I have lupus and RA. I was on Methotrexate and Meloxicam but due to side effects and high blood pressure, my rheumatologist took me off these meds and I'm starting sulfasalazine. Does anyone have any experiences with this drug? My doctor stated that this drug stays in your body for years even after you stop taking it so if you have a reaction to it you have to take another drug for quite some time to get it out of your system which has me a little concerned. Any ideas on this? I would appreciate any feedback.
Sulfasalazine medication for RA and lupus - LUPUS UK
Sulfasalazine was the first drug I took, when I had a diagnosis of inflammatory arthritis, before SLE was diagnosed.
I took it for about 5 years, at first it worked very well and I was free of symptoms for several years.
I had no real side effects other than bright yellow urine which actually stained our loo, much amusement from husband!
Incidentally methotrexate made me very ill!
We are all individual, I hope it works out for you
Am glad creaky replied: her experience is important testimony to the variability of lupus...because generally the recommendation is that lupus patents avoid sulfa pharmaceuticals, eg sulfa antibiotics.
You're so right to think carefully about this & any treatment...cautiously considering the risk/benefit balance from your experience & your perspective... & asking your medics informed questions
Apologies if you've found this info already, but:
I'd not heard of sulfasalazine, so I did a bit of research & found this excerpt with relevant sulfasalazine info on the arthritis uk website in its lupus info section...sulfasalazine is mentioned at the end of the para I've pasted in below. Here is the link to this info:
And here is that excerpt:
Azathioprine (AZA) (1–3 mg/kg) is the most commonly used steroid-sparing agent for the management of patients with SLE.43 The effective metabolism of AZA is dependent on normal thiopurine methyltransferase (TPMT) activity. Patients should therefore be screened for a homozygous deficiency of TPMT (present in 1 in 300 of the population) which results in an extremely high risk of bone marrow suppression.44 In homozygous-deficient patients AZA should be avoided. Patients with heterozygous deficiency should have their ‘target’ AZA dose adjusted downwards by approximately 50% and any further dose adjustments should be carefully monitored. In patients with inflammatory arthritis methotrexate (MTX) is often beneficial in controlling synovitis and may also reduce cutaneous disease.45 The effect of MTX on disease activity appears to be rather modest, but there is clinical trial evidence that MTX can allow more rapid and greater steroid withdrawal.46 Sulfasalazine is usually avoided in SLE due to its association with drug-induced lupus. The evidence for this association is, however, limited to case reports and has not been clearly demonstrated in larger cohorts.47
Please let us know how you get on
You've had 2 great answers already but thought I would add my experience too.
I also have SLE and RA plus a few others and am on Azathioprene as told by my consultant MTX ok for RA but wouldn't really touch my lupus and sulfasazaline is not good for Lupus sufferers due to percentage of lupus patients having very bad reactions plus as barnclown said it has been linked with drug induced lupus but as you can read on here different specialists have different ideas.
I have found Azathioprene (Imuran) has helped a great deal even shrinking my highly enlarged spleen back to near normal size .You do have to be tested as coco said before starting it and be closely monitored but I think that's pretty much the norm for most of the stronger meds.Also of course each one of us reacts very differently to meds so it is a very individual personal thing .
Do you have a specialist nurse you could talk your concerns over with or possibly ask if there are any other options available to you that might be worth trying?
Wishing you a better time soon
I fell into this forum by chance, as am an RA patient so normally stay on that one. I just wonder if your consultant meant Leflunomide? As that's used more for lupus and is a drug that hangs about and does need to be washed out if problems. Sulpha only has a half life of hours so I'm a bit confused?
Gosh that threw me you being on the lupus forum.😕
So used to reading your replies on RA one I had to double check where I was .
You're more than welcome here though 😆
you made a very important point though! Helix 😊
It's almost definitely leflunomide rheums talking about as half life of four weeks where sulphasalazine is ten hours. And would be very rash of rheum to risk sulphasalazine with you xx
I have SLE, PsA (psoriatic arthritis) which is similar to RA in many ways and Fibro. I've been on sulfasalazine 500 mg x2 pills 2 times a day for years and years without any problems. I believe my SLE is a minor case. I'm also on hydroxychloroquine and leflunomide.
My husband had RA and PsA and took the same amount of sulfasalazine without any problems.
SueszThe main point was there is no washout for sulphasalazine and there is for leflunomide - it's unusual for a rheum to use sulphasalazine knowingly in an sle patient just like they may avoid hydroxychloroquine in PsA as it *may* trigger/worsen psoriasis. It's not a never scenario, it's risk:benefit ratio calculation. If there are others to try then they tend to choose ones with less associated risks. And that's how I like it 😉
I personally would rather NOT risk sulphasalazine. My diagnosis is PsA with MCTD and on top of that my mum was very ill from sulphasalazine, she'd all her skin practically and was in hospital for weeks. As I seem to have inherited her genes I will pass thanks.
We seem to have similar disease pattern. I have rheumatoid stylee PsA with mild sJorgen's pericarditis and ? APS - the blood results without the clots and with no miscarriages. I'm on methotrexate hydroxychloroquine (had no psoriasis and still don't!) and about to start leflunomide. Been actively PsA / mctd for about 18 months and not winning yet. But I will 😡
Thanks everyone for your input. Yesterday was my first day of taking sulphasalazine and I had a rough night and didn't get much sleep unfortunately. I also take gabapentin which usually knocks me out at night but last night it didn't help. I was in more pain than I have been and was really itchy which I know can be an allergic reaction. The only problem is that I started a blood pressure medication at the same time so I'm not sure which one might be the problem. I'm really baffled why my Rheumy would prescribe this med for me if it has the potential to make the lupus worse. I was just diagnosed in December but my rheumatologist has been really good and understanding when I experience issues. He also keeps my blood monitored and made a point of telling me with this med it would be monitored even closer.
I was diagnosed by reactive artheritis and started taking sulfasalazine. For 2 weeks All my symptoms were disappered. BUT after that I started having a high fever (above 40) and enlarged lymph nodes!!!! Later, I was diagnosed by lupus that sulfasalazine was making the symptoms worse !!!!
I had a bad allergic reaction. Head to toe pimply rash in the middle of a heatwave. They’ve now decided I have a sulphur allergy although am on hydroxychloroquine sulphate. Hope you have better luck xx