sulfasalazine side effects : Hi everyone 😊. Please can... - NRAS

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sulfasalazine side effects

GillB45 profile image
GillB45
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Hi everyone 😊. Please can I ask if anyone has had side effects from sulfasalazine? I’m taking enteracoated sulfasalazine as I can’t stomach regular sulfasalazine. I have had indigestion loss of appetite and now constipation. I’ve been told my my consultant to take omezperole with the tablets. I’m at my wits end. Any advice would be greatly appreciated.

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TheBoys profile image
TheBoys

when I took it - i got light headed and rapid heart beat. I took it on two separate occasions with the same outcomes so only lasted a few days each time - never getting past a single daily tablet.

J1707- profile image
J1707-

it didn’t suit me only lasted 5 days ended up with anaphylaxis . If your suffering more on the meds than without then they are not the drugs for you

Biker52 profile image
Biker52• in reply toJ1707-

I managed one week with one tablet in the morning and one at night….felt terrible with stomach issues and feeling dreadful so stopped on the advice of the rheumatologist nurse.

I tried it again a couple of weeks later and only lasted a couple of days taking one a day!

Saw the rheumatologist last week and explained what had happened and he actually said that it doesn’t suit quite a few people and I had done the right thing in not taking it.

We have enough to put up with without meds making us feel worse.

Hope that things improve for you.

Madmusiclover profile image
Madmusiclover

You don’t have to stick with a tablet that doesn’t suit. I lasted 4 days on it!Ask for a review/change. Tell them you cannot tolerate. There are many other drugs our there. Good luck and sorry they are making you poorly.

Hippo1234567 profile image
Hippo1234567

I had loss of appetite for a week I think. But it went away and it put my RA into remission. Make sure you always take it with food.

smilelines profile image
smilelines• in reply toHippo1234567

that is amazing!

MorganCat profile image
MorganCat

I got dress syndrome from it . I had side effects and i ignored them had other excuses why they were occurring . 4 months in got a rash and my liver alt was 1556 and was admitted to hospital . When rheumy spoke to me , they told me off for not flagging the side effects . Do you have a rhemuy helpline you can call . I would call and see what the nurses say .

smilelines profile image
smilelines• in reply toMorganCat

great advice. Sometimes I forget these drugs are not to be taken lightly.

CarolKate profile image
CarolKate

My stomach was OK but when I got up to 2 am and 1 pm I started to get vertigo and palpitations. I spoke with the Rheumy nurse and stopped. I have also tried methotrexate and leflunomide, which was wonderful until 4 months in when I started to develop multiple side effects, some really unpleasant. I have reactions to many different medications, hoping I can find one for PsA that suits. I am unmedication until 16 July when I have an appointment with the Rheumy.

smilelines profile image
smilelines• in reply toCarolKate

Cosentyx is the biologic that I take for PsA. Maybe they will suggest that. It seems fine but I do get headaches.

CarolKate profile image
CarolKate• in reply tosmilelines

Thank you for the suggestion, I live in New Zealand where medication is free so we go through all the DMARDS first with biological being so expensive. Medical insurance isn’t common here and very expensive.

smilelines profile image
smilelines

I noticed you joined 2016. Have you been on other Dmards. I only ask to find out if you have other options. I don’t think it is good to struggle with a medication that doesn’t seem to suit your system. Methotrexate was horrendous for me yet leflunimide has been great. Salfasalizine gave me sores on my face so I only lasted on it for a few months. Best wishes.

Suzy-P profile image
Suzy-P

It was the first drug I was prescribed. It wasn’t for me - tried for a week and was so ill I nearly ended up in hospital……. Now on methotrexate and Leflumonide with no problems. Tell your consultant/doctor - there are other drugs out there to try. Good luck

GillB45 profile image
GillB45• in reply toSuzy-P

thanks Suzy. Will do xx

HevJ profile image
HevJ

Sadly I didn’t get on with it. By the second week I felt quite nauseous and my body had a red angry rash all over it…. All returned to normal once I stopped taking and started in another treatment.

Go back to Dr.

GillB45 profile image
GillB45

thanks so much for your advice 😊

madme1 profile image
madme1

That's strange one Gill because I was told by a consultant that sulphursalazine is used to help keep you regular. I take mine and usually about 1/2 hour later I go. Do you think it could be one of your other meds that's the culprit?

BMCV profile image
BMCV

I couldn't tolerate it at all. Nausea, dizziness, awful headaches and worst of all total loss of taste which didn't return until nearly 7 weeks after I stopped taking it.

challahheadRN profile image
challahheadRN• in reply toBMCV

That’s exactly what happened to me too. I’m 3 weeks since stopping and taste has not returned yet.

I take omeprazole as well as Sulfasalazine. I have been on Sulf for 12 years…

Are you taking cocodamol for pain?? That used to bung me up. When you next see your GP tell them about all the meds you take and include over counter ones. It may not be Sulf that’s the issue.

* We are all different, so it could be obviously!

Stress could also be a factor…

hbowling profile image
hbowling

Hello there

I was prescribed Sulfazalazine when first diagnosed and suffered dreadful side effects. I felt like I couldn’t move , couldn’t speak, and felt like I was encased in something that left me utterly terrified. As I clearly couldn’t carry on in this I was taken off and given Methotrexate

Hope you can get sorted soon.

Jackie1947 profile image
Jackie1947

If I remember I had an uncomfortable week with them then my body got used to taking them. Been on them for 17 years and I'm glad I didn't give up.!

Seabird1 profile image
Seabird1

Hi there, it was the first drug I was given and it worked so well. I felt great, but after 3 months my gp rang to say my liver functions were raised and to stop it straight away. So i had to switch to plaquenil. I hope you settle and are fine. The good thing is there are lots of different drugs to take so at least if you don't tolerate it, it will lead to other options.

Green230461 profile image
Green230461

Just bright neon wee! If you need to do a sample in future do it before you take your daily tablets otherwise colour frightens your GP 😆

rmros profile image
rmros

It took a while for the initial side effects to settle down but the bad indigestion persisted. It also affected my platelet count, causing me to bleed a lot. I stopped it when I realised it was also affecting my mood.

A lot of people talk about quitting after a short time due to stomach issues. Their choice, but unless the side effects are severe you do have to give most medicines a reasonable amount of time to settle down - and the alternatives might be worse. But I stuck with sulfasalazine for 8 months and wish I'd given up sooner. I find methotrexate far more tolerable.

TROMABE profile image
TROMABE

I could only tolerate it for a couple of weeks, the blood results weren’t good and they took me off it. That was thirty years ago.

Aporiac profile image
Aporiac

I took sulfasalazine for a few weeks to supplement methotrexate because I was still getting regular flare ups. I was already taking omeprazole to counteract the heartburn & reflux from mx, but adding in sulfasalazine brought those problems back. I also get terrible kidney pain as if I'd been punched in the back. I stopped the sulfasalazine and the kidney pain and stomach problems went away. Restarted and the problems came back again so I stopped permanently.

LuzyCLL profile image
LuzyCLL

I make sure to take with food. It has made a huge improvement in my body pain. I take omeprazole once a day and make sure I eat lots of vegetables.

GillB45 profile image
GillB45• in reply toLuzyCLL

Hi. Thanks so much. Can I ask if you take lots of veg for the fibre intake too? I’m feeling they I need to up my fibre intake due to the side effects of sulfasalazine xx

GillB45 profile image
GillB45• in reply toLuzyCLL

Hi. Do you take your omezperole with your sulfasalazine in the morning? Xx

LuzyCLL profile image
LuzyCLL• in reply toGillB45

yes, with food, and I make vegetables the main part of my meals

GillB45 profile image
GillB45• in reply toLuzyCLL

thanks so much for your help. Much appreciated x

Boxerlady profile image
Boxerlady

I'm one of the lucky ones - effective for my RA and has helped with my IBS-C. Definitely worth you letting your team know.

Hexachrome profile image
Hexachrome

I had neutropenia sepsis as an "allergic" reaction to Sulfasalazine only after a couple of weeks of taking it and ended up in hospital for a whole week... i thought i was going to die.

LuzyCLL profile image
LuzyCLL• in reply toHexachrome

sounds scary

Ladybird25 profile image
Ladybird25

I developed a chronic and persistent cough that didn’t go away until after I had discontinued it, which confirmed that the cough was a side effect. I had an x-ray to rule out any other causes.

Scootergirl1 profile image
Scootergirl1

I got a cough and very puffy eyes. Both went away when I stopped taking it.

GillB45 profile image
GillB45• in reply toScootergirl1

oh my goodness I’ve had puffy eyes too and a cough. Thank you for letting me know. Sometimes I feel like I’m loosing the plot trying to manage the side effects xx

Scootergirl1 profile image
Scootergirl1• in reply toGillB45

They moved me on to Methotrexate which is helping. Don't give up, there are other options but it seems to be just trial and error till you find something that suits you. Good luck.

GillB45 profile image
GillB45• in reply toScootergirl1

thanks so much. I really appreciate your help xx

Daisy70 profile image
Daisy70

I’ve been on Salazapyrin for ten years or so and I don’t think I’ve suffered any side effects. Perhaps I’ve been lucky.

I hated Methotrexate and came off that quickly. I lost lots of my hair and had nausea all the time. I went back to Salazapyrin and haven’t looked back. Good luck 🤞

whitedog profile image
whitedog

Apart from the first couple of week when my guts were upset, I've tolerated Sulfasalazine pretty well. Been on it over 4 years I think now. Bright yellow pee is a bit odd but no one but me is looking at that. I've recently been getting stiffness in my hands and wrists again but not sure if it's just temporary. I'm reluctant to change to anything else.

In fact, I was buzzing when I went back to the rheumatologist as I was so relieved to have an alternative to MTX that didn't make me feel nauseous. And yet I'd tolerated that for many years before it started making me feel so bad.

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