Sulfasalazine side effects. : Please can anyone help? I... - NRAS

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Sulfasalazine side effects.

GillB45 profile image
49 Replies

Please can anyone help? I started sulfasalazine 6 months ago. I’m having side effects of nausea headaches and occasional vomiting. My RA consultant has told me to double my omezperole dose before taking sulfasalazine. I feel as though it’s not good for my stomach. Do I have to stay on this drug? I’m also taking HRT for menopause. This is causing bloating too. Has anyone else had these reactions. I feel like I do not know which way to turn.

49 Replies
Jackie1947 profile image
Jackie1947

Umm not sure if after 6 months this is right. Ive been on it for 16 years but I remember a short time of feeling nauseas but it passed quickly. No one has to stay on a drug unless there is no alternative. I went through many different types when first diagnosed with RA. Whether or not HRT meds contradict with Sulpha no idea. Keep badgering for a review even a telephone one. Do you have a hospital help line run by the dept?

GillB45 profile image
GillB45 in reply to Jackie1947

Thanks for replying. I appreciate you taking the time to respond. I will contact my rheumatologist and ask for a review xx

Madmusiclover profile image
Madmusiclover

personally I couldn’t tolerate it. Felt poisoned and poorly. Long term omeprazole isn’t necessarily a great idea either! I’d ask to be changed to another drug. Try the NRAS helpline for support.

GillB45 profile image
GillB45 in reply to Madmusiclover

That is my feeling too. I’ve expressed concerns over both drugs plus omezperole. Thank you for taking the time to reply. Much appreciated xx

Madmusiclover profile image
Madmusiclover in reply to GillB45

sometimes we have to push. Budgets often dictate what we are offered. A locum rheumy made me cry once when I told her I couldn’t tolerate the latest drug they offered me. Treat me like I was a naughty schoolgirl. I got an apology.

GillB45 profile image
GillB45 in reply to Madmusiclover

Absolutely I know where you are coming from. I cannot understand why I’ve been told to carry on taking it when it’s affecting my stomach. 🙈

AgedCrone profile image
AgedCrone

SSZ was one of my “drugs from hell”…..thankfully my rheumy listened & changed my meds. No you don’t have to stay on any drug that is making you feel that bad.Try having a word with your rheumy nurse… ask her to speak to your rheumatologist explaining how awful you feel…..Although that seems unfair…rheumies sometimes don’t appreciate just how bad some drugs can make you feel & get a bee in their bonnet to keep you on it…it’s likely she will have more chance of getting your drugs changed than you repeatedly telling the consultant yourself. 

GillB45 profile image
GillB45 in reply to AgedCrone

Thank you for taking the time to reply. I appreciate your advice 🤩. I will speak to my consultant again x

Madmusiclover profile image
Madmusiclover in reply to GillB45

if push comes to shove you could ask for a change of rheumy, I’ve a nurse who pushed my buttons. Never want to see her again. It’s on my notes. 😢

AgedCrone profile image
AgedCrone in reply to GillB45

You missed my point GillB45….I recommended you speak to your rheumy nurse to get her onside-  to make your point to your consultant.Once a consultant has told the patient to carry on with a drug it can become a battle of wills & doctors  don’t  give in easily….but if your nurse agrees & supports you…you  could get that med change quickly.After all that is what you want isn’t it?I don’t care how much I have to back down…as long as I get a drug that suits me-  I’m happy.😀

GillB45 profile image
GillB45 in reply to AgedCrone

I hear you. Good point! I will speak to my rheumatoid nurse. Xxx

Deeb1764 profile image
Deeb1764

I had this too and got taken off it as felt awful. I took omezperole  already whilst taking it and it was no hep. So maybe try it and if not ask to be given another drug nothing worse than nausea and vomiting on top of everything else 😘

GillB45 profile image
GillB45 in reply to Deeb1764

Thank you for your understanding. I’ve felt like I’m loosing the plot!! I’ve started HRT and I’m wondering whether they are not a good combination. Who knows!!

Deeb1764 profile image
Deeb1764 in reply to GillB45

I spent 2.5years with being sensitive to the drugs or interactions still not great but I have learnt how to mix it up with my GP to get a cocktail of meds I can take. Baritcitnib is my RA drug the only one my body coped with.

Just keep a diary or reactions to drugs as it can be a melting pot when trying to remember which did what to you.

GillB45 profile image
GillB45 in reply to Deeb1764

will do thanks so much xx

Lolabridge profile image
Lolabridge

SSZ made me feel awful and then I became really ill and was rushed into hospital with suspected pneumonia and sepsis! I had a serious (DRESS) reaction to SSZ - stayed in hospital for ten days on loads of antibiotics with awful skin rash too. It took months for me to recover and have been told to avoid all sulphur based drugs in future.

So if you continue to feel unwell on SSZ contact your Rheumy again. If you get any breathing difficulties or start running a temperature (as I did) ring 111 without delay.

GillB45 profile image
GillB45 in reply to Lolabridge

thanks so much for your help. Xx

TheBoys profile image
TheBoys

personally I d come off it. I had terrible nausea and dizziness.

One day I was so bad I got off train and had to be helped to a seat. The dizziness never stopped and had tachycardia. So i would not stay on it.

GillB45 profile image
GillB45 in reply to TheBoys

thank you so much for replying. I will arrange a review of my meds. It’s just all so hard to manage 🤩

Impie profile image
Impie

Hi Gill and yes I was so poorly with this med, not upset tummy just very very weird feeling and unwell in general and my mood slid down until I became suicidal and couldnt stop crying.....never ever experienced this before

My rhumatologist doesnt like this drug it was my GP who sugested it because he has patients who it works very well for and my rhumy agreed for me to try it. My friend also tried it and couldt tolerate it. Im now on methotrexate and initially struggled with side effects of very upset tummy and strange dreams and sore throat...lots of strange things but now thats all settled and most importantly its great for the joints. Ive learned quickly thats its trial and error and we all react so differently to meds. But above all we have to be very pushy, email the rhumatologists secretary, email the nursing team and be insistent. I found that hard because its not my nature but otherwise I sat at home in pain, imobile and crying thinking noone cared. You will find the right one for you, its just a bit if a marathon because of waiting times to see and talk to the consultant but you will get there. O and hrt yes that's tricky to get the right one and can cause upset tummy boating headaches too xxx again you will find the right one and what a difference it makes xx

GillB45 profile image
GillB45 in reply to Impie

Hi. Thank you so very much for your advice. Your heartfelt reply brought tears to my eyes. I think it’s also that someone understands. I’m so pleased you have got to the point of being on the right meds. I am tapering off hrt and seeing if that helps. One step at a time. I will get there and maybe I need to be a little more pushy. It’s just not in my nature either but it’s needed so that we can take care of ourselves in this situation. Thanks again for your advice 🤩

Curcubeu profile image
Curcubeu

I always struggled with it. Never been able to go up to 2tb x twice a day. Managed to start tolerating it but just up to 1tb twice daily. Even this is causing me problems...after 1 year and a half taking it.

I do also skip it when I feel I cannot take it.

Last experience with it- massive panic attack caused by elevated pulse, in my case this is one of the side effects. 2 hours to regain my well-being. Didn't take it for 3 days now.

I do take Methotrexate 15mg as well

For me, Sulfasalazine is good/helps, but only to some extent when it starts to cause problems

Maybe weigh the goods vs bads in your case.

GillB45 profile image
GillB45 in reply to Curcubeu

Brilliant advice. Okay so maybe I can suggest to my Rheumatologist that I drop to 2 per day instead of 4. Your right I will weigh up good points versus bad. Thank you for the lovely advice 🤩

Hi I haven't been on this particular medication but I get a lot of adverse reactions to tablets and have had many discussions with GPs and consultants over this and they've been very helpful. It really sounds as though you cannot tolerate sulphasalazine and need to discuss/be assertive, if necessary ....and explore alternative treatment options.

Mmrr profile image
Mmrr

I took a reaction to the salicylic acid in sulphasalazine, it was stopped by my rheumatologist.

But the point is, you do not need to take any medication prescribed by any Dr.

It is your choice, not theirs.

I would contact my rheumatology dept and politely but firmly say that you are requesting a medication review, due to sulphasalazine making you ferl so unwell.

GillB45 profile image
GillB45 in reply to Mmrr

Good point thank you. I will definitely do this. Thanks for replying 🤩

Fergie432 profile image
Fergie432

I was on ssz for a few years, didn’t help my RA and I often felt awful with bad headaches. Eventually came off it and switched to Methotrexate

GillB45 profile image
GillB45 in reply to Fergie432

thanks so much for your reply. I will go and see my consultant xx

Chockyuk profile image
Chockyuk

I’ve been taking it for about 3 months, I also take Mthx. I was fine until a few weeks ago when I started to feel nauseous. I’ve been taking ginger, but the nausea comes and goes. I am on Lansaprozal already as my stomach produces too much acid (GERD).

I did wonder what was causing the nausea, but I’ve recently stated taking anti depressants, so I thought it might be that, or the Sulfasalazine, I’m not sure 🤷‍♀️

But yes, don’t stay on it if it doesn’t suit. My Rheumatologist gave me Hydroxy a few years ago and I ended up in A&E, she wanted me to keep taking it and I refused.

GillB45 profile image
GillB45 in reply to Chockyuk

I’m not sure whether it is the sulfasalazine or HRT causing the bloating. I’m reducing the hrt and I’m sure time will tell. Thank you so much for replying. I appreciate it 🤩

Sms94 profile image
Sms94

how much water are you drinking? I take SFZ and have literally tripled my water intake which I think has really helped me.

I always take mine with a good substantial meal!

Has it helped your RA? xx

GillB45 profile image
GillB45 in reply to Sms94

Hi. Great tip. I don’t think I have been drinking enough. I do take with meals though!! Thanks so much for your help 🤩

Gymcactus profile image
Gymcactus

I take SFZ but the enteric coated ones that protect stomach, also need to be taken with a full glass of water after food, no problems and they do help with my morning stiffness.

GillB45 profile image
GillB45 in reply to Gymcactus

Hi. Yes I now take the EC Sfz. Although my pharmacist made a mistake and gave me gastro resistant which apparently are not as effective as the EC ones. I will also try taking with a full glass of water. Thanks for replying it is very much appreciated 🤩

Tired-fed-up profile image
Tired-fed-up

I felt terrible on Sulfasalazine - it’s hard to explain I just felt ill all over, and depressed, and had a horrible reaction to the sun. One lovely nurse said to stop taking it so I stopped there and then. Now I just tell people I’m allergic to it and occasionally I get an eye roll but there’s no way I’m taking it again.

CripLady profile image
CripLady

I’ve never had any issues with Sulf or Omeprazole, but suffered terribly with naproxen and diclofenac.. nausea/ toxicity etc. We are all different and all react differently to things. As HRT has now been added to the mix please make sure you notify your Rheumatology Nurse about this, ditto any supplements..

GillB45 profile image
GillB45 in reply to CripLady

Great advice. Will do thank you xx

marie66 profile image
marie66

I was awful on Sulfasalazine! Vomiting and nausea. I just couldn’t function. I then developed heart palpitations after 3 months so came off it again. M x

Elmo333 profile image
Elmo333 in reply to marie66

yes! Terrible palpitations that were definitely from the SSZ. I was very pleased to come off it but it’s good (not good but you know what I mean) to know that someone else had that side effect

GillB45 profile image
GillB45 in reply to Elmo333

oh goodness that’s no good having palpitations. Yes I get what you mean about others having side effects. Sending my warmest wishes to you 😊

marie66 profile image
marie66

I know exactly what you mean. You start to think it’s just you and you’re going crazy then you find out other folks had the same problems too. ((hugs)) M x

GillB45 profile image
GillB45 in reply to marie66

yes you do Marie your right. Sending hugs back to you xx

Blackberrywine profile image
Blackberrywine

Poor you. I had a terrible time on this drug and was taken off it in the end. Taking omeprazol on top doesnt sound good. I'd ask for a review personally.

GillB45 profile image
GillB45 in reply to Blackberrywine

thanks for replying. I really appreciate it.🤩

Interpreter profile image
Interpreter

I was so frustrated with this drug. It actually worked very well on my pain, but the chronic head and neck pain were so bad. I did not have tummy issues, but even my migraine meds would not help the headaches. They never went away. I'm so sorry.

Jimminey profile image
Jimminey

I started Sulfasalazine 4 years ago and after 3 months the RA inflammation in my hands went down and hasn't returned, though inflammation has occurred elsewhere since.

I've had no problems with side effects with the big exception of getting bad food poisoning on 4 occasions in 18 months, which my GP put down to the immunosuppressant effects of Sulfa.

girli1111 profile image
girli1111

not stomach issues for me, but suphasalzine caused extremely vivid and unpleasant dreams for me and physical panic attacks - something I’d never experienced before.

GillB45 profile image
GillB45 in reply to girli1111

none of its good. I hope you are well now. Thanks for replying I appreciate it xx

RUSTY750 profile image
RUSTY750

was on Sulfa about 5 years ago plus MTX .. the Sulfa caused depression.. got reviewed and changed ! ..still injecting the MTX weekly but now injecting COSYNTEX monthly.. still get nausea but prescribed Cyclizine 3 times a day ... stomach problems are still there [Lansoprazole twice a day] but some of that is a result of the pain killers.. I try to balance all that with the prognosis of 15 years ago that I would be in a wheelchair by now which I am grateful has'nt occurred... Talk to the Rheumatology Dept. If you are feeling low it could be the Sulfa ... best wishes..

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