What’s it like to be on Methotrexate? Eight Patients Share their Stories
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- Опубліковано 7 лип 2020
- People with rheumatoid arthritis frequently are put on the prescription medication Methotrexate. Aashi Bhimani of @Spoonieandspoonie on Instagram noticed that so many patients expressed fears about going on methotrexate due to the side effects that some patients experience. However, many others take it without many problems and experience relief from their rheumatoid arthritis.
Aashi put together a panel of eight patients to share their stories with methotrexate. They all have either rheumatoid arthritis or psoriatic arthritis, and they’ve had their diagnosis for anywhere from a few months to 17 years.
You can find them on Instagram at:
- Paula Burza @_Chronically_Happy_ and @Paulaburza
- Aashi Bhimani @spoonieandspoonie
- Cheryl Crow @Arthritis_Life_Cheryl
- Ananthi Ramachandran @ar_versus_ra
- Ali Digiacomo @anotherdaywithRA
- Kristen Brogan @warriorsmovemountains
- Jo Mistreanu @thejosphere
- Jenny Parker @cute_n_chronic
During this video they also discuss difficult decisions around natural cures versus “scary” sounding prescription medications.
Let us know any questions you have in the comments!
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this 3 yr old video popped up like a shining angel. Wow - I'm not alone.
I hear your stories of frustration and pain. I've been in this for 2 yrs --- going from Naproxin, prednisone, now hydroxychlorichine and next to whatever else they want to test me on. So slooooooow. This is Ontario, Canada. I am basically disabled (a former tennis player, skier, hiker etc etc) My life is one I don't recognize. But here you all are - speaking about the jaw,
speaking about the weight loss crisis (me, 35lbs in two months) that the rheumatoligist just shakes her head at --- ugh.. I'm still on a journey but methotrexate is in the future, I'm sure.
THANK YOU ALL SO MUCH FOR HAVING SHARED THIS WITH US ALL 🙏🧡
Thank YOu for taking the time to share your story and for listening to ours! You are not alone! Sending so much love and support your way.
This video is great! I too have been diagnosed with RA. I'm on pills but my doctor says the next step will be Methotrexate. This is very helpful. I'm so surprised to see that so many younger people have this as well. I pray everyone gets well soon.
Thank you very much! It can happen to anyone at any age, including small children and even babies
Thank you so much! You ladies have helped me immensely! 😢. You just don’t know!🙏🏽🙏🏽🙌🏽🙌🏽
Thank you so much for letting us know, you are not alone!
Thank you for the inclusion about grieving your old life. So important and a huge factor. ❤️
I'm glad that this resonated with you, you are not alone
Such a supportive forum! I was diagnosed 1 year ago with psoriatic arthritis. I tried methotrexate pills first but couldn't tolerate the nausea. I switched to the injection and it's much better. Feeling grateful for this information supportive of methotrexate as my dermatologist questioned it.
I'm so glad that the injections work better for you!
Thank you for this video. I'm a52 Yr old guy that that started getting joint pains and swelling 2 plus years ago. 6 weeks ago they found I have RA and immediately put me on 20mg methetrexate. So I'm new and still getting my head around the disease and the side effcts
It definitely takes time to wrap your head around it, sending lots of support your way! - Cheryl
Waiting for my diagnosis with psoriatic arthritis, I did, and still do, all of the natural remedies. I have irreversible damage, even with the healthy diet and remedies. I am glad the med will prevent further damage so I will be able to walk and use my remaining limbs into the future, while the healthy remedies prevent the meds from causing damage.
Thank you for sharing, I'm so glad you've found a combo that works!
Thank you all so much for sharing. I am 64 years old and been diagnosed with osteoarthritis. About 2 months ago I started Methotrexate for pain that I especially feel in my hip. The medication doesn't take all the pain away but at least I can function and do my daily tasks. I have an appointment with a surgeon in a couple of weeks to discuss surgery. I really don't want to do that!
I hope you get some relief, surgery can sound scary but if your medical team recommends it, it just might provide some longer term relief, fingers crossed!
I was offered Methotrexate pills in the uk, which I didn’t want to take because of the side effects and the fact that I have stomach issues. I went for a second opinion while I was in Italy, and I was told that they don’t use pills in Italy, apparently the injectable form is also more effective than the pill forms, as it bypasses your stomach. As soon as I came back, I asked for the injectable form, and I’m due to start injections next week.
I found the injections to be a lot easier on my stomach than the pills for sure!
Ali I am 83 and have RA since my 20s .I just wanted to tell you that early on I had RA in my jaw so I couldn`t chew.Been on just about every drug including biologics.But I do want to tell you that I have gone into remission sometimes for years.Hope that encourages you.
Thank you so much for sharing your story!
Well, which drugs worked for you and which ones did not?
❤ the video. DEFINITELY helps in my decision making of getting started with methotrexate. Thank you.
I'm so glad to hear the video was helpful, thank you for letting me know!
Thank you for the vid❤. Started methotrexate a few days ago. Been on hcq and azathioprine for over a year but my symptioms have not really improved. Cpk always above 20k......placing alot of hope on the metho! Appreciating the reviews
I'll be gently crossing my fingers for you that it helps a lot!
Thank you so much. Did a cpk 8 days after starting methotrexate 15mg each week and my cpk miraculously dropped to 5,814 from 23,600. This was only after my second dose. 🙏 am so hopeful
Thank you for this video. It was so helpful. 😊🌻
Thank you so much for taking the time to let me know it was helpful!
This video made feel that I am not alone. As a younger person (30s) I often feel like no one in my peer group is all achey and hobbling around like an old lady. I actually take Methotrexate for Lupus but I also have arthritis.
I feel suppressed like I am on reserve energy most of the time. I used to be very, very active and busy on multiple projects. My story began with an electrical burn, a sars rna booster shot which I didn't expect until recently, and the decision of the ER nurses to treat my burns like psoriasis. I have no inflammation in my joints but it does settle in other places I have to bandage. It is not something I wanted to talk about if I were to go on social media but I was never afraid to face the life I had to live as awfully difficult and life threatening as it became for me when it spread to my lungs. Methotrexate helped me breathe again but my voice isn't there like it was on many days. Lots of water to keep dry mouth and headaches away. I was 29 when my legs stopped working with me properly. I could not walk by my thirtieth birthday. Still managing what I can over a decade later. Still looking for better doctors as I am constantly referred back to dermatology who only know the skin and nothing about the inflammation. I did see a rheumatologist but they are aware the inflammation isn't in my joints so it's not RA.
Wow, what a great informative conversation. Listened to the whole thing! And signed up. I was diagnosed with Psoriatic Arthritis and got one injection on the spot. Still weighing Injections vs Diet ways!!! im so stubbed.
I'm so so glad the video was helpful for you! I hope you find a plan that works for you
This was wonderful.......Thank-you !
Glad you enjoyed it!
Thank you!
You're welcome! Let me know if you have topic requests for future videos!
Thanks everyone don't feel alone 😢
I'm so glad to hear it, you are not alone!
Thank you for sharing.
I'm so glad it was helpful!
My road has been soooo long. I feel like I've tried so many things....now I'm on this medication and starting to feel a little better but the hangovers are sooo bad. Anyhow, this video really TRULY helped . Thank you all so very much 😊
I'm sorry to hear you have the hangovers but I'm glad to hear it's helping! Sending lots of support your way!
Are y’all on folic acid to combat the side effects
Everyone had nice long hair! I have lupus hair loss had been big for my flears 😢
It's a bit of a mystery how some people experience hair loss on methotrexate and others don't!
I’ve avoided methotrexate for so long. I started with Biologics, but each became less effective. Lost insurance and went back to Sulfasalizine , and rheumatologist wants me to also take methotrexate. When I was first diagnosed with Ankylosing spondylitis my then rheumatologist prescribed methotrexate, but I never took it. Guess I need to give in, as I also refuse to take JAK inhibitors as the other option.
Thank you all for sharing your experiences
Hi Kevin, I hope that methotrexate ends up working super well for you, one of the nice things about it is that it's more affordable than the biologics. My fingers are (gently) crossed for you!
What the hell, it took them two months to put me on Methotrexate after I was diagnosed. How do these people get on it the same day they are diagnosed.
Methotrexate sucks to be honest, but I have arthritis in my hips and can hardly walk, so hopefully it's worth the trade.
I'm sorry it took you a while! I'm glad it's helping you!
Praying for your healing
I'm interested in the CBD data or any symptom-tracking sheets that can be shared. I'd like to try this for myself as I am struggling with severe fatigue, brain fog, and slight depression. Thanks!
I discussed the potential benefits of CBD for people with rheumatic diseases on two episodes of the arthritis life podcast:
Episode 85: arthritis.theenthusiasticlife.com/2022/12/10/its-a-moving-target-how-to-cope-with-rheumatoid-arthritis-ups-and-downs-with-emily-jacobs/
Episode 68: arthritis.theenthusiasticlife.com/2022/05/09/medical-cannabis-arthritis-101-with-registered-dietitian-cristina-montoya/
I hope these are helpful resources for you!
So glad to find this channel today. Living with RA since i was 12 years old and im 26 now. Been on HCQS all these years but the disease progression continued so my doctor recommended methotrexate. Will be taking the first tablet today 15 mg per week for 4 months to see what works out or not.
Had the 1st tablet today and was tired the whole day. Kind of feeling stomach burn? Is it like common?
Hi there, I'm so glad our video was helpful! To answer your question, yes it's common to feel more tired than usual for between 12-24 hours after you take methotrexate. The stomach burn can result from the pills, that's why I switched to injectable form of methotrexate. I hope it works super well for you! - Cheryl
Thank you
How are you doing now?
And we learned that United States is the worst place to live if you have health issues......Hope you get the treatment you need Bhimani !
So unfortunately true, thank you for the kind words!
I hope I don’t have that experience. My Rheumatologist is so kind, understanding and a real advocate for me.
How did you overcome all these speculations about mtx? They are on every step (risk of other serious things). I really want to rely on mtx but there are so many crazy stories about it😢
Great question! I overcome the speculation about negative effects of methotrexate by looking at valid scientific resources. Methotrexate is one of the safest and most effective medications for rheumatoid arthritis, which is why it's often the first medicine recommended by rheumatologists. I put together some factual resources here which can help:
arthritis.theenthusiasticlife.com/2023/04/07/how-effective-are-rheumatoid-arthritis-medications/
It would have been nice if Paulina would have described how she felt that first morning. If it was more than joint pain.
Paracetamol does nothing for pain for me.
In small doses MTX can cause cancer?!!!
We just filmed a follow up episode, will share soon!
Considering Methotrexate or Ciclosporin but not for RA, I have psoriasis. My wife has RA but never been offered this drug.
I hope you and your wife are doing well!
I am about to start. Scleroderma DX
I'm (gently) crossing fingers it helps you!
Thank you for this video! I've been on Methotrexate for 1.5 years. I know I would not be functioning at all if not for this medication. But I still get flares here and there. I operate cameras and computers for a living, so when work gets super busy and I have a flare, I run to my doc for a steroid shot. So she increased my dose 5 weeks ago to 20 mg per week. My joints were 100% until yesterday. My thumb joint is killing me. The exhaustion from the meds is a whole other thing. But do you guys still get flares, even though this med works for you? I feel so defeated.
I'm so sorry! So methotrexate alone works for about 50% of patients, the rest will need an additional medicine to help slow down disease progression. I've been on methotrexate plus a "biologic" for 19 years. I would let your doc know that methotrexate alone might not be sufficient. Another idea would be to ask whether you can get a referral to a "certified hand therapist" who could help you with some life hacks for your job!
@@ArthritisLife thank you! I also realized that the dose increase is giving me migraines the following day. I'll have to make an adjustment.
Thank you everyone for sharing this , I have been taking it for a 1,5 year yes it does help. I have been educated myself, trying to find the root costs of #autoimundieseaes and etc. I have also been active doing the yoga for RA and believe in the more mobility less pains.
I combine with the Diet, listening to the body and it's reactions. I don't want to be on medical treatment due to its side effects.
I have been much better but always learning , finding the #Function medications . I have tried to decrease medicine steps by steps and want to end it in this Summer ⛱️ . I have been to 6 months regulary control and I am excited to try 0 medicine and then see how it will be in my next control after 6 months.
@@ArthritisLifeif one doesn’t work, why add another? Why not just try another? Why put extra chemical poison in your body?
im in my thirties and are about to take this for psorasis... hoping it can give me some relief
I'm gently crossing my fingers for you!
I started methotrexate last month but my rheumatologist doctor also prescribed me folic acid with it.
Yes, I'm also on folic acid along with methotrexate, great point!
I might have vasculitis
I hope you're able to get some relief soon!
@@ArthritisLife i am in serious pain and didn't know what it was and why my fingers got fat and dark blue with breeding until I went hospital and they're checking and will give me a diagnosis. They gave me steroids for time being.
Has anyone here tried the Paddison program
There is no strong evidence for it for rheumatoid arthritis specifically, the 2022 American College of Rheumatology Integrative Health Guidelines for RA (based on scientific evidence) endorse the Mediterranean diet for RA. rheumatology.org/integrative-ra-treatment-guideline
@@ArthritisLife thanks.
it seems to be helping a lot of people though- in the tens of thousands. Hopefully more research will go towards this. I watched an interview with a Dutch? Nutritionist.
😮😮😮😮😮😮
I hope the video was helpful!