy. High dose predisone is the ONLY thing that ever make a REAL difference for me. I've tried "O'keefs Working Hands" and wearing Vasoline under cotton gloves at night. Those helped marginally with the dryness/cracking, but nothing but the big guns really resolved the problem.
I was diagnosed with lupus and ASS in 2022 and it has been a journey with the cellcept and steroids. Through Jesus trying to stay sane n positive
AGREED! It is difficult (and sometimes not possible) to stay positive in the face of what this illness has to throw at you! Me and cellcept were NOT friends and, well, you know the ride that prednisone puts you on...
What I can tell you is that there are ways to get this under control. It has take me YEARS and lots of work -- both personally, and with my physicians, but I've now found some equilibrium, where I don't feel like the meds or the illness are wreaking havoc at all times. This is a relapsing/remitting condition and there are ways to get to remission. Hang in there and reach out if you want chat. It is so complex and isolating but there are ways through.
Best!
I was just diagnosed with A.S.S. a month ago after being treated for lupus for 4 years😢. I also have all the symptoms you described except ILD. However, I may have autoimmune hepatitis. Has anyone else had liver issues associated with their autoimmune disease???
Deanna, oh sweetheart, what a lot! I'm so sorry you were misdiagnosed. I wish that was uncommon. These diseases are so rare I expect a rheumatologist could go her whole career and not have an A.S.S. patient on their roster -- they don't expect to see us and so they don't. However, I'm glad you're getting treated NOW.
One thing about not having ILD -- you may request to get PFTs (pulmonary function tests) done NOW so you have a baseline. Because this disease so often comes for the lungs at some point, it's helpful to know what your starting point is/was.
Regarding your liver. I don't have a lot of experience with this so I can't say much except that you can not be the first. If your doc doesn't have experience and you are able you might consider traveling. I travel 5.5 hrs away to see a specialist who KNOWS what they're doing with my diseases and isn't just reading the same journal articles I am. Also, because the meds they give us are often so toxic, you want to make SURE they're protecting your sweet liver. Get good care.
Sending gentle hugs and glad you're now treating the *actual* problem!
💞
Im a 17 year old male with cracking of skin on the hands, and I have had this on my hands since around 16. I have no issues with lungs or muscles. Could this be ASS?
Amaan, what a good question. I'm not a medical professional so definitely talk to your doctor about your symptoms!
The condition "mechanic's hands" accompanies my disease. I don't know if it can show up on its own. You might look around. In addition to cracking skin, it causes thickening of the skin, the fingers to swell painfully and the inability to bend or use your fingers very much -- is that consistent with your experience?
I do have ASS all of those symptoms you mentioned I started with severe carpal tunnel in both
hands and had surgery also other symptoms include, dry eyes and mouth and some dysphagia.
boooo! I'm so sorry. Do you think the carpal tunnel was at all related or just a coincidence that it started prior to the onset of your illnesses? Has the dysphagia been progressive? Relapsing/remitting? I hope you're finding light in your days in the midst of what it takes to manage this difficult set of illnesses. Sending gentle hugs.
Please discuss sjogrens w your dr. It can be misdiagnosed from the pain as carpeltunnell, but the dryness is another symptom.
Ive been diagnosed with ASS with ILD. Has anyone found supplements and natural treatments to help?
That's a great question! I don't know of any supplements that have been *proven* to work. But again -- we are a rare disease so who's testing things with our population???
My rheumatologist wonders whether either creatine powders or collagen taken regularly can help with the muscle wasting part of ASS. Additionally, my pulmonologist has had me taking 600mg of NAC 3x/day for years for lung function. However, I'm not a physician and you should talk to your health care providers before making any changes to your supplements, etc.
😉
Best wishes and hope you find solutions!
I also suffering from ASS😢
I'm so sorry to hear that. How are you managing? Have you been able to halt or slow the disease progression? Where did it start? With one of the myosotises?
I have Antisynthetase PL7
Oh Janice, thanks for responding here. I'm so sorry you, too have this complex and difficult disease. Have you been able to find stability? Were you diagnosed first with one of the myosotis's?
I also have PL7
ASS warrior here!!! 😂
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