Autoimmune Hepatitis and Other Stuff

[aaapattie]

In case we only get 5 threads per day yet, I've waited until the weekend when the use is usually slower.  We AIH folks are pretty rare on here, but we are here.  Please anyone feel free to use this thread for whatever.

Maari:

From our posting that started on January 11th -  I too have the lump or whatever in my throat.  I've tried to explain that to the doctors.  You are the first one I've ever found that knows what I'm talking about.  Most of the time you can rearrange your neck and make it better.  It will take ALL of your air if you don't do something.  Feels like someone blew up a little ball inside the back of your throat around the tonsil area.  Is that the same you have?

I'm anxious to hear what your doctor had to say about this.  Please keep me posted.

Glad to hear your levels are better.  

Pattie

[Maari]

Patti
I'm going to email the address to you.  If you don't get it let me know.
Maari

[aaapattie]

I haven't been tested for Barr, BUT I have had mono.  Three times in fact supposedly.  I was sick for about eight months straight many years ago.  I'll do some research on the E. Barr.  I would like that site address if you don't care.

I was diagnosed with the RA about a year before the AIH.  In fact, the only reason I found the AIH was because they ran the liver tests due to some RA medicine I was taking.  I take Enbrel injections for the RA which delays any joint damage, but I suspect I might not have RA at all and my joint pain is due to the AIH.  Since I feel the Enbrel helps the AIH anyway, I just haven't tried to change the doctors plans.  My insurance won't pay for the Enbrel (which is VERY expensive) if I don't need it for RA so I'm just leaving well enough alone.

Back to the closing throat ... I complained about the lump until some doctor finally sent me to a sleep clinic.  They said I needed a CPAP machine to sleep with.  That did help my breathing, but I don't think it is the true cause.  I'm with you ... I think it is Prednisone related.  But same with the RA, I'm getting by so I've stopped complaining.

I'll be looking forward to getting the site address.

God bless.

Pattie

[Maari]

Patti

I really know what you mean about the lump in the throat.  Sometimes it feels better with no pillow.  I asked my gastr dr about that and he order a test for the thyroid. I always get copies of my labs for myself, my TSH is 2.05 , the dr has not called about this and as it is the middle of the normal range I assume that is not my problem.

I am being reffered to a rheumatologist next month to see if I have arthritis. I have to take an aleve everyday now, and that helps with the pain and stiffness.

Have you ever been tested for the Epstein Barr virus?  The reason I ask is the AIH forum in the UK has several people talking about having mono before being diagnosed.  I tested with active EBV before they did the liver biopsy. And EBV causes mono. Makes a person think, if you want the web address for that forum, I'll be happy to share.

Hope your family is doing better. I know how it is when family members are ill.  I care for my handicapped daughter she has 18 q- syndrom.

Take care and God bless.
Maari