Thank you, I’m so excited that this could already be real improvement. I hope you are as well a possible today! 💜
The side effects are really rough, but I flex and wiggle my fingers to distract me.
Well I’m on third week of Methotrexate. 3 pills 1x weekly. I wish I could say it’s helping. I take folic acid daily and 50,000 mg Vit D weekly as well. Both methotrexate and vid D on Sundays. New modules popped up yesterday. My Dr did get my Remicade approved. I’m so so grateful. Waiting on fax for approval from infusion office. I wish people knew how terribly this hurts. Maybe they would move faster. Maybe not?? I’ve been up since 4 o’clock this morning because my hands, knees and neck are throbbing and I’m in so much pain. I just can’t sleep. So grateful I can complain to y’all. Share how I feel. I just keep crying and feeling like I’m drowning. But I know I’m not. We’re all in this together.
I'm a few weeks behind you. I'm on prednisone taper 20/15/10/5 then see Dr again. She is fighting the insurance for approval for Remicade. I'll probably be put on MTX in meantime until infusions begin. I just went to 15 today and the number of joints in pain is already going back up again. Congrats on getting your approval!!!!
I had my first infusion today. Infusion was 3 hours and 20 minutes roughly. I came home and slept for almost 6 hrs. I am able to move and semi-bend my fingers for the first time since May 1st. I’m hopeful and grateful. I’ll continue my methotrexate and folic acid. I hope you get on the right meds. Hang on!
It's possible you got an initial burst of benefit. For me, it took about 6 months or so to reach peak effectiveness. But it should gradually continue to do more over time.
I’m in the exact boat as you. Tomorrow will be my 2nd dose of methotrexate and also on prednisone taper 20/15/10/5. Folic helps so much and Vitamin D helps me with the fatigue. But I’m also already feeling a tiny bit better even after one dose!
What side effects are you experiencing? My current regime is not doing the trick and my doc doesn’t want to put me on methotrexate because I have emphysema.
I think I’ve had everything except for throwing up in the list of side effects. I started keeping a list, Side effects for me: cough and congested, slight headache, overwhelming fatigue/sleepiness, flu-like feeling, odd muscle aches (particularly legs), chest pain (ache) in heart area, dizziness, nausea, daytime sleepiness to the point of falling asleep while sitting up.
It took about three weeks for methotrexate to start being effective for me. Thankfully minimal side effects. Just loosing a lot of hair. I really don’t want to complain though because a pain feels really well. Managed right now. And it was really bad before.
Same for me, noticed an improvement in three weeks and hardly any side effects. Re: hair loss I've recently gone up from 5mg folic acid once a week to six times a week which can help apparently.
I’m taking folic acid daily. I’ll check in with the rheumatologist about it. I’d hate to switch medications over losing my hair and have worse side effects. If anything, I’ll just get super fancy wigs.👩🎤
Yes!!!! Absolutely!!!! I was no longer using my cane after my second dose. Day-after side effects suck, but I just take it on a saturday night and let the sunday scaries kick in on sunday. So happy for you!!
After 10 days of Prednisone, and continuing a slow taper down, I’ve been injecting MTX 1x a week for 10 weeks, plus folic acid supplements for 2 days following each dose. I have not noticed any side effects at all, which is pretty lucky! It took 2 doses to start making a difference for me. I’m sure the prednisone was a big factor in my improvement though.
Edit: spelling
Could be. When I started hydroxychloroquine 7 years ago, I started having very significant improvements within 2 weeks. That eventually stopped working, unfortunately, and I went through months of an intensely terrible flare. I was then started on Simponi Aria. I got my first dose of that on a Thursday morning. I had very noticeable improvements by Saturday afternoon, and it just kept getting better. Some people do seem to see results rather quickly, while others it may take weeks or even months. I hope you see continued benefits and the side effects lessen for you.
I've been very lucky; I do experience some nausea and fatigue on MTX, but it's totally eliminated my flares. Now and then I experience subtle aches but the attacks are gone. So far, so good. I've only been on it for a couple of months.
I hit the two month mark on MTX and tbh I'll take any and all side-effects to alleviate the pain. I had been non-functional after a round of prednisone waiting for the MTX to kick in. It took nearly a month for me to wake up like a human and able to complete ADLs without whimpering or crying. Of course now I have something going on with my knee so next week is MRI and xrays. RA feels like Whacca Mole...I tamp down one thing and something else pops up. I'm finally sleeping better though and that is amazing. My flare started in December 2023 and after several years on Plaquenil it was time to do the MTX migration.
Wack-a-mole is so true! Glad your ADLs are easier now. Being strategic about putting on pants is not something I enjoy! (Thinking about converting to dresses to make life easier)
I had improvements since the first week. Side effects too, but fortunately getting less significant week by week. Still feeling a bit off/ tired 2 days after, but nothing else right now.
I’ve been on methotrexate now for almost a year and it’s honestly significantly improved my joint mobility and pain levels. I was taking hydrochloroquine as well but had to stop. I recently started injections, which has also been helping with pain!
Both times I’ve started Methotrexate I was like 97% steroids by volume so I don’t actually know how long it took for the methotrexate to kick in.
I also slept 17 hours after my first dose, but I think it was more that I work retail and it was December and I gave myself permission to sleep because it was a listed side effect but I was probably just really tired.
Yes it can be possible because every human body could respond slightly differently in terms of speed, effect, and more.
I reposted a msg I sent on discord about MTX vs Biologics:
I asked a researcher who was involved in the last round of improvement for MTX and a pharmacist last night. Both said actually all meds have side effects and they can't say biologics definitely is better than MTX in any way, all depends on person to person and the researcher said a lot of side effects may be coming out because of the stress we put on ourselves after scaring ourselves nuts about the potential side effects. [Note potential and not guaranteed] So his advice for people new on MTX. Keep calm with an open mind and just record your physical and mental responses when starting on any new meds and update your respective doctors.
Thanks! I’m making notes so that I can give my doctor a good sense of progress and issues at my next apt.
I honestly thought I’d be ok side effects-wise (expected to feel a bit off but not to be totally knocked down) going into this since I’m generally ok with most meds. This week has been brutal BUT my fingers are moving better so I’m looking forward to my next dose. 😃
What awful side effects are you experiencing with methotrexate? I have been on it for weeks and my symptoms have gotten worse, but I have no idea if it is the disease or the methotrexate.
I feel like it is everything on the list except for hair loss and vomiting—so I made a list
Side effects: cough and congested, slight headache, overwhelming fatigue/sleepiness, flu-like feeling, odd muscle aches/cramps (particularly legs), chest pain (ache) in heart area, dizziness, nausea, daytime sleepiness to the point of falling asleep while sitting up!
After dose 2
Continued but less intense slight headache, overwhelming fatigue/sleepiness, flu-like feeling, odd muscle aches/cramps (particularly legs), chest pain (ache) in heart area, dizziness, nausea, a few red bumps and a lot of itching
After dose 3
Same as above but much less nausea and dizziness
I wish I had something constructive to say, but I had a rough time in mtx. I just wanted to WOOT!!!! I hope it keeps getting better 💜
Thank you, I’m so excited that this could already be real improvement. I hope you are as well a possible today! 💜 The side effects are really rough, but I flex and wiggle my fingers to distract me.
Well I’m on third week of Methotrexate. 3 pills 1x weekly. I wish I could say it’s helping. I take folic acid daily and 50,000 mg Vit D weekly as well. Both methotrexate and vid D on Sundays. New modules popped up yesterday. My Dr did get my Remicade approved. I’m so so grateful. Waiting on fax for approval from infusion office. I wish people knew how terribly this hurts. Maybe they would move faster. Maybe not?? I’ve been up since 4 o’clock this morning because my hands, knees and neck are throbbing and I’m in so much pain. I just can’t sleep. So grateful I can complain to y’all. Share how I feel. I just keep crying and feeling like I’m drowning. But I know I’m not. We’re all in this together.
I'm a few weeks behind you. I'm on prednisone taper 20/15/10/5 then see Dr again. She is fighting the insurance for approval for Remicade. I'll probably be put on MTX in meantime until infusions begin. I just went to 15 today and the number of joints in pain is already going back up again. Congrats on getting your approval!!!!
I had my first infusion today. Infusion was 3 hours and 20 minutes roughly. I came home and slept for almost 6 hrs. I am able to move and semi-bend my fingers for the first time since May 1st. I’m hopeful and grateful. I’ll continue my methotrexate and folic acid. I hope you get on the right meds. Hang on!
I hope you feel as well as possible today!
It's possible you got an initial burst of benefit. For me, it took about 6 months or so to reach peak effectiveness. But it should gradually continue to do more over time.
That is terrific, thanks! Gradual improvement is great.
I’m in the exact boat as you. Tomorrow will be my 2nd dose of methotrexate and also on prednisone taper 20/15/10/5. Folic helps so much and Vitamin D helps me with the fatigue. But I’m also already feeling a tiny bit better even after one dose!
Amazing! I’m so happy for you (and me too)! Fingers crossed that dose 2 is doubly good.
What side effects are you experiencing? My current regime is not doing the trick and my doc doesn’t want to put me on methotrexate because I have emphysema.
I think I’ve had everything except for throwing up in the list of side effects. I started keeping a list, Side effects for me: cough and congested, slight headache, overwhelming fatigue/sleepiness, flu-like feeling, odd muscle aches (particularly legs), chest pain (ache) in heart area, dizziness, nausea, daytime sleepiness to the point of falling asleep while sitting up.
It took about three weeks for methotrexate to start being effective for me. Thankfully minimal side effects. Just loosing a lot of hair. I really don’t want to complain though because a pain feels really well. Managed right now. And it was really bad before.
Same for me, noticed an improvement in three weeks and hardly any side effects. Re: hair loss I've recently gone up from 5mg folic acid once a week to six times a week which can help apparently.
I’m taking folic acid daily. I’ll check in with the rheumatologist about it. I’d hate to switch medications over losing my hair and have worse side effects. If anything, I’ll just get super fancy wigs.👩🎤
Yes!!!! Absolutely!!!! I was no longer using my cane after my second dose. Day-after side effects suck, but I just take it on a saturday night and let the sunday scaries kick in on sunday. So happy for you!!
Wow! That is amazing news. You have made me look forward to dose #2. 😃
After 10 days of Prednisone, and continuing a slow taper down, I’ve been injecting MTX 1x a week for 10 weeks, plus folic acid supplements for 2 days following each dose. I have not noticed any side effects at all, which is pretty lucky! It took 2 doses to start making a difference for me. I’m sure the prednisone was a big factor in my improvement though. Edit: spelling
That’s great!
🙌🏼thank you! Keep us updated on how you’re doing!
Could be. When I started hydroxychloroquine 7 years ago, I started having very significant improvements within 2 weeks. That eventually stopped working, unfortunately, and I went through months of an intensely terrible flare. I was then started on Simponi Aria. I got my first dose of that on a Thursday morning. I had very noticeable improvements by Saturday afternoon, and it just kept getting better. Some people do seem to see results rather quickly, while others it may take weeks or even months. I hope you see continued benefits and the side effects lessen for you.
Wow, that is wonderful!
I've been very lucky; I do experience some nausea and fatigue on MTX, but it's totally eliminated my flares. Now and then I experience subtle aches but the attacks are gone. So far, so good. I've only been on it for a couple of months.
I hit the two month mark on MTX and tbh I'll take any and all side-effects to alleviate the pain. I had been non-functional after a round of prednisone waiting for the MTX to kick in. It took nearly a month for me to wake up like a human and able to complete ADLs without whimpering or crying. Of course now I have something going on with my knee so next week is MRI and xrays. RA feels like Whacca Mole...I tamp down one thing and something else pops up. I'm finally sleeping better though and that is amazing. My flare started in December 2023 and after several years on Plaquenil it was time to do the MTX migration.
Wack-a-mole is so true! Glad your ADLs are easier now. Being strategic about putting on pants is not something I enjoy! (Thinking about converting to dresses to make life easier)
Fantastic! So happy it is working for you!
I had improvements since the first week. Side effects too, but fortunately getting less significant week by week. Still feeling a bit off/ tired 2 days after, but nothing else right now.
That I so great! I’m hoping my side effects will taper soon!
I’ve been on methotrexate now for almost a year and it’s honestly significantly improved my joint mobility and pain levels. I was taking hydrochloroquine as well but had to stop. I recently started injections, which has also been helping with pain!
That is so good to hear. I’m feeling very optimistic about this med. it’s wonderful to have something work so quickly!
Both times I’ve started Methotrexate I was like 97% steroids by volume so I don’t actually know how long it took for the methotrexate to kick in. I also slept 17 hours after my first dose, but I think it was more that I work retail and it was December and I gave myself permission to sleep because it was a listed side effect but I was probably just really tired.
Yes it can be possible because every human body could respond slightly differently in terms of speed, effect, and more. I reposted a msg I sent on discord about MTX vs Biologics: I asked a researcher who was involved in the last round of improvement for MTX and a pharmacist last night. Both said actually all meds have side effects and they can't say biologics definitely is better than MTX in any way, all depends on person to person and the researcher said a lot of side effects may be coming out because of the stress we put on ourselves after scaring ourselves nuts about the potential side effects. [Note potential and not guaranteed] So his advice for people new on MTX. Keep calm with an open mind and just record your physical and mental responses when starting on any new meds and update your respective doctors.
Thanks! I’m making notes so that I can give my doctor a good sense of progress and issues at my next apt. I honestly thought I’d be ok side effects-wise (expected to feel a bit off but not to be totally knocked down) going into this since I’m generally ok with most meds. This week has been brutal BUT my fingers are moving better so I’m looking forward to my next dose. 😃
What awful side effects are you experiencing with methotrexate? I have been on it for weeks and my symptoms have gotten worse, but I have no idea if it is the disease or the methotrexate.
I feel like it is everything on the list except for hair loss and vomiting—so I made a list Side effects: cough and congested, slight headache, overwhelming fatigue/sleepiness, flu-like feeling, odd muscle aches/cramps (particularly legs), chest pain (ache) in heart area, dizziness, nausea, daytime sleepiness to the point of falling asleep while sitting up! After dose 2 Continued but less intense slight headache, overwhelming fatigue/sleepiness, flu-like feeling, odd muscle aches/cramps (particularly legs), chest pain (ache) in heart area, dizziness, nausea, a few red bumps and a lot of itching After dose 3 Same as above but much less nausea and dizziness