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Anyone on Sulfasalazine?

19 replies

mumof2kiddos · 20/06/2023 10:58

Hi I have been prescribed Sulfasalazine for my RA which is mild to moderate at the moment (which means I am still able to do most of the things but with some degree of constant pain). But reading through the side effects, I am slightly worried. At the moment I am on HCQ for last 8 months which doesn't seem to have worked enough although I am experiencing almost no side effects with this medicine.
My question is if you have been on SLZ, how are you feeling/coping with its side effects? Any tricks to minimize them? I have just received the pneumonia vaccine on the advise of the RA nurse. Very scared of its potential damaging effects on liver kidneys etc.
Many thanks in advance.

OP posts:
spottywelly · 20/06/2023 18:17

I’ve been on it in the past for arthritis. I didn’t suffer too badly with side effects and it was pretty effective, so I’d definitely go on it again if I needed to.

My side effects were a constant but fairly mild stomachache and a feeling like there was something in the back of my throat that I couldn’t get out. These lasted for the initial period where I was ramping up the dose and then for a few days after. Eventually it got to the point where I had no side effects at all.

It does make your pee luminous yellow though, so watch out for that!

SkaterBrained · 20/06/2023 18:31

I've been on it in the past, it's not very strong and the side effects are fairly benign once you get used to it.

I needed something stronger, so now take methotrexate and biologics, which look even more daunting on the leaflet but I have a pain and arthritis free life - the pros outweigh the cons for all these drugs (if they don't you can try something else).

I hope it works for you, you'll be surprised how much pain and discomfort you've put up with once you notice it's gone.

Relaxd · 26/06/2023 06:50

I’m just starting it today. Really hoping no/very mild side effects and that it works! I’m def terrible at deciding to put up with pain over the fear of quite unlikely side effects. Hope your treatment really helps in time.

BlackboardMonitorVimes · 26/06/2023 07:11

I've taken it in the past and it's quite a safe low side effects medication, it's even approved for use during pregnancy. The yellow pee though is weird and if you wear contact lenses you'll need dailies as the yellow also stains them.

Clemmie4 · 03/07/2023 04:23

hello,
I’m now on my third year of taking sulfasalzine for my RA, like you I previously was prescribed hcq but after 12m decided I’d given it a fair chance and wasn’t seeing any results.
I was offered methotrexate but was too scared of the side effects and requested the RA department allow me to work my up the drugs available starting with the weakest. I remember coming home with the prescription bag and being to nervous to even take the Sulfa tablets at the start.

I was supposed to start by building up the amount week by week and I can’t recall exactly but say if I was supposed to be, maybe 1 tablet in the morning and one at night I would only take half a tablet each time to test my reaction to them.
After a few days and only noticing yellow pee as a side effect I then went ahead with the increase.
Originally I was encouraged to increase the dose until taking 4/6 tablets per day but I found that 2 per day was actually working really well and noticed such an improvement compared to the hcq.

I’ve had the occasional flare up (maybe one course a year of steroids) but overall so pleased with the decision to give Sulfa a try.
No side effects unless I forget to drink enough fluids, which results in a headache but that might not even be the meds fault, could just be dehydrated.

Some pharmacies supply the oval tablets but most for me supply the round chalky paracetamol type which I find tricker to swallow.
A minor issue is the dye from the tablets makes your mouth/tongue/saliva orange after taking them, even if only on the tongue for 5 seconds. My solution is take the tablets each morning & night right before cleaning your teeth.

After researching the possible liver damage I read that liver damage from Sulfa is reversible within weeks of stopping the meds so that encouraged me along with blood tests every 3 months.

Good luck OP, I really hope they work for you too.

fifteenfifty · 03/07/2023 21:11

I'm on it with no side effects, teamed with top dose methotrexate. This combination works for me, and I'm so grateful.

fifteenfifty · 07/11/2023 19:03

I was on it and loved it but sadly took an autoimmune reaction to it (rare) and can't ever have it again.

AutumnCrow · 07/11/2023 23:16

fifteenfifty · 07/11/2023 19:03

I was on it and loved it but sadly took an autoimmune reaction to it (rare) and can't ever have it again.

Same here.

Seaitoverthere · 07/11/2023 23:28

Can I ask how the reaction presented? I am in day 5 of it. Thanks.

mynameiscalypso · 07/11/2023 23:29

fifteenfifty · 07/11/2023 19:03

I was on it and loved it but sadly took an autoimmune reaction to it (rare) and can't ever have it again.

Me too.

AutumnCrow · 07/11/2023 23:33

I had a massive psoriasis flare-up. But silver linings and all that - the rheumatology department would never have approved a biologic straight away for me but the dermatology department did.

I'd had psoriasis and psoriatic arthritis for decades so in some ways in was a relief to get to the top of the 'medication tree', as it were.

fifteenfifty · 08/11/2023 07:47

How interesting to be told it is rare but happened to all three of us!

My white blood count fell to dangerously low levels, neutrophils too. It took 6 months for them to get to disastrous levels and I'd to stop and have been told never to take it again.

Seaitoverthere · 08/11/2023 08:23

Oh dear, this is all a bit scary. I’m taking it for psoriatic arthritis too and need to increase dose tomorrow.

Seaitoverthere · 08/11/2023 08:31

Just rang surgery to get 2 week blood test in as don’t want it delayed reading this.

redboxer321 · 08/11/2023 08:40

I had to take it. Worked very well and don't recall any side effects.
They're big pills to get down!
I hated taking them due to the potential harm they may have been doing to my organs but, considering how effective it was, I'd take them again in a heartbeat.

AutumnCrow · 08/11/2023 09:47

Seaitoverthere · 08/11/2023 08:23

Oh dear, this is all a bit scary. I’m taking it for psoriatic arthritis too and need to increase dose tomorrow.

Sorry to have worried you - it's one of those online things, isn't it, that you often only hear about the negative experiences?! You could be absolutely fine. And good luck Flowers After all, Sulfasalazine presumably must help a lot of people, or it wouldn't be available.

Do you have psoriasis as well? Just thinking out loud here, as it were: in my Trust area it's the protocol that for inflammatory arthritis, which is dealt with by Rheumatology, you have to try Sulfasalazine before then trying Methotrexate before then trying a Biologic. So there's a high threshold for Biologics, basically - but people do get there, when all else has failed.

If however you manage to see the consultant who runs the psoriasis clinic, Biologics like Adalimumab are offered much sooner. My consultant specifically wrote in her accompanying letter that the drug should help my psoriasis and psoriatic arthritis, and she was right. A lot of the inflammation in my toes and feet, that was worsening, calmed right down. I still get flares, but the rate of overall deterioration has slowed. But I had to get the drug through having crap skin ...

Seaitoverthere · 08/11/2023 10:06

Thanks @AutumnCrow . Don’t worry, I know the deal with it and held off for a bit but am getting joint damage so decided to try it . I’m lucky that my psoriasis is very mild.

Our Trust doesn’t specify which DMARD you try first and people often start on Methotrexate. It is 2 failed DMARDs to try a Biologic. I’m hoping Sulfasalazine will help, let’s see.

ElizabethanAgain · 11/11/2023 22:47

Hi OP. I've been on sulfasalazine for years with the dose gradually increasing over time as my RA slowly progressed. I'm now on 6 tablets a day with no side effects at all and my RA is well under control. As long as you have regular blood tests and your doctor is recommending it I don't think it's any more risky than other RA meds. I hope you manage to find a way to reduce your pain.

CheshireCat1 · 11/11/2023 22:56

I’ve been on them for about 15 years, no side effects. I do have naturally low WBC and neutrophils so have to be careful of infections, but I’ve been generally ok. I’m also on Benepali injections weekly which changed my life for the better. Rheumatology will keep a close eye on your bloods for awhile so try not to worry.

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