Sulfasalazine

[Trishfrog1]

Anyone had issues with sulfasalazine? I feel low mood anxiety out of breath just generally unfit resting pulse rate is higher than used to be been on 4 tblts a day now for 3 weeks feel rubbish

[tyncwmmarchhywel]

Hi Trishfrog, yes it was rubbish for me to, low mood, just sat in chair most of the time, got to 4 tbs., and had to get off it, still stuck on 5mg of steroid, not been this unwell for a while.Hope they can suggest some thing else, its just finding it. Some really knowlegable and friendly people on this site,and better Spellers I think. Good luck.

[Trishfrog1 in reply to tyncwmmarchhywel]

Think I'll go back on methotrexate I had bit of low mood on that but not anything like I'm feeling on Sulfasazaline..I was on mtx for 13 years

[Potatos]

I had a very low mood on this. Felt like a cloud had lifted once I stopped taking it.

[Trishfrog1 in reply to Potatos]

I havent had any since this morning and all ready I feel different

[Potatos in reply to Trishfrog1]

Is your wee bright orange too?!

[Trishfrog1 in reply to Potatos]

Hi no bright yellow I've been drinking over a litre and half of water also a day

[Madmusiclover]

didn’t suit me. Other drugs are available!

[Spanelmad]

Have you had your bloods done?

[Trishfrog1 in reply to Spanelmad]

Due to have them done next week should have been in 4 wks but gone to 6 wks as coukdnt fit me in

[Spanelmad in reply to Trishfrog1]

Your clearly experiencing side effects, I'm hoping you've contacted your nurse specialist for advice?I had an allergic rash on sulpha ,it looked like sun burn.

[Trishfrog1 in reply to Spanelmad]

I will be on Monday cant carry on feeling like this.

[Mybirthday1975]

hi!

I have recently come off sulfazalizine,I was on 4 a day for over 6 months!I felt really really poorly like I just wanted to stay in lay down felt so tired low mood I looked really really pale headache basically I wasn’t living just waking up feeling rubbish every day!!😟at first I thought it was the RA.my consultant upped my metratrexate injection to 15ml but still felt poorly.I got to the point I thought this clearly isn’t right so I stopped the sulfazaleine and after a couple of days the tiredness had gone all the horrible symptoms that I had suffered for over 6 months have all gone away I’m hoping the consultant will up the metratrexate and maybe try another drug along side it but I have tried Hydroxyquine so don’t know what’s left!what symptoms have you had on sulfazalizine?

[Trishfrog1 in reply to Mybirthday1975]

Hi , I was like you get up didnt want to move just sit ..after doing something I'd go and sit back down , was really low mood weepy felt really anxious also..couldnt stand to even hear hubby walking around felt very irraitable which isnt like me ..my pulse rate was getting higher out of my personal range on my fit bit ..oh was having really weird dreams ....also after a hour or so after taking them.was burning up ...which added to the anxiety .

[Mybirthday1975 in reply to Trishfrog1]

Yeah I felt rubbish too will be staying clear of them never felt so poorly!!I don’t think what im onus strong enough as still have pain😞but a lot better in myself the sulfazalizine me me feel like I was dying but then I’ve heard sulfazalizine has worked wonders for others but most definitely not me!.

[Trishfrog1 in reply to Mybirthday1975]

I said to my hubby yesterday I feel like I'm dying felt so bad ..And weepy....I was on mtx for 13 years think I'd rather be back on that

[Jackie1947]

I'm sorry it's not suiting you all. I have that with lots of drugs but Sulphazaline has suited me for 18 years.

[Trishfrog1 in reply to Jackie1947]

The thing is its helped with my joints but I've no life on it which is a shame

[Piggyinthecraftroom in reply to Trishfrog1]

Sadly, sometimes you have to choose. It just seems to be that way…good luck

[Sunshinereturns]

I felt great on it but it caused my WBC and neutrophils to plummet and had to come off it. There seems to be a lot of us who can’t tolerate it.

[Prunes in reply to Sunshinereturns]

Same here. Only on it for a few days.

[Trishfrog1 in reply to Sunshinereturns]

Hospital been in touch today told me not to go to crowded places and if feel poorly to go straight to hospital my wbc has dropped too low ..she told me to stay in and stay warm ..until I have my bloods done again In 2 wks

[Sunshinereturns in reply to Trishfrog1]

That sounds really worrying, you have my sympathy. The whole thing is very stressful.

[Trishfrog1]

Something is definitely going on with me feel so bad ...not had any since yestrday morning

[Nuttyshirlz]

I was put on it in 2017 felt really rough and bad for first 6 weeks then suddenly one morning woke up felt great like my life back to normal and it worked brilliantly for me until last year it started to not rhemy dr said to stop and will look at something else in March so it’s got 6 months to get out of my body. I also started methz same year. My old nurse always said you got to go up the hill to get over it as it’s not a straight path. Like any medication it takes time

[Trishfrog1 in reply to Nuttyshirlz]

I went on it 2 weeks before Christmas didn't feel right low mood again and it's got progressively worse the thought of doing something is actually exhausting anxiety through the roof which I've not had for 30years...this drug is for me the burning up a hour or so after taking the high pulse feeling spaced out icant tolerate it .I Watson methotrexate for 13 years thought that was bad but this takes the biscuit ...in ringing my rheumatologist in morning

[Nuttyshirlz in reply to Trishfrog1]

Unfortunately like any medics it’s trial and error what works for you might not work for me. But I like many others it did work for and I was about to quit taking it but my nurse told to keep at and I’m glad I listen to her because I had good 7yrs with it

[Trishfrog1 in reply to Nuttyshirlz]

No way could I carry on with this Drug I'm used to feeling queasy and tired I was on methotrexate for 13 years ...this is hundred times worse feel shocking on it couldnt function

[Nuttyshirlz in reply to Trishfrog1]

Ah so you already quit before talking to your rhemy nurse I wouldn’t have done that until I’d spoken to them first because they could have reduced it etc

[Trishfrog1 in reply to Nuttyshirlz]

I couldn't carry on with it I felt absolutely shocking ....that's not how things should be , they can still lower it after I've spoken to them 48 hrs isnt going to make a big difference

[Trishfrog1 in reply to Nuttyshirlz]

Spoken to my Gp he said I've done the right thing coming off it ...I've also got a telephone call tomorrow with my specialist rheumatology nurse 🤞🏼

[Trishfrog1 in reply to Nuttyshirlz]

Rheumy nurse has rang she said it's a good job I came off it as my wbc has dropped that low I need to stay away from crowded places and go straight to hospital my alp also not good she said it's the sulfasalazine that's knocked everything out .

[Gnarli]

Unfortunately, it didn't suit me but I thank all that's good there are plenty of other meds to try.

[Beadie]

Hi I've been taking sulfasalazine for 4yrs and since I had covid 3yrs ago they upped mine 3 tabs twice aday and its been great, wouldn't change mine, best wait and see blood results and what the rhumy nurse says to what works for one may not for another and they take awhile to kick in and settle down!!

[AnnieJ123]

It seems to be a marmite type drug. It either works ,with no obvious side effects, even though they may show years later, or full of side effects which are evident early on. This is why it is monutored at the start, and if unsuitable, an alternative is found.

[Kariss]

I was on sulfasalazine for about six months and asked to come off it, not because of low mood but because it gave me an absolutely evil taste in my mouth 24/7 and my tongue and gums were bright yellow too. It made no difference towards improving my RA symptoms either so was not for me! The taste thing, (dysgeusia) made me feel sick all day long as well and I spent all day wearing sick bands and no longer wanted to go out to eat nice meals as all food tasted horrible. Other meds have had this result for me too but this one was the worst!

[Trishfrog1 in reply to Kariss]

Its rubbish isnt it feeling poorly...the symptoms I've been getting are worse than the RA

[Kariss in reply to Trishfrog1]

I agree Trish! It took me four goes trying different meds before I found one that worked and then I stayed on that for about eight years and got some relief. But my RA consultant used to say to me that if the side effects are worse than the disease, then come off them and try another! I’m on a biologic now and thank goodness, no side effects at all which is lovely. I hope you find the right one soon!

[Trishfrog1 in reply to Kariss]

I feel so unfit I've also got a blocked nose I've not got a cold it's only come on over a week ago what with feeling breathless and anxiety and low mood which that as lifted slightly and no appetite....I stopped them on Saturday afternoon I'm hoping I'm going to start feeling better soon ..think I might have to go see go before I speak to the rheumatologist nurse on Friday I've got blood test this week also .

[Trishfrog1 in reply to Trishfrog1]

Gp sorry not go

[Kariss in reply to Trishfrog1]

Be kind to yourself - it’s your body and if you’re not happy on your medication tell your gp that! When I’m feeling down I always ask a friend or member of my family to accompany me to appointments too as they can be very helpful for moral support and remembering things I forget to say! There are lots of other RA choices out there and it takes time to find one that’s right for you. Good luck, I hope you’re feeling better soon. x

[Trishfrog1 in reply to Kariss]

Thank you ..I've got a phone call with the rheumatologist nurse on friday ...think I might ask to go back on methotrexate and ask for injection instead of pills it wasnt as bad as the sulfasalazine...never felt this bad on it did get low mood and stomach problems last year on it but I had been on the pills for 13 years .

[Kariss in reply to Trishfrog1]

That sounds like a good plan. The injections worked for me, and very easy to do too. Much less stomach problems as well because they bypass that! Lots of good luck -let us know how you get on. ☘️

[whitedog]

I've been on it since 2018. 4 tabs a day. Compared to how MTX was making me feel, it's been good for me. I had bad guts that lasted maybe a couple of weeks at first but that settled down. No nausea, unlike with MTX.

Yellow pee, yes, but that's no big deal. The EN coated tabs are easy to swallow. I get occasional acid reflux but mainly when I've eaten rubbish like too much chocolate, so don't think it's a side effect.

I did wonder if I was losing my sense of taste a little. And I got a rash on the back of my hands at one point, suddenly. But my GP asked Rheumatology about that and they didn't think it was an issue.

I guess we're all different and I'd hate to have to change now, even though I'm now getting a lot of pain in my wrists and MCP joints. Waiting on a scan to confirm if RA or OA.

[Trishfrog1 in reply to whitedog]

I've been ok upto about 2 weeks ago no bad guts but the low mood feeling totally lethargic and anxiety was getting worse every day and feeling so unfit ..I e not had any tblts since saturday afternoon and slowly moods better and energy is coming back ...speaking to rheumatologist on friday sent them a message this morning told them I'd stopped it and why got message back to say they call me ..I used to be on mtx pills though felt tired on it but never this bad ...might see if I could try the mtx injections instead