Hi all,
Had my Rheumy appt today. No plaquenil for me after all. He doesn't think it will be strong enough. So, sulfasalazine is being discussed with my hepatologist as I have PBC too. My hep emailed me that the sulfa RA drug would be OK to take. Probably start next week. Anyone else out there on this drug that can share anything (good or bad) about it??
Thanks Stella (That's my Beagle Mr. Brodie)
Dx PBC 10/16
Dx seronegative RA 4/17
I just started it myself last week. I'm taking a wait & see attitude on it. Hopefully it will help my orencia work better.
I hope it works for you. I haven't started it yet. My first flare is over... Doc gave me prednisone. This is all new to me.... But he recommended sulfasalazine. We will see...
After 3 years of minimal response from previous prescriptions, including humira, embrel, xeljanz, methotrexate injections, and more. THIS medication has helped! A LOT!! I take methotrexate with it, and am finally regaining some hope. Good luck to you! Praying 
Terrac,
Thank you. I'm scared of the side effects cause I'm on other meds too but.... Gotta take it.
Stella
I just started on it last month. Prior to that for several years (around 3) I took methotrexate maxed out at (10) 2.5 mg. Tablets each week. In addition to that I was on Folic Acid 1 mg. Every day to fight methotrexate side effects. Also plaquenil. I was ill for quite a while, nauseous, no appetitie or energy. I quit taking and the rheumatologist started me on Sulfasalazine. So far so good, appetite increased, more energy. Trying to go all natural as much, lowering pain meds and doing physical therapy that is good for the conditions I have. Feel so much better. Unless you are allergic to sulfa drugs, it should be okay as far as side effects but everyone's body is different so proceed with caution with your doctor. If you are able to, depending on your condition, strengthens the muscles holds your skeleton together better and you will feel less pain. Good luck to you. Hope it helps.
Thank you uneekcheryl,
I'm glad to hear you're doing better. I'm on day 3 of one 500mg pill of sulfasalazine. Next week I'll he taking 1000mg, and the week after that 2000mg a day. It seems like a lot.
I've heard this drug depletes folate?
I've been on sulfasalazine since 2009 and I don't have any trouble with it. I also was on plaquenil but had to stop in 2015 bc of plaquenil toxicity. I had trouble coming off the plaquenil. I didn't think it was working but when I stopped it I found out it was helping in the background.
I had a GI intolerance to Sulfasalazine. I have never had any drug allergies before. I had stomach cramping and some diarrhea. I just could not knock it and the cramps got worse. They took me off of it as soon as I (finally) told them. They said lots of people have a GI intolerance to it.
Shellshell,
Sorry to hear it. I just started 2000mg split morning and dinner. 2nd day now. So far so good. But all together I've only been on it for 2 1/2 weeks. I still have inflammation and pain. Guess it takes a few more weeks to work. What are you taking now?
Well after failing on the Sulfasalazine I started meloxicam. I can't say it ever helped much but this was many medicines ago I am now on Xeljanz and plaquenil. Just started the Xeljanz 6 weeks ago..hoping for the best..it has been a long 4 years of trial and error. I hope sulfasalazine works for you!
Hi Ktltel, I've been on Sulfasalazine (2000 mgs./daily) for at least a couple of years now, also on Plaquenil & Humira. Started Humira 2 months ago (4 shots), so I'm still waiting to see if it works. I've had no problems with the Sulfasalazine or the plaquenil other than neither of them working very well! Just started with a new rheumy in March, go back in July and am praying something starts working. I feel like I am actually getting worse...
Good luck with the Sulfa, I hope it works for you!
RobieC,
Well that's discouraging. Sorry to hear it didn't work. My liver can't take the really hard stuff, Humira, Xeljanz, etc. Doc didn't think plaquenil would be strong enough. So, here I am 2 1/2 weeks in with Sulfasalazine. Paperwork says it takes up to 3 months to actually work. That's frustrating too. Today my wrists and mid back really hurt. Taking Gabapentin for my back. Seems like a lot of people are having to take multiple RA drugs to get relief. Unfortunately, my liver won't allow that. I'm hoping this Sulfasalazine works too.
Thanks for your reply.
Stella
Oh no, now Stella, don't be discouraged! Everyone's body reacts differently to all the medications, so Sulfasalazine may work great for you!! And yes, it is extremely frustrating having to wait so long to see if a medication works for you or not, but almost every single one is like that!! My understanding is that most people need a "cocktail" for relief; it's a matter of finding the cocktail that works. I'm sorry your liver makes dealing with RA even more difficult... did I read on here somewhere that you have started taking Milk Thistle? Maybe it was someone else; if you aren't taking it, you should try it and see how your numbers look at your next blood draw. Until then, I'll pray Sulfasalazine works for you and you pray Humira works for me; deal?
I have pbc with lots of autoimmune issues including ra/oa and this thread really helps. I have reactions to most meds. R- lipoic acid helped me with joints and back pain. I get dry needling from physical therapist for back and neck spasms. I get ai pancreatitis which causes very painful muscle spasms. Taking pancreatic/digestive enzymes reduces my pain and stiffness. Im avoiding the chemicals that cause pbc best I can. I got the joint injection of supartz from my rheumie which helps so far. I need something stronger but we cant take it. I developed myasthenia gravis too perhaps from plaquenil but i cant quit it as i get really sick. I hope the sulphasalazine works. I think i may be allergiv to sulfa cuz i had a reaction to hctz but maybe at a really low dose. I am interested in how you are doing and I wish you the very best. Oh i tried ubiquinol with ppq and that helped me have more energy and feel better. It sort of works like lipoic acid. Good for your heart too.
Hello,
This original thread is over 2 years old. Lots have changed. I had to go off the sulfasalazine a year ago. But, my doctor told me when I first went on it that it may put me in remission after awhile. Well, I'm happy to report it did. Last year my liver enzymes went up and the sulfasalazine was the culprit. I went off but my arthritis didnt come back nearly as strong. I attribute that to diet, low dose naltrexone, and the sulfasalazine doing its job. I still ache, just not nearly as bad at all. I can function. How are you?
Stella
I was stable on Plaquenil for years and when they finally put me on urso i went into remission. But then developed myasthenia gravis due to plaquenil i think maybe. And im developing ra and oa that i cant ignore anymore so im looking for something. Im thinking about nalrexone too. Is that helping you? My rheumie gives me shorter prednisone tapers so i dont get bad side effects. Im having allergic reactions to so many things right now. Im hoping once i come off the steroids i can get into remission for a while.
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