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Early Stage RA medicine transitioning

I was diagnosed with RA about 5 months ago when I went if for what I thought was a broken pinky. Bones were fine and MD tested for RA. I went on methotrexate (5 pills increasing to 7 pills) for over 12 weeks and improved but the side effects were terrible. My symptoms improved so MD reduced me to 6 and the 5 pills over 8 more weeks and RA was still stable. Since the side effects still weren’t great we switched to Leflunomide 10mg. No side effects thank goodness but just 3 days into that I feel like my symptoms are coming back a bit… have others experienced this when switching between medicines?

  1. Thank you so much for taking the time to sharing this. It's common for symptoms to ebb and flow when you are adjusting medications. Did you discuss this with your rheumatologist and what did they say? Also, before I was diagnosed I thought I broke or injured one of my fingers and wrists too. Looking back I was internally injured due to the attack on the joints which wasn't normal and my body was protecting itself. I haven't known anyone else to talk about their first symptoms experience in similar fashion to mine but it's probably a lot more common than we think. I'm glad you have no side effects, hang in there and things should improve. -Effie, team member

    1. Hi . Mind if I ask how long you have been on the Leflunomide? I ask because it can take 6 to 8 weeks for a person to notice a response and its full benefit may not be for several months. I know this seems like (and is) quite a while. Doctors often prescribe other temporary treatments, such as prednisone, to get patients through this gap. That said, if time has passed and you are not noticing improvement, don't hesitate to speak with your rheumatologist. Plenty of research has shown that early, aggressive treatment and control of RA leads to better long-term outcomes (see here for example: https://rmdopen.bmj.com/content/1/Suppl_1/e000057). Wishing you the best. Richard (RheumatoidArthritis.net Team)

      1. Thank you! I was on Methotrexate -- starting at 5 pills for 6 weeks, then 6 pills for a 6 weeks, then 7 for a few weeks, then down to six again and then 5. Since all looked pretty good, doc said transitioning to Leflunomide 10mg should work. I stopped MTX on 4/21 and started LFL on 4/30 ... so it's only been a few days. I noticed increased swelling around 4/28 (when I would usually take the MTX). I emailed the MD and she said that it's not unusual to see a bit of swelling increase when you switch medicines. I havent ever had a full blown flare (that I was aware of anyway), so not sure what that would look like/feel like, but she mentioned that if I have a flare up I should call.... i guess I'll know it if I am in one? 😀

        1. Flares are weirds, sometimes you can just feel crappier than normal for a long time or you can have something as acute as few days of real pain. It isn't fun. I also switcher over to leflunomide and tolerated it pretty well. I lost hair, though, which no one told me would happen and that was disappointing. I would have protected it with the spray and stuff. Hopefully that helps! Keep on keepin' on, DPM

      2. Yes so far no side effects to Leflunomide 5 days in - feel a bit like a new person given the brain fog and lethargy I was experiencing with MTX, though still have extra swelling and a bit of soreness which I hope is a natural part of the transition of meds. Doc has me taking Biotin Gummies to prevent hair thinning … it’s hard to tell if it’s really working though as I have long thick hair. I just hope that one day I don’t wake up and really notice it’s just gone.

        1. Hi . Glad to hear the fog has lifted. My wife, Kelly Mack (a contributor here), when she was on it, would take the methotrexate Friday evenings just so the fog wouldn't get in the way of her being able to function at work. Hopefully, the Arava kicks in soon. It seems that the manufacturers often put the "how long until it works" time at the outer edge to try to cover as many people as possible, so hopefully it will be shorter. Best, Richard (RheumatoidArthritis.net Team)

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