Goid morning I have been taking Prednisolone for 20 months for PMR . Last Christmas my Rheumatologist thought I also had Inflammatory Arthritis as my right middle finger was swollen , found to be Synotendonitis .
started Sulph. OK week one at 500mg then week 2 at 1 gram but at week 3 starting to feel unwell , dizzy very lethargic at 1.5grams . When I reached optimum dose of 2 grams a day I felt dreadful , weak , dizzy and palpitations .
was advised to stop them then try again in a week .
Anybody else had this and been able to get to the right dose , this is also to help me to taper my Pred.
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I took it for three weeks, feeling increasingly unwell. Reported the side effects to the rheumy team and was seen shortly after. I was told off for persevering with it and an allergy to it was added to my records. Not every med will suit everybody.
I’m only in week 3, but so far have noticed that they are working brilliantly for me (in combination with methotrexate and prednisone) - daily feel my strength and self coming back
I know nothing about SAL as never had it, but do have experience of high dose steriods. I was told it’s a very slow procedure. It took me a long time the worst bit was down from 20 to 0. I think you must discuss this with your prescriber as it will depend on dose and length of time on them. I did it over a year. Good luck.
Mine’s a positive story; I’ve been on Sulfasalazine and methotrexate since first diagnosed with RA about 9 years ago. Hydroxychloroquine on the other hand I couldn’t tolerate.
I had 3 very good years on SSZ but then I became intolerant to it. I was able to walk better and pain was manageable. I’ve struggled with lots of different meds since. So as others have said it’s trial and error and what suits one won’t another. Go with the advice of your rheumy but if you still have the side effects you’ve described then get back to them and get a change.
It's been great for me; started on Hydroxychloroquin and Methotrexate which helped but still had issues. Sulphasalzine was added and it was a game changer - joints improved and as a bonus, my longstanding IBS-C did too. I've recently started reducing my Methotrexate so if that is ok I think that it will confirm that my instinct that Sulphasalzine is doing most of the heavy lifting is correct.
After being unable to tolerate Methotrexate I was put on Sulfasasalzine around 5 years ago with hydrochloriquin and for me it was a new lease of life. Im on 3 grams per day and some days I feel like I dont have RA. I get flare ups now and then and take etoricoxib which helps. Overall my story is a successful one with Sulfasasalzine.
I have taken 3 tablets twice daily for years without any issues. I do remember feeling a bit sick to start with but it settled after a bit. It does not sound anywhere near as bad as what you are describing. However, I could not tolerate Methotrexate at all in any form. Tried both tablets and injections. Not all drugs suit everyone. I would not take any more if you could not tolerate it the first time. Sometimes it takes a bit to get used to some drugs but still you know your body.
thank you all for your own stories it confirms what I have been told and read that Sulp is usually well tolerated . I could manage the headaches, dizziness and bowel issues in the beginning but the fatigue and general unwellness got worse and worse then the burning sensations over my skin !
So will stop for 10 days and start from the begining again which I have been advised to do , already feel much better after 2 days I have an appointment is 3 weeks .
The difficulty for me and the rational behind this prescription is I don’t have crushing joint pain just a little general stiffness at times but my Consultant thinks because my middle finger is a little swollen and ultra sound shows this synotendonitis that it’s the start of Inflammatory Arthrities .
The 5mg Pred is for PMR which I am trying to slowly taper , but not at the moment .
Sorry for my long post and wishing you all continued good health .
I think everyone is different,I lost my taste over Christmas 2yrs ago and felt awful with it.I am now on methrotexate and feel great ,but others can’t tolerate it .Hopefully you will find a med that is good for you.
It's clear that everyone's experience is different with sulpha. Some positive, some negative as with many drugs because we are all different. My experience is positive. I was originally prescribed sulphasalazine because I couldn't tolerate methotrexate. Initially it made me feel queasy and a bit lethargic but I persevered because I was desperate. After a while my inflammation lessened and I no longer felt sick. I still take them (3 in the morning and 3 at teatime). I always take them alongside food and I also take 20mg of omeprazole daily which I think helped with the queasiness. However, I accept that it will not suit everyone. So I would follow your rheumatologists advice and give it another try. You can always stop again.
HiI've been on Sulphasalazine 1500mg twice a day for 2 years + 10mg leflunomide once a day since I got covid in 2022, and it altered my immune system and they introduced leflunomide, but i must say I've had no bother with salfasalazine since I started it in 2019, but each med affects people differently and its trial and error till they get the one that suits you, good luck you will find the one!x
Hi. Reading so many posts and replies these past few days I've come to appreciate much more fully just how differently people react to different rheumatology meds. I am on sulfasalazine a second time after having been off it for several years after my disease (MCTD) went into remission. It is a horrible drug. My side effects were like yours - dizziness, fatigue, a sort of brain fog, just plain feeling sick. But first time around I somehow stuck it out (on 2 gms a day) and my side effects disappeared completely after 8 months. I felt back to normal, continued the med, and it controlled my disease very well. This time around it seems to be even worse. There are days when I'm a total basket case and can't do Anything. I'm seeing my rheumatologist soon and hoping to find something more tolerable. I wish both of us the best of luck.
Thanks for your comments sorry you’re feeling so rubbish . Now been off the Sulph for 8 days and improving but do now have intermittent tingling in face , arms and legs . A bit like crawling sensations …. It’s flippin endless and very unsettling ! Waiting for a call back from Rheumatology nurse .
I am going to just stick with my 5mg Prednisolone for now and perhaps try again in 4 weeks .
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