Sulfasalazine is anyone else taking this ?

Kempkat

I have recently been prescribed Sulfasalazine and have been on it for 6 weeks now, I’ve been told it can take a few months to work! I was wondering what experience others taking this have had and if it worked. Currently I’m still having chronic pain in my hands and feet particularly my right foot which has become very painful to walk on with my toes swollen and slightly bruised the rheumatologist told me it was a flare up. I had a course of oral steroids for four weeks but the pain has got worse. Just wondering what others have experienced and how long it may take until I notice an improvement on Sulfasalazine !

jamieA

Hi @Kempkat

I know everyone is different in how they may react to medication so my situation may not be relevant to you.

Sulfasalazine was the first drug I was prescribed in October 2020 when I was diagnosed with psoriatic arthritis. I was told at the time it could take 3 months for it to have an effect. It didn't have an effect so 4 months later methotrexate was added. That combination didn't have an effect either so the biologic adalimumab was added 9 months after I'd started sulfasalazine. The combination of the 3 drugs has worked and I'm significantly better than I was at my worst.

If I were to offer any advice it would be to try to be assertive in the management of your disease. I'd never had a chronic disease before and initially I thought the medics would leap into action to quickly provide a solution. That wasn't the case and I feel that months were lost due to inaction on their part.

I hope sulfasalazine works for you.

Kempkat

thanks @jamieA I totally understand it’s taken me a year to get this far after GP not taking it seriously being given various pain killers that just made me sick, finally got diagnosed in January had depo injection then Hydroxychloroquine which I had to stop taking it as had a very adverse reaction. Then more steroids and now trying this ! Hopefully will see an improvement soon !
thanks for the advice I wish you well !

Moira

Any of these drugs will take time to kick in. Sometimes it's trial and error to see which drugs suit which people. I was on it for a bit and had horrible side effects. My skin took on a yellow tinge and I tasted metal all the time. I was changed off it. With drugs like these, I think it depends on the person. I have a friend who uses it without any problems. But do take the time to let it settle. It may well be the drug for you. If not ask your rhumatologist what other options there are.

Good luck.

Arciere

Hi @Kempkat

Yes I was previously prescribed this. It did take a long time to engage as such, but ultimately I did not feel like it was working for me. To cut a long story short, I came off it quite quickly and it soon became apparent that it was doing something - just not enough. I do not recommend stoping any medication yourself (speaking from experience). Please do discuss it with your Specialist etc

GillH

Hello

I was just doing a search of posts to see what info I could find regarding sulfasalazine. I am into my 7th week of using it and taking 2500mg per day now (increased dose slowly) but I have felt rubbish on and off for the whole time. I keep picking up infections and now on a 2nd course of antibiotics. One GP advised stopping sulfasalazine while on the antibiotics and the other said it was up to me. I opted for a middle ground and reduced to 1000mg per day while I finish the antibiotics. I still have pain in quite a few joints but I know that improvement can take up to 3 months.

I am keen to know if there are people out there that this drug has worked for, or if the side effects become too much. I I used insurance to see a private consultant as NHS waiting lists were so long in my area but I have a slight worry that this might influence the treatment prescribed.

Ellen

Hi @GillH welcome to the online community. I see from your post that you have seen a private rheumatologist and been prescribed sulfasalazine and have been taking it for 7 weeks.

The information we have on our main site interestingly says "Sulfasalazine is not thought to increase risk of infection, unless it causes the rare side effect of low white blood cells". See below:

https://www.versusarthritis.org/about-arthritis/treatments/drugs/sulfasalazine/

I am presuming you have had bloods taken to check for this possibility.

Sulfasalazine is often prescribed as one of the first line Disease modifying anti-Rheumatic drugs. The fact that you are seeing a private consultant really ought not affect your treatment.

Hopefully some of our members will come along and share their own experience with it.

Best wishes

Ellen.

Arciere

hi there

Yes I took sulfasalzine. It didn’t work for me. However, I came off it abruptly and found out that it was actually doing something - I then had a gap between the next medication- Adalimumab - experienced an irrelevant trauma of sorts and became very ill. So if it’s not working for you as you’d like, may I encourage you to discuss how you cease or change with your medical professional.

Hope this helps

hevver7

How are you with the Sulfasalazine now? I’ve been taking it for nearly a year, 3000mg daily along with Hydroxychloroquin. However I still can’t get off Prednisolone. Scared of the other stuff they offer.i have a dodgy liver and most affect that.

Mush

Sulfasalazine went through me like a Porsche, I can't take it, not a good experience. Hydroxychloroquine 400mg, they are trying to cut me down to 200mg, not a hope in hell, for me it works, i'm not pain free but compared to some on this site, i'm the lucky one. I wish everyone a great (pain free as possible) Xmas.

Kempkat

I’m still currently on Sulfasalazine but it’s not working for me (I had a severe reaction to Hydroxychloroquine). My consultant has said the next step will be Methotrexate which I’m quite nervous about, but I’m in so much pain with my hands, feet, knees and hip I need to try I guess. Recent ultrasounds showed significant deterioration from last year and additional new inflammation ! So things are getting worse. It’s been over a year and I’m still trying to find something that works. Totally fed up with the constant pain to be honest think I’d try anything at this point!

claudsl

Hi @Kempkat

Sorry to hear you are going through a rough time, hopefully you will find a drug that helps to keep your pain under control. Methotrexate works well for many people so it would be worth a try. You should also chat to your rheumatologist about biologics.

Methotrexate | Side-effects, uses, time to work

All the best! Claudia x