Sulfasalazine and itching

[Marionfromhappydays]

I am just in my first week at taking sulfasalazine, just about to take 3rd days tablets and i am progressively over the days getting itchy.

I've read its a side effect but I am cautious as it could be a start of a allergic reaction. Its not enough to drive me crazy just wondering how common it is and whether I should just power through (i am a bit or a worrier sometimes).

No rash .

Big thanks x

[Ms-D]

Hi. Sorry to hear you are itching could be you are allergic to sulpa. I came out in hives so they stopped. Hope you get some relief x

[Marionfromhappydays in reply to Ms-D]

Oh no, thats no fun !

I guess you have to try something new?

[Ms-D in reply to Marionfromhappydays]

Im on benepali but thats given up on me too. Hopefully you find out whats causing it. Have you spoken to rheumy team?

[Marionfromhappydays in reply to Ms-D]

I've just emailed the nurses so hopefully hear back tomorrow.👍

I'm not keen on taking drugs and these aren't particularly nice ones so I do worry a bit.

It sounds like alot of trial and error, hopefully onwards to a better one for you. It's rubbish we can't just have 1 thing we know will work but it's good we have these ones to try; My nan had this too and she just too Finn and Salt !

[Ms-D in reply to Marionfromhappydays]

Hope you manage to get some relief from the itching. I tried the meds twice, first time round in November after increasing to four tablets a day, i fainted at work so the team stopped me taking any more and then earlier this year i was told to try and take them again but after 2 days i was covered in hives and red raw. I hope this does not happen with you but these are horrible tablets to take. Some people on here have been on the for years and no issues but some are not so lucky. Try calamine lotion or E45 if you have for the itching x

[Hidden]

I got itching best keep an eye on it . Try an antihistamine if the itching goes it could be a reaction then contact your team .Mine progressed to numb tongue and lips and ambulance . Not for a minute do I think this will happen to you .

[Marionfromhappydays in reply to Hidden]

Thats horrible, you must have been so worried. Had you been taking sulfasalazine long ?

[Hidden in reply to Marionfromhappydays]

No after one tablet I got a headache and other symptoms including itching it was day 4 and 5 that things went wrong

[Marionfromhappydays in reply to Hidden]

😪

Thanks so much for your reply, think I will give the nurses a ring tomorrow as I'm new to all this !

Sorry to hear they didn't work out for you x

[Lolabridge]

I had itching from it and then a rash with a full blown allergic reaction. Do keep an eye on it.

[Marionfromhappydays in reply to Lolabridge]

Thanks so much for your reply, ive emailed the nurses now as better safe than sorry.

Sorry to hear you had this experience with it x

[Lolabridge in reply to Marionfromhappydays]

Very sensible of you. 🤞🏻Have you got any antihistamine in the house? If not perhaps you could get a prescription or just buy some for your pharmacy.

[Marionfromhappydays in reply to Lolabridge]

No I haven't, will have to get some. The joys of RA eh !

Thanks so much x

[Hidden]

I am on day 7 and finding my head itches a lot but I am also taking 2 benadryl a day as well. Lots of horrible headaches too. Staying on it just gone to 2 a day now and seeing how i go for another week. Just keeping an eye on it all.

[Marionfromhappydays in reply to Hidden]

Yeah same here, my scalp is really itchy along with rest of body.

Will go and buy some benadryl then tomorrow. I have emailed the nurses because I'm new to all this malarkey.

Thanks for tour reply x

[Gnarli]

Ooh nasty! A lot of people here are on Sulpha and it suits them very well. However, it didn't suit me. I managed three weeks before the headache, itching etc got too much. I rang the helpline and was told off for persisting with it

[Marionfromhappydays]

You did better than me , only on day 3 !

I'm so glad I have the nurses to email and this forum, you've all been a great help x

Thank for your reply, hope you found a medicine that helped you without side effects x

[Gnarli in reply to Marionfromhappydays]

Gave up on hydroxychloroquine on day three. There's no point going on taking something that makes you feel 20 times worse. Still on MTX, it's over three years now. Yes, there are side effects, but manageable. Wishing you well

[Marionfromhappydays in reply to Gnarli]

thank you x

[jezebel53]

This brings back so many bad memories for me, this medication gave me nearly 2 years of misery, even though I was taken off it after 2 months, it left me with Chronic Urticaria and an endless daily ritual of lotions, creams and medications. It was a chance appointment with a different GP which brought about an end to my misery. I sincerely hope it settles down for you.

[Marionfromhappydays in reply to jezebel53]

Oh no thats awful, 2 years is a long time. X

[Niffer78]

I started on sulfasalazine earlier this year, week 1 I got headaches on days 3,4 and 5, settled after that and in weeks 2 and 3 just felt a bit tired and rough. Week 4 (up to 4 tablets a day) was the worst for me. Headaches, nausea, insomnia for 3 days straight, tingling legs and arms, and itching all over, however I kept an eye on it and persevered, thinking that it was just the increased dose causing it. After the end of week 4 it settled down and not had any side effects since (now on week 12).

Definitely keep an eye on it, I only persevered as for 3 weeks I was OK on them, so felt it was unlikely to be an allergic reaction as it took so long to get that bad. If you've reacted this way immediately, I'd definitely speak to your RA team and see what they say.

You've mentioned you're a worrier.... That's a good thing right now, you absolutely should be alert to these things and don't dismiss them. It may be a reaction which means they aren't suitable, but I know it's hard to determine whether it's side effects and to be expected, or whether it's something more serious like a full blown reaction. Keep an eye on it, speak to your nurses and if it doesn't feel right, go with your gut feeling.

Hope you feel better soon xx

[Marionfromhappydays in reply to Niffer78]

thank you so much, I'd like to keep going with them as want my joints to not hurt but itching is bonkers

[Barrister]

I started itching within a few days of taking this. I called my rheumatology nurse helpline and was told to stop immediately.

Clemmie

[Nuttyshirlz]

Hi I also suffered with headaches and itching at the start. I emailed my nurse and was told to keep an eye on it but to bear with it, and continue with it for a few more weeks. If it hadn’t changed to email back I continue with and it’s It made a big difference to me. I’ve being on it nearly 4yrs now. With no problems. Just the odd itch now and again.

[Marionfromhappydays]

I've been told to stop taking them for a week and take some antihistamines.

Think they want me to try again next week as might be initial reaction to a new drug but I'm not too keen. I don't know if its me being a bit of a whimp !

Thanks all for your help

[Boxerlady]

I can understand your reluctance but if they really think that it's a good idea maybe you could give it another go?

When the nurse went through possible side effects with me she said that if there was a problem I should drop back down a dose, give it a few days and then try again. I know it's slightly different as you've just started them but maybe temporary side effects are quite common with Sulfasalazine? This is the only time I've been given this advice rather than telling me to just stop if I have problems.

Obviously it might not be the right medication for you and there are lots of other options but it does seem to be starting to help me 🤞

[Marionfromhappydays in reply to Boxerlady]

I would like to continue taking them as I am desperate for something to work for my joints, ive bought some piriton so debating taking tonight's and seeing how I feel tomorrow.

Although I've just reread the nurses email and they say if I do start again next week have a low threshold and if I itch again its not one for me...

I don't know ! Like I said I do have a tendency to worry so.perhaps I need to give it a longer shot.

Thanks for your reply x

[Hidden in reply to Marionfromhappydays]

My joints felt better even on the few day’s I was on it that’s why I continued but it wasn’t for me. If you do decide to give it another go be observant. X

[Ms-D]

Hi how did it go with nurse? Any solution?

[Marionfromhappydays in reply to Ms-D]

Yeah the nurses said to stop the sulfasalazine and get some antihistamines, they said if i wanted I could give the tablets another bash after a week and if I got any rashes or short of breath to stop straight away.

I took some Piriton yesterday and it really helped with the itching so I took my tablet yesterday night and so far the itching isn't too bad today. I was really conflicted about carrying on taking them but I think I'm being a little anxious about side effects so will continue to take them but am super aware about rashes etc.

How are you getting on with them, still itchy ?

[Ms-D in reply to Marionfromhappydays]

Well ive stopped the meds since feb this year but the heat is not helping. Im swollen and in pain all over. This suck xx

[Marionfromhappydays in reply to Ms-D]

Sorry I got confused ha ha these darn tablets !

Yeah the heat is getting up there today, I'm definitely staying in the shade xx

[Tompark]

It’s worth persisting if you can. I am on week 4 and already it’s made a huge improvement in pain levels.