Sulfasaline

[Whereisthesun]

Is anyone else on this and does it help? I’ve been on it for 2 months and I don’t feel it is.

[KittyJ]

if you put that into the search box and filter for NRAS then all the posts about it will come up. It can take a while to start working so hopefully you will start to feel some improvements over the next month or so 🤞🏻

[Neonkittie17]

it’s a slow worker. Well known to be slower than some meds for RA but it is good when it works. Was 8 weeks before I felt anything positive working and 12-16 before working fully. Give it a bit longer. I know it’s hard waiting. 💗

[Whereisthesun in reply to Neonkittie17]

Thank you for that. Yes I will try to be more patient. It’s hard though yea?…x

[Neonkittie17 in reply to Whereisthesun]

It is awful indeed waiting. Painkillers and a general steroid shot helped. So did physio and hydro. That was the best thing for me doing physio. Hang in there.

[Bagpuss2021]

I feel the same not worked for me either. have tried almost everything, last hope meds by IV. hope you find something that helps.

[Whereisthesun in reply to Bagpuss2021]

It’s a minefield isn’t it? I was offered the MTX but heard such mixed reviews it scared me a bit. I hope you get sorted x

[Oztrax]

needs 3 months to work, I was on it for 4 years

[Boxerlady]

I had it added to Methotrexate and Hydroxychloroquin and it made a difference very quickly but that might have been because my RA was already somewhat controlled. If you don't see improvement soon, it might be worth letting your rheumy team know so that they can consider increasing the dose or adding/trying something else. If you don't keep them updated, they'll just assume that everything is fine. Hope that things start going in the right direction 🤞

[Whereisthesun in reply to Boxerlady]

Thanks for that. I see my RA team every 6 weeks but I shall contact them today and let them know I need to do something else because the pains are getting much worse. How do you find the Methotrexate because I have heard such mixed reviews?…x

[Boxerlady in reply to Whereisthesun]

I find it good (along with the other two.) As with all RA medication, it's different for everyone but I just get the classic "Methotrexate hangover" the following day (I'm on quite a high dose of 20mg by injection) - feel tired and generally a bit "yuck". I arrange things so that I don't need to work that day but also find that doing things to keep my mind busy helps. For me, the worst time is 24 hours after taking it, so I inject early evening and spend the following evening on the sofa watching TV. I occasionally get some nausea but that could be any of them or something else and I cope with peppermint tea, Polos and ginger biscuits. For me, an acceptable price to pay for a relatively pain-free life 😉

[Hidden]

I have taken it, and still do for around 20 years and find it helpful but a slow start. It does damped the inflammation in your body and sometimes the does is increased slowly by the rheumatologist. When I first developed RA I found Naproxen did wonders to reduce pain and restore mobility when also taken . Like you I was nervous of Methotrexate and when I was offered it found it did not suit me. Eat a diet to reduce inflammation and keep within a healthy weight to reduce strain on your joints. It all helps. Rheumatologists have a series of different drugs they try to find the most suitable, but all have side effects and we all can have flair ups as you will read from posts here.

[Whereisthesun in reply to Hidden]

Thank you for your reply. It is very helpful. I have been looking into different foods and it looks like the Mediterranean diet is favourable. I always thought I was a healthy eater but it’s always good to try other things. I am at the point where I will give anything a go. X

[Hidden in reply to Whereisthesun]

A positive attitude helps enormously and find things to lift your spirits. I tried everything too and you will discover what makes you worse. Have had RA for over 40 years. I continued to work full time until mid 60s , still drive, garden etc. I avoided meds which I fretted about , for a long time due to fear of side effects , resulting in deformed hands. I keep them as straight as I can through exercise and occasional splints and using them with care. I also keep warm as it helps me. Biologicals were added in late 2022. Specialists know more today and blood tests give a good picture of the disease and treatment . We are all different. What works for one does not always work for another. Good luck.

[Whereisthesun in reply to Hidden]

Thank you Annie. I suppose I am in shock but also should be relieved that it has just reared its head at my age of 72. I have not had to suffer like you have. I am by nature a positive person and worked full time until I was 68. I still do volunteering for local conservation groups and I keep active. However this has now slowed my pace and I need to get my head around it. I’m sure I will once my medication is sorted and I find something that suits x

[Hidden in reply to Whereisthesun]

It is a shock at any age and hopefully you will have meds that slows it down and controls pain. Take care.

[Chockyuk]

Hello

I had it added to my Methotrexate as that wasn’t working on its own, so now I take both, and I have to say it’s worked really well. Took a few months for my hip pain to get better, my ESR was in the 100’s and after an MRI it showed severe synovitis, but now it’s almost back to normal.

I hope it works for you eventually 👍

[Whereisthesun in reply to Chockyuk]

Thank you for your reply. X

[Haz58]

Hi. I started sulfasalazine on 16th march but because I'd had stomach problems with MTX tablets, injections and Leflunomide instead of upping a tablet every week ive done every 2 weeks. The Rheumy have me Prednisolone when I spoke to her 21st April because of the slow build up of the sulfasalazine as I was having a massive flair. Within days I was so much better. 6 tablets to start going down 1 every 5 days. So I finish the pred in 8 days. Im going away on 28th may so she wants to leave the sulfasalazine as 4 a day until I get back when she may up it to get me to 6 a day. In the meantime shes given me a supply of pred incase I flare on holiday. She said I've not been on sulfasalazine long enough yet to make a big difference as yet. Maybe they could give you a steroid shot to help until the sulfasalazine kicks in properly. Good luck. X

[cyberbarn]

I took it for a couple of weeks and found that I was getting worse not better. Then I broke out in a rash. Turned out I was having an adverse reaction so I stopped taking it and they tried me on Methotrexate. So I hope when you contact them today they are there for you and will try you on something else.

[MaryinFL in reply to cyberbarn]

I was on it for four months and felt it was not doing enough. I hurt all over. I could barely walk for the pain in my lower back, hips, knees, and ankles. I just felt sick and tired all the time. I also developed a rash on my chest. When I stopped taking it, I felt immensely better - I also realized the pain I had been attributing to RA and sulfasalazine not working, was more muscular than in my joints. Because once I stopped the sulfasalazine, my muscular aches and pains subsided and my joints started to hurt more. So, clearly, while the meds worked against the RA it was not the right med for me. I just started Leflunomide last week, so we will see how that goes.

[Whereisthesun in reply to MaryinFL]

Oh dear sorry to hear that. Fingers crossed the new meds work 🙏🤞

[MaryinFL in reply to Whereisthesun]

Me too! It would be nice if we had magic pills... waiting months to see if the latest med might work is such a waste of time... but it is what it is, and I have my fingers crossed.

[Whereisthesun in reply to MaryinFL]

Oh wouldn’t a magic pill be lovely!… that’s both of us with our fingers crossed!…😘🙏

[Rascotland]

As others have commented, it's slow to work. I started on it in Jan and its only in the last couple of months that I have been seeing significant results. But now back to more normal cycling, swimming and walking, even managing first descent hill at w/e and should be able to manage Corbets and Munros again soon.

[Whereisthesun in reply to Rascotland]

Oh wow that is fantastic news!! 🤗

[Angels54]

I was on it but didn’t work for me .

[Whereisthesun in reply to Angels54]

I’m on my 9th week and feeling no relief. The rheumy nurse has said to up the dose to 6 per day from 4. Also suggested Naproxen for the pain but then I’d have to also take Omeprazole to protect my stomach. All these drugs? Freaks me out a bit x

[Hidden]

Hi. I have been on it for 12 years along with Mtx. I can tell straight away if I miss my meds. I take 2 with bfast and 2 with my tea (dinner).

The dose was increased incrementally. Your body needs to get used to things, and they don’t want to overprescribe.

Be patient. You’ll get there.