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Dana,

Welcome to the group sweetie! I'm sure you recognize a lot of the ladies! Congratulations on your pg!

Love & hugs,

Jo-Ann

new member

Hi, all! We have a new member to the group today. I think most of you probably know her, it is Dana from the ectopic pregnancy group that Krista owns. Please welcome her!Amywife to ~2/14/97~mommy to ~6/18/97~ and one on the way ~EDD 11/8/01~

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,

I was just laughing and telling that great minds think alike as I had just joined the PBAEP right as you were suggesting I join. How funny. Hope this finds you well and not working to hard!!

BellyBean said to tell Peanut Hi back!!

Dana

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Dana,

Good to see you over here!! No we are not pg yet I am very comfortable with these and believe it of not I *just* came out of hibernation myself a few weeks ago!!

CONGRATS!! Keep us posted on how things are going!!

e

>From: gradstu12@... >Reply-To: PregnancyBabiesAfterEctopic >To: PregnancyBabiesAfterEctopic >Subject: Re: new member >Date: Mon, 16 Apr 2001 08:49:29 EDT > >JoAnn. > >Thanks alot, you know I really appreciate you holding my hand through the >whole process of finding out (that took a week). Your words of encouragement >helped me get through that incredibly stressful time. Thanks so much for just >being here. > >Dana Get your FREE download of MSN Explorer at http://explorer.msn.com

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  • 3 months later...
Guest guest

Thank you for all the replies to my concerns. Actually, the PTU probably didn't

work because I only took 1/2 the dosage, that stuff scared me also. I'm going

to go back to the first of the 4 doctor's I've seen, he actually returned a

phone call and spoke to me for 10 minutes. That is better than I've gotten from

anyone. I'm going to try the PTU again at the correct dose.

Interestingly enough, when I was diagnosed a year ago, I had alot of symptoms-

hand tremors, sweating, diarrhea, ravenous appetite, dizziness, blurred vision,

etc. I went to a network chiropracter (not like regular chiropractic), I

started going to a chi gung class, started acupuncture and

I quit caffiene. I now have no sypmtoms except an elevated heart rate, between

84-88. I have no pain anywhere (at 43, I was getting achy), and feel great. The

problem is my labs still suck. My TSH is .01 and t4 is 3 times higher than

normal.

Does anyone have success with a high protein diet? I'm going to try to do a

modified atkins diet. All I want to do is stay a size 14 and not have my thin

hair fall out entirely.. I hate gyms and can't jog (bad ankle). I'm just hoping

if I follow a reasonable diet that I won't gain weight anyway. I have always ate

alot of junk food which I will happily give up.

Are there any studies on thyroid level and clinical depression? Throughout this

hyperthyroid period, I have not been at all depressed like I was at times in the

past.

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Hi ,

I'm glad to here your going to give the ATD's another shot, and at the

correct dose :) That dose will lower quickly as your thyroid numbers

respond. You just want to make sure you don't go hypo, so get your labs!

Find out what your FT3 and FT4 are, they are the best indicators. Also ask

that he do your auto-antibodies tests. I wish I had that done prior to RAI.

As for the depression, mine was the worst when I was left hypO for 4

years...of course the ONLY test my former drs. used was a TSH which was in

the *normal* range so my meds were never increased...and all my symptoms

were in my head...NOT! I have a great dr. now and am doing better than I

have in many years...though not great...yet :)

When you get your labs, always ask for a copy of them...you have that right

(at least in most places) I get mine directly from the lab now. Share the

numbers here and Elaine can let you know what you are looking at.

Take care, hang in here!

Jody

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Hi . Welcome and ditto to everything Jody just wrote. I have a

question: what scared you about the PTU? Someone from another list wrote

me how she eventually had RAI (and is now a plus size) because she was so

hesitant about the ATD's causing her to put on weight and she was a

dancer.

Take care,

Fay

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  • 4 weeks later...

Hi Anise,

Welcome to the group.

I don't think you want to have a total thyroidectomy just to decrease thyroid

antibodies. Besides, the common practice today is to leave a small amount of

thyroid tissue. The idea here is that you'll have less functional thyroid

tissue. And that means less thyroid cells that can make thyroid hormone.

If you've been reading the posts you'll see that partial thyroidectomy is

exactly what Caroline had done before getting pregnant and having her new

baby.

However, a simpler, less invasive procedure would be to try Antithyroid

drugs. these will start reducing your symptoms in about a week, and you'll

notice maximum effects in 6-8 weeks. Then, they lower your dose. Once you're

euthyroid (have normal thyroid levels) you stay on the drug until you go into

spontaneous remission. GD has a natural self-limiting course; in some people

it's a few months and for others it takes much longer. The average duration

is 6 mo. to a year.

As for RAI, the problem here is that it generally causes hypothyroidism,

whereas surgery the chance is less. And hypothyroidism is associated with a

slight chance of fertility problems.

Don't feel as if you have to make any decisions overnite. Your doctor can

give you other medications, like beta adrenergic blocking agents

(propranolol, metoprolol, etc.) that will help reduce your symptoms. Do your

homework, and decide what sounds best for you. I have a page on pregnancy on

my web page that you might want to check out. Best wishes, Elaine

Visit my Web Site at http://daisyelaine_co.tripod.com/gravesdisease/

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Hi Anise,

There is no simple answer with GD. Both surgery and RAI are permanent forms

of treatment...they both destroy the thyroid. Graves Disease is NOT a

disease of they thyroid, it is a disease of the immune system. ATD's are

the only form of treatment currently available that can offer a chance of

remission.

Several in this group have attained remission on the ATD's: Debbie R (who

was on ATD's and pregnant <I think...Deb?> Caroline had her thyroid

removed last October, got pregnant a month later and just gave birth on the

4th of August to a healthy and beautiful little boy! I. is due within

the next 4 weeks I think... is on ATD's and Donna is also

pregnant...<donna, I forget when your due?> I think about half way though.

U. had RAI in her mid 20's and I'm sure will tell you her story.

What form of therapy are you on now? And how much time are you giving

yourself to hopefully become pregnant? Anise, again, there are no simple

answers to this complicated disease, but people in this group will do their

best to answer questions. The decision of which treatment to follow through

with is strictly up to you. The archives are full of a wealth of

information and you can use a search, found from the home page, click on

messages, at the top of each message page on the right there is a place to

put in things for search, use , Caroline, pregnancy, pregnant, RAI, ATD

and surgery...and ask questions as they arise.

Welcome to the best group I have ever found.

Jody

_________________________________________________________________

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Hi Anise,

The most commonly used surgical procuedure is the bilateral subtotal

tyroidectomy in which 1 to 2 grams of thyroid tissue is left on both sides

(the thyroid normally weighs about 20 grams) .This is also considered the

safest procedure, although there is a slight risk of injury to both the

parathyroid glands and the laryngeal nerves. Permanent hypothyroidism occurs

in up to 40% of patients, whereas permanent hypothyroidism occurs in about

20% of patients using ATDs in a period up to 20 years.

The natural course of GD varies. Some people move onto hypothyroidism even

without treatment.

I do have some articles on ways to balance and strengthen (not stimulate) the

immune system on www.suite101

Do a search on Graves' disease. And the chapter in my book on alternative

medical options for GD explores stress reduction techniques, immunomodulators

and Eastern philosophies for treating GD.

You'd probably learn the answers to some of your questions on the online

thyroid medical book at www.thyroidmanager.org Keep asking away until

you're sure whatever decision you make is the one that best suits you. Good

luck, Elaine

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Elaine, thanks for your warm welcome and helpful info. Can you

tell me about how much thyroid they leave for a partial

thyroidectomy? And whether it means you don't need either ATDs

or Replacement hormones, or if you need both but in lower

doses?

This thing about Graves being self-limiting is really good news.

Do they have much information about this, eg does it happen to

everyone within five years , or only people who don't have the eye

problems too, or 70% of everyone. Any stats?

If this is very likely to happen to me within a couple of years, I

might just take time off and take the Antithyroid medication and

try to rebuild my health, as you recommend. My husband keeps

telling me to stop work altogether and really relax and de-stress.

Oh and I am sorry if I sounded rude when I mentioned your old

message where you said the TSI originates in the Thyroid, and

that I'd found they really aren't from the Thyroid at all. Its just that

I'm trying to get it all clear and I have this feeling of urgency: " Got

to decide right now! " And I am so moody and all

I look forward to checking your webb site

> Hi Anise,

> Welcome to the group.

> I don't think you want to have a total thyroidectomy just to

decrease thyroid

> antibodies.http://daisyelaine_co.tripod.com/gravesdisease/

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HI Anise

Welcome to the group. I have read the replies you have received and the your

other posts. Good on you for doing the

research. It is vital that you get as much information as possible. Any decision

you make needs to based on as much

info as you can collect, your circumstances and your future health needs.

I assume you done a search of the archives (as suggested by Jody). In there you

will find many posts from me where I

have outlined my decision to have a sub total thyroidectomy - but I will give

you a shortened version -

I had a miscarriage in June 1999, I was diagnosed with Hyperthyroidism in May

2000. I'm sure I've had for some time

without knowing. I commenced on PTU & a beta blocker immediately with some

relief to symptoms. I had a large goitre

and tested positive to Graves antibodies in June 2000. I also saw a great

naturopathic physician who gave me a

course of homeopathic medications to help re-balance my immune system. I'm sure

that this helped me as much the

other meds did.

I had been trying to fall pregnant since Nov 1998 and was already 39yrs old, so

I felt waiting for remission would

take time I didn't have, besides my goitre was large and the PTU I had to take

was higher in dose than I felt

comfortable with in pregnancy. I chose surgery (my endo did not favour RAI for

anyone except those with Thyroid

cancer anyway). The surgeon wanted the remove entire thyroid (now the common

practise of the college of surgeons in

Australia due to the risk of repeat goitre in years to come). I refused as I

felt strongly (mostly due to the

experience of others in this group) that it was important to have some naturally

functioning thyroid gland left.

I had the surgery in Oct 2000, started on thyroid replacement medication (I had

some damage to my parathyroids

during surgery and had to take calcium also - this damage is now repaired, but I

still take calcium for good

measure) and by surprise fell pregnant in Nov 2000. I believe that I have 1gram

on the right and 2 grams on the left

side of my thyroid remaining.

My pregnancy went well. I had 2 weeks of hypo (16 to 18 wks) and with an

increase to my meds I have been stable

since (in the range recommended for pregnancy). My baby is a beautiful healthy

boy (scored 9 out of 10 on the apgar

scale at 1 minute and then again at 5 minutes post birth, and he passed the

paediatrician's examinations with flying

colours). Most of the time I felt better than I have in about 4 years. Right now

I'm on top of the world - getting

used to sleeping in 3 to 4 parts, but loving every minute of it!

I believe that this illness needs to be treated form all fronts - not just the

'symptoms' but also the cause. I

started listening to my body and resting when I needed to, reducing my stress,

working part time (when I needed to -

fortunately my work was flexible enough to enable me to vary the hours). I also

started saying no and not feeling

guilty!

Hope some of this has helped. Take care

Cheers

Caroline

Anise Kennedy wrote:

> hi, I am trying to find out about how this disease works and what my options

> are and I feel awful and cant think straight, as I am sure many of you

> understand.I have read through a lot of the archives and found someanswers

> to some of my questions. We put off having our family while I did the career

> tthing, miscarried and now find I have Graves. I have figured that first I

> have to get my hyperthyroidism under control, and then a choice between

> getting stable on the safest drug for pregnancy, or having RAI and wait

> ing6months at least before trying to have a baby, or having my thyroid

> removed and getting stable. But I can't find out how the Graves will affect

> conception and pregnancy in each of these 3 treatment choices. I am hoping

> some of the people in this group could tell me.

>

> In Elaine's message 3805, she says that the TSI antibodies that cause Graves

> Disease originate in the Thyroid. It sounds as though removing the thyroid

> should get rid of the antibodies and cure the Graves disease. But I can't

> believe the answer is so simple. Or ithere some other catch?

> thank you

>

> Anise

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

>

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

> 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.

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

>

>

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> Hi Anise,

GD has a natural self-limiting course; in some people

> it's a few months and for others it takes much longer. The average

duration

> is 6 mo. to a year.

Dear Elaine,

Now, if the average time spent getting Graves' diagnosed is 5 years

how is it that it usually lasts only 6 months to a year? Does this

time consider the fact that Graves' is most likely part of the

Hashimoto's/Graves' continuum of autoantibodies and that Graves' is

usually preceded by a peroid of Hashi's hypothyroidism? And often

ends with it? And I wonder, are these figures only about people that

are promptly diagnosed and treated? I mean, I've had hyper symptoms

since 1978, sometimes extreme, and now I am finally diagnosed with

Euthyroid Graves', and that is Hashi's and Graves in balance, you

could say. One can be hyper and then hypo, antibody populations

always fluxuating until they become, finally, hypothyroid...the usual

result of the disease, isn't that correct? But that part isn't

considered part of Graves' disease? Only hyperthyroidism? It is hard

to get the picture here. Very confusing.

Who is it that says this usually lasts 6 months to a year? Is it

the same people that say the eye disease only lasts a year? (ha)

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HI Caroline,

Thank you for taking the time out to answer my questions . It is

so good to hear of success stories like yours. I can understand

your urgency, believe me. My Mom and her sisters all had late

menopauses so perhaps I can count on having the same

myself, and take the next year or two just for getting my GD under

control. When you say we need to treat the cause of the disease,

not just the symptoms, I am not sure what you mean exactly. The

Dr tried to say that no-one knows the cause, but a lot of people

say the autoimmune illnessesare all stress-induced, and are all

part of flight or fright response going overboard and burning out

diffferent bits in different ways. But I am really keen to hear what

you do in practical terms to cut out the stress so it doesn't hit the

body. I guess saying no without feeling guilty is part, maybe a big

thing effectwise,-sounds small but could add up to a lot of

difference. It obviously worked for you Which is wonderful.

I read your question about antibodies getting through the

breastmilk so I emailed a friend who goes to a Nursing Mothers

Group. She said that she knows that all the antibodies you make

go through the milk: thats why(in general) breast milk is so

good,- most of them are good for your baby. She said that if you

ring the Australian BreastfeedingAssociation (just changed its

name) their trained counsellors know in detail all about exactly

this sort of thing so should be able to tell you if it is a problem or

not.Hope this helps.

> HI Anise

> I believe that this illness needs to be treated form all fronts -

not just the 'symptoms' but also the cause.

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Dear Anise

I have just posted an answer to where I spoke a bit about what the endo

said re cause of GD and what I do re

stress.

I do wish I had more time and didn't have to have surgery as I fear that

although all is going really now it may not

last. Some here had initial good responses to RAI and then sometime later

experienced problems. I'm not happy about

having to have life long management of my thyroid levels - but so be it - I have

a beautiful baby boy who reminds

everyday that the decision I made was right for me and him. I also remind myself

that if we take one day at a time

we can achieve anything!

Thanks for the info regarding breast feeding. I hadn't thought to ring the

association - it now seems so obvious.

I'll give them a call on Monday.

I'm sure you won't regret giving the ATDs and monitoring a chance. Have you

considered also using alternative

medicine approaches such as naturopathy, homeopathy and acupuncture etc. in

conjunction with tradition medicine?

Take Care

Cheers

Caroline

anise_kennedy@... wrote:

> HI Caroline,

> Thank you for taking the time out to answer my questions . It is

> so good to hear of success stories like yours. I can understand

> your urgency, believe me. My Mom and her sisters all had late

> menopauses so perhaps I can count on having the same

> myself, and take the next year or two just for getting my GD under

> control. When you say we need to treat the cause of the disease,

> not just the symptoms, I am not sure what you mean exactly. The

> Dr tried to say that no-one knows the cause, but a lot of people

> say the autoimmune illnessesare all stress-induced, and are all

> part of flight or fright response going overboard and burning out

> diffferent bits in different ways. But I am really keen to hear what

> you do in practical terms to cut out the stress so it doesn't hit the

> body. I guess saying no without feeling guilty is part, maybe a big

> thing effectwise,-sounds small but could add up to a lot of

> difference. It obviously worked for you Which is wonderful.

>

> I read your question about antibodies getting through the

> breastmilk so I emailed a friend who goes to a Nursing Mothers

> Group. She said that she knows that all the antibodies you make

> go through the milk: thats why(in general) breast milk is so

> good,- most of them are good for your baby. She said that if you

> ring the Australian BreastfeedingAssociation (just changed its

> name) their trained counsellors know in detail all about exactly

> this sort of thing so should be able to tell you if it is a problem or

> not.Hope this helps.

>

>

> > HI Anise

> > I believe that this illness needs to be treated form all fronts -

> not just the 'symptoms' but also the cause.

>

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

> 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.

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

>

>

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  • 3 months later...

Hi Amy,

Welcome to the group. The symptoms of looking younger and clammy hands are

well-documented symptoms. I think it has to do with our skin staying moist

when we're hyper. Hypothyroidism is a different story entirely.

They is a slightly less fertility rate in hyperthyroidism but fertility

problems are more pronounced in hypothyroidism. Study your treatment options

carefully. If you elect to use anti-thyroid drugs, you're much less likely to

become hypothyroid. Even if you become hypothyroid after ATDs, it's generally

much later in life.

I rushed into treatment and had my thyroid gland destroyed. This I bitterly

regret since for me hypothyroidism has been far worse than hyperthyrodism.

Take your time and learn all that you can. Best to you, Elaine

See my web site, http://daisyelaine_co.tripod.com/gravesdisease/

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  • 1 year later...

Hi . Thanks for the welcome. :)

Quick intro - I'm 31, married, have a 4 year old daughter, and live in Indiana.

My family doctor sent me to a hematologist/oncologist after my WBC count kept coming back low, but I've been "sick" for several years now...just the general achiness, feverish, always tired, short of breath, no energy kind of thing, plus hair loss, and skin problems that the dermatologists have never been able to clear up. And in the past year or so I've had more specific symptoms crop up, like lumps on my shins, heart problems, raynauds, etc. The hematologist went over my medical history and ordered 23 blood tests and a chest x-ray series. I went back last week to get the results and was diagnosed with Mixed Connective Tissue Disease.I had Juvenile Rheumatoid Arthritis as a kid, so I'm not new to automimmune diseases, but I've found that being a sick mom is much tougher than being a sick kid who has a mom to take care of her. ;)

Adell

Welcome, adell@.... Tell us a little about yourself. I'm ; I have Crohn's Disease & all the stuff that goes with it. Right now, I'm having problems from tapering off prednisone; but the Remicade & 6-MP seem to be working for the Crohn's.

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Hi Adell - Welcome to the list. Feel free to join in at any time and ask any questions, we don't mind! lol Some days we're a chatty bunch and some days we're not. I have RA, OA, Gerd, High blood pressure, migraines, and a number of other troublesome symptoms. I'm married to , we've been married for 15 1/2 years, two kids - is 23, and a is 21, she's married and just had our first grandbaby! He's so cute. lol Glad you found the list!

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Krein?

new member

Welcome, adell@.... Tell us a little about yourself. I'm ; I have Crohn's Disease & all the stuff that goes with it. Right now, I'm having problems from tapering off prednisone; but the Remicade & 6-MP seem to be working for the Crohn's.

____________________________________________________ IncrediMail - Email has finally evolved - Click Here Please visit our website at:http://ACES_Autoimmune.tripod.com

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Welcome, Adell. You sound like you've got yourself a ton of symptoms. At least it's nice that the doctors have put a name on it and haven't said IAIYH (it's all in your head). You're right that it's much nicer being sick when you have a Mom to take care of you instead of being responsible for your own care and that of your daughter and husband.

My name is Jane and I have fibromyalgia, MPS, hypothyroidism, osteoarthritis, osteoporosis, ankylosing spondylitis, bulging disks, chronic bronchitis, asthma, and some symptoms that the doctors haven't defined yet. I'm soon going to be 39 for the 22nd time, married for 37 years, have 2 sons, and 5 grandchildren. I live in FL.

Jane

Re: new member

Hi . Thanks for the welcome. :)

Quick intro - I'm 31, married, have a 4 year old daughter, and live in Indiana.

My family doctor sent me to a hematologist/oncologist after my WBC count kept coming back low, but I've been "sick" for several years now...just the general achiness, feverish, always tired, short of breath, no energy kind of thing, plus hair loss, and skin problems that the dermatologists have never been able to clear up. And in the past year or so I've had more specific symptoms crop up, like lumps on my shins, heart problems, raynauds, etc. The hematologist went over my medical history and ordered 23 blood tests and a chest x-ray series. I went back last week to get the results and was diagnosed with Mixed Connective Tissue Disease.I had Juvenile Rheumatoid Arthritis as a kid, so I'm not new to automimmune diseases, but I've found that being a sick mom is much tougher than being a sick kid who has a mom to take care of her. ;)

Adell

Welcome, adell@.... Tell us a little about yourself. I'm ; I have Crohn's Disease & all the stuff that goes with it. Right now, I'm having problems from tapering off prednisone; but the Remicade & 6-MP seem to be working for the Crohn's.

Please visit our website at:http://ACES_Autoimmune.tripod.com

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No, I'm Parrott. Krein's the one having a birthday today.

P.

-- Re: new member

Krein?

new member

Welcome, adell@.... Tell us a little about yourself. I'm ; I have Crohn's Disease & all the stuff that goes with it. Right now, I'm having problems from tapering off prednisone; but the Remicade & 6-MP seem to be working for the Crohn's.

Please visit our website at:http://ACES_Autoimmune.tripod.com

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Hi Adell and Welcome again!

Where in Indy are you? We have another one here from Indy (wake up Shirls!!!)

You've come to the right place for support, caring and understanding!

Christy

List Mama.... along with Pam who is the List Step-Mother hehe

Re: new member

Hi . Thanks for the welcome. :)

Quick intro - I'm 31, married, have a 4 year old daughter, and live in Indiana.

My family doctor sent me to a hematologist/oncologist after my WBC count kept coming back low, but I've been "sick" for several years now...just the general achiness, feverish, always tired, short of breath, no energy kind of thing, plus hair loss, and skin problems that the dermatologists have never been able to clear up. And in the past year or so I've had more specific symptoms crop up, like lumps on my shins, heart problems, raynauds, etc. The hematologist went over my medical history and ordered 23 blood tests and a chest x-ray series. I went back last week to get the results and was diagnosed with Mixed Connective Tissue Disease.I had Juvenile Rheumatoid Arthritis as a kid, so I'm not new to automimmune diseases, but I've found that being a sick mom is much tougher than being a sick kid who has a mom to take care of her. ;)

Adell

Welcome, adell@.... Tell us a little about yourself. I'm ; I have Crohn's Disease & all the stuff that goes with it. Right now, I'm having problems from tapering off prednisone; but the Remicade & 6-MP seem to be working for the Crohn's.

Please visit our website at:http://ACES_Autoimmune.tripod.com

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  • 2 weeks later...

DEC 4???????????? Why so long???? That's horrid! I've heard of them taking a few weeks but geez... that's pushing it~

Re: new member

Thanks for the warm welcome, everyone. :)

Sorry it's taken me so long to respond, it's been a crazy week here.

I haven't been started on a treatment plan yet. My first appt with the rheumatologist is Dec 4, so things are sort of on hold for a couple more months.

Shirley - It looks like we might be neighbors! I live on the westside as well, in Brownsburg.

Adell

Please visit our website at:http://ACES_Autoimmune.tripod.com

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  • 1 month later...

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