Hi, you are most definitely not alone. i had psoriasis as a child and through my teens but it faded so that it was no longer an issue. I am now 44 and have been diagnosed with psoriatic arthritis for roughly 3 years. I was started on methotrexate and was on that for about 2 and a half years but i felt that although it seemed to work in the beginning its effects start to wear off and i felt like i was living in a fog. Please dont let that put you off though as it is different for everybody. I chose to come off the methotrexate after a discussion with my consultant and was started on Leflunomide which i have no been taking for roughly 3 months and it is definitely helping. I had chronic pain in my knees and elbows and they are both almost pain free at the moment although i am currently having a flare in my hands which is hard to deal with. The hardest thing i had to deal with was giving up work, i have been a home carer for 25+ years and due to pain and fatigue i could no longer do it.. I tend to be able to do small jobs around the house in the mornings but then end up sleeping most of the afternoon away. I wish you well with your treatment and hope you get the results you are looking for. Please never feel alone on your journey. If you want support you are welcome to send a friend request. There is also a fantastic site that i found that you might find useful, here is the link: psoriatic-arthritis.com/community/. I hope it helps. Take care of yourself, Leigh.
Yes...i have psoriasis and psoriatic arthritis, psoroasis at 12 for me and psoriatic arthrits in my early teens. I hurt. I will be 55 in Nov 2018. Just hurt. Hereditary
Thankyou for sharing 😁 I was diagnosed at the start of this year. I have 4 auto immune diseases and I just assumed the arthritis and psoriasis would be the least of my worries. I've already figured out that it isn't the case. I've created a channel to talk about my symptoms and how I feel they effect others. I've only uploaded 3 videos, hoping to do more very soon
I also have both and got them at the same time at 50 years old! I’ve done so much research after seeing 15 Doctors. I have not found much relief at all I’ve been taking 8 pills of methotrexate a week and was getting regicide infusions but now I am getting simpering asria infusion. Joints have been so severe and crazy how it all came on at the same time. Scalp is so severely painful everyday. Best of luck
I’ve had psoriasis/eczema since I was born. 4 years ago, at age 16, I started having extreme pain in my hips, knees, and spine. Tests after tests were performed and bam...suddenly the diagnosis was psoriatic arthritis. I’m glad someone else had the same experience of young diagnosis.
You are correct. They are only a few of us with both psoriasis and PsA. The psoriasis started in 2009. It started behind both ears. Then the top of my head. It was maddening how itchy it was. I finally went to my dr who called it eczema. Then, the next few years, I had patchy areas on my knees and even down to my shins. Also they were on my elbows and my back. The dr referred me to a dermatologist who did a punch biopsy and sent it off to the lab and that’s when I was diagnosed with psoriasis. He ordered creams and solutions for my scalp. Neither worked. A few years later, PsA started with very painful back, knees, my toes would become red and so painful.At times I could barely walk. I just thought it was old age as I was in my 30’s. Then sausage fingers started. That was finally the time my dr realized it was PsA. He referred me to a rheumatologist. He did some blood work. Started me on methotrexate which I’m still on. I had several trials of biologics that didn’t work. Finally, he started me on Humira and that was a miracle drug for me. It took care of the psoriasis and the PsA. So I was on that for a great 5-6 years with no flare ups. Until 1 day 3 years ago it stopped working. So He stopped humira and started me on various other biologics all have failed. I am currently on Cosentyx injections and I have hopes. I am finding relief from this. He just increased my dose and I can say that it is helping. If I have flare up that the injection doesn’t help, I can take prednisone but I can’t take this for too long because it raises my blood sugar as I’m diabetic. It’s always good to hear that we are not alone in this.
Thank you for sharing your story. You are right, it is hard to find people sharing their story on youtube. My psoriasis started when I was about 15 years old on my scalp and it spread over time. After I had my first child at 24, I started to get more skin flare ups and I started to develop Psoriatic arthritis in my fingers. Then right before getting pregnant with my second child at 27 years old, I thought I had broken one of my toes and it turned out it was psoriatic arthritis. I also started on methetrexate and now I take Stelara which is a biologic injection. I was also unable to walk after my second child and it began to spread to other limbs and also my skin began to get worse too. I have been on the biologics for about 2 years now and it has seemed to help a lot. My skin is 40% clear and my arthritis is better but not completely better and I still get fluid in my knee and lots of pain but not near as bad. I will be 30 years old in February and have never met or heard someone with almost the conditions I have had at almost the same age. I am so thankful you have reached out and made this story, it really makes me feel like I am not alone in this. I am sorry to write such a long message. This is just something that I think more people should share to empower others that there is hope and to not give up.
I am so, so sorry that it has taken me so long to reply to your comment. I think I've just been caught up in getting used to the medication and handling the side effects. Not to mention the fatigue. But, thank you so much for commenting and sharing your story. We have really similar stories and it's nice to know that other people my age have it, that I'm not alone (although of course I'm sorry that you're suffering with it). How do you manage it all with young children because that's something I struggle with? I find it heartbreaking when I have to tell them that I can't do something with them because of the pain or side effects of methotrexate. The methotrexate is helping now but I'm still struggling with side effects so I've just switched to injections instead. Also happy birthday for this month!
I healed my psoriatic arthritis with Diet/lifestyle changes , i take out all that toxic foods and that helps big time, i am a lifer since birth with psoriasis 50 years now and psoriatic arthritis for near 16 years, its what we eat that can cause inflammation and make it worse , i could give a big list of petential bad foods, it would be long though,, I wish you all well :)
Hi John, I wish it were that simple! I have managed my PsA with diet and lifestyle changes most of the last 15 years since diagnosis..... however I got a nasty flu end of September last year which triggered a flare and I have been in pain with one joint or another ever since. I suffer more with enthesitis, tendinitis and bursitis and its looking likely that I am going to have to try the nasty chemical route to get it back under control. I am unable to eat wheat, tomatoes, oranges or lemons due to allergy (non-anaphylactic) and I choose not to eat sweets/cakes processed sugary foods or the nightshades (except white potato). Cutting out all of these foods made a huge difference but it just takes a trigger and I have found that you can end up back at square one.
@@zaradickinson So, really, you can eat white potatoes - and zero negative reaction? Do you eat the skins? And which ones have you find best/nonreactive: yukon (soft skins?) or russets, etc. (tough skins). Thanks much if you find this. I am afraid that I eat various nuts, and I think some of them cause me great harm. I need to be more scientific, take ALL out, and replace one by one over time. I find this difficult. Of course, no sugars, minimal high fructose fruits, I skip eggs/dairy (EXCEPT my little bit in coffee in AM's - and I wonder if the coffee AND/OR the half n half are my waterloo? - I give me the excuse 'it is so little' . . but I guess it takes almost nothing to get into the wrong places/cause inflamm.
This disease is horrible. I have it too, I just started Humira I hope this helps. Methotrexate was awful I will never take that again. You are so young, take care of yourself!
I agree, Kerry. It seems cruel and unusual that the establishment starts patients w/MTX, though it's known that PsA is not RA, and mtx is by far less likely to work. It's the insurers who don't want to fork out, in order that we go straight to testing various biologics. BTW have you found one that works for you yet? I have yet to find success, have tried emb, coxyn, and humir. (abbreviated for some sort of privacy out here in the world of alphabet. Right-o. I am 60 and live in the nw, for some reason thought you might be closer to my age/onset than the sweet young mother who created the video. (I too have no acquaintances with whom I can share this experience, thus wouldn't mind a phone conversation someday with a 'late onset' type such as myself (only 2+years in, and the progression is fairly significant. Are you/anyone really working with diet as well? I have been, but the result is a lot of lost weight (much too much) as low inflamm foods are pretty low caloric density. Any ideas, anyone? -gene (eugienie etc is pseudo name) I would be very happy to share directly/connect with older (over 40?) onset folks, where the PsA is much worse than the skin issues, as is my case. Thanks, and best to all here.
@Mary Austin is Hi there, this sounds 'too good to be true'. Thank you for your response, but are you saying a TOPICAL application 'cured' this autoimmune issue of yours? For me it is mostly PsA, but affects exterior areas as well. So, could you give example of types of herbs this fellow had you INGESTING, that you think were helpful? Just one or two please, you don't need to divulge his whole treatment to me, I understand. Thanks! Magic cures are always interesting. Personally I am hoping that autoimmune disease is FINALLY addressed by the medical community in a very big way as COVID lands so many citizens around the world in the sad condition of auto-immunity. A nasty state of affairs to head to the grave with . ...
I hated methotrexate. Hated every minute of it. On my 3rd med and it’s still not working. Never thought I would be on meds. I hate it so much. I would probably accept it but I am taking them and still in pain. Mobility is awful and I work on my feet all day!
I loved being outdoors and working outdoors. I would walk everywhere all the time, I would climb ladders and stairs all day at work. I also get psoriasis over my lower back and it still affects my ability to walk. I remember waking up with numb or tingling legs a few times. When it spread near my eyes my vision started getting blurry and the ocular lights started happening. My vision went crazy for a bit. Methotrexate has helped make it manageable but you have to be careful with what effects the liver. Even my fingers are slower with video games and guitar playing let alone working with hand tools like I did for years.
Thank you so much for this video... I could't cope with metotrexate, made me fell very depressed (even more than usual). I use cbd oil now, wich helps, but I can't pay the more concentrated version of the oil. Made some major changes in my diet, no bread, no sugar, no cakes... it's hard, many sacrifices for little gain, but that's the path. Be strong, you not alone. Kind regards
You are very fortunate that your life has not been impacted it a worse way. I begin having symptoms when I was about 39. But by the age of 47 I no longer could drive or walk. I spent two years literally on the couch. I had to quite a career I loved. My spine is extremely damaged but I flare in all my joints. I am now 54. I am on disability. I take methotrexate and injections. Nothing helps. Oh and my skin was involved. It started in my ears. And mostly my head. I have patches. It have effected every aspect of my life my family. And my mother has rheumatoid arthritis my oldest daughter has psoriatic. And all of my grandmother s on my mom’s side as far back as anyone can remember had it. My mother’s mom had psoriatic. It was a lot like me. She was disabled in her spine. But had pain all over and skin problem s. Right at the moment I hate psoriatic arthritis. I am sick because of the methotrexate. Severe weather effects mine. It’s very cold here in Tennessee and in the summers we have very high humidity that really makes me hurt. We are considering changing our life style to travel some to avoid extreme weather. We can’t do that right now. We need to stay put. My husband being the only bread winner he is putting our daughter through pharmacy school. And we have about six yrs to go. She is my youngest. She is lovely and worth all the effort. I am very religious so I will say God bless you. Keep us posted. Leslye
I'm sorry it's taken me this long to reply but thank you so much for commenting and for sharing your story. I'm very aware that I am lucky that it's not worse for me but also still struggle keeping up with two small children and know that my arthritis could get much worse. I'm so sorry that your life is so impacted by the disease and I hope that you get some relief soon. Thank you again for sharing.
Cabin Life at Eden Springs 1) illness is not a competition and suffering is relative, and everyone’s experience is valid. 2) ask your doctors about biologic treatments, they’re newer than DMARDs (methotrexate), a lot of people have less side effects on them and there is some evidence that they are better in treating the disease. Might work for you too. best of luck
Cabin Life at Eden Springs i am your age as well. I hurt...i am 20 years at my job/ office, its hard to pretend to be healthy like lots of my co workers. I hurt. 😣
Thanks for this video. It showed me that there are others like me. I've been suffering from scalp psoriasis since I was 15. Recently I've developed it on my arms and now my leg. I also suffer from arthritis in my knees, lower back and neck. I don't know if the arthritis is a result of scoliosis or my psoriasis but it's having a huge impact on my life! This recent flare-up is debilitating. I'm embarrassed to wear short sleeves and shorts!
TheGoldenpen Aris Please see a rheumatologist, if your arthritis is due to psoriasis is can cause permanent disabling joint damage. It is better safe than sorry
Seems to me that no one with psoriasis knows anyone else with psoriasis, I personally don't know anyone who has it either lol. I've had it since I was 15, I am now 40. After watching your video I have come to the conclusion that I should check if I have psoriatic arthritis to. I live in Hawaii, born and raised and been wearing long sleeve t shirts and pants since I was 15. My psoriasis is really aggressive, over 90% of my body. I went from using methotrexate at 15, then to clobetasol ointment and now I currently use Halobetasol ointment which seems to work really good, but I just can't get enough medicine to last the month so by the time the month ends and I run out of medicine it just gets worse all over again. Thanks for making the video, I truly always feel very alone. Aloha.
Thank you for replying to my video, I'm so sorry that it took me this long to reply. It's crazy how you never see anyone else with psoriasis. I don't know anyone in real life either but there must be people around me suffering from it too. I think it would be a good idea for you to check to see if you have psoriatic arthritis too and I'll keep my fingers crossed that you don't.
Hawaiian Style Psoriasis severity is not linked to PsA/PsA activity. You can have awful psoriasis and never have PsA, you can have very mild and limited psoriasis and have extreme deforming PsA.
@@felicityaeh This is most certainly TRUE. Most would not think I have psoriasis, but my PsA is slowly overtaking fingers/hands/other joints and tendons. Sad.
Hey, I have psoriasis and psoriatic arthritis. I was diagnosed at 14 and I'm about to turn 20. I have been on methotrexate and a few biologicals for 7 years. If you want to talk about any of it let me know xx
Hi jessica, my foot has swollen up a few months ago and no matter what painkillers i take it wont heal. Now my knee joints are hurting and my other foot. Im seeing a specialist next week.. I first thought it was gout but now think it maybe psoriatic arthritis as i have recently also been diagnosed with scalp psoriasis. If the speicialist gives me the psoriatic medication, will i get better???
JalandharShere So for the arthritis they usually treat it with methotrexate which is an immunosuppressant, while that gets into your system they can also use short term steroid treatments such as joint injections or infusions. Then once the methotrexate is working and in your system properly then they can look at potentially partnering up with a biological drug. As a side note this is only my experience with treatment and not the same as everyone else's. So for me the methotrexate did make a massive difference in my skin and joints it just took a long time. As for the biologicals they are great for getting those last bits of inflammation. With both my medications I don't have any joint inflammation and my skin only affects a small area above one of my ears which for is completely manageable. Pain wise I can't properly answer because I also have joint hypermobilty so I'm in pain anyway but no where near as much when my joints were inflamed. Everyone's arthritis is different. Some people find it easier to manage with medications but others have a more aggressive arthritis which is more difficult to manage. If you have any more questions just ask 😊 xx
Hey, thanks for commenting and so sorry that it's taken me so long to reply. I guess I've still been caught up in it all. I've just started on the mtx injections this week to see if they help reduce the nausea but the mtx does seem to be helping my joints. How do you get on with the mtx because most of the stories I come across are really negative!
Very Much So Hi sorry for the late reply. I get on with it at the minute. I'm on 20mg a week and that is a level of nausea I can deal with. Plus I find doing my meds earlier in the evening then going to bed means I wake up the next morning feeling better. How're you getting on with it? xx
@@jessicarosser2855 Thanks for going into your success w/MTX etc. I wonder, did you find the texture and quantity of your head hair reduced/ruined, as is mine? Love to hear back from you on that one.... did it start to fall out, and then less so. Or you did not have this problem at all? Also, did you start from a healthy bmi? low or heavier weight? I think the inflamm from adipose tissue has an impact on which treatment causes greatest benefit. Sadly I am quite thin from removing so many potentially inflammatory foods - I have almost zero body fat : (. Thus what works for a nice heavy person would probably not help me in the same way/as much. Or at all . . . who knows. THANKS!
Iness Advanced Daily Biotic Lactobacillus Rhamnosus along with a low carb diet has cleared my psoriasis on my skin 98 percent and eased my psoriatic arthritis, pain was 8 now 1. It was a slow process, but it worked for me over the last year. I drink lemon water to maintain low carb for the long haul. Everyone has candida used in digestion but when good gut bacteria is destroyed it is not contained, carbs turn to sugar and feed the candida fungus. I eat meats, green vegetables, cauliflower mash potatoes, eggs, berries, cheese, nuts, olives, make crackers with almond flour.
Wonderful to hear your story. Plant and fruit diet except for the night shades plant are supposed to be useful. I have had psoriasis since about 3 years old. I am now much older and have been diagnosed with Psoriatic Arthritis. I’ve been on methotrexate for 7 years now on a low dose. I have however refrained from taking this since my blood count has not been normal after several stop & starts.
Thank you for sharing, I'm trying to find a diagnosis. I think I might have posriatic arthritis, waiting for my doctor to confirm. I'm 37 and I started having terrible joint pain after pregnancy at 35. I'm hoping to find answers.
I am convinced that I must have psoriasis and psoriatic arthritis. I have crohns and non-specific non-deforming arthritis, dry eyes, nose and mouth, very faint eyebrows, patches of red skin that randomly appear, at times very greasy hair behind my ears or at the underside of my hair or on my neck, recently red blotches near my nose are getting a lot worse, occasional pomplyyx eczema to my hands, dermatitis on my forehead, little red bumps over my chin, backs of arms and legs; skin on hands has been very sensitive and cracks and bleeds. The hair only clears with Tgel occasionally. I used to use Nizoral shampoo as a child and my legs swelled up for 6 weeks before crohns diagnosis in 2010. I take sulfasalazine, Azathioprine, nasal spray and eye drops, multivitamins, a low lactose diet, avoid foods that affect my crohns. I will make a GP appointment and mention to my Rheumatologist if unsuccessful with GP. Thank you.
Emily Swann With Chrons it is common to get arthritis called enteric arthritis. It is a type of spondyloarthritis related to bowel disease, treatment is treating the bowel disease effectively. However other spondyloarthropathies (eg ankylosising spondylitis and psoriatic arthritis) can occur, as can other autoimmune disease like sjogrens, lupus, rheumatoid arthritis. If the treatment your on for your bowels isnt helping the arthritis it’s probably not a spondyloarthritis as the treatment for IBD is the same as for them. Look into other autoimmune diseases and talk to a rheumatologist.
@@felicityaeh Hmm. Never heard of that nomenclature 'enteric arthritis'. It seems that since all of us notice SOME improvement if we remove all the possible sources of food inflammation - perhaps ALL of us could call our problems enteric arthritis! Which is sad. No more fun eating....
Eugenie Breida It's associated with inflammatory bowel disease (crohns and ulcerative colitis) not any food. Also not everyone experiences some improvement with cutting any food out. I certainly haven't despite trying to cut out nearly all types of food at some point or another in the hopes something would help. Never helped me in the slightest although I really wish it would. Enteropathic arthritis is a specific thing not just arthritis associated with food, so we could definitely not all say we have it. It is easily distinguishable from psoriasitic arthritis through the timing and presentation linked with flare ups of IBD.
@@felicityaeh Thank you felicity. I appreciate your trying to explain this to me. I am not sure I entirely understand. But in any event, my bowel symptoms are so varied that I would say LIKELY they are somewhat linked to food intake - but I surely have not figured out yet 'what to eat' for reliable digestion - and I've been at this almost 3? years. My stools are all over the map, mostly loose and often suggesting that I lack bile (I think) in that color is lacking - if I do not 'eat my greens' the color is not normal. btw I am underweight, so that might be suggestive of poor absorption too. I think yes. I wish I could gain weight . . .definitely I have PsA - have ALL the signs. And dry eyes/mouth/skin/hair (falling out as well). etc.
Eugenie Breida Look up enteropathic arthritis. I'm sorry you're struggling with bowel symptoms, they are really an awful thing to deal with. Not all bowel issues can cause enteropathic arthritis though.
I have it two and i have bad pain in my feet and fingers and my spine I'm 60 have posarioes all my life .i was on treatment for it but had to stop it .because i keep getting infection in my bladder .how do you cope when you have a flare-up i stay in bed .
I’ve had PsA for three years, and have been on methotrexate since. I’m hoping to have children in the future but I’d have to stop the mtx six months before trying to get pregnant. That terrifies me since I was terribly I’ll before starting the mtx. And I can’t imagine being pregnant with a flare up... sigh... thanks for sharing your story.
I’m lucky I have one child already, but this also concerns me when thinking about having another one - sometimes I think it might not ever happen as a result of all the drugs etc
Hi dear, thanks for sharing your video. Im thinking to vlog also my skin disorder severe psoriasis. We have the same kind of story but when i learned to accepted it and embraced this illness i learned to managed without taking any medicines. It only triggered when im stressed and now the weather changed .
I have had Psoriasis since i was about 14, im now 53 and still suffer. Like you its on my knees, elbows, hair, ears and also my eye brows. I have been having pain in my joints for over 4 years now but everytime i mention it to my doctor they seem to shrug it off as if its in my mind. My finger joints are so sore some days that i cant grip like i used to. How do people get through to their doctor that they are sure they have Psoriatic Arthritis. Like most Doctors now they seem to not want to send you to see anyone regarding any problems and try and palm you off with other things. At the end of the day i wouldnt send my car to a vets for a diagnosis about a problem. What do i have to do to convince the doc about my problems. Thanks
kenneth robertson What country are you from as healthcare systems vary? General advice is just keep going to you doctor, saying outright that you believe you have psoriatic arthritis and need to see a rheumatologist. Explain your worries openly. If they refuse to refer you onwards say “Can you write i my notes that you are refusing to help me despite the possible risk of permanent joint damage” word for word, it’ll make them act as they will not want to write it down.
Do you have a snap chat? I'd love to have a friend to chat with about our mutual PsA... Name's Monique and I'm from Southern California. I was diagnosed at 19.
I am 58. Really struggling to walk. Taking cocodamol at night. I have had Psoriasis since I was 14 and joint pain for a considerable time. They have just said psoriatic arthritis. I can hardly walk. Very frustrating. I just need to adjust life accordingly because at the moment I am unable to go out on my own, my husband has metalwork in his leg and to be quite honest, having just lost my job things are tight. I can and will cope with anything but if you have any advice please share it.
I also have both and got them at the same time at 50 years old! I’ve done so much research after seeing 15 Doctors. I have not found much relief at all I’ve been taking 8 pills of methotrexate a week and was getting regicide infusions but now I am getting simpering asria infusion. Joints have been so severe and crazy how it all came on at the same time. Scalp is so severely painful everyday. Best of luck
Hi, you are most definitely not alone. i had psoriasis as a child and through my teens but it faded so that it was no longer an issue. I am now 44 and have been diagnosed with psoriatic arthritis for roughly 3 years. I was started on methotrexate and was on that for about 2 and a half years but i felt that although it seemed to work in the beginning its effects start to wear off and i felt like i was living in a fog. Please dont let that put you off though as it is different for everybody. I chose to come off the methotrexate after a discussion with my consultant and was started on Leflunomide which i have no been taking for roughly 3 months and it is definitely helping. I had chronic pain in my knees and elbows and they are both almost pain free at the moment although i am currently having a flare in my hands which is hard to deal with. The hardest thing i had to deal with was giving up work, i have been a home carer for 25+ years and due to pain and fatigue i could no longer do it.. I tend to be able to do small jobs around the house in the mornings but then end up sleeping most of the afternoon away. I wish you well with your treatment and hope you get the results you are looking for. Please never feel alone on your journey. If you want support you are welcome to send a friend request. There is also a fantastic site that i found that you might find useful, here is the link: psoriatic-arthritis.com/community/. I hope it helps. Take care of yourself, Leigh.
Thanks so much for your link to the community group!
Hello I live with Psoriatic Arthritis and psoriasis as well. And to hear your story help me know that I am not alone. Thank you.
Charlene Gubitosi Thank you so much for commenting, this is exactly why I wanted to make a few videos about it as it feels very lonely sometimes. x
@Mary Austin is thank you so much for your kindness 💕
Hi Amy!!! I’m also Amy. I’m thrilled to find a channel on this subject! Sending love and blessings to you.
Peace be with you sister
I hope this message finds you in the best of health and faith, God willing.
Thank you for this video sweetheart... I'm a 32 year old female who also Suffers from this and idk anyone else with it 🙏💕
Yes...i have psoriasis and psoriatic arthritis, psoroasis at 12 for me and psoriatic arthrits in my early teens. I hurt. I will be 55 in Nov 2018. Just hurt. Hereditary
PS not curable it is hereditary...
You are not alone with PsA. Thank you for sharing your story! Please make a video of how PsA impacted being a mother.
Thankyou for sharing 😁
I was diagnosed at the start of this year. I have 4 auto immune diseases and I just assumed the arthritis and psoriasis would be the least of my worries. I've already figured out that it isn't the case.
I've created a channel to talk about my symptoms and how I feel they effect others. I've only uploaded 3 videos, hoping to do more very soon
Thank you for sharing your story. I also have psoriasis and psoriatic arthritis. It’s not easy to deal with. I appreciate your video and bravery! ❤
I also have both and got them at the same time at 50 years old! I’ve done so much research after seeing 15 Doctors. I have not found much relief at all I’ve been taking 8 pills of methotrexate a week and was getting regicide infusions but now I am getting simpering asria infusion. Joints have been so severe and crazy how it all came on at the same time. Scalp is so severely painful everyday.
Best of luck
I’ve had psoriasis/eczema since I was born. 4 years ago, at age 16, I started having extreme pain in my hips, knees, and spine. Tests after tests were performed and bam...suddenly the diagnosis was psoriatic arthritis. I’m glad someone else had the same experience of young diagnosis.
Had psoriasis over 20yrs and the arthritis about 6yrs. Excellent video 😀
Psoriasis ka 100% cure
You are correct. They are only a few of us with both psoriasis and PsA. The psoriasis started in 2009. It started behind both ears. Then the top of my head. It was maddening how itchy it was. I finally went to my dr who called it eczema. Then, the next few years, I had patchy areas on my knees and even down to my shins. Also they were on my elbows and my back. The dr referred me to a dermatologist who did a punch biopsy and sent it off to the lab and that’s when I was diagnosed with psoriasis. He ordered creams and solutions for my scalp. Neither worked. A few years later, PsA started with very painful back, knees, my toes would become red and so painful.At times I could barely walk. I just thought it was old age as I was in my 30’s. Then sausage fingers started. That was finally the time my dr realized it was PsA. He referred me to a rheumatologist. He did some blood work. Started me on methotrexate which I’m still on. I had several trials of biologics that didn’t work. Finally, he started me on Humira and that was a miracle drug for me. It took care of the psoriasis and the PsA. So I was on that for a great 5-6 years with no flare ups. Until 1 day 3 years ago it stopped working. So He stopped humira and started me on various other biologics all have failed. I am currently on Cosentyx injections and I have hopes. I am finding relief from this. He just increased my dose and I can say that it is helping. If I have flare up that the injection doesn’t help, I can take prednisone but I can’t take this for too long because it raises my blood sugar as I’m diabetic. It’s always good to hear that we are not alone in this.
I also was diagnosed with PSA, I'm sorry your having to go through these rough times with PSA.
Thank you for sharing your story. You are right, it is hard to find people sharing their story on youtube. My psoriasis started when I was about 15 years old on my scalp and it spread over time. After I had my first child at 24, I started to get more skin flare ups and I started to develop Psoriatic arthritis in my fingers. Then right before getting pregnant with my second child at 27 years old, I thought I had broken one of my toes and it turned out it was psoriatic arthritis. I also started on methetrexate and now I take Stelara which is a biologic injection. I was also unable to walk after my second child and it began to spread to other limbs and also my skin began to get worse too. I have been on the biologics for about 2 years now and it has seemed to help a lot. My skin is 40% clear and my arthritis is better but not completely better and I still get fluid in my knee and lots of pain but not near as bad. I will be 30 years old in February and have never met or heard someone with almost the conditions I have had at almost the same age. I am so thankful you have reached out and made this story, it really makes me feel like I am not alone in this. I am sorry to write such a long message. This is just something that I think more people should share to empower others that there is hope and to not give up.
I am so, so sorry that it has taken me so long to reply to your comment. I think I've just been caught up in getting used to the medication and handling the side effects. Not to mention the fatigue. But, thank you so much for commenting and sharing your story. We have really similar stories and it's nice to know that other people my age have it, that I'm not alone (although of course I'm sorry that you're suffering with it). How do you manage it all with young children because that's something I struggle with? I find it heartbreaking when I have to tell them that I can't do something with them because of the pain or side effects of methotrexate. The methotrexate is helping now but I'm still struggling with side effects so I've just switched to injections instead. Also happy birthday for this month!
I healed my psoriatic arthritis with Diet/lifestyle changes , i take out all that toxic foods and that helps big time, i am a lifer since birth with psoriasis 50 years now and psoriatic arthritis for near 16 years, its what we eat that can cause inflammation and make it worse , i could give a big list of petential bad foods, it would be long though,, I wish you all well :)
Hi.. can send me ur list of food pls.. @john felstead
Hi John, I wish it were that simple! I have managed my PsA with diet and lifestyle changes most of the last 15 years since diagnosis..... however I got a nasty flu end of September last year which triggered a flare and I have been in pain with one joint or another ever since. I suffer more with enthesitis, tendinitis and bursitis and its looking likely that I am going to have to try the nasty chemical route to get it back under control. I am unable to eat wheat, tomatoes, oranges or lemons due to allergy (non-anaphylactic) and I choose not to eat sweets/cakes processed sugary foods or the nightshades (except white potato). Cutting out all of these foods made a huge difference but it just takes a trigger and I have found that you can end up back at square one.
@@zaradickinson So, really, you can eat white potatoes - and zero negative reaction? Do you eat the skins? And which ones have you find best/nonreactive: yukon (soft skins?) or russets, etc. (tough skins).
Thanks much if you find this.
I am afraid that I eat various nuts, and I think some of them cause me great harm. I need to be more scientific, take ALL out, and replace one by one over time.
I find this difficult.
Of course, no sugars, minimal high fructose fruits, I skip eggs/dairy (EXCEPT my little bit in coffee in AM's - and I wonder if the coffee AND/OR the half n half are my waterloo? - I give me the excuse 'it is so little' . . but I guess it takes almost nothing to get into the wrong places/cause inflamm.
This disease is horrible. I have it too, I just started Humira I hope this helps. Methotrexate was awful I will never take that again. You are so young, take care of yourself!
I agree, Kerry. It seems cruel and unusual that the establishment starts patients w/MTX, though it's known that PsA is not RA, and mtx is by far less likely to work.
It's the insurers who don't want to fork out, in order that we go straight to testing various biologics. BTW have you found one that works for you yet? I have yet to find success, have tried emb, coxyn, and humir. (abbreviated for some sort of privacy out here in the world of alphabet. Right-o.
I am 60 and live in the nw, for some reason thought you might be closer to my age/onset than the sweet young mother who created the video. (I too have no acquaintances with whom I can share this experience, thus wouldn't mind a phone conversation someday with a 'late onset' type such as myself (only 2+years in, and the progression is fairly significant.
Are you/anyone really working with diet as well?
I have been, but the result is a lot of lost weight (much too much) as low inflamm foods are pretty low caloric density. Any ideas, anyone? -gene (eugienie etc is pseudo name)
I would be very happy to share directly/connect with older (over 40?) onset folks, where the PsA is much worse than the skin issues, as is my case.
Thanks, and best to all here.
Methotrexate kills i took it 2 times for 3 months straight.
@Mary Austin is Hi there, this sounds 'too good to be true'. Thank you for your response, but are you saying a TOPICAL application 'cured' this autoimmune issue of yours?
For me it is mostly PsA, but affects exterior areas as well.
So, could you give example of types of herbs this fellow had you INGESTING, that you think were helpful? Just one or two please, you don't need to divulge his whole treatment to me, I understand.
Thanks! Magic cures are always interesting.
Personally I am hoping that autoimmune disease is FINALLY addressed by the medical community in a very big way as COVID lands so many citizens around the world in the sad condition of auto-immunity. A nasty state of affairs to head to the grave with . ...
I hated methotrexate. Hated every minute of it. On my 3rd med and it’s still not working. Never thought I would be on meds. I hate it so much. I would probably accept it but I am taking them and still in pain. Mobility is awful and I work on my feet all day!
I loved being outdoors and working outdoors. I would walk everywhere all the time, I would climb ladders and stairs all day at work. I also get psoriasis over my lower back and it still affects my ability to walk. I remember waking up with numb or tingling legs a few times. When it spread near my eyes my vision started getting blurry and the ocular lights started happening. My vision went crazy for a bit. Methotrexate has helped make it manageable but you have to be careful with what effects the liver. Even my fingers are slower with video games and guitar playing let alone working with hand tools like I did for years.
Thank you so much for this video... I could't cope with metotrexate, made me fell very depressed (even more than usual). I use cbd oil now, wich helps, but I can't pay the more concentrated version of the oil. Made some major changes in my diet, no bread, no sugar, no cakes... it's hard, many sacrifices for little gain, but that's the path. Be strong, you not alone. Kind regards
Did the changes in diet help?
@@sriranjanis Yes, it can help fastway4you.com/how-can-diet-affect-psoriasis/
I have it also! Thanks for sharing.
Hi @Brenda H. Are u from California?
You are very fortunate that your life has not been impacted it a worse way. I begin having symptoms when I was about 39. But by the age of 47 I no longer could drive or walk. I spent two years literally on the couch. I had to quite a career I loved. My spine is extremely damaged but I flare in all my joints. I am now 54. I am on disability. I take methotrexate and injections. Nothing helps. Oh and my skin was involved. It started in my ears. And mostly my head. I have patches. It have effected every aspect of my life my family. And my mother has rheumatoid arthritis my oldest daughter has psoriatic. And all of my grandmother s on my mom’s side as far back as anyone can remember had it. My mother’s mom had psoriatic. It was a lot like me. She was disabled in her spine. But had pain all over and skin problem s. Right at the moment I hate psoriatic arthritis. I am sick because of the methotrexate. Severe weather effects mine. It’s very cold here in Tennessee and in the summers we have very high humidity that really makes me hurt. We are considering changing our life style to travel some to avoid extreme weather. We can’t do that right now. We need to stay put. My husband being the only bread winner he is putting our daughter through pharmacy school. And we have about six yrs to go. She is my youngest. She is lovely and worth all the effort. I am very religious so I will say God bless you. Keep us posted. Leslye
I'm sorry it's taken me this long to reply but thank you so much for commenting and for sharing your story. I'm very aware that I am lucky that it's not worse for me but also still struggle keeping up with two small children and know that my arthritis could get much worse. I'm so sorry that your life is so impacted by the disease and I hope that you get some relief soon. Thank you again for sharing.
Cabin Life at Eden Springs 1) illness is not a competition and suffering is relative, and everyone’s experience is valid. 2) ask your doctors about biologic treatments, they’re newer than DMARDs (methotrexate), a lot of people have less side effects on them and there is some evidence that they are better in treating the disease. Might work for you too. best of luck
Cabin Life at Eden Springs i am your age as well. I hurt...i am 20 years at my job/ office, its hard to pretend to be healthy like lots of my co workers. I hurt. 😣
Hey you can go for biologics.They can be life changing
Thanks for this video. It showed me that there are others like me. I've been suffering from scalp psoriasis since I was 15. Recently I've developed it on my arms and now my leg. I also suffer from arthritis in my knees, lower back and neck. I don't know if the arthritis is a result of scoliosis or my psoriasis but it's having a huge impact on my life! This recent flare-up is debilitating. I'm embarrassed to wear short sleeves and shorts!
TheGoldenpen Aris Please see a rheumatologist, if your arthritis is due to psoriasis is can cause permanent disabling joint damage. It is better safe than sorry
Seems to me that no one with psoriasis knows anyone else with psoriasis, I personally don't know anyone who has it either lol. I've had it since I was 15, I am now 40. After watching your video I have come to the conclusion that I should check if I have psoriatic arthritis to. I live in Hawaii, born and raised and been wearing long sleeve t shirts and pants since I was 15. My psoriasis is really aggressive, over 90% of my body. I went from using methotrexate at 15, then to clobetasol ointment and now I currently use Halobetasol ointment which seems to work really good, but I just can't get enough medicine to last the month so by the time the month ends and I run out of medicine it just gets worse all over again. Thanks for making the video, I truly always feel very alone. Aloha.
Thank you for replying to my video, I'm so sorry that it took me this long to reply. It's crazy how you never see anyone else with psoriasis. I don't know anyone in real life either but there must be people around me suffering from it too. I think it would be a good idea for you to check to see if you have psoriatic arthritis too and I'll keep my fingers crossed that you don't.
Hawaiian Style Psoriasis severity is not linked to PsA/PsA activity. You can have awful psoriasis and never have PsA, you can have very mild and limited psoriasis and have extreme deforming PsA.
Hawaiian Style i have it too .
@@felicityaeh This is most certainly TRUE. Most would not think I have psoriasis, but my PsA is slowly overtaking fingers/hands/other joints and tendons. Sad.
Me and my sister both have PsA diagnosis. I believe my father also has it. It can be inherited said my doctor.
Stay strong... I was diagnosed with PsA in June and am still learning.
Hey, I have psoriasis and psoriatic arthritis. I was diagnosed at 14 and I'm about to turn 20. I have been on methotrexate and a few biologicals for 7 years. If you want to talk about any of it let me know xx
Hi jessica, my foot has swollen up a few months ago and no matter what painkillers i take it wont heal. Now my knee joints are hurting and my other foot. Im seeing a specialist next week.. I first thought it was gout but now think it maybe psoriatic arthritis as i have recently also been diagnosed with scalp psoriasis. If the speicialist gives me the psoriatic medication, will i get better???
JalandharShere So for the arthritis they usually treat it with methotrexate which is an immunosuppressant, while that gets into your system they can also use short term steroid treatments such as joint injections or infusions. Then once the methotrexate is working and in your system properly then they can look at potentially partnering up with a biological drug. As a side note this is only my experience with treatment and not the same as everyone else's. So for me the methotrexate did make a massive difference in my skin and joints it just took a long time. As for the biologicals they are great for getting those last bits of inflammation. With both my medications I don't have any joint inflammation and my skin only affects a small area above one of my ears which for is completely manageable. Pain wise I can't properly answer because I also have joint hypermobilty so I'm in pain anyway but no where near as much when my joints were inflamed. Everyone's arthritis is different. Some people find it easier to manage with medications but others have a more aggressive arthritis which is more difficult to manage. If you have any more questions just ask 😊 xx
Hey, thanks for commenting and so sorry that it's taken me so long to reply. I guess I've still been caught up in it all. I've just started on the mtx injections this week to see if they help reduce the nausea but the mtx does seem to be helping my joints. How do you get on with the mtx because most of the stories I come across are really negative!
Very Much So Hi sorry for the late reply. I get on with it at the minute. I'm on 20mg a week and that is a level of nausea I can deal with. Plus I find doing my meds earlier in the evening then going to bed means I wake up the next morning feeling better. How're you getting on with it? xx
@@jessicarosser2855 Thanks for going into your success w/MTX etc. I wonder, did you find the texture and quantity of your head hair reduced/ruined, as is mine?
Love to hear back from you on that one.... did it start to fall out, and then less so. Or you did not have this problem at all?
Also, did you start from a healthy bmi? low or heavier weight? I think the inflamm from adipose tissue has an impact on which treatment causes greatest benefit.
Sadly I am quite thin from removing so many potentially inflammatory foods - I have almost zero body fat : (. Thus what works for a nice heavy person would probably not help me in the same way/as much. Or at all . . . who knows.
THANKS!
Iness Advanced Daily Biotic Lactobacillus Rhamnosus along with a low carb diet has cleared my psoriasis on my skin 98 percent and eased my psoriatic arthritis, pain was 8 now 1. It was a slow process, but it worked for me over the last year. I drink lemon water to maintain low carb for the long haul. Everyone has candida used in digestion but when good gut bacteria is destroyed it is not contained, carbs turn to sugar and feed the candida fungus. I eat meats, green vegetables, cauliflower mash potatoes, eggs, berries, cheese, nuts, olives, make crackers with almond flour.
Thanks for your testimony. I had same things rigger after delivery. My thyroid adrenals and hormones never recovered.
Thank you for sharing !! You are surely not alone ..
Hi i have the same thing ,now I'm 63 yrs old, and live in the US at Bismarck, Ar.
Wonderful to hear your story. Plant and fruit diet except for the night shades plant are supposed to be useful. I have had psoriasis since about 3 years old. I am now much older and have been diagnosed with Psoriatic Arthritis. I’ve been on methotrexate for 7 years now on a low dose. I have however refrained from taking this since my blood count has not been normal after several stop & starts.
Thank you for sharing, I'm trying to find a diagnosis. I think I might have posriatic arthritis, waiting for my doctor to confirm. I'm 37 and I started having terrible joint pain after pregnancy at 35. I'm hoping to find answers.
I am convinced that I must have psoriasis and psoriatic arthritis. I have crohns and non-specific non-deforming arthritis, dry eyes, nose and mouth, very faint eyebrows, patches of red skin that randomly appear, at times very greasy hair behind my ears or at the underside of my hair or on my neck, recently red blotches near my nose are getting a lot worse, occasional pomplyyx eczema to my hands, dermatitis on my forehead, little red bumps over my chin, backs of arms and legs; skin on hands has been very sensitive and cracks and bleeds. The hair only clears with Tgel occasionally. I used to use Nizoral shampoo as a child and my legs swelled up for 6 weeks before crohns diagnosis in 2010. I take sulfasalazine, Azathioprine, nasal spray and eye drops, multivitamins, a low lactose diet, avoid foods that affect my crohns. I will make a GP appointment and mention to my Rheumatologist if unsuccessful with GP. Thank you.
Emily Swann With Chrons it is common to get arthritis called enteric arthritis. It is a type of spondyloarthritis related to bowel disease, treatment is treating the bowel disease effectively. However other spondyloarthropathies (eg ankylosising spondylitis and psoriatic arthritis) can occur, as can other autoimmune disease like sjogrens, lupus, rheumatoid arthritis. If the treatment your on for your bowels isnt helping the arthritis it’s probably not a spondyloarthritis as the treatment for IBD is the same as for them. Look into other autoimmune diseases and talk to a rheumatologist.
@@felicityaeh Hmm. Never heard of that nomenclature 'enteric arthritis'. It seems that since all of us notice SOME improvement if we remove all the possible sources of food inflammation - perhaps ALL of us could call our problems enteric arthritis!
Which is sad. No more fun eating....
Eugenie Breida It's associated with inflammatory bowel disease (crohns and ulcerative colitis) not any food. Also not everyone experiences some improvement with cutting any food out. I certainly haven't despite trying to cut out nearly all types of food at some point or another in the hopes something would help. Never helped me in the slightest although I really wish it would. Enteropathic arthritis is a specific thing not just arthritis associated with food, so we could definitely not all say we have it. It is easily distinguishable from psoriasitic arthritis through the timing and presentation linked with flare ups of IBD.
@@felicityaeh Thank you felicity. I appreciate your trying to explain this to me. I am not sure I entirely understand. But in any event, my bowel symptoms are so varied that I would say LIKELY they are somewhat linked to food intake - but I surely have not figured out yet 'what to eat' for reliable digestion - and I've been at this almost 3? years.
My stools are all over the map, mostly loose and often suggesting that I lack bile (I think) in that color is lacking - if I do not 'eat my greens' the color is not normal. btw I am underweight, so that might be suggestive of poor absorption too. I think yes.
I wish I could gain weight . . .definitely I have PsA - have ALL the signs. And dry eyes/mouth/skin/hair (falling out as well). etc.
Eugenie Breida Look up enteropathic arthritis. I'm sorry you're struggling with bowel symptoms, they are really an awful thing to deal with. Not all bowel issues can cause enteropathic arthritis though.
Please do a follow up video
I just made a video on my channel about my treatment that is working very well. thanks for sharing.
Thanks 🙏🏼 in a flare now
I have it two and i have bad pain in my feet and fingers and my spine I'm 60 have posarioes all my life .i was on treatment for it but had to stop it .because i keep getting infection in my bladder .how do you cope when you have a flare-up i stay in bed .
Gr8 vid...your abeauitful galxxxx
I’ve had PsA for three years, and have been on methotrexate since. I’m hoping to have children in the future but I’d have to stop the mtx six months before trying to get pregnant. That terrifies me since I was terribly I’ll before starting the mtx. And I can’t imagine being pregnant with a flare up... sigh... thanks for sharing your story.
I’m lucky I have one child already, but this also concerns me when thinking about having another one - sometimes I think it might not ever happen as a result of all the drugs etc
Hi dear, thanks for sharing your video. Im thinking to vlog also my skin disorder severe psoriasis. We have the same kind of story but when i learned to accepted it and embraced this illness i learned to managed without taking any medicines. It only triggered when im stressed and now the weather changed .
I have both also😔
@Mary Austin is Thank you for reply and i am so happy for you,i hope you will be healthy forever.Big hug🤗.
I have had Psoriasis since i was about 14, im now 53 and still suffer. Like you its on my knees, elbows, hair, ears and also my eye brows. I have been having pain in my joints for over 4 years now but everytime i mention it to my doctor they seem to shrug it off as if its in my mind. My finger joints are so sore some days that i cant grip like i used to. How do people get through to their doctor that they are sure they have Psoriatic Arthritis. Like most Doctors now they seem to not want to send you to see anyone regarding any problems and try and palm you off with other things. At the end of the day i wouldnt send my car to a vets for a diagnosis about a problem. What do i have to do to convince the doc about my problems. Thanks
kenneth robertson What country are you from as healthcare systems vary? General advice is just keep going to you doctor, saying outright that you believe you have psoriatic arthritis and need to see a rheumatologist. Explain your worries openly. If they refuse to refer you onwards say “Can you write i my notes that you are refusing to help me despite the possible risk of permanent joint damage” word for word, it’ll make them act as they will not want to write it down.
Change your doctor!
Do you have a snap chat? I'd love to have a friend to chat with about our mutual PsA... Name's Monique and I'm from Southern California. I was diagnosed at 19.
I would love to snap chat you about it! I have PsA and would like to have someone to talk about it with. @maddycharette
me to , i am from Cambodia , i have PsA around 10 year , i need some good recommendations from alk of you. thank you
Hey Madeline, add me back on snap... name's Monique.
I have it very severe
Research Paleolithic ketogenic diet, Zsofia Clemens and Paleomedicina Hungary.
Very promising.
Yes, thanks for the video!
I am 58. Really struggling to walk. Taking cocodamol at night. I have had Psoriasis since I was 14 and joint pain for a considerable time. They have just said psoriatic arthritis. I can hardly walk. Very frustrating. I just need to adjust life accordingly because at the moment I am unable to go out on my own, my husband has metalwork in his leg and to be quite honest, having just lost my job things are tight. I can and will cope with anything but if you have any advice please share it.
Can't even listen
I also have both and got them at the same time at 50 years old! I’ve done so much research after seeing 15 Doctors. I have not found much relief at all I’ve been taking 8 pills of methotrexate a week and was getting regicide infusions but now I am getting simpering asria infusion. Joints have been so severe and crazy how it all came on at the same time. Scalp is so severely painful everyday.
Best of luck