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I asked this in a chat but don’t think anyone remembered an answer hehe
The question was: If Graves disease is like you had a transplant and your antibodies are rejecting your thyroid and eyes, then why can’t we use the medications that are used for that sort of thing?
Hope the question makes sense
Thanks
MariaHi, Maria:
This would be a question to ask your doctors, if you want a more professional answer. As I, a complete layman, understand it, the drugs given to transplant patients suppress the entire immune system for a period of time, in an attempt, sort of, to “trick” the immune system into accepting the new tissue as “natural”. It is pre-emptive, done before the body has any chance to develop antibodies to the new organ tissue. Once such antibodies develop, IF they develop, the person’s body “rejects” the organ, i.e., kills it off with an antibody attack. The doctors do not, at this point in time, resume the immuno-suppressive drugs to save the organ — it is as good as gone. Instead they start looking around, if possible, for a new organ for the patient. The only techniques the medical community currently has involves total immune suppression, which puts the patient at risk of getting an infection, and dying from it, so people cannot live long, and healthy lives, taking these drugs. Since we aren’t diagnosed until AFTER we have developed antibodies to our thyroids, eye muscles, etc., taking immuno-suppressive drugs, short term, is not an option. Those antibodies will still be there shortly after the drugs are stopped.
Bobbi
NGDF — ASST. Online FacilitatorWow Maria, great question. Bobbi, I understand your response, but I have another question. I have a friend that went through a kidney transplant a few years back. He’s on anti-rejection drugs for the rest of his life. No short term bargains here. Loads of dangers on the drug, but a necessity as I understand it. Thanks for the idea Maria, something I’ll certainly question my endo about.
Mary
Hi,
I actually had been on a treatment of
plasmaphoresis (which is a procedure which cleanses your blood
by a filtering system so to speak and then to keep your thyroid antibodies lowered it is followed by 6 months of immunosupresant drugs
to lower the damage the antibodies were doing
to my eyes.In my case the doctors 4 were consulted and decided this
was the best form of treatment for me for other health reasons
I had to be careful about infections, etc. and I
stayed healthy while I was on this treatment.Dee
NGDF, Asst. online faciltatorWell, I’ll have a go at this, if you like. The drugs used when people have a transplant not only stop the body reacting to the transplanted organ but actually stop the body reacting to anything. That is why people have to be very careful to stay away from anyone infectious as exposure to infection could kill a person on these drugs because their body cannot react and fight off infection. These drugs can only be given on a short-term basis, obviously.
One of the side effects of ATDs is to kill off the white blood cells in a very small percentage of people and they are left without any immune system. This is the same sort of thing.
That’s interesting about the fellow with the kidney transplant being able to stay on the anti-rejection drugs. Thanks, Mary. But the way doctors evaluate things involves risks vs. rewards. Since someone who needs a heart, liver, kidney, etc. is going to die without the transplant, the risks run by the anti-rejection drugs would probably not weigh in much. You are risking certain death against possible death. WE, however, can live, and most of us very well, without the thyroid. So what sense does it make, in general, to make a practice of suppressing the whole immune system, and risk getting very ill, when we don’t need the thyroid like we would need a heart, kidney or lung transplant person does? It’s weighing the risks vs. the potential rewards.
Bobbi — Bobbi1436@AOL.com
Hi ,
I have a quick question i am on tapazol, the last three days i have been so cold and my hands are froze, then an hour later i am so hot i am sweating what is going on ? Is this part of being on meds? Thanks again all for all your support.
annetteI don’t remember ever reading about symptoms like you’re experiencing in the literature that I got with my Tapazole. Maybe you should call your pharmacist — they have access to the full information that the manufacturer provides about side effects, etc. You didn’t mention how long you’ve been taking Tapazole. Maybe if you’re kind of new to it, it’s just your body doing some strange adaptation between hyper/normal/hypo?
Since having Graves’, I also have experienced episodes of being unbearably cold. They last up to a couple hours, and I can pile on the sweaters and blankets but still cannot get warm. It is awful! My hands do feel very cold to the touch when this happens. I am in remission and no longer on Tapazole, but I still have these symptoms, so the drug can’t be the cause. My endo didn’t think it was related to Graves’ disease. I’d be interested to hear if anyone else has experienced this.
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