Re: HELP!! PTU Rash

July 5, 2002

Hi , I'm sorry to hear that it's not working this time for you.

Stupid doc that upped you to 750, maybe it triggered an allergy. I know this

might sound weird, but maybe you could find someone in your area that does

NAET and they could treat you for a PTU allergy and then you could take it

again. It might be worth some thought anyway, even if it is pretty off the

wall!

http://www.naet.com/subscribers/index3.html

:)Pam B.

July 5, 2002

Hi ,

I am stumped.

I wrote and asked Elaine to help on this one.

It will depend on her computer access , but I know she will answer as soon

as she can.

-Pam- ( Ladd )

July 5, 2002

Thanks to both Pams who responded and I appreciate your asking Elaine's help on

this one. I need all of the help I can get right now. I am itching badly. The

rash seems to like warm moist places, like in my groin and under my arms (forget

shaving there!!) but it also likes my neck, especially the back, and the

" underneath " area of of my arms (not the tops of my arms but the undersides that

never see sun).

I'm sitting here looking at the bottles of meds and haven't taken any yet today,

except my Synthroid. I'm debating about taking any more PTU because this rash

could get worse and I'm debating about taking the Prednisone to stop this

itching because what if I can beat this thing on my own??? So many questions.

What to do?

itching still in land

in land

---------------------------------

July 5, 2002

,

I got rashes on occasion too, but on Methimazole not PTU. In fact have

another one right now with my upped dose. I find the best relief from tea

tree oil, suggested to me here by someone a year or so ago. The stuff seems

to clear rashes quite quickly, and mute the itching, too.

Hope this helps,

Terry

>

> Reply-To: graves_support

> Date: Fri, 5 Jul 2002 09:06:40 -0700 (PDT)

> To: graves_support

> Subject: Re: HELP!! PTU Rash

>

> Thanks to both Pams who responded and I appreciate your asking Elaine's help

> on this one. I need all of the help I can get right now. I am itching badly.

> The rash seems to like warm moist places, like in my groin and under my arms

> (forget shaving there!!) but it also likes my neck, especially the back, and

> the " underneath " area of of my arms (not the tops of my arms but the

> undersides that never see sun).

> I'm sitting here looking at the bottles of meds and haven't taken any yet

> today, except my Synthroid. I'm debating about taking any more PTU because

> this rash could get worse and I'm debating about taking the Prednisone to stop

> this itching because what if I can beat this thing on my own??? So many

> questions. What to do?

> itching still in land

>

> in land

>

> ---------------------------------

>

July 5, 2002

What is it that you use???

Riley wrote: ,

I don't really know what to say about your allergy to PTU. But, I do know

what I use when I get hives. Since this GD thing has started I never know

when I will get the hives. Usually, I take what the directions say then

give it about an hour to work. If that don't work I'll do it again.

Usually after 2 times it works even if they aren't gone yet.

Debbie R.

-------------------------------------

The Graves' list is intended for informational purposes only and is not intended

to replace expert medical care.

Please consult your doctor before changing or trying new treatments.

----------------------------------------

DISCLAIMER

Advertisments placed on this yahoo groups list does not have the endorsement of

the listowner. I have no input as to what ads are attached to emails.

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July 5, 2002

Terry-What form is the tea tree oil in? (i.e. a lotion or oil) Where do you

get it?

in land

---------------------------------

July 5, 2002

,

I'm so sorry to hear this!

Before you write off PTU, here's what I would do:

1. ask for a full blood work-up: white blood cell count and liver enzymes.

If there are abnormalities, then I would indeed write off PTU and start

looking at surgery.

2. If there are no abnormalities, consult wtih an endo about the rash and

its significance AND about whether or not *smaller* doses could be

tolerated.

3. Then find out all the 'what ifs' during pregnancy: could you take a

small amount of PTU, would you have to have an emergency thyroidectomy if

you developed an allergy while pregnant; what risks to the baby if you're

hyper for a short time; what are the odds of going into complete remission

while pregnant (it happens -- most hyper symptoms would occur in the first

trimester and then some people go into remission).

-- I understand how hard this is. I developed an allergic reaction

to PTU (liver) and was informed I couldn't take the drug; therefore, my

ob/gyn advised me to never become pregnant again unless I was permanently

hypothyroid: they felt that the risk of becoming hyper and perhaps

requiring an thyroidectormy (normally done during the fourth month, as mos

twomen become hyper in the first trimester) wasn't a good one to start out a

pregnancy with.

My doctor's advice was to have my thyroid removed rather than risk the PTU

allergy during pregnancy. There are so many 'what ifs' and possible risks

and odds to weigh. It's a hard set of decisions.

Anyway, you'll be in my thoughts. Good luck and feel free to email me. I

am currently pregnant again, but only have developing a strong and well

established case of hashimotos-- I waited over a year to make sure that

hashis did indeed appear to be my predominant tendency.

Best --

B

ps: anyone else reading -- the ob today didn't try to hear a heartbeat as

I'm only 8 weeks pregnant -- but all else looked great: uterus the right

size, sick to my stomach and tired. I'm waiting for blood test results, but

so far all of my thyroid hormones are good: tsh higher than normal (1.9)

but the T3, T4, and Ft3 are actually in the high end of normal, which is

great. I have good energy.

Two more weeks and I'll be out of the range in which 90% of miscarriages

happen!

, I hope to be reading a similar message from you one day. Have

faith: many, many women wiht Graves do have babies. Just takes us a while

to figure out the best route sometimes.

HELP!! PTU Rash

> Well, I thought it wouldn't happen but it seems it has. After only 2

> days of taking the pills, I have broken out on the whole body rash

> that I had before when I had an allergic reaction to PTU. If you

> don't remember my post from earlier in the week, I switched back to

> PTU because my husband and I are going to be trying to get pregnant

> this fall and I wanted to start taking it now 1) as a precaution and

> 2) to see if this would happen. When I had the reaction before, I

> had been on PTU for 2 months with no problems and then when my doc

> upped the dosage to 750 mg/day, I broke out in this rash, had to take

> Prednisone and switch to Tapazole. Well, I thought since I was only

> going to be taking 100 mg of PTU a day and I didn't have a problem

> with the lower dosage before I'd try it and it has blown up in my

> face, literally.

>

> My questions are these:

> Has anyone else had this type of reaction and had it go away with

> time while continuing to stay on the medication? If so, what did you

> do to keep the itching under control and make the rash go away?

>

> Should I just own up to the fact that I can't take PTU and start

> talking with surgeons so I can have a subtotal thyroidectomy and then

> start trying to get pregnant after the surgery?

>

> I'm so upset I'm at a loss. Not only am I miserable from this rash,

> I'm miserable because I wanted to try to avoid surgery and now it

> seems like it is in my very near future.

>

> Any suggestions anyone has would be much appreciated.

>

> ...itching badly in land

>

> -------------------------------------

> The Graves' list is intended for informational purposes only and is not

intended to replace expert medical care.

> Please consult your doctor before changing or trying new treatments.

> ----------------------------------------

> DISCLAIMER

>

> Advertisments placed on this yahoo groups list does not have the

endorsement of

> the listowner. I have no input as to what ads are attached to emails.

> --------------------------------------------------------------------------

------------

>

July 5, 2002

Hi ,

I've been itching a lot lately and yesterday it was unbearable. I don't know if

it's a coincidence that I just started PTU. I went to Whole Foods in search of

something that would soothe my itching, burning skin. I found super-hydrating

camomile baby soap. I tried it and feel much better. Benedryl works for me,

but makes me so exhausted I can't function.

Terry, it's interesting that tea tree oil works for you in such circumstances.

It's generally used only when there is an infection or something external

affecting only the skin rather than an allergic reaction. But, hey, if it

works, it works!

, I know you're in sheer misery right now. I really hope you feel

better soon.

-Tori

In a message dated Fri, 5 Jul 2002 11:23:54 AM Eastern Standard Time,

aldente@... writes:

> ,

>

> I got rashes on occasion too, but on Methimazole not PTU. In fact have

> another one right now with my upped dose. I find the best relief from tea

> tree oil, suggested to me here by someone a year or so ago.

> The stuff seems

> to clear rashes quite quickly, and mute the itching, too.

>

> Hope this helps,

>

> Terry

July 5, 2002

,

While we wait....

So you are taking Synthroid AND PTU.

The Synthroid requires a HIGHER dose of PTU to counteract it.

What if you gave up on the idea of block and replace...then you would need

much LESS PTU. ?

Seems a shame that idiot doc has triggered the allergy. You did have 2 mo on

PTU with no problems.

And if all you need is 100mg of PTU with the Synthroid.. well it seems to

me..you do not need a lot of anti thyroid drugs at this point.

It is not like you are really , really hyper and stuck with a real high

dose.

Maybe it is just my own perspective. Because it took me years before I could

get down to 100 mg. And I was not taking any Synthroid to make me more

hyper.

PLUS..are you breaking the PTU into portions and taking small amounts every

8 hr ?

That is how I found it worked best for me.

And that 'would ' give your body less to be allergic to at a time.

Do we know for sure it is not the Synthroid you are allergic to ? (

probably, but I had to ask)

Did you follow lilDebs story of how she was allergic to PTU and by adding it

slowly she got her body used to it, and then was able to take it ?

These are thoughts only, not medical advise.

I just feel for all of you when the itching starts. I remember it clear as

day, but still have trouble remembering what I did 10 min ago. LOL

-Pam-

July 5, 2002

, what about a bath with some baking soda or calamine lotion in it?

You should be able to find some tea tree oil at a natural foods store, and

they probably have some other holistic remedies that might work - ask

someone who works there, I've found they usually know their stuff. I hope

you find something to make you feel better soon!

:)Pam

PS This reminds me of when I had poison oak all over my body and couldn't

get rid of it for 2 months, no matter what the docs gave me - I didn't know

about alternative stuff then. The only thing that would help was getting in

the shower, I was taking about 5 showers a day. Hey, come to think of this,

this happened right before all my hypo problems started, maybe it triggered

the hashis. Or maybe it was all the cortisone they injected that did it.

July 5, 2002

Yes I am on Synthroid and PTU. My levels have been in the hypo range so my

endo wanted to give me some hormones to see if my levels will come up. My doses

are 100 mg/day of PTU (50mg twice a day) and 50 mcg of Synthroid once a day.

I've read that the amount of ATD should be high in BRT but my endo didn't adjust

that dosage. If I gave up on BRT then I would think at this point I wouldn't

need any ATD, just the Synthroid right?

I'm pretty sure it is not the Synthroid I'm having a reaction to. This reaction

is EXACTLY the same as it was with PTU before. It is like my body is just

picking up where it left off when I had the previous reaction.

I didn't follow lil' Deb's story about adding the PTU slowly. That is something

I will consider if I decide to stay on it.

I just don't know what to do. I haven't taken my PTU today and I still am

staring at the Prednisone bottle, haven't taken any of that yet either. I

haven't called the doc yet because I know she'll tell me to stop the PTU, go

back on the Tap and come in ASAP so I can get scheduled to talk with a surgeon.

I'm going away this weekend too so that just confuses the hell out of me as to

what to do as well! Should I take the PTU?

---------------------------------

July 5, 2002

PTU rash...

Now if I had my pre-Graves brain with me... I'd know where I put

the link...

Anyway PTU rash can be treated with antihistamines. I don't like

introducing another drug but if you are looking for the

combination to make pregnancy safe without surgery it has to be

the next thing to try.... sorry

If you read the other thread as suggested privately, the link

there suggested you should drop the thyroxine, and thus the PTU

dose, and try and maintain a steady thyroid function by just

adjusting PTU when pregnant* (and so presumably before getting

pregnant). So that should lower your PTU dose substantially,

which might help with the rash as well.

Either way it is a trip to the doctors

Look on the bright side you might have waited till you were

pregnant to try this!

Simon, worried he is getting all the 's and 's

muddled up, and also if everyone but me trying to have kids** ?

* The argument was that PTU crosses placental barrier easier

than thyroxine, so if you don't minimise PTU dose you risk a

hypo fetus, and corresponding risk of development problems esp.

lower IQ.

** One of my friends partner just had a baby girl - although his

dazed phone call omitted weight, health, how the mother is, in

fact everything but the childs names was omitted.

July 5, 2002

Hi ,

Congratulations on you're pregnancy! You'll definitely be in my thoughts as you

get through the danger zone.

Did you have your thyroid removed before becoming pregnant? I've read

recommendations that hyper women should not get pregnant. You seem to have

alluded to that. Is this true? Should hyper women take precautions to not

become prego?

Take care,

Tori

In a message dated Fri, 5 Jul 2002 11:37:32 AM Eastern Standard Time,

petri017@... writes:

> ,

>

> I'm so sorry to hear this!

>

> Before you write off PTU, here's what I would do:

>

> 1. ask for a full blood work-up: white blood cell count and liver enzymes.

> If there are abnormalities, then I would indeed write off PTU and start

> looking at surgery.

>

> 2. If there are no abnormalities, consult wtih an endo about the rash and

> its significance AND about whether or not *smaller* doses could be

> tolerated.

>

> 3. Then find out all the 'what ifs' during pregnancy: could you take a

> small amount of PTU, would you have to have an emergency thyroidectomy if

> you developed an allergy while pregnant; what risks to the baby if you're

> hyper for a short time; what are the odds of going into complete remission

> while pregnant (it happens -- most hyper symptoms would occur in the first

> trimester and then some people go into remission).

>

> -- I understand how hard this is. I developed an allergic reaction

> to PTU (liver) and was informed I couldn't take the drug; therefore, my

> ob/gyn advised me to never become pregnant again unless I was permanently

> hypothyroid: they felt that the risk of becoming hyper and perhaps

> requiring an thyroidectormy (normally done during the fourth month, as mos

> twomen become hyper in the first trimester) wasn't a good one to start out a

> pregnancy with.

>

> My doctor's advice was to have my thyroid removed rather than risk the PTU

> allergy during pregnancy. There are so many 'what ifs' and possible risks

> and odds to weigh. It's a hard set of decisions.

>

> Anyway, you'll be in my thoughts. Good luck and feel free to email me. I

> am currently pregnant again, but only have developing a strong and well

> established case of hashimotos-- I waited over a year to make sure that

> hashis did indeed appear to be my predominant tendency.

>

> Best --

>

> B

>

> ps: anyone else reading -- the ob today didn't try to hear a heartbeat as

> I'm only 8 weeks pregnant -- but all else looked great: uterus the right

> size, sick to my stomach and tired. I'm waiting for blood test results, but

> so far all of my thyroid hormones are good: tsh higher than normal (1.9)

> but the T3, T4, and Ft3 are actually in the high end of normal, which is

> great. I have good energy.

>

> Two more weeks and I'll be out of the range in which 90% of miscarriages

> happen!

>

> , I hope to be reading a similar message from you one day. Have

> faith: many, many women wiht Graves do have babies. Just

> takes us a while

> to figure out the best route sometimes.

July 5, 2002

Pam B,

When I had the rash before I was taking oatmeal baths morning and night. They

helped with the itching but the rash still persisted. The Prednisone, and

stopping the PTU, is what made the rash go away. Taking a shower, at least for

me, seems to worsen the rash. It is like the heat and moisture just revs it up

even more. When I get out, you can just see the redness under my skin in the

areas where it hasn't come out yet and then after a while, bumps start popping

up.

in land

---------------------------------

July 5, 2002

and what is stopping you from taking the prednisone this time? (I don't know

anything about that drug - is it dangerous?)

RE: HELP!! PTU Rash

Pam B,

When I had the rash before I was taking oatmeal baths morning and night.

They helped with the itching but the rash still persisted. The Prednisone,

and stopping the PTU, is what made the rash go away. Taking a shower, at

least for me, seems to worsen the rash. It is like the heat and moisture

just revs it up even more. When I get out, you can just see the redness

under my skin in the areas where it hasn't come out yet and then after a

while, bumps start popping up.

in land

July 5, 2002

Pam Brisse wrote: and what is stopping you from taking the

prednisone this time? (I don't know

anything about that drug - is it dangerous?

Nothing other than my wondering if I can lick this with out it. Is that stupid

logic or what?

---------------------------------

July 5, 2002

Before I knew I had Graves', I went to a doctor about the itching thinking it

was allergy related. She told me to stop taking so many showers, that I was

removing what little oil was left in my skin and aggravating the situation. I

think she was right. It's not nearly as bad if I don't shower so much every

day.

-Tori

In a message dated Fri, 5 Jul 2002 12:19:35 PM Eastern Standard Time,

pmmnmb@... writes:

> Pam B,

> When I had the rash before I was taking oatmeal baths morning and night. They

helped with the itching but the rash still persisted. The Prednisone, and

stopping the PTU, is what made the rash go away. Taking a shower, at least for

me, seems to worsen the rash. It is like the heat and moisture just revs it up

even more. When I get out, you can just see the redness under my skin in the

areas where it hasn't come out

> yet and then after a while, bumps start popping up.

>

July 5, 2002

,

I don't really know what to say about your allergy to PTU. But, I do know

what I use when I get hives. Since this GD thing has started I never know

when I will get the hives. Usually, I take what the directions say then

give it about an hour to work. If that don't work I'll do it again.

Usually after 2 times it works even if they aren't gone yet.

Debbie R.

July 5, 2002

Oh yes, I forgot about the tea tree oil another is clove oil.

Our drug store carries a bug bite stick with natural ingredients and the

main ingredient is clove oil. We use it on bee stings and all bug bites

that itch.

Debbie R.

July 5, 2002

,

Sorry about that one of the girls was talking to me and I left it out.

Valerian, it's an herb.

Debbie R.

July 5, 2002

Hi B,

Glad to hear your appointment went well. Before you know it that

appointment where you hear that heartbeat will be here. Thanks for keeping

us informed

Debbie R.

July 5, 2002

-

I had just found a thread on this topic of itching and ATDs on Mediboard for

someone else there who was having similar problems. The link to it is

http://www.mediboard.com/ubb/ultimatebb.php?ubb=get_topic;f=1;t=000708

but I don't know if can see it if you're not registered there, so I copied

below a couple of the more relevant posts, one from Elaine and one from

lilDeb.

I believe there were others who were on ATDs and had itching problems and

used benadryl or other antihistamines with success, but I can't find that

thread off hand. If you think it's the increased dose of PTU, which sounds

reasonable, put a call into your endo's office and speak to another doc.

Hopefully they should be able to call in an antihistamine. If your endo

doesn't have a partner, try just your regular MD. He/she should be able to

suggest something as well. You shouldn't have to suffer just because the

endo's on vacation.

I also agree with (was it Pam's?) idea of stopping the synthyroid and going

to the lower dose of PTU (with doctor's approval, of course) if an

antihistamine doesn't work.

- I guess now I'll have to start going as B. lest we get

into another confusion like with all the Pam's!

P.S. For Simon - I am definitely one who is NOT trying to get

pregnant! Got 3 already and today I'd probably sell at least one or two of

them cheap! How many more days until school starts?

***** begin copied posts from Mediboard *****

Elaine

Senior Member

Member # 2631

posted 03-14-2002 11:00 PM

----------------------------------------------------------------------------

----

Pam's right,

Itching and even hives are considered side effects of ATDs and they

generally resolve when the dose is reduced or when antihistamines are given

along with the drugs.

In a true allergic reaction you'd have generalized inflammation, throat

swelling and other signs of anaphylaxis. True allergic reactions to ATDs are

rare.

People with GD are prone to hives because of their overactive immune systems

and their low vitamin A levels. Some people mention hives developing for no

reason and often stress triggers them. Hope this helps, Elaine

lildeb7

Senior Member

Member # 2864

posted 07-02-2002 04:43 PM

----------------------------------------------------------------------------

----

Adding to the thoughts of everyone, With my allergic reaction to the atd's,

I had swelling and puffyness over my whole body, that got worse while taking

the atd and gone after stopping. I also grew more lethargic, dizzy,

nauseated, and ringing in my ears would occur. Also, hives and itching, and

constriction in my throat. I hope this helps anyone who is told they have an

allergic reaction, so they can decipher the differences between have a

reaction or not.

Also, if under a doctors supervision, a patients body can build up enzymes

to fight against the allergic reaction. I am proof of that!

Deb