NRAS

The yellow world of Sulfa

The yellow world of Sulfa

Does anyone get on alright with Sulfasalazine ?

I started it 3 weeks ago along with MTX injections. This 3rd week on 3 pills its colouring everything. Swimming aching head, burning stomach acid, shivery and worse widespread pain in more joints.

I know mostly the advice here is stick it out and give it time but my positivity is deserting me ....

It would be good to know why it might possibly work but all I can find is nobody knows how and it sometimes can do.

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I can only tell you it has helped me x after taking four a day I had awful heartburn, I called RA nurse who advised to drop a tablet then to up it again when feeling better!! I thought what’s the point so I persevered and now all ok? I could not take MTX as it affected my liver x so was taken off x I am now on Sulpha x 4 a day and 1 Hydrox x still have pain sometimes but at least I’m not a walking zombie as I was on MTX . It has taken me 3 years to get here, and it’s an awful journey. All I can say is the future seems brighter for now x hope you feel better soon 💕

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Thanks for your kind wishes Doughnut and it's good to hear that persevering saw you through with the Sulpha. And yes it is a hard journey when nothing seems to improve

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Hi

I was also the same way and I rang my nurse and she told me to take a week off and try again as it helps and since trying again I’ve had no problem with it and she was right 🙂 Im also on methotrexate and had problems when I first started with liver counts etc. which I was on before I started sulfasalazine still in pain too but live in hope oh I’ve also got high blood pressure now and on two different tablets for that too.plus my folic acid six days a week x

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Thanks for replying Nuttyshiriz. I am thinking maybe I will go more gradually if my GP agrees to this.

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My nurse started me with one a week over four week period until I got to two morning two night.did you not get started gradually x

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yes I got started the same way , increasing by 1 a week and was ok for first 2 weeks until I got to 3 a day.

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Lol yes that’s what happened to me too when I got to 3 but now I’m ok x

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I'm fine with it. The first few months were dreadful as gave me awful excitable stomach problems. Hugely embarassing and unpleasant but bearable, and slowly started to wear off after a couple of months. Now been on it 7+ years with no problems.

However we are each different, both in our reactions to drugs and what we are prepared to tolerate and for how long. So if you feel it's not for you then tell your medical team and see what they say.

Other thought is are you sure you are not coming down with flu?

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thanks Helix. Its easy to think everything is caused by side effects after starting a new drug...maybe it is not all caused by the sulpha.

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I can only talk from experience and my cocktail is slightly different. I was started in hydroxychloroquine and sulfasalazine. Felt dreadful for 3 months. Flare hasn’t gone down, flu like symptoms, sore throat, temperature etc. Then they added methotrexate and by 4th week I felt sooooo much better. Maybe give it a bit longer. Xx

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You need to give it a good 12 weeks. Eek xx

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Thanks Jules. 3 months feeling dreadful sounds really bad but wonderful you are so much better. I am feeling a lot stronger from reading experiences like yours.

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I'm not going to lie... the first 3 months, while they were trying me on different medication cocktails, and I was still in full flare, were the toughest 3 months. But as soon as something works, you will feel it. I just hope they find the right thing for you. Try not to panic, and know that it will get better. It sometimes feels like groundhog day, every day waking up and not being able to do anything, but you will get there. I could not have made it without this place... so keep talking ok? xx

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All the side effects subsided after a few weeks on sulfa, and I felt so much better, but developed a cough and asthma and had to stop.

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Thanks for your reply Mmrr. what a pity you had to stop when it was making you better.

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I had a major rash come up within 3 hours of taking it. Stopped it for 2 weeks and retried it but rash returned again so had to stop it completely.

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I also developed a rash and was taken off sulfa 15 years ago. Been struggling to find a suitable med recently so asked rheumy about trying sulfa again. She didn't think it was a good idea.

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Thanks Wishbone. I gather a rash means an allergic reaction to sulpha so would have thought that would be the end of taking it. I hope you find something that works

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Yeah, I guessed that, but no harm in asking I thought as I'm driving along desperation boulevard trying to find something to partner the hydroxy I'm taking. Rheumy thinks a low dose of azathioprine is worth a go.

Hope you get sorted soon.

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Thanks for replying Neverending.

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Yeah, I do. Sure when I first started taking it, I think it was 8 tabs a day, I had a bit of an upset stomach but I've been on 4 tabs a day for years now and I don't much notice it. I think it alone stopped my RA dead in its tracks so I'm very grateful to sulfa. But it's like anything else. What some can tolerate others can't.

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Thanks Clariana.

great to hear it can work so well and stop RA "dead in it's tracks"..sounds worth persevering and giving it change to work

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Oh I'd say it's worth it! Next step up is Methotrexate and that is REALLY strong.

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I had to come off it , it made me feel drunk all the time, dizzy,sick , I went onto hydroxychloroquine along with methotrexate, I stayed on this combernation for 15yrs just moved onto cimzia

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Your symptoms sound awful! :( But yeah, somebody made the great point about us always assuming it's side effects of our drugs & not something else, maybe that's what's happening? I guess if time goes on & you're still feeling the same way it's more likely to be an adverse reaction to the meds, or maybe you're on the wrong combination? Sorry, that's not helping much at all!! I've been on Sulphasalazine for a few years now & it definitely helps me! I was on 5 a day, reduced it over time till I was on 3 a day, but started feeling really achy again so was put back up to 4(2/2 morn/night) & everything felt much better again so I know it definitely helps me. I didn't get the symptoms you're experiencing, just the bright yellow pee initially. I was also on Methatrexate with it for a while but it didn't agree with me (started experiencing breathing issues) so was taken off it & put on a biologic along with Hydroxy & Sulpha... Seems to be keeping things at bay for now :) If you can have a chat with your rheumatologist about it that might be the best option - my GP doesn't have a clue when it comes to anything to do with my RA. Good luck, hope things ease off for you soon :)

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Thanks LadyLou,

What you say is encouraging and yes I am maybe laying too much on the sulpha. I rarely have contact with rheumatologist, living in remote place but here care is shared with the GP which works well.

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Hi roseyx

I haven't tried the sulfur as yet I am on mtx 25mg injections*I hydroxychloroquine daily * folic acid 6 days a week * 2 x 75mg pregabalin which seems to helping me to a certain extent but my rheumatologist is considering changing my mtx as my hands and wrists are still very painful, glad to hear you are starting to see some improvement and hope it carries on for you x

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Thanks for your reply Lincolnimp. I hope things get better with your hands and wrists.

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Hi! I also had a bad reaction I had anxiety and was up all night! Felt confused not myself! I was on it for a month at 2 pills a day ! Plus it was screwing up my blood tests! Doctor took me off and put me on Azathioprine which I am doing good so far! I would stick with it a little longer! How is your blood work? If you really can’t stand it I would ask the rheaumy for another option.

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Thanks Terri, that's the clear message I am getting..stick with it for longer. But I recognise your sulpha description. I feel disembodied..

my blood tests are ok except the usual CRP and ESR up and low lymphocyte count.

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Sulfasalazine is processed through the colon and prevents colon inflammation which is why it is prescribed for ulcerative colitis. It also helps RA, but I don't think anyone is quite sure why. Mtx tablets are processed through the liver so you are getting a double hit. Your pee will be really yellow for awhile but it will tone down. When I started it, I was so sick I was ready ready to throw it away when I got up to 4 tablets. I went back to 1 and started over. That worked for me, but I don't take mtx.

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Thank you Sharon. I spoke to my GP since posting this and he suggests going back to 2 tablets for a week and then trying the increase again.Similar to what worked for you. It's the sickness I find hardest to handle too .

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If you can spare it, the good news is you will lose some weight. I lost 10 pounds in that first 30 days. Certainly not a fun way to lose some weight, but at least there was some reward for being so sick. :)

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I couldn’t get on with on with Salfasalazine, so am on MXT injections, I found it a horrible drug, felt awful all the time, headaches & sickness, hope you feel better soon.

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Hi Rosey, interested in your post as have been offered sulfasalazine or leflunomide as add ins at next appointment to make up reduced dose of Mtx. I had hydroxychloroquine but caused rash, sleeplessness and sickness all week ( yet most say one of milder ones) whereas Mtx just wipes out 2/3 days for me. Don't fancy Lef due to long half life so was going to do sulfa. Be really interested to hear if it improves with perseverance .

,

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Hi kerena.Thanks for replying. I will do an update on whether things improve or don't.

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Thanks Rosey, hope it improves with time for you.

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My story is similar to many others. I was put on sulphasalazine and hydroxychloroquine and then mtx - as part of the hit it hard and hit it early approach. After a yr on all three my fatigue was really bad and so I was told to remove hydroxychloroquine (as I was getting an instant tiredness after taking) and then due to raised liver (ALT) scores I was taken off mtx (which was in many case wiping me out for 2-3 days). Now I am just on sulphasalazine and the odd naproxen when mild flares occur and I'm much more stable. Pee is still yellow and fatigue is still a major factor but not as bad as it was when I was on all three. I guess we are all slightly different but my best advice is to persevere and try and find what works best for you - good luck.

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Thanks Pah. It's good to hear that Sulpha is working for you. I am persevering but still struggling with it's effects.

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