Re: the Safety of long term use of proplythouracil

[Guest guest]

Hi,

I think I will take my chances w/ long term use. Long term use of

a small dose cannot be that bad my Endo says I can take it for 50

years if I want to.

I will mention the the test for ANCA but I don't have any symptoms

so I doubt I have these problems.

I think its safer than the alternative RAI.

Alegera

[Guest guest]

Hi Aileen:

Could you please describe the vasculitis? I got through the stats on

the report but did not finish reading the entire thing as it is a bit

daunting, but am very interested.

Thanks.

[Guest guest]

Hi Aileen:

Could you please describe the vasculitis? I got through the stats on

the report but did not finish reading the entire thing as it is a bit

daunting, but am very interested.

Thanks.

[Guest guest]

Hi Aileen,

I've recently developed vasculitis on both legs. Do you suppose the

vasculitis could be related to the GD itself as much as the PTU? The reports on

PTU are

pretty skimpy, and I haven't had time to research vasculitis in GD since I

also wonder if it could be an another autoimmune condition co-existing with GD.

Let me know your thoughts on this sometime, Elaine

[Guest guest]

Hi Aieleen:

Thanks for the explanation. That sounds like a very hard experience,

I'm sorry it happened to you. Are the doctors refusing TAP because

they don't think you can handle any more ATDs?

> >>> shen@h... 06/13/03 12:26 PM >>>

> Hello ,

> As I understand it, he attacks of vasculitis can affect

different parts of the body so not everyone would have the same

reaction but I can tell you what happened to me.

[Guest guest]

Hi Aileen,

This has been ongoing since December with this rash first being diagnosed as

eczema. Now, my doc says it's vasculitis, which is what the docs at work

thought. For now, I'm using topical steroids which haven't done anything, and

I'm

holding off on using oral steroids. I've also changed my diet and am trying an

anti-inflammatory diet (perricone's program) to see if that makes a

difference, E

[Guest guest]

>>> jacksue7@... 06/16/03 14:35 PM >>>

Hi,

Thanks for the web site. I had seen it before. One thing I left out was my

first trip to the Uva. medical school was to an ear,nose throat specialist.

One of the residents misread one of my tests and said it was the C-ANCA test

that was positive, not the P-ANCA.

The ENT doctors thought I had Wegener's Granulomatosus. For 2 weeks, until I

met up with the rheumatologist, I thought I did too. Those Wahoos (nickname for

Univ of Va.) can't tell a P from a C! If you think Graves is bad, read a

little about

Wegener's Granulomatosus.

Aileen

[Guest guest]

Hi The assistant doctor at UVa as willing to try Tap but the endo who was

her boss was unwilling. I have since read up on it and although Tap is much

safer than ptu, I'm not sure I want to take the risk of another reaction. I

do feel that ATDs are the way to go for treating Graves if possible. I also

think there is a great need for better treatments for Graves. I don't think

trading hyper for hypo is a reat treatment.

Aileen

>> shen@... 06/16/03 13:16 PM >>>

[Guest guest]

>>> daisyelaine@... 06/16/03 12:36 PM >>>

Oh Elaine, I'm really sorry. What type of vasculitis is it? What does your

doctor think about it?

You know you are asking an art major a medical question.

I found 56 articles about ptu and P-ANCA . In my case the P-ANCA declined from

someting like +2850 to +80 when I stopped taking ptu. My symptoms did improve

too.

I haven't read anything about vasculitis being associated with Graves

disease except the old thing about if you get one autoimmune disorder you are

likely to get another. Of course it would be possible for Graves to co- exist

with another autoimmune disorder.

Hope you are soon better,

Aileen

[Guest guest]

Hi Aileen:

Have you called around to other Endos or a GP, and

asked if they would prescribe Tapazole for you so

that you can control your Graves?

It would be worth a try...and then you would not have

to have surgery (unless that's what you really want).

Take care, & best,

Ron

> Aileen Fletcher

> Assistant professor of Art

> New River Community College

> Dublin, Va. 24084

>

> nrfleta@n...

>

> , ext. 4468

> >>> shen@h... 06/13/03 12:26 PM >>>

> Hello ,

> **As I understand it, he attacks of vasculitis can affect different

parts of the body so not everyone would have the same reaction

but I can tell you what happened to me. **I had taken ptu for 8

years. *About a year ago, I developed a sore throat. *The doctor

first thought I had a virus, then an infection.

> When I became unable to swallow, I was sent to an ear nose

throat specialist. *One vocal cord was paralyzed and I was

promptly put in the hospital where I received IV antibiotics. *The

infection cleared but the sore throat remained. *I also had

headaches, cough, and runny nose. The ENT doctor could see

*that my larynx was badly swollen . He did a biopsy. *The results

were uncertain. **He suspected throat cancer *even though I had

*none of the risk factors. *

> ( Incidently, 96 % of people who develop throat cancer are

smokers, another good reason to quit.) *Finally, I was sent to the

University of Virginia, where a rheumatologist came up with *the

connection *between ptu and my symptoms. *I almost didn't

believe her. I could find no information about *it until I discovered

Pub Med. *My symptoms have slowly improved although I fear

my voice is permanently damaged.

> It tires easily and I can no longer sing. *

> ***I was able to control *my Graves for *8 years with ATDs.

Usually, I just took 2, 50mg tablets of ptu a day. *I have learned

that Tapazole is safer. *This type of reaction occurs much less

often with it. *The doctors will not prescribe it for me. *

> *I do not like RAI *and I need to do something about the Graves

which has now been untreated for a year. *I am considering

surgery. Aileen

>

> PS My email was down all weekend so I am resending.

[Guest guest]

Hi Elaine,

I sure hope your vasculitis turns out mild and not causing you any harm.

Here is a werb site that I found that seemed to give a clear explanation.

Apparantly, it's common with lupus.

http://www.hamline.edu/~wnk/lupus/articles/

Lupus_and_Vasculitis.html

It sounds like Red might be affected too. It sounds very different from what I

had.

I'm feeling pretty good right now except for Graves symptoms, hot flashes,

palpitations, hunger.

Aileen

>>> daisyelaine@... 06/16/03 23:13 PM >>>

[Guest guest]

>>> daisyelaine@... 06/16/03 23:13 PM >>>

Hi Elaine,

Graves disease and vasculits produced just a few articles that did not involve

ATDs.

http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uid\

s=9775137 & dopt=Abstract

http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uid\

s=2263094 & dopt=Abstract

http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uid\

s=6596062 & dopt=Abstract

http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uid\

s=8668285 & dopt=Abstract

What a mystery these autoimmune diseases are! Aileen

[Guest guest]

Hi Aileen,

Thanks for the link. Right now, my vasculitis is more of a cosmetic problem

and somewhat interesting, although it doesn't appear as if it plans to resolve

anytime soon. It started with one leg in December and now both legs are

affected.

[Guest guest]

Hi Elaine,

I had read that skin vasculitis is not dangerous. Of course I don't remember

where anymore. I also read that vitiligo and all types of thyroid disease are

often found in the same families. You seem to have encountered some of the same

problems with doctors that I have. Doctors that can't tell a P from a C and

others who can't recognize someone with pulmonary embolisms must be sort of

common, just making different mistakes.

Aileen

>>> daisyelaine@... 06/18/03 12:36PM >>>

Hi Aileen,

Thanks for the link. Right now, my vasculitis is more of a cosmetic problem

and somewhat interesting, although it doesn't appear as if it plans to resolve

anytime soon. It started with one leg in December and now both legs are

affected.

[Guest guest]

Hi Elaine,

I had read that skin vasculitis is not dangerous. Of course I don't remember

where anymore. I also read that vitiligo and all types of thyroid disease are

often found in the same families. You seem to have encountered some of the same

problems with doctors that I have. Doctors that can't tell a P from a C and

others who can't recognize someone with pulmonary embolisms must be sort of

common, just making different mistakes.

Aileen

>>> daisyelaine@... 06/18/03 12:36PM >>>

Hi Aileen,

Thanks for the link. Right now, my vasculitis is more of a cosmetic problem

and somewhat interesting, although it doesn't appear as if it plans to resolve

anytime soon. It started with one leg in December and now both legs are

affected.

[Guest guest]

Hi Aileen,

What's interesting is that although sed rates are elevated in vasculitis

they're abnormally low in deep vein thrombosis, one of the most common causes of

pulmonary embolism. We do the quant d-dimer to rule out PE on ER patients. It's

a negative predictor, though. People with a normal test do not have PE. But

people with a high D-Dimer may or may not have PE. Take care Elaine

[Guest guest]

Hi Elaine,

My sed rate was 45 on 07/ 30/02. It came down to 29 on 01/09/03. I've

been told that it is now normal but I did not get copies of those labs. I did

have deep vein thrombosis. It developed a few days before Thanksgiving last

year. The doctor did not diagnose it. Even I thought my arthritis was extra

bad. I don't have a back ligament in one knee anymore and thought that was

acting up. I felt awful for about 10 days before I collapsed with the big

pulmonary embolism. What's quant d-dimer?

The ER doctor first thought I had thyroid storm but a chest x-ray and a cat

scan showed the embolisms.

I remember asking the technicians doing the cat scan about the seriousness of my

condition. They looked at each other and said nothing. Finally one said, "

There's treatment for it. " Later when I was better, they told I had them really

scared. My nurses said the same thing. I credit the hospital with saving my

life.

I did not know the sed rate was abnormally low with deep vein thrombosis.

Aileen

>>> daisyelaine@... 06/19/03 12:20PM >>>

Hi Aileen,

What's interesting is that although sed rates are elevated in vasculitis

they're abnormally low in deep vein thrombosis, one of the most common causes of

pulmonary embolism. We do the quant d-dimer to rule out PE on ER patients. It's

a negative predictor, though. People with a normal test do not have PE. But

people with a high D-Dimer may or may not have PE. Take care Elaine