Good news from Mayo--info about H.E. and Rituxan with liver problems

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cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 5/23/2008 6:37 PM (GMT -7)   
Hi--
I got my final review from the Transplant Ctr. at Mayo and I'm doing good and am not heading for End Stage Liver Disease and still have no fibrosis, which is really good news. My increased edema is not from my liver.
 
I have no follow up with the rheumie there, and since I like my rheumie, the liver doc said to take the results of the antibody tests to him, which is great, I'm just happy to have the sensitive tests done--sjogrens, fibro, myofascial pain.  I talked to the endos about my TPOs and hashis encephalitis and they have a different view than what Ive heard on the forums. They believe that having anti-thyroid antibodies don't mean anything, lots of people have them (most of them end up being sick with something if you ask them though) and besides destroying your thyroid really aren't important at all.  Lots of people disagree with this opinion. He did admit that they are helpful in diagnosing a disease like hashimotos encephalopathy (whose name they have changed to some big long thing) because they coincidentally happen to be really high in people who have this condition, but they in no way cause the condition. That was new information.
 
My adrenals are insufficient, they didn't test any of my other endocrine antibodies because though they destroy the glands, they aren't important. The levels of secretions are important. The liver doc said that I need to follow up with them, that he could not comment on anything because there were abnormal results and he felt that they SHOULD want to run more tests or possibly provide some treatment or information. Since polyendocrine dysfunction ends with addisons, I'm kind of scared about my adrenals. There is something they give you, fludrocortisone I think, that helps keep the disease from destroying the adrenals. I hope they take this seriously because I've had the condition for almost 20 years now and it's followed the textbook progression.
 
The ortho needs to see me again for neck, scoliosis, and abnormal EMG, probably from the connective tissue stuff. 
 
Seems like the polyendo thing is getting worse, not the autoimmune or liver. Unfortunately, my endo is really nice, but not willing to medicate me until I'm really sick, and then, according to many I've spoken with, it is too late. 
 
They also said that they can't guarentee I can metabolize the Rituxan, and that the docs should give me a small dose at first to make sure I can handle it. This is important for anyone who has liver disease and is considering Rituxan I think. They did okay me to try "a shot" and see what it does, and they don't think that I will go into liver failure, but my enzymes may go up and I need to get off it.
 
All in all, good news. Now at least I know where the problem is.  I won't take the Rituxan until I'm having a problem, and I need to get the endo thing sorted out. This is so confusing!


Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 5/27/2008 2:06 PM (GMT -7)   
Marji,

Glad you got good news at your recent appointment . . . YEAH!!

But sorry you have such confusing issues between docs. *sigh* I think we each need a 'coordinator' for our doctors. LOL

Keep us posted when you figure out your next step.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 5/27/2008 5:49 PM (GMT -7)   
Some people at the thyroid board I go to sometimes said that's why they don't like Mayo for endocrine. I wonder if the same is true about rheumie stuff.  Thank goodness I have a good rheumie. That helps. And my local endo was no help whatsoever, but nice about being no help whatsoever, and wont test anything.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn

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