Steven Johnson Syndrome & Methotrexate

Received a message today and my allergic reactions and skin peeling, blisters and sores my blood results and skin samples from dermatology have confirmed SJS

[Nsmith13]

That's the mtx I recon that's caused you this nasty reaction, it's lethal for lowering your immune system I had lots of infections while on it and the benapali glad I'm off it all now just on 5mg steroids and hydroxy tab and I've been sooooooo much better they wanted to start me on another bio but I said no got to see my ra consultant in August just hope I feel like I do at moment , hope your ok an sjs clears up soon good luck .

[helixhelix in reply to Nsmith13]

Benepali does have an affect on your immune system. But MTX only has a tiny effect. And so do steroids...

[Nsmith13 in reply to helixhelix]

It's difficult as we all react diffently to certain drugs and people's immune systems are complicated apparently I have a strong one and it rejects certain drugs and In the process makes me feel quite ill while it's trying to get rid of these meds mtx and bio

[helixhelix in reply to Nsmith13]

I entirely agree. It's just that there is a big difference in the immune compromising effects of biologics and MTX, regardless of individual reactions, but they are often lumped together. People also forget that steroids also have an immune compromising effect.

[helixhelix]

Sounds horrible, hope it all calming down now and you are being looked after carefully!

Do they think that the SJS was the starting point of your woes, which then triggered the RA. Or it's a reaction to an infection, or triggered by the drugs you were given for the RA? Never heard of it before but reading about it sounds as if could start in different ways and be triggered by something as simple as an anti-inflammatory. You have really bad luck!

[Hidden in reply to helixhelix]

The hospital are not commenting but since off all meds although sore no other problems. I am only taking antibiotics.

They wanted to see me today at the hospital but I am out of the country with my princess for a week.

[helixhelix in reply to Hidden]

Well good luck, and hope you are over the worst now.

[Hidden]

I did wonder about that. Poor you. Are you OK?

[Hidden in reply to Hidden]

My skin is sore, I look a little fried but staying out of the sun and using creams.

Still have RA but if that is all then I can get on with life. It seems that I am going to have to wait for a while to get my licence back.

[Nsmith13]

Anyway just hope it all settles an you can get your life bk on track let's see how you go on over nxt few weeks, and fingers crossed you'll feel a lot better an look forward to caring for your daughter again.

[Ranicles]

Hi was on a low dose of methotrexate few months, all went well.

Then the dose was increased, nausa ,vomiting, runs, after a week of this

Unable to eat ended up in hospital.

Bad reaction to methotrexate., hospitalised for a week,

Had to be be detoxed.

Minty 186 hope you recover quickly

Regards

Anne

[Hidden]

I'm surprised your GP didn't pick up on it to be honest. The peeling skin would have surely rung alarm bells. Quite a serious reaction!

Glad you are Ok. Quite a few drugs can cause this unfortunately.

[Hidden in reply to Hidden]

Thank goodness I am not like the pictures on the internet. I had a quick look and scary but the sores and blisters did burst, i think I only had a very mild outbreak

[Gnarli]

Oooh that sounds nasty and I sincerely hope you feel better soon

J

[Persi]

Dear Minty am so sorry. I too have had Steven Johnson Syndrome caused by Strontium Ranelate prescribed for me in 2011 as a treatment for osteoporosis. I can honestly say it was one of the most awful experiences. It took months to subside. I was on massive doses of steroids, the irritation was unbearable. I did eventually recover and research has given me insight that it can be a reaction to any drug.

Treatment options are such a balance between trying to control diseases which in themselves can be life threatening and or life changing and trying drugs which may enhance our quality of life.

[Hidden in reply to Persi]

Thank you for the information. It was very bad at one stage as I was heading for total organ failure, my nuts were the size of tennis

balls if not larger, groin area was very sore .Same goes for tongue and body, the best things were my hands and feet as they only peeled several times.Eye sight messed up but I am told it is temporary. I had something like fourteen tonic clinic seizures in a week, some of them were back to back. Apart from that I am ok, just the RA to deal with. I knew something was not right and asked the nurse outright if I could see the notes written about me as I was about to check in to a private hospital.

I was even diagnosed with diabetes and chronic angina, strange as no signs of either just now

Would love to post the message that I have received from the nhs but would never damage anyone that is trying to help unless they were negligent

[nablur]

I hope you improve quickly.