[Anonymous]

#1088421

I don’t know, but I’d sure like the answer too. I am responding great to PTU, but my endo said if I don’t go into remission after 18 mos. on PTU, that I will have to decide on surgery or RAI. He did say that I could go into remission, then get hyper again, and further ATD treatment is less effective then. Maybe that’s why. He didn’t bring up just staying on ATDs “forever”.

[Anonymous]

#1024371

I was diagnosed with Graves and saw my endo after being on Tapazole for 6 weeks. All my labs are normal, and even the TSH (which has a lag time) is coming up!!
I wanted meds and not RAI. I tol my endo that I don’t care if I have to be on Tapazole for the rest of my life since I had no side effects at all. My endo said I cannot remain on Tapazole for the rest of my life, and he said it was too complicated to get into the reasons for his answer.
Have any of you been on Tapazole very long term? Why can’t I be regulated with Tapazole forever (assuming I relapse once taken off the drug)

[Anonymous]

#1088422

Hi Sharon47…As I understand it the ATDs can have an adverse affect on your liver and bone marrow as well as other things…I don’t know if this is dose related or if there is less chance of these affects on a maintenance dose (2.5 mg to 5 mg??)…if you go to the top of the board page and click on graves disease links and then click on the Johns Hopkins link they have some excellent information on the ATD’s…I am currently on 10mg Tapazole myself…sounds like you are responding well to the meds…I have a problem with doctors who skirt the issues when asked a reasonbale question like you did…this disease,like any other disease IS complicated and I think it is their job to help those of us that want to understand it….good luck…Deborah

[Anonymous]

#1088423

Tapazone can cause liver damage after long term use. Which is way blood work is done while a person is taking it. Most people aren’t on it long enough for that to happen though, but that is why your doctor says that you can’t be on it for the rest of your life.

You need to talk again to your endo and discuss with him your treatment options. Why he doesn’t want you to use the ATD instead of the RAI.

Diane B On-Line Facilitator

[Anonymous]

#1088424

I was diagnosed with Graves around Thanksgiving Time. And now after being on Methamazole for approx. 3 months I feel great. I’d like to stay on anti-thyroid drugs forever too because…. well, why mess with a good thing. After all, those who have had their thyroids removed have to stay on synthyroid forever so why can’t those of us still with our thyroid stay on anti-thyroid. I have read up on the subject but haven’t found anything specific to this issue.

[Author]

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