I felt sick and was very occasionally sick when first put on it, but i stuck with it and it wore off and unless im more tired than usual im fine but it took a little perseverance. Good luck.

Took me three months to get adjusted to them (sorry!) but then was fine for next 8 years.

Hi. This is something I posted a while back......

I’ve been on sulpha since October last year. Was on 4 per day up until jan this year; it seems to be doing the trick and in the last month I’ve upped it to 5 per day. What I can say is that the joints although not completely pain free do feel much better. Not sure if this is due to the extra tablet or due to how long I’ve been on them?

I did forget to take them for a week in Dec when I was on holiday; well largely because of the booze; which caused a flare but that is back under control.

I wanted to give the sulpha a go before moving to MTX and have to say I’m pretty pleased thus far. Although it does make me a bit fatigued at the end of the day. On that note; what do people use to fight fatigue ??

Before sulpha I struggled to exercise but now I spin most days and if I listen to my body I can go for long runs every now and then.

I’m just 40 so hoping sulfasalazine will work out in the long term!

I was OK up to 3 tablets then on increasing to 4, I started to feel nauseous so went back to 3. But eventually I managed 4. Not on it any more, but I hope to ask my rheumy if I can add it to my Leflunomide and MTX when I see her tomorrow. Bet she says no!!

My rheumy emigrated and while waiting for his replacement I got lost in the system. When I bacame very anaemic my GP stopped all meds as she suspected I had internal bleeding. She referred me again and when I got a new rheumy he put me on MTX. I still have intermittent anaemia but there's no internal bleeding and never was. Leflunomide is great, but caused high BP.

Hi I started these tablets almost a month ago, like you once I was on the second week moving to two tablets a week I was extremely tired and just general weak feeling and not myself at all. I just took it easy as best I could an carried on increasing the dose every week, I'm now on the four tablets a day and I'm pleased to say that tired yucky feeling is now getting better. I guess it's just our bodies getting adjusted to new medication. My pharmacist said to make sure an take it with food and keep well hydrated and thankfully that has kept the nausea away.

I got massive migraines when I tried upping the dose. Ended up coming off it after a few months.

Methotrexate didn't suit me and I was switched to sulphasalazine. That was 14 years ago. I take 6 a day. They worked very well and the nausea subsided after a couple of months. After about 5 years they became less effective and a biologic was added but I am still taking them because they say biologic treatment works better when used alongside a dmard. Hopefully your nausea will settle down but if it doesn't or gets worse speak to your nurse. I was told it takes at least 12 weeks to become effective. Best wishes.

I was on Sulpha years ago and felt very unwell on it.Just felt so sick all the time and lost almost 2 stone on it in a short time.People that had not seen me for a little while were shocked and as soon as i was seen by my Rhuemy she stopped them right away and it never helped me in any way but some people do well on it but it was not for me.

I stayed on SSZ too long. I had nausea on it for which I was prescribed an antiemetic by my GP, but it didn’t help either. Circumstance really as my Rheumy was on extended leave & nobody would take the initiative & stop it, not the nurses, nurse prescriber or a locum Rheumy. Even the highest dose, nothing. It was as double therapy with MTX & when it was eventually stopped it was replaced with leflunomide which also had to be stopped. I remain on MTX.

Just a quick one! I've been on it years, no issues except, bright yellow pee!!

For me, along with my other meds, it works, long may it continue!!

Good luck with it 🤞🤞

Hi,

Totally felt the same and it was a good three months getting back to feeling ok. It would just suddenly come on and I would feel shaky and sick. Been on it a yeah and Now I take it without even thinking. I agree it so hard though, if someone could have told me I would feel better in three months it would have been a lot easier to keep going!

Good luck

Hi.

I would mention it to your rheumy nurse. I was on it briefly. First week fine, second feeling not myself, third week nausea and fourth I had a bad reaction. Skin flared up with all over rash and I was so ill. My bloods were all over the place. I saw my GP who told me to stop ASAP. So for me I am very wary (I’ve never had a reaction to meds before).

I appreciate it’s another strong meds which is great for some people. However keep alert of how you feel and react.

Good luck

Hi

I am on sulazalphine and 2weeks short of the 3 month mark.

I still feel nauseous occasionally but generally feel Better in my self. Stick to it as everyone has said we will both start to feel better.

Regards

For me, the nausea got worse as the dosage increased. After several months on 6 tablets per day, I reduced back down to 4 per day and the nausea has almost disappeared. Now taking methotrexate by injection too. So far so good. 😊

Hi Laura. Don’t hang around waiting for the nausea to pass please. Get your bloods done just in case and call your reumy nurse next day. They might be able to prescribe something for you. Or pop into your chemist. There might be an over the counter med you can have to settle things down for you. I’ve been silly in the past putting up with discomfort for whatever reason because I believed it’s just how it is and I have to accept it. It’s not necessarily so. You’ll kick yourself if you put up with this for another month just to find there’s a simple solution for you. I had sz for a good while in my early stage and had good results. No side effects except of course the yellow pee. 😂

Hello Laura , I've been on sulphasalzene now for 5 or 6 years. Started on lowish dose, increased fairly quickly to 6 a day. It has really made a big difference, less rheumy pain and flare extremely reduced in severity. No side effects. I do have pain from osteoarthritis, bursas and tendon trouble and so on but the underlying didease iscwell managed. Must be lucky so good luck to you also!

If I remember right think I was a bit off for first couple of weeks when took them but my nurse told me to bear with them and I did and she was right lol being on over 3 years and no side affects now. I have a banana when take mine on morning and evening ones take after tea 🙂

Ssz didn’t work for me, made me sick and tired. After 4wks had a nasty allergic reaction and plummeting white cell count. Made me really sick. Taking MTX and hcq now and these are working well so far, about 4mths in. Good luck with your medications - hope you find one that works without too much side effect

Me too I asked for the coated ones as some didn’t seem to have it helped a little

I was so pleased to see your post and the replies Laura, I'm about to start sulfasalazine too. I started on MTX tablets, moved to injections and couldn't tolerate either. It's hard to know how long to persevere isn't it - I really hope it settles down for you soon.

Thank you and I certainly will. I'm starting on one, increasing each week and hoping I don't feel as wretched as I did on MTX. Good luck with your increase tomorrow . 🙂

Hi Laura

Sorry for this post but sulpha did not work for me. I tried to stick with it but I was in a constant flare which had me at the end of my tether. The consultant then put me on methotrexate which I had a really bad reaction to. I am now on benepali injections and touch wood they seem to be working. I feel like I have some of my life back, mind you i sometimes overdo it when I'm having a good day then the R A surfaces just to remind me it's still there. I hope it works for you and you get some ease from the pain take care x

I had problems with increasing the dose and the Rheumatology nurse told me to take the one tablet for two weeks and then try to increase to two. I would check with the nurse for an opinion if you are not feeling great.

I wasn’t sick or anything but on monthly blood test they discovered it was destroying my red blood cells. Make sure you get monthly checks.

Was on it for a few months

No real side effects only it didn’t work for me

Hope you have better results

Hi, I’ve been on sulphasalazine, MTX, and hydro chloroquine since January. I struggled with bad nausea for the first few months, we cut back the sulphasalazine to 2 tablets after 2 months for a few weeks then back up to 3 then 4 and that helped. I also always take tablets with food and also found that it’s better to spread the 4 tablets out over the day rather than 2 in morning 2 at night. Hope you feel better soon, the nausea is such a struggle. X

I have been on this for about 4 years I was also taking humira and now have changed that to truxima I take 6 pills a day and doctor was hoping to reduce the dosage but has not worked out that way get headaches and am quite fatigued and not sure which drug is doing it but hopefully it works for you

Hi Laura! I have been in SSD along with mtx for about three years. I haven’t had any serious side effects and the benefit to me has been amazing. I was considering retirement as I couldn’t even hold a pen - my daughter wrote all my Christmas cards before medication. Don’t suffer - speak to your nurse she will be able to help you. Fingers crossed they soon find you the medication that best suits you - it will give you your life back. Take care

I was fine on 2 tablets but once it increased to 3 and 4 that’s when my problems started! Reoccurring ear infections fluid trapped behind my ear drum for 3 months it was horrendous! I’m now partially deaf due to the amount of infections I picked up whilst on the medication, and have to wear hearing aids at the ripe old age of 37 . Hopefully you will have more luck than me.

Been taking it daily for 17 years. Had orange pee for 17 years. Taking 2 two twice a day. But Scottish rheumatologist refuses to diagnose RA, even though I was diagnosed with Sero negative RA in South Africa. The sulphasalazine stops the prickly heat in my hands and feet, 30 mins after taking it. Thìs non-diagnosis is a waking nightmare.

My rheumatologist added SSZ when I was already taking MTX and HCQ, prednisolone and iron. She wanted to put me on four tablets immediately, but I said I was already taking so much I would rather start on a lower dose. I took one a day for two weeks and then 2. Then I got tinnitus and stopped!

I had to come off it because of feeling nauseous all the time, went on toMethotrexate tablets then injection. Do you take a folic acid tablet daily to counteract the side effects. Good luck with it.

Sorry to hear about your flare-up and tiredness. I was on Plaquinil (hydroxychloroquinone) but was allergic to it (quinone drugs) so I had to switch to sulfasalazine. I was on 2 tabs of 500 mg twice a day for a while but I had tonnes of pain after tapering off prednisone, so my rheumatologist upped it to 3 tabs of 500 mg twice a day - I am still in some kind of pain in foot joints but a majority of them are controlled, and finally off prednisone (yay!!!). I would suggest that you try to get to the right dose before giving up on it if you could. The pain may subside and if you control your diet etc, it might help when you're at the right dosage.

I've been tired too, but I can't be sure what the true cause might be, could be my Hashimoto's, or the fibro or RA or stress, all might play a role in it. I'm seeing her again in Dec to discuss other options. Once you have one autoimmune, there's a chance of a 2nd one too.

She was talking about biologics the last time I saw her but it's so expensive (I'm currently in US) so I'd rather stick to DMARDs if I could help it. I have insurance via my employer, it's just that in case of anything, biologics can be a huge bill.

Big hugs xx

MTX did for lungs but recovered now... then SSZ which caused emotional probs and brought suppressed anger to the surface... now on Truxima bio for 18 months or so which has been excellent. Still taking just 2 tabs daily of SSZ reluctantly but have displaced the anger. good luck . no replies please xx