Breaking News -- embolisms!

[Guest guest]

Okay, guys. It seems that the lady with the embolisms is saying that she

does not feel that they are related to the PTU. She now explains that she

had another condition which was connected, stopped the PTU because of it,

developed another condition and Graves' which has come back in full force.

What I'm going to do is to hook her up to graves_support and let her explain

the whole thing, which she is willing to do, thank goodness, as I am getting

quite confused, and probably need a nap.

Stay tuned...

Red

***************************************************************************

Courage doesn't always shout. Sometimes it is the quiet voice at the end of

the day that says, " I will try again tomorrow. "

[Guest guest]

While the lady in question is dealing with the vagaries of the Yahoo

system, she has given me permission to cut and paste an email I got

from her yesterday. She'll be here soon.

> I don't have vasculitis.The ptu did cause the symptoms most

likely. At this

> point I'm not sure what are new symptoms or old ones.The embolism

was not

> caused by the Graves disease according to my doctors here.

> Hi again, It is all confusing. The ptu caused the vasculitis

underlying the throat infection and paralyzed vocal cord that I had

last summer. The ptu caused this condition and made the P-ANCA test

positive. Now that I no longer take ptu, the P-ANCA test has become

negative, confirming that the vasculitis was caused by ptu. I would

advise anyone who has been on ptu for a long time, i was on it 8

years, to have a P-ANCA test. If it is positive, you might want to

go off it. This reaction to ptu is rare, not something you need to

worry about.

The pulmonary embolisms were caused by something else.

They began long after I was off ptu. I have just written to Elaine

and she suggests I might have antiphospholipid syndrome, an

autoimmune condition that causes blood clots and is sometimes found

with Graves.

Hope this helps.

[Guest guest]

Red,

I talked to the lady too, and even though her condition does not appear to be

linked to PTU, she did at one time develop the P-ANCA antibodies and her

doctors thought she had vasculitis. While this is even rarer than drug

related lupus, it's good that we got the information out to people both about

the rare event of vasculitis and the more common antiphospholipid syndrome.

Happy Holidays, Elaine

[Guest guest]

Red,

I talked to the lady too, and even though her condition does not appear to be

linked to PTU, she did at one time develop the P-ANCA antibodies and her

doctors thought she had vasculitis. While this is even rarer than drug

related lupus, it's good that we got the information out to people both about

the rare event of vasculitis and the more common antiphospholipid syndrome.

Happy Holidays, Elaine

[Guest guest]

Red,

I talked to the lady too, and even though her condition does not appear to be

linked to PTU, she did at one time develop the P-ANCA antibodies and her

doctors thought she had vasculitis. While this is even rarer than drug

related lupus, it's good that we got the information out to people both about

the rare event of vasculitis and the more common antiphospholipid syndrome.

Happy Holidays, Elaine

[Guest guest]

Thanks, Elaine. I did cut and paste her short version of events this

morning, including the part about corresponding with you and the part

about possible antiphospholipid syndrome. I did search it and it

sounds pretty close to what she's experiencing.

Hopefully, she'll overcome the problem with yahoogroups and be able

to speak for herself and answer people's questions. She's

recuperating, so needs to do things as she can. The information

about getting P-ANCA antibodies checked regularly when on long term

PTU is important, in my opinion. She claims that because P-ANCA was

negative after stopping PTU, it proves that the vasculitis was caused

by it. Anyway, it is a lot of variables of which I was unaware

before being contacted by her.

I hope no one thinks that I am discouraging people from using the

ATDs. They are far superior to RAI, if you can manage to get into

remission. Perhaps the key factor is the length of time you've gone

undiagnosed and the progression of the disease before you start. Who

knows?

It is important to me to provide whatever information I get in an

honest way and not to supress information if it presents " another

side of a story. " That's part of the reason this group is so

successful and helpful for people.

Personally, I always try to give information and avoid giving direct

advice to people, so they can make their own informed decisions. I

hope people can understand this.

Anyway, Happy Holidays to you and to all on this list!

Red

> Red,

> I talked to the lady too, and even though her condition does not

appear to be

> linked to PTU, she did at one time develop the P-ANCA antibodies

and her

> doctors thought she had vasculitis. While this is even rarer than

drug

> related lupus, it's good that we got the information out to people

both about

> the rare event of vasculitis and the more common antiphospholipid

syndrome.

> Happy Holidays, Elaine

>

>

>

[Guest guest]

Thanks, Elaine. I did cut and paste her short version of events this

morning, including the part about corresponding with you and the part

about possible antiphospholipid syndrome. I did search it and it

sounds pretty close to what she's experiencing.

Hopefully, she'll overcome the problem with yahoogroups and be able

to speak for herself and answer people's questions. She's

recuperating, so needs to do things as she can. The information

about getting P-ANCA antibodies checked regularly when on long term

PTU is important, in my opinion. She claims that because P-ANCA was

negative after stopping PTU, it proves that the vasculitis was caused

by it. Anyway, it is a lot of variables of which I was unaware

before being contacted by her.

I hope no one thinks that I am discouraging people from using the

ATDs. They are far superior to RAI, if you can manage to get into

remission. Perhaps the key factor is the length of time you've gone

undiagnosed and the progression of the disease before you start. Who

knows?

It is important to me to provide whatever information I get in an

honest way and not to supress information if it presents " another

side of a story. " That's part of the reason this group is so

successful and helpful for people.

Personally, I always try to give information and avoid giving direct

advice to people, so they can make their own informed decisions. I

hope people can understand this.

Anyway, Happy Holidays to you and to all on this list!

Red

> Red,

> I talked to the lady too, and even though her condition does not

appear to be

> linked to PTU, she did at one time develop the P-ANCA antibodies

and her

> doctors thought she had vasculitis. While this is even rarer than

drug

> related lupus, it's good that we got the information out to people

both about

> the rare event of vasculitis and the more common antiphospholipid

syndrome.

> Happy Holidays, Elaine

>

>

>