sulfasalazine

[gussmithy]

It's me again. I wonder if users of sulfasalazine could let me know their expereince of using this drug. Try to get an overall feeling for Methotrexate v sulfasalazine.

beat wishes all, and thanks to responses to my previous questions, Gus.

[bpeal1]

Unfortunately as with all drugs everyone’s experiences are different and you won’t know if it works for you and if you’ll get any side effects unless you try it.

Personally I take a large dose of sulphasalazine with no side effects at all (except the bright yellow/orange pee it’s famous for!) however, my friend tried it and ended up in hospital with serious side effects. She now takes methotrexate with no side effects and I really can’t tolerate that.

Good luck and I hope you find the right medication for you.

[AgedCrone]

Two very different drugs…..both have good & bad side effects…the only way to know how you will react to them is to take as prescribed.

[Munro76]

I take it along with methotrexate and adalimumab. Orange pee is the main thing. Although, recently it's not been as orange since starting adalimumab. No idea why. I haven't had any other problems with it really. I take 5 tablets a day. I tend to take three in the morning and the other two later. But they told me that there isnt any rule as such. You can take them all at once, or in smaller doses. The only problem is that, sometimes if i have a really busy day, I might forget to take the other two.

[LuzyCLL]

Sulfasalazine 500 mgs 2/day helped my joint and spine pain, but it made my eyes swell and hurt so much I had to stop taking it. Am ok with just methotrexate now.

[Pink75928]

I take Sulfasalazine, MTX and a biologic (soon to be changed). Sulfasalazine gives me the least amount of side effects. Just bright yellow pee and tears

[sylvi]

I am on both with no ill effects. xxx

[Pitbull2017]

Was on Sulfasalazine years ago not sure what benefit it was for me, I disliked taking it, from a man's point of view all and I mean all body liquids released from the body were yellow in colour, I always wondered what it does to your insides probably no harm at all but in my case it was physiological, but any small leaks stain your underwear, but from a medical point of view not sure how good it is.

[Gymcactus]

Hi I am on both for 5 years now with no ill effects, sulfa really helps with my morning stiffness, I would recomend asking for the enteric type of sulfa as that protects the stomach.

[13Lab]

It has worked well for me for 7 years but have gradually developed erosive oral lichen planus which is not pleasant…now switching to MTX.However it was good at controlling the RA.

[SlothSandpit]

I've been on Sulfasalazine for a few years now. When I first started increasing my dose, I got some really bad headaches and tinnitus but it went away after a while and I'm on the max dose now! I also tried Methotrexate, which made me feel really poorly for several days after taking it (pills rather than injection) and I was taken off it after a few months because of my liver enzymes going wild.

[Whereisthesun]

I’ve been on it now for 5 months now and for me it was a slow burner. I’m on 6 a day. I had side affects the first couple of weeks, mainly feeling sick but have no experience of any of that now. My consultant was trying to push me to go on Methotrexate but I was wary having read up on it and spoken to others who were on it. He’s been quite dismissive of me since I stuck to my guns but….. I have to say I now feel like the Sulphasalazine is working. My rheumatology nurse has been brilliant and supported my decision to stick with it. However as others have said it’s different for everyone! Good luck x

[hbowling]

Hello there. I was diagnosed in 2014, and was initially put on Sulphasalazine and had a very unpleasant few weeks. It left me actually unable to speak, move around and it felt like I had been put into some sort of suspension. It was really scary and horrible. Thankfully my Consultant stopped it and put me onto Methotrexate and it has worked great for me.

Hope I haven’t frightened you, but do speak to both your rheumy staff and your GP.

Very best of luck

Hilly

[Hidden]

I have been on Mtx & Sulf combo for 12 years. I notice straight away if I don’t take me Sulf. Works for me. No probs.

I take Mtx 25mg weekly & 2000mg Sulf daily (2 tablets with bfast and 2 with my evening meal).

[BMCV]

I couldn't handle SSZ at all. Nausea, headaches, loss of taste, brain fog. Lasted 6.5 weeks and had to come off it. I was put on a high dose of MTX and it has been a complete relief

[EL4321]

I take both! Have taken methotrexate for years and started on Sulfasalazine last year following a nasty prolonged flare. Took a while to have any impact (over 6 months) but now both are working really well for me. Side effect wise on the Sulfasalazine I seem to have avoided the yellow body fluids others experience, I did notice it made my skin a bit more sensitive and reactive but that has settled down a bit, otherwise no other side effects. Methotrexate does make me quite nauseous the day after taking but have recently upped my folic acid to try and combat. As above comments suggest everyone reacts differently and think it’s a case of trial and error sometimes to see what works for you

[Jakey2020]

Hi Gus, I couldn’t tolerate sulfasalazine but took to methotrexate better, my friends on both and ok. We’re all different !!!

[Lex54]

Hi I take both Sulfasalazine, Methotrexate and Hydroxychloriquine. Only thing is yellow urine and you need to drink plenty of water. I noticed a vast difference when I ran out and missed it for 3 days. Wasn't sure what difference it was making to be until that. Hope this helps.

[Garnacha]

Couldn't stand the side effects of methotrexate anymore & was switched to sulfasalazine (along with other meds) & tbh I found it much better than methotrexate, a severe pain I'd had in my ribs which the consultant said wasn't psoriatic arthritis practically stopped when I started it, I asked if I could increase from 4 to 5 tablets & pain went completely 😀 x

[Brunobadboy]

I had sulfasazine for a short time along with methotrexate. It really had no effect on me. My doctor stopped the sulfalazine and started me on benepali. This has been really good for awhile. Just starting to feel less good and suspect it will mean a change of meds when I next see her. Just proves that everyone reacts differently. Good luck with whatever you end up with.

[girli1111]

we are all different, but sulphasalazine appeared to give me nightmares, extremely vivid and also daytime panic attacks. I’ve reverted to methotrexate

[madme1]

I use sulphasalazine and metho, have upset tummy with metho but used to it. I found out from a rebal specialist that's sulphazalazine is also used to keep the bowls regular. As for discolouring the urine it gives a completely new meaning to the phrase golden shower!😁

[Lex54 in reply to madme1]

I feel your pain 😂

[LippyLu]

I take 8 SSZ a day (500 mg tablets) for UC and RA, plus 20 mg MTX once a week, and am currently also tapering off prednisone due to a flare. Initially the SSZ caused intense headaches for a few weeks, which were helped by drinking a lot of water and taking acetaminophen. After that my only apparent side effect has been bright yellow urine. For me, it helps a lot. MTX alone has been insufficient, Humira failed, and in general I prefer to avoid biologics due to the elevated cancer risk.

[acousmetre]

I lost a lot of weight (9kg) taking sulfasalazine because it diminished my appetite and gave me a certain amount of nausea in the presence of food. I'm now taking 20mg of MTX a week followed by two doses of folic acid (5mg each) taken over the following two days. This also gives me a bit of nausea although I don't know if it's the MTX or folate that's doing it, or both. But MTX has helped my psoriatic arthritis more than Sulfasalazine did. The nausea is getting less pronounced now too, so I must be getting used to it.

Oh, and MTX gives me pretty bad fatigue. Sulfasalazine didn't.

But as said above, everyone's experience is different.

Good luck.

[Bails67]

I was fine with it. I did have to have B12 injections while I was on it. Other than that no side effects. I was also put on MXT that was slightly different as it did cause me problems. They both stopped working eventually.

[Pitbull2017]

Something I was implying to in my first reply I said when I was on sulfasalazine all body fluids/liquid released turned yellow that applied to semen, thought I'd mention it for any younger person that might be starting or adding to a family, apparently it.can reduce sperm count in men.

[vharrison]

Hi. I was given this for my RA and gastritis and I did ok the first week but then really bad headaches began. I stopped it for a week to see and the headaches left within a day or so. Started back and again headaches so unfortunately, I had to stop.

[Wannabeabago]

Hi, Sulfasalazine worked almost straight away for me however I had a weird reaction in that it gave me insomnia amd made me feel like I was taking speed or 20 cups of coffee during the day. Racing heart, like well over 100 beats a minute.

Had to stop it. That sort of thing is not common though… go for it, could be the best thing you ever tried!

[Green230461]

I am taking baricitinib and four tablets of sulfasalazine. No effects and a lot less pain! Pee looks like malt whiskey though 🌺

[dippyd09]

As others have said, everyone’s experience is different with drugs. I’ve taken large doses of sulphasalazine for a long time with no side effects. I also take the maximum dose of methotrexate. We all react differently to these drugs so sadly it very much a case of trial and error for everyone. Wish you good luck.

[Mall]

I took both methotrexate and sulphasalazine together for a number of years.Started on sulphasalazine then later methotrexate was added hence not necessarily an either or drug. Be guided by your rheumatologist as we all experience drugs differently

[Delainie]

Hello, well I've been on these for about 18 months, the sulfasalazine, I've had no side effects so far and they are helping, although I take 1 400mg ibuprofen between morning and evening doses. I have to say they work much better if I don't have sugar or salt, that gives me bad flare ups, so I think I'd rather be on these than any of the others at the moment. It was suggested to have both, sulfasalazine and methotrexate and the consultant said sulfasalazine wouldn't work on its own for me, however it does work as long as I leave out sugar and salt and move about as much as possible each day, if I lounge around, eat sugar/salt, I'm swollen and in pain for days. Hope you find one that works for you.

[Chockyuk]

I’m on both - originally on just Methotrexate for about 2 years, but my inflammation took a turn for the worse, so my Consultant added in Sulfasalazine, and honestly for me it was a game changer.

I had an MRI and it showed severe synovitis in my right hip, I was in so much pain. But after my most recent MRI it’s completely resolved.

But as people have said, we all react differently to each medication, it’s all trial and error until you find what works for you 😊