Drugs changed from methotrexate to sulphasalazine!

[SLEepyhead123]

I have SLE, RA and underactive thyroid. Does anyone else suffer the side effects of sulphasalazine? I was taken off methotrexate injections by my new rheumatologist, and am due to see her sometime next month. I have felt awful since she changed my meds, constant upset stomach and nausea and vomiting, liver pain, blood in urine, should be less than 25 and the two tests i had were both over 6,000! more aches and burning pain inside my bones like lava is flowing through them and tremendous fatigue. Insomnia... quiet often don't get to sleep until 4.00 am but then sleep till 11.30, then back to bed from around 2 till 6.30pm when I just drop off as soon as my head hits the pillow! Awful unhealthy sleep routine but if I can't go to bed in afternoon I feel like committing murder to anyone who tries to stop me! With the methotrexate I lost one day a week to sleep, the day after my injection. I don't feel as if I'm living , just existing.

[Hidden]

Oh dear. I hated sulfasalazine with a vengeance. Caused me considerable misery and pain. Please don't suffer like that, ask to be taken off it.

[medway-lady]

Don't assume that all this is down to the new medication . Blood in the urine is a asap visit to GP and fast track to hospital for a cystoscope. Might be nothing but get it checked out please.

[SLEepyhead123 in reply to medway-lady]

I had over 6,000 and when doctor saw results said repeat in 4 weeks, still over 6,000 . Dr said I would be sent a referral to a urologist, 3 weeks and no appointment yet! That's Spain for you!!

[medway-lady in reply to SLEepyhead123]

Ask again I had this last year and nothing to do with meds. In UK its really fast to see urologist so I was shocked. we can also wait months for somethings but not blood in urine.

[SLEepyhead123 in reply to medway-lady]

I saw rheumatologist in May who requested ECG, breathing tests as I'm constantly breathless and a Cat scan for heart and lungs. The cat scan was done within about 6 weeks, have been told ECG and breathing test could wait up to a year for them! In the UK I was a fully qualified nurse.... can't believe an ECG can take up to a year..... have even considered turning up in Urgencias, with the symptoms of a heart attack!! 😉💜

[SLEepyhead123 in reply to SLEepyhead123]

I'm due to see rheumatologist in October, and feel all my symptoms changed within days of taking sulphasalazine, so trying not to be too concerned and that she will rethink my medication. 💜

[Maysmels]

I was on sulfasalazine only for a couple of months as the tables were affecting my immunity too much. I was told to stop. Didn’t however have any side effects as you have had! The only thing I was battling with was teenage spots all over my forehead and back, which disappeared as soon as I stoped.

Now on metathroxate and hate it! Just taken first dose and mouth full of ulcers, feeling sick, headache from hell, no appetite ....

[SLEepyhead123 in reply to Maysmels]

Lupus affects us all so differently, sorry you are struggling with methotrexate. If only the could find a treatment without all the nasty side effects!

[Leics]

Hi, have you tried salozopyrine (think that’s how it’s spelled) it’s sulfasalzine but with enteric coating which means it doesn’t affect your stomach /liver so much. Much better than sulfasalzine on its own. Maybe ask if you could get it changed if you’re having issues with your gut. I agree with others get urine with blood checked out ASAP. Might just be a uti but should not be left without antibiotic treatment.

[SLEepyhead123 in reply to Leics]

Thanks for your reply. On Monday will try phoning to see if I can get earlier appointment 💜

[GoawayRA1]

I was on sulfasalazine and within 3 months, my liver enzymes were sky high and my RBC, WBC, Neutrophils, BUN, Creatinine, BUN/Creatine were all below the acceptable range. I took the EC version of Sulfasalazine. Insist to your doc to be monitored monthly. Sulfa drugs have a high allergic reaction and can be inherited. 3 members in my immediate family were also allergic to sulfa drugs. I didn't know all of this at the beginning of taking Sulfasalazine. I had debilitating fatigue, joint pain, no appetite and a swollen belly. Once the 3-month labs results were in, I freaked. My increased liver function, my near nonexistent infection fighters and kidney problems developed very quickly. I don't want anyone to go through this. Now you're "armed" with valuable information. I hope you get the right medical treatment for Sulfasalazine, I stopped taking it immediately and told my doc I did so!

[SLEepyhead123 in reply to GoawayRA1]

I always had understood people with lupus shouldn't take any drug with sulpha so was somewhat surprised to be prescribed this. Hopefully I will be a bit wiser when I next see rheumatologist, not sure which appointment will come first, rheumatologist or urologist, ECG or breathing tests.... it's like playing bingo you never know what they are doing next!

[GoawayRA1 in reply to SLEepyhead123]

I also had tremors and those have disappeared since I stopped sulfasalazine 7 days ago! Not sure if that's related. For the docs. Good luck and stay strong SLEepyhead123

[CurlySuzie]

Felt really poorly on sulfasalazine, blood count dropped, fatigued, depressed - just awful! Took myself off it now just started on methotrexate. One day off colour and one day a bit worse but back to normal by day 3 - so far but it is only week 3!