just diagnosed

January 18, 2000

Marie,

I underwent radiation/prednisone (ten radiation treatments followed by about two weeks of prenisone) for my eyes and they are greatly improved cosmetically, and, more importantly, the double vision only occasionally now occurs (usually when very very tired). I pray that this is a permanent *remission* of my TED. I think one eye is still slightly larger, there is some puffiness, but I will take those problems without double vision in preference to RAI. I am currently successfully dosing with PTU. My endo, however, continues to push the RAI. I plan to request referral to a different endo, seeking one who will provide watchful care rather than quick solutions.

Elaine

Researching Bohemian SurnamesS L E P I C K A and H R U S K A

just diagnosed

hi, i have been lurking behind the scene to get more info on thyroid eye disease. i have just been diagnosed after seeing 5 different doctors and having 2 eye muscle surgeries (which certainly did not help). as bad as the diagnosis is, it feels good at least to know what is happening. i thought the onset was sudden because i got up one morning in late march and was seeing double, but in retrospect i can see signs from way back that i did not recognize at the time. it's just bad that it took so long to get diagnosed. so far, my course of treatment will be low doses of radiation and predisone. i am seeing a neuro-opthamologist. she wants an mri before we start treatment. i appreciate all the info i am getting from everyone by just lurking in the background. every little bit helps.

January 19, 2000

> hi, i have been lurking behind the scene to get more info on thyroid eye di=

> sease. i have just been diagnosed after seeing 5 different doctors and havi=

> ng 2 eye muscle surgeries

> far, my course of treatment will be low doses of radiation and predisone. i=

> am seeing a neuro-opthamologist.

Marie,

I don't know the details, but evidence has recently surfaced that radiation has

NO effect on thyroid eye disease; the conclusion is that its the prednisone

that's helping the eyes and that radiation has no impact one way or the other.

I can't remember what study was done or where this information was published,

but it's fairly recent.

I read a post about this on the National Graves Disease Foundation Bulletin

Board. I'd urge you to go to the NGDF BB and search under " eye radiation " or

" eyes and prednisone " and see if you can find this particular post. It was

posted by the moderator of the bulletin board, Jake.

The NGDF BB is: http://209.114.200.77/bb/new.asp

If you can't find the post, please email me and I'll send you Jake's address.

Again, I'd urge you to find out all the information you can before you agree to

any radiation.

The NGDF BB is limited in its scope and not the best place to go for meaningful

discussion, but certainly provides accurate and timely information on the

current trends in conventional medicine.

January 19, 2000

The swelling in my eyes significantly decreased, as did the problems with

double vision, and prednisone was not started until *after* radiation was

completed. Both the cosmetic and neuro changes were noticeable in advance

of the prednisone dosage.

Elaine

Researching Bohemian Surnames

S L E P I C K A and H R U S K A

Re: just diagnosed

>

> > hi, i have been lurking behind the scene to get more info on thyroid eye

di=

> > sease. i have just been diagnosed after seeing 5 different doctors and

havi=

> > ng 2 eye muscle surgeries

> > far, my course of treatment will be low doses of radiation and

predisone. i=

> > am seeing a neuro-opthamologist.

>

> Marie,

>

> I don't know the details, but evidence has recently surfaced that

radiation has

> NO effect on thyroid eye disease; the conclusion is that its the

prednisone

> that's helping the eyes and that radiation has no impact one way or the

other.

>

> I can't remember what study was done or where this information was

published,

> but it's fairly recent.

>

> I read a post about this on the National Graves Disease Foundation

Bulletin

> Board. I'd urge you to go to the NGDF BB and search under " eye radiation "

or

> " eyes and prednisone " and see if you can find this particular post. It

was

> posted by the moderator of the bulletin board, Jake.

>

> The NGDF BB is: http://209.114.200.77/bb/new.asp

>

> If you can't find the post, please email me and I'll send you Jake's

address.

> Again, I'd urge you to find out all the information you can before you

agree to

> any radiation.

>

> The NGDF BB is limited in its scope and not the best place to go for

meaningful

> discussion, but certainly provides accurate and timely information on the

> current trends in conventional medicine.

>

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

> WEMedia.com empowers persons with disabilities to build a strong and

vibrant community.

> 1/682/5/_/6563/_/948294660/

>

> -- Easily schedule meetings and events using the group calendar!

> -- cal?listname=hyperthyroidism & m=1

>

July 10, 2001

Toni,

A friend of mine was just diagnosed as

well and has the upper quadrant pain and is not sleeping through the

night. One of her biggest frustrations

is her family’s refusal to see that she is as tired as she claims and it

is not a matter of ‘just do it’. She too is on her second week of prednisone.

Darcy

[ ] Just

diagnosed

Hello, my name is toni and I was just recently

diagnosed with AIH. I am on my second week of Prednisone.

My primary symptom of AIH has been right upper

quadrant pain. Does anyone else experience this? I am told that it

is rare to have this type of pain. Also, any help in sleeping through the

night?

Thanks, Toni

July 10, 2001

Dear Toni,

I think it is so ironic that many physicians look at you quizzically when you

ask about upper right quadrant pain. Most of us have it, and yet, the

medical community has so little information about it.

I went to the PBC conference in Las Vegas a couple of weeks ago. The

speakers at the conference were hepatologists who are very interested in

autoimmune liver disease. They all recognized the problem of URQ pain. One

of the speakers, Dr. Kris Kowdley said that the pain does not come from the

liver itself, but the liver is enlarged, and this causes what surrounds the

liver to become tender. I wish I could remember exactly how he said it, but

this is what I gained from the lecture.

I have PBC, but was originally misdiagnosed with AIH. I took pred for 6

months. During that time, my doctor prescribed the sleeping aid Ambien. It

worked like a dream (no pun intended). Also, you might experience GERD

(heartburn) Prevecid helped with that. Doctors don't tell you what the side

effects of prednisone are. Be sure to take Calcium with Vit D. Prednisone

can play havoc with your bone density.

Also, have your blood pressure monitored in the coming months.

Good luck!

July 10, 2001

Hi Toni and welcome!

Right Upper Quadrant Pain is not rare, many of us have it for one

reason or another. Mine seems to have gone away over time. I was prescribed

Trazadone for sleep when I was on higer doses of Pred (10mg+) and it worked

great for me. I didn't use much, still have last years bottle (its probably

expired).

Jen

On Tue, 10 Jul 2001 09:10:09 -0500, wrote:

>

> Hello, my name is toni and I was just recently diagnosed with AIH. I am

on my second week of Prednisone.

>

> My primary symptom of AIH has been right upper quadrant pain. Does

anyone else experience this? I am told that it is rare to have this type of

pain. Also, any help in sleeping through the night?

>

> Thanks, Toni

>

_______________________________________________________

Send a cool gift with your E-Card

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July 10, 2001

Welcome to our group. I was Dx'ed in August '00 with AIH. My primary

complaint has been right quadrant pain and I believe others in our group

have that pain too. My hept. told me it was because the liver is

inflamed. Recently though the pain has gone away. As for sleeping, when

I'm on high doses of prednisone (>20mg) I can only get a couple of hours

of sleep. Your doctor can prescribe a " liver friendly " sleeping aid.

-Clyde

--

=========================================================+

Help save a life, become an organ and tissue donor today.|

=========================================================+

July 10, 2001

Thanks . I am essentially still learning about AIH and Prednisone.

Everything seems overwhelming right now.

>>> madamfood@... 07/10/01 03:01PM >>>

Dear Toni,

I think it is so ironic that many physicians look at you quizzically when you

ask about upper right quadrant pain. Most of us have it, and yet, the

medical community has so little information about it.

I went to the PBC conference in Las Vegas a couple of weeks ago. The

speakers at the conference were hepatologists who are very interested in

autoimmune liver disease. They all recognized the problem of URQ pain. One

of the speakers, Dr. Kris Kowdley said that the pain does not come from the

liver itself, but the liver is enlarged, and this causes what surrounds the

liver to become tender. I wish I could remember exactly how he said it, but

this is what I gained from the lecture.

I have PBC, but was originally misdiagnosed with AIH. I took pred for 6

months. During that time, my doctor prescribed the sleeping aid Ambien. It

worked like a dream (no pun intended). Also, you might experience GERD

(heartburn) Prevecid helped with that. Doctors don't tell you what the side

effects of prednisone are. Be sure to take Calcium with Vit D. Prednisone

can play havoc with your bone density.

Also, have your blood pressure monitored in the coming months.

Good luck!

July 10, 2001

To Toni and any others who have recently started on prednisone:

Two week s after being diagnosed AIH (Aug 97), I was watching the Today Show

and saw an interview about a new book " Coping with Prednisone " by musician

Eugenia Zukerman and her sister, R. Ingelfinfer, M.D., St. 's

Press. Although my then doc at Duke had given me some info on the side

effects of pred, this wonderful book, written in layman's terms, was an

absolute Godsend for me. It not only details side effects, withdrawal,

physical and emotional aspects, etc. but also diet recipes and exercises.

My doctor was very impressed with it, ordered for himself, and said that he

would recommend it to other patients. It might be available in a public

library, but I wanted my own copy so that I could continue to reference it.

Little did I know that I would still be doing that four years later.

II experienced almost all of the side effects mentioned in the book,

including the oh so attractive " moon face " , but I did not gain weight. I

made a very determined effort to watch my diet.

Hope that this will be of some help...it was such a scary time for me and I

needed all the help I could get.

Ginger in SC

July 10, 2001

Toni,

Welcome to the group. I really wish the docs would acknowledge that we all

have pain in the liver area. The docs all seem to have a block and refuse to

admit we do have pain. I know I did before I had a transplant and my liver

actually moved and twitched and ached. We all have some degree of pain. I am

sure many of the other members will relate to you.

gayle trans/6-99 ^oo^

galye@...

July 14, 2001

Dear Tonya, Welcome to the group. My daughter was diagnosed nearly two

years ago at the age of 10. She has systemic JRA. This is a great group to

learn from, and to get support from. There are alot of people with

experience with systemic JRA. The beginning is the worst of the disease. It

seems to explode onto the scene. Once it gets under control, and the child

gets on the medicines that works for him or her, it becomes more manageable

day to day. Everyone is different with this disease, and each child reacts

differently to the medication. To give you hope---n is on just

naprosyn and plaquenil and is functioning normal. It took us awhile to get

to this point, it happened ever so slowly. She is in school full time, and

in extracurricular activities. I have found one of the secrets to managing

n's disease is rest. We do not let her overdo. Good luck, and don't be

afraid to ask any questions.

>From: tonyal@...

>Reply-

>

>Subject: just diagnosed

>Date: Sun, 15 Jul 2001 00:01:27 -0000

>

>My daughter Terah 5years was just diagnosed with systemic

>JRA. It has truly devastated us but we are trying to

>be strong for her.

>I look forward to hearing more when I learn to cope better.

>

>Tonya

>

>To manage your subscription settings, please visit:

>

>For links to websites about JRA:

>http://www.geocities.com/Heartland/Village/8414/Links.html

>

July 15, 2001

Dear Tonya,

Just wanted to welcome you to the group! You've found a great bunch of

people to share things with and who will listen when you need them.

They've really been a blessing for us!

, Kate (6 1/2 ---always makes me put that 1/2 in lol!---severe

polyarticular jra)

July 15, 2001

Tonya, understand and feel you dismay, total feelings of utter confusion

and as so many mother will do to them selfs, guilt.

Well I just want to say, you have nothing to feel guiltily about and when

you are ready to cope, just know that are and that little one, are now a

part of a family of, BIG HUGER S and Strong Shoulders to learn on.

And know that, Terahs' going to make it through, how ever bumpy the road

may be.

A Friend, Ready to Listen,

Morse

33 years with jra

August 31, 2001

,

Stop freaking. I do medical transcription a living (I type spoken doctor's

dictation for a living). I also have PA. I take 6 tablets of methotrexate

per week for almost 2 years and have had almost no side effects from it. The

only concerning side effect that I got was when I had surgery last year, I

developed an infection that had to be treated with antiboitics and a second

surgery to remove an abscess caused by the infection. This is because the

methotrexate made me vulnerable. My liver enzymes have been fine. For me,

the methotrexate made a tremendous difference in my psoriasis and PA and

pain. It looks like you rheumy wants to do the prednisone taper to try bring

your PA under control. I was put on a prednisone taper one time for an

allergic reaction to misquito bites, something totally unrelated to my PA and

P. I felt really good after that and my psoriasis cleared up for a while.

Maybe it will help you too. The PDR can make even relatively harmless

medications looks like they are killers. The PDR has to list every single,

possible side effect that you could ever possibly have from using any drug.

Yes, some people do have those kinds of reactions, not necessarily every one.

Some of them are so very rare, but the PDR has to list the possibility of it.

That is why your rheumy will track your blood work to make everything is

okay. I hope you have good luck with these meds.

Carol in Vancouver, WA

September 1, 2001

In a message dated 08/31/2001 7:17:44 PM Mountain Daylight Time,

govindasgarden@... writes:

> Basically, I think I am unable to communicate this to my doctor and

> need help with this.

>

--I just approached my family doctor with this problem yesterday

telling him I just can't get my rheumy to listen. He suggested I write a

letter to the rheumy explaining all of it--my fears, my hopes and the

medication I wanted to try. I haven't done it yet because I got the

antibiotic prescription I wanted from my family doctor. He called my rheumy,

they discussed it and I have the prescription in hand. Apparently I made

myself clear to the family doctor.

Anyway--why not try the letter!

Jeanne in Idaho

September 1, 2001

I think that is an excellent idea - It will be much easier for me to write it

all out instead of having him sitting there staring at me while I try to

gather my thoughts. Many many thanks to you for this great suggestion!

September 1, 2001

> Also, yesterday when he made the final diagnosis of PA he

prescribed

> the following meds: methotrexate at 4 tabs one day a week and

> Prednisone at 4 tabs daily for 4 day then 3 tabs daily for four

days

> then 2 tabs daily for 4 days then 1 daily for 4 days then 1/2 daily

> until finished. Then he wants me to take vioxx.

All these medications we take can sound so frightening, especially

when we read about the worse side effects that can occur. I have

been on the same medications that you listed. MTX (20 mg/wk) 2

years, prednisone for about 4 yrs, celebrex for 1 l/2 yrs. I have

been so fortunate that I have had so few, if any, side effects from

these meds. I am especially thankful when I read of how some people

have been affected by these meds. The major change that I have had

recently has been Enbrel--and if you read those side effects, you

would really have second thoughts. Again, I am so fortunate, that

the only problem I have had has been bruising at the injection site

(my tummy) and I know that is directly related by my lack of

proficiency!! I am now tapering off the prednisone, and hopefully

the MTX.

Good luck with your meds--I hope that you will also be able to take

them successfully, if you decide to go ahead with them.

May 5, 2002

Hi ,

Wanted to restate " Welcome to the group! " . I posted a greeting

message in your initial response that I hope you also got.

One other thing I wanted to add. I don't want to alarm you, but I

feel that a lot of doctors say PA is a mild disease in the beginning.

I think a lot of us on this newsgroup would disagree with that

prognosis. When I was diagnosed at age 24, I was told it would be

mild and wouldn't impact my life all that much. I currently have

about 7 big joints and many small joints affected. I've been on

disability for a year. I am NOT saying this will happen to you.

For some people it is mild and remains mild (we all hope this will be

newly diagnosed patients outcomes). For others, it can in fact become

progressively worse. At this time and with the current lack of

medical research, there's no way to predict which way it will go.

I would strongly encourage you to listen to your body. When you hurt,

figure out if you're overdoing some activities and figure out ways to

modify them. Use the techniques of joint protection. Take care of

your health. Proper self-care is a big component to managing

arthritis.

There is a ton of experience here and we hope that you will use the

support here in learning how to cope and manage the PA.

Best wishes and health to you,

Meghan

> Hi all, i've just been diagnosed with PA by a specialist here in

Cardiff South Wales (UK). I've had a painful neck/spine for about 2

years now and it began after weight training (which i've now stopped)

i went through physio, x-rays, blood tests etc and no-one seemed to

know why it was not going away, i had stiffness in the morning,

tingling/numbness in shoulder blades etc and i sort of new something

arthritic was going on but people thought i was just being paranoid.

I've been trying to figure out what the environmental trigger was and

i think it may have been a viral infection or the mercury in amalgam

fillings ( now you really think paranoid!!)as my joints seemed

really rough/clicky almost in the space of a week. I have Psoriasis

on my scalp and elbows but i control it with creams etc. The

specialist said i have a mild form of the disease but i'm wondering

if it starts out mild and then progresses as u age, i'm 29 years old.

I think i have the spinal form of PA, does anybody know about the

progression of the spinal form? and can anybody give me any advice

on exercise, obviously i don't do any weight training just cycling

and stuff but should i be exercising my shoulders neck etc? The

specialist has put me on 600mg of Lodine, has anybody tried this

drug, as i've heard you get stomach problems with NSAIDs. Thanks for

any replies.

>

> Best Wishes

>

> [

May 6, 2002

Hi , Welcome to the group from me too. You will find a wealth of

information here and a lot of caring and support. Listen to Meghan. She is one

smart lady who posts lots of good information. And beware of docs who say PA is

a mild disorder. I remember going to a local NPF meeting to hear an alleged

expert on PA. He also said it was mild. There I sat with a knee twice the size

it was supposed to be and the rest of my leg had begun to swell also because

there was so much excess swelling it had to go somewhere. When he learned this,

he told me I had something else going on besides PA, like maybe RA. Well, I

don't have RA and it was the PA. I could hardly walk but was determined to hear

this expert. What a waste of time. PA can be mild but it can also be severe.

I hope yours is mild and stays mild. I just had to add my two cents worth

because there are a lot of ignorant so called experts out there and they

obviously don't know nearly as much as they think they do. This guy also said

he lets his patients on MTX drink alcohol. Scarey man. I wonder how many people

he has killed or damaged for life because of his attitude. Anyway, listen to

Meghan. If she doesn't know the answer to a question, she will give it her best

shot find the answer for you. She is one smart cookie. Sorry you have to deal

with this, but since you do, you have found the right place.

Hugs,

Shirley

meghan_e <meghan@...> wrote: Hi ,