PBC with Myasthenia Gravis getting thymectomy

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Veteran Member

Date Joined Dec 2005
Total Posts : 1950
   Posted 2/26/2018 10:38 PM (GMT -6)   
Hi there,
I havent posted in quite a long time. I have hereditary Primary Biliary Cirrhosis with Sjogrens, Polyglandular dysyfunction, Pulmonary Fibrosis and now Myasthenia Gravis. While my immune system is attacking alot of parts of my body Ive been fortunate that most of it hasnt been real severe until the Myasthenia Gravis.

Urso put much of the Sjogrens and polyglandular dysfunction and pbc into remission but even in remission my autoimmune problems got worse in that I developed myasthenia gravis. I take plaquenil and there are warnings since chloroquine is known to cause a form of mg.

My pulm fibrosis is due to my throat muscles not working mostly when i sleep and i aspirate saliva. This is from the mg. It was not diagnosed until I got double vision and half my face started drooping. They were sure i had a stroke but no it was mg.

Myasthenia gravis can be created by depriving a mammal of manganese. Manganese is brought to the thymus by superoxide di****ase, a chemical that is defective in people with PBC. While likely underdocumented, myasthenia gravis is only rarely associated with PBC or other autoimmune liver conditions. But with recent research more may be established.

In addition to double vision which i thought was just blurriness due to dryness or tired eye muscles, I am easily fatigued. Any short rest recharges me. I have sudden muscle loss in most any muscle and I may drop things or limp or fall down. Its not much more than clumsiness I thought. It affected my heart as well.

Because I am declining fast and my liver cannot tolerate heavy immunosuppressants, I am referred for a thymectomy. It is pretty much unknown what this will do to the PBC though I may get complete remission of mg. After a few years I could get antidsdna and or antiphospholipid antibodies. But I wont die. And it may improve my pbc. No one knows.

I want to let someone know what happens because I could not find anything about it to help me make a decision. Also to make people aware of mg. It is often confused with ms and good testing needs to be done to distinguish the two. I take a special medicine called mestinon to improve my symptoms. It has helped alot.

ppm guy
Veteran Member

Date Joined Apr 2010
Total Posts : 1166
   Posted 2/27/2018 8:14 PM (GMT -6)   
Hi Cutedforeal and welcome back,
While I know nothing about any of your issues other than PBC... I have advanced progressive MS, and I had cirrhosis from alcohol and hep c.. I have cured my hep c, and quit drinking. My liver has improved enough to be back to full function. And my liver can handle the many drugs I need for ms, and other non friendly liver meds..I’m lucky that my ms doesn’t need immunosuppressants, other than occasional high dose iv prednisone(yuck)..

Glad to hear you have responded well to Urso.. How has your liver held up?
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