New Member

[Catam]

Hello everyone.  My name is Cathy, and I was diagnosed about 2 1/2 years ago.
I was started on plaquenil, methotrexate and folic acid. I'm still in the plaquenil but had to go off the methotrexate
because it stopped working. I switched to Arava for about 8 months but that wasn't working for me. So I was
started on Imuran about six weeks ago.

Today I got a call from my rheumy that my liver enzymes are elevated and I have to stop taking the Imuran. I have
to go in 2 weeks to have more blood work done. I am really scared that I am going to have a major flare with no medication.

I called the rheumy back and left a message asking what I should do if I have a major flare. Still waiting for a reply.

Without medication, I have terrible joint pain and swelling, hip pain, hands and feet. I also have polyneuropathy that has progressed significantly
according to my neurologist.  I go back to the rheumy in 2 weeks.
Does anybody have any idea where I go from here as far as medicine?

thanks, Cathy

[Joe S.]

Cathy, First let me welcome you to the forum. If you use the search box you will find a lot of information here. Some of us have posted what we are taking in our signatures.

I have trouble with most of the traditional medication and have had to find alternative treatments and forms of management.

[eyeamdry]

Cathy, try posting your story in the Sjogrens Topics column and I think you'll get better response.  This is the "social column" and usually used for any old thing we don't think fits the other category.  Lucy

[Linda196]

Lucy, Cathy did post there, but I moved her topic here, as an introduction. Naturally for specific questions another post in the discussion board is most welcomed, but getting to know new people is so much more social, don't you think?

[Chickpea]

Hi Cathy

It sounds as though your doctors started treating you quite aggressively so it's no wonder your liver is struggling to keep up with Methotrexate, Arava and Imuran. 

You're bound to be scared about the return of your main symptoms, but it has to be good to give your liver a rest.  Could you do everything you can to help your system?  There are foods and drinks to avoid - alcohol, fats etc - and also liver cleansing processes that might help.  (Although obviously you'd need to do that in conjunction with your doctor's advice.)

Immunosuppressants can only slow the progress of SjS - that's the best they offer.  And of course it's hard to measure changes to something that is unknown in the first place! Do you also take Prednisolone?  Increasing your dose of steroids might help with a flare if you get one now you've stopped the Imuran.  Would your doctor advise you about this before your appointment?

Take care - Chickpea