Sulfasalazine: Been on 10 mg of prednisone Doctor just... - NRAS

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Sulfasalazine

Terri1020 profile image
24 Replies

Been on 10 mg of prednisone

Doctor just put me on the sulfa and I am finding it hard to tolerate

I can't sleep, feel tight in my neck, nauseous , depressed

Anyone have trouble while on this drug

Thank you

24 Replies
Nettac profile image
Nettac

Yes, I had an appalling time on it. Not everyone copes well on this drug. I'm afraid I experienced psychotic depression on this, and a worsening of pain.

Don't suffer for too long on it. Go see your doc.

Terri1020 profile image
Terri1020 in reply to Nettac

What meds worked for you?

How are you feeling now?

Nettac profile image
Nettac in reply to Terri1020

Steroids are the only thing that work thus far. That said, I've only tried sulfasalazine and leflunomide. About to try methotrexate. Not hugely happy about this, due to possible psychiatric side effects. Apparently it's a prerequisite before being offered anything else, so have to bite the bullet.

Hope you feel better soon .

Yes, it made me quite ill at first. Then I had a reaction and infection together in less than a month after starting it.

Hydroxychloroquine and methotrexate worked better for me but there are usually side effects with all harsh DMARDs.

Good luck!

Anitasmith profile image
Anitasmith

Yes same here got insomnia and depression taking sulfasalazine. Go to see doctor... i am off now 2 months still dealing with insomnia.

Terri1020 profile image
Terri1020 in reply to Anitasmith

Been on. It only 2 weeks

Just not myself

How long did. U. Take it for?

What medication is working for you?

What. Are they doing for your insomnia?

Anitasmith profile image
Anitasmith in reply to Terri1020

I had sulfasalazine 1 year, i have ra. Insomnia they gave me pills for sleeping, mild ones helps get asleep better. It's called triazolam. Right now i am taking only celebrex and tramadol for my ra. Can keep this way under control. Not the best but helps me with pain and live almost regular life. Ok i am very tired and still in pain but manageable level

Terri1020 profile image
Terri1020 in reply to Anitasmith

I am going to call doctor tommorrow

How long have u had ra?

Do you have anything going on with your lungs?

They said I have ra

Lung disease also

I never smoked a day in my life.

Nuttyshirlz profile image
Nuttyshirlz

I’m starting sulfasalazine on Monday with my methotrexate any tips lol

Terri1020 profile image
Terri1020 in reply to Nuttyshirlz

Good luck-I hope it helps you! Been on it 2 weeks and having a hard time tolerating it.

Why is he putting you on another medication with the methotrex?

Nuttyshirlz profile image
Nuttyshirlz in reply to Terri1020

At min I’m on methotrexate and folic acid and depo medrone inject there think I should take sufasalazine will replace my injection but I also have now got high blood pressure too so I’m guessing on Monday after seen doc I’m have new pills to add to list.i should have started sulfasalazine two weeks ago but I picked up first winter bug and just finished antibiotics yesterday so gotta have 48 hr gap before I can start x

nomoreheels profile image
nomoreheels in reply to Terri1020

It's quite normal to be prescribed more than one DMARD when treating Rheumatoid Diseases. If you see double therapy that means they're on 2 DMARDs. The same applies for 3, though that's triple therapy of course.

helixhelix profile image
helixhelix

The drug that gave me most problems was prednisalone - emotional highs & lows, couldn't sleep etc. All the other like Methotrexate, sulphasalazine and hydroxychloroquine have been fine once I got over the initial weeks.

It is such an individual thing. And so hard to decide whether the effects are temporary and will wear off once you get used to the drug, or will stay around. Sometimes it's worth hanging on for a while - with Sulpha I had bad digestive upsets for the first few months, but eventually that went away.

But only you can decide whether it's time to give up on a specific drug. If you feel that Sulpha is causing you problems then tell your rheumy straight away, and ask their advice. Especially if it's making you feel low - being recently diagnosed is bad enough without anything else on top.

Terri1020 profile image
Terri1020 in reply to helixhelix

I had a really bad flare up

Last month and was given

Prednisonal for a week . I felt great

The sulfa on the other hand i am having a problem witth

How long have you had ra?

helixhelix profile image
helixhelix in reply to Terri1020

7 years. The first year or so was rough, but now it is well controlled with drugs I'm fine. Hardly ever need so much as an aspirin.

Prednisalone does make me feel like superwoman on the surface, but rubbish underneath....

Terri1020 profile image
Terri1020 in reply to helixhelix

Wow! I am glad you are doing well. Do you know anything about ra lung disease?

nomoreheels profile image
nomoreheels

I did. I'm generally fine with meds but not SSZ. I was so low on it, I say low because I honestly can't say it was proper depression, in my instance in a similar way that people who are genuinely depressed I think would be as ticked off as we are when others say they have RD too when they plainly don't!

I would discuss your symptoms with your Rheumy or nurse, don't try to work through them. I gave it longer than I should have really. I made an appointment to see my Rheumy nurse & she had my try lowering the dose initially but the nausea & sickness remained even with an antiemetic. Unfortunately this wasn't prescribed by my GP, that was my first mistake but as she was on holiday I'd no option. My mood didn't improve either on the reduction, all I wanted to do was go to bed & hide away. When I did get in to see my GP she was very concerned about my demeanour & told me I'd not to take sulfonamide meds again, including antibiotics like trimethoprim. It's now listed as an allergy on my notes. I've known her a long time & she knew I wasn't right, even a few weeks after I'd stopped it, told me I should have gone to see her & not my Rheumy nurse.

I hope you're listened to & they don't try to persuade you to persevere with it, or have you try reducing the dose to see if you tolerate it better, if you have symptoms as horrible as mine were.

kobiandmolly profile image
kobiandmolly

Hi Terri 10 20, I'm on sulfasalazine I struggled with it at the beginning but it did settle down, I felt so much worse for quite a while, my rheumatology nurse gave me an im steroid injection which helped dramatically and gave the sulfasalazine time to work I started slowly gradually building up to 6x500mg a day which I am currently on and doing really well, so well that on February if still doing good then my consultant is going to look into reducing my dose until I'm on a maintenance dose, I wanted to give up in the beginning but talking to my rheumy nurse really helped and I can contact her at any time, hope this helps xx

Terri1020 profile image
Terri1020 in reply to kobiandmolly

Thank you. How long did it take for the sulfa to kick in? Did you have a lot of swelling? The doc has me on 10mg prednisone for awhile know . He tried to put me on ra medicine mycophenalate and it messed my liver up. Took me off and levels went back to normal. Now he has me on sulfa . He wanted me to cut back the prednisone to 7 1/2 mg while on sulfa but left foot was real swollen. Back on 10 but still swollen. I heard that sulfa helps with swelling .

I am on 2x500mg . I am glad to hear you are feeling good. Do you still have occasional flare ups? Stiffness? Pain?

kobiandmolly profile image
kobiandmolly in reply to Terri1020

I only got diagnosed at the beginning of the year, so it's all still quite new, my swelling has gone down the pain is gone though I have pain from fibromyalga but my inflammation and joints are all good I started on 1x500mg for a week then 2x for a week then so on until I reached 6x which I've been on for a while now and consultant is happy with everything during the first 6mths I had 2 im steroid injections which really helped I didn't want the steroid tablets as I'd had them before for a different matter and felt horrible on them so was reluctant to take the injection also but what a difference I felt and I knew all about it when it wore off so quite happily took another by the time that wore off my swelling and pain were quite well managed I then was diagnosed with fibromyalga so that's a different battle and not much to be done for that though I did some research and have started on ldn which apparently can help with my ra, my fibro and my hypothyroidism I'm on my 3rd week of it so fingers crossed, i would give sulfasalazine some time to work if you can but on the other hand if you know without a doubt that you can't tolerate it then speak to ur nurse or consultant and explain don't suffer in silence xx

Terri1020 profile image
Terri1020 in reply to kobiandmolly

Good luck with Idn- What does that stand for? Are you also taking the sulfa? I am trying to stick it out with the sulfa a little longer. It has helped with the joint pain. Still cant get the swelling down in my left foot though. Not feeling the greatest. Cant sleep.

Anitasmith profile image
Anitasmith

I have ra 4 years:( no lungs problem

Terri1020 profile image
Terri1020 in reply to Anitasmith

The doc said I have them

Don't know how never smoked a day in. My life

Anitasmith profile image
Anitasmith in reply to Terri1020

Sorry to hear but it's common with ra got damaged more , not only bones:( inflammation in you body

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