Re: Thyroid and Pituitary involvement

[Guest guest]

What did your treatment end up being? They just found granulomas in my

pituitary (along with lots of other places) and severe adrenal

insuffeciency. I am wondering what treatment will be...

>

> YES! It is absolutely possible for the thyroid and Piuitary glands to

> be affected by Sarc. (as I have so unfortunately found out recently).

> I had symptoms of extreme fatigue- sleeping 18 hours a day, unable to

> move or even do small simple tasks. One blood test and one scan later:

> the neurosarc had progressed into my thyroid. I'm still waiting on the

> treatment, so I told my doc I'd just sleep till then. Heh. As for my

> pituitary- (gents, don't read this bit) - My'monthly friend' stopped

> in September so I had that checked out, 'nother blood test and scan-

> I've got granulomas all over my pituitary. Darn it. Now it makes me

> wonder if there is any possible body part that is never affected by

> sarc?

> Anmyhow, Happy Turkey Day to all of our nieghbours to the south.

>

> Alyssa.

>

[Guest guest]

For me, I'm treating the sarc with Remicade, Plaquenil and Methotrexate. As for the endocrinological involvement, we're trying to get my thyroid balanced (I've had mine surgically removed when I was 18) but now the meds I've taken since then are no longer working, so we're trying to get me onto on of the sythentic thyroids.

I find that controlling my body temperature is really hard-- I'm always running a low grade fever, because of the systemic inflammation.

The exhaustion, fatigue, weight issues, are all part of the program.

I'm supposed to see an endocrinologist soon-- but so far they've not set up the appt-- I need to call on that.

One thing that I've learned over the years is that each system needs to be addressed individually, yet the treatment seems to be the same, prednisone or solu-medrol and immunosupressants. If it is neuro involved, then anti-depressants can help to balance the brain chemistry, and the sleep issues (they also help to control the seratonin and norephinephrine levels) which helps with getting both pain and sleep under control.

Neurontin and Topamax seem to be the drugs of choice for nerve pain.

Thyroid meds to regulate the thyroid, etc.

Each of us ends up with a program that is taylored to what is happening to us-- and generally it takes a combination of meds.

Take care,

Tracie

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