Sulfasalazine

[Greencat96]

Hi everyone.

The Rheumatologist is thinking I should start taking Sulfasalazine. I have had RA symptoms and my blood results show inflammation consistent with RA. However she cannot diagnose me as I don't have any swelling nor redness when experiencing a flare up.

As the sypmtoms and the pain are making my life difficult, she thought I could try taking Sulfasalazine and see whether this would help me.

Have any of you taken or are taking Sulfasalazine? On reading up, it looks like 80% of patient experience no side effects. I am curious though to hear the experience of people who are taking this drug.

Thank you all for your support

[Summerrain14]

Hi Greencat96. I take Sulfasalazine and have been on it since July 2019. When starting on it I felt a bit nauseous as my body was getting use to it but that was the only side effect I had and that settled pretty quickly for me. We all react differently to the medications so my advice is if your rheumatologist is offering it then it would be good to try as your symptoms and pain are impacting on your daily life. x

[Greencat96 in reply to Summerrain14]

Thank you Summerrain. It is good to hear your experience. It will help me not to feel too panicky if I experience nausea.

I am finding not being diagnosed really unsettling and feel anxious about taking medication. But it is more frightening to be in pain, to not be able to move my shoulder or my hip and to periodically not be able to work.

I have to be a little bit brave but I am not very good at it!!!

[Summerrain14 in reply to Greencat96]

I completely understand how unsettling it is not having a diagnosis. It can take a while to get a diagnosis as it did with me but Sulphasalzine was the first medication I was started on when it was clear I have some form of inflammatory arthritis now diagnosed as RA. Your blood tests and your body are showing that you have inflammation which is really draining to deal with daily so no harm at all with trying the medication as it may help to get to a diagnosis for you as well as give you some much needed relief. Feeling anxious about taking the medication is so natural too and we all feel this way about our medications and just have to put our trust in our rheumatologist with their advice. I really do feel for you and understand how you are feeling. You will hear good and bad about any medication and all we can do is try it and see if it helps isn’t it? We are all here to listen and support in any way we can, be kind to yourself as you are so brave for trying to find a way to give you some quality of life. I am not wording this well at the moment. Mornings are never my best time to make sense. 😊. x

[Greencat96 in reply to Summerrain14]

I am very grateful for the kind words and support. I don't understand why it helps but knowing your feelings, anxieties are also felt by others, really does help. It makes me feel braver and gives me strength.

Thank you🌸

[Boxerlady]

Sulfasalazine was added to my existing DMARDS (Methotrexate and Hydroxychloroquine) a few months ago and it has been great for me.I also had some nausia initially but it settled after a few days and apart from the shockingly yellow wee, I've had no other side effects. 😂 One extra positive for me is that it seems to be having good effect on my long-term IBS 👍

[Greencat96 in reply to Boxerlady]

Thank you boxerlady. Interesting point about IBS; improved digestion sounds great.

👍

[Knip in reply to Greencat96]

It is used as a treatment for Chron's Disease too, so can help both RA and bowel issues.

[Hidden]

Good luck with sulfasalazine I hope it works for you . It works for many just not for me

[Greencat96 in reply to Hidden]

This is good to know too. We all react differently to drugs. I think I need to try to keep a neutral and balanced mind; not raise my hope too much and not panic if I have side effects.

[Hidden in reply to Greencat96]

Good way to deal with it

[Sarah_89]

Hey,

I've been on sulfasalazine for 9 years and never had any side effects - it's worked great for me. Hope it helps you with your symptoms and pain!

[Marionfromhappydays]

Go for it the sooner you try it the sooner you will feel better x

It wasn't the drug for me (my body didn't like the sulpha and I came out in a rash) but I've found that people are so different what works for one doesn't work for all.

I've gotten use to trying new drugs and if you don't try you never know, I would have gladly kept on taking sulfasalazine if I could have.

Good luck x

[CRich58]

Hi. I’ve been taking Sulphasalazine for 8months now as a third DMARD. 2000mg a day. This has worked in bringing inflammation down in my feet/ankles...it feels as though it has topped out now and have dropped down to 1000mg daily as a maintenance dose. Had no side effects...turns your urine orange 😂. I suggest you try it. Many people’s meds experiences are different as you will have gathered-one pill doesn’t suit all.

[bpeal1]

I’ve been taking sulphasalazine for 14 years and never had any problems at all. It was the first DMARD I took. Other drugs have been added to it over the years but my rheumatologist believes it is still helping and last year increased my dose to 4000mg a day.

[Knip]

I think I was unlucky. I found that it really helped my RA, especially the pain and stiffness but I was having really bad headaches, almost daily, and I also developed a widespread rash over my legs and my back. The rash was very painful, like having oven burns. My mistake, I think, was soldiering on with it once the side affects had started to appear. I also felt quite anxious and shaky, which isn't like me, and my eyes were reddish. My mistake was, with hindsight, soldiering on with it once the side affects had started to appear!. I came off the drug and the rash is now clearing, after three weeks. I will be starting MTX again once I am clear of this. Previously I have had adverse reactions to Gold and Penicillamine. No one thing suits us all, and I really hope this drug turns your life around for the better. It does seem to suit most people.