Newly diagnosed

[Guest guest]

Randy,

I sure will. Good Luck. MCV is a wonderful hospital. I have my fingers

crossed for both you and your potential donor.

[Guest guest]

Hi Janis,

You mention going to see a doctor in Boston, where are you from?? The rheumatologists in Boston are Wonderful!!! My daughter is 8 and has had systemic jra since she was 9 months old. And that is also the very, very short version of the story. Do you have specific questions?? This is a wonderful list with lots of information from very helpful parents. Talk to you soon. Aj

[Guest guest]

My sister and her family live in Acushnet, outside New Bedford, MA.

I live in southern NH. She went to see a doc at Mass Medical

Center. I forget the doc's name.

Although my sister has had to go through medical issues with her

oldest son, thankfully and hopefully it is resolved. Both of my

boys have also had medical issues. My youngest has Pierre Robin

Sequence. Beacause of this he had surgeries early in life, has a g-

tube, and has a reactive airway. I have learned alot from the

internet and the value of getting support from parents. My sister

is not yet ready to search out information from other parents. She

is scared to find only the worst of what might be ahead. So, I want

to do what I can to help them. I think the docs are saying that she

has the pauciarticular kind. I appologize for not knowing all the

specifics. I just felt the need to do this this morning, I didn't

do any prior homework on her specifics. The next time I will post

with more specific questions of my own. I was wondering if anyone

had any good ones for us to ask of the docs. Thanks Aj.

Best wishes to everyone out there, Janis

> Hi Janis,

> You mention going to see a doctor in Boston, where are you

from?? The

> rheumatologists in Boston are Wonderful!!! My daughter is 8 and

has had

> systemic jra since she was 9 months old. And that is also the

very, very

> short version of the story. Do you have specific questions??

This is a

> wonderful list with lots of information from very helpful parents.

Talk to

> you soon. Aj

[Guest guest]

Welcome to the group nne.. We could all relate to what your going

through.. I think we all feel exhausted during the daytime.. It seems to

go along with the disease. thats my biggest problem also..

Keep posting..

Mike

>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

Message: 1

Date: Mon, 6 May 2002 19:32:09 -0400

From: " nne Quirk " <mquirk2@...>

Subject: Newly diagnosed

I have been reading all the notes for some time now and have not yet written

until now. I have been struggling with psoriasis for the last 36 years and

now I have the arthritis. I feel I have a good rheumatologist and he and my

primary doctor are working together. I'm on Lodine, however, I awake soooo

horribly stiff and cramped every morning and my hands are dead. I started

all the troubles with tendonitis that switched back and forth between my

feet for 5 solid months. Then I progressed into gout, but with each new

flare, it seemed to spread beyond my feet into my shoulders, elbows, right

knee etc. My feet are doing better, I can walk normal and wear comfortable

real shoes, but overall I am feeling pretty terrible still. It has made

sleeping difficult too. I wake up several times a night and feel exhausted

most of the day. I appreciate all the emails in these digests.....I have

learned a lot through them. I decided it was time to write in and join the

support group! Thanks!

nne Q.

<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<

<

[Guest guest]

Hi, your tsh is verrry high, most of us feel better below 1. If you feel

bad that is why---you will need more medicine and there are other choices

besides synthroid. You can order an adrenal test from www.saliva-test.com

(I think) or www.healthcheckUSA.com

Gracia

> I am newly diagnosed after feeling bad for about 5 yrs. After doing

> research, I asked for an antibiodies test, and was high. My TSH was

> only 3.1 and my current Doc reluctantly gave me a small dose of

> Synthroid. I am concerned though as my research talks about adrenal

> insufficientcy, and how it's important to see if your suffering from

> this BEFORE prescibing any thyroid therapy. Evidently it can make

> you worse. I have 2 mos before I can see my Endo. Any thoughts on

> this?

>

>

>

>

[Guest guest]

Ya know I had a friend who thought she had

hypothyroidism for the longest time. She was

convinced that she had it. Her symptoms were a lot

like mine. I recommended she go to a doc and get a

full work up. In the end it was discovered she had a

vitamin b deficiency. Have you had a full blood work

up on everything? Including the free/floating T3 and

T4 tests they can do?

--- kspitz12 <kspitnale@...> wrote:

> I am newly diagnosed after feeling bad for about 5

> yrs. After doing

> research, I asked for an antibodies test, and was

> high. My TSH was

> only 3.1 and my current Doc reluctantly gave me a

> small dose of

> Synthroid. I am concerned though as my research

> talks about adrenal

> insufficiency, and how it's important to see if

> your suffering from

> this BEFORE prescibing any thyroid therapy.

> Evidently it can make

> you worse. I have 2 mos before I can see my Endo.

> Any thoughts on

> this?

>

>

>

[Guest guest]

my blood work came back " normal " but I was still having so many of the symptoms

of hypothyroidism that my chiropractor put me on Thytrophin PMG. Does anyone

have any experience with this remedy? It seemed to throw my hormones for a loop

and I have not felt the same emotionally since taking it. I wonder if it is the

cause. Can anyone offer any advice?

Thanks,

Re: newly diagnosed

Ya know I had a friend who thought she had

hypothyroidism for the longest time. She was

convinced that she had it. Her symptoms were a lot

like mine. I recommended she go to a doc and get a

full work up. In the end it was discovered she had a

vitamin b deficiency. Have you had a full blood work

up on everything? Including the free/floating T3 and

T4 tests they can do?

--- kspitz12 <kspitnale@...> wrote:

> I am newly diagnosed after feeling bad for about 5

> yrs. After doing

> research, I asked for an antibodies test, and was

> high. My TSH was

> only 3.1 and my current Doc reluctantly gave me a

> small dose of

> Synthroid. I am concerned though as my research

> talks about adrenal

> insufficiency, and how it's important to see if

> your suffering from

> this BEFORE prescibing any thyroid therapy.

> Evidently it can make

> you worse. I have 2 mos before I can see my Endo.

> Any thoughts on

> this?

>

>

>

[Guest guest]

Hello Meredith,

Welcome to the group! There are many young people on this list and

your story is not at all uncommon here for anyone. Many people

received an initial diagnosis from a dermatologist or podiatrist.

Anyway, please feel welcomed to keep posting and asking questions and

discussing what's going on with you.

If the Mobic is not helping, keep talking to your GP or rheumy about

other NSAIDs (non-steroidal anti-inflammatories): Vioxx, Celebrex,

Relafen, increase the Mobic dosage. Make sure and take the NSAIDs

with food. Chronic NSAID use can often lead to stomach problems, so

do be careful there.

Also, talk to your rheumy about how aggressive they're willing to be.

In my opinion, drs should treat PA more like RA (rheumatoid) and be

fairly aggressive early on. But a lot of rheumies are still 30 years

behind and thing it's ok to treat PA conservatively. Agressive

treatment means starting on methotrexate within about 3 months of

diagnosis. This is not a pain reliever. It is a disease modifier and

you probably wouldn't see results for a couple of months. It is a

fairly serious medication and requires blood tests every 6-8 weeks to

check your liver funtion.

In addition on your first rheumy visit, document document.

Other things to do for swollen areas is to ice, use warm water and

contrast baths (2 tubs of water- 1 cold and 1 hot. soak in the warm

for 1-2 mins and then the cold for 1-2 mins. alternate for 10-14

minutes). These are temporary pain relievers. Also, this is important-

keep moving all of your digits and joints! Even if you have to use

your other hand to move the digits. Maintaining functionality is

really important!

I'm sorry to say his disease does not just go away. It isn't like a

cold. Some people do experience remission for periods of time. It

varies from fairly mild to very severe. So far, your case sounds

moderate. The sooner they can get it under control, the better off

you'll probably be. Also, there are a lot of other symptoms that may

come up later if they do not get it under control. There doesn't TEND

to be permanent joint damage, but it does in fact happen. Even so,

the arthritis is painful and don't let doctors try to tell you

otherwise.

Best wishes,

Meghan

> I took this to my dermatologist who said it is PA and referred me

> to the rheumatologist. I am happy to finally know that there is

> something wrong with me and I am not just crazy, but at the

> same time worried about what the future holds.

>

> So,to wrap things up...does anyone have any ideas to ease the

> pain in the meantime. The Mobic does not seem to be helping.

> Also, what can I expect on my first visit to the Rheumatologist?

> Does this every go away?

> Thanks for any help you can give me!

> Meredith

[Guest guest]

Meredith,

Welcome to the not so wonderful world of Psoriatic Arthritis and to

our forum. I've heard stories like yours here before, and I'm

appalled at how inept some doctors seem to be. There's definitely

something wrong with our medical system if patients have to diagnose

themselves.

As for temporary relief for your symptoms, you might try some over

the counter Alleve. It contains Naproxen sodium and so I assume is

the same as the prescription Naproxen that rheumatologists frequently

prescribe. If the rheumatologist does happen to put you on Naproxen

or a similar NSAID, you might want to ask for a prescription for

Cytotec at the same time unless you're pregnant. Cytotec helps

alleviate stomach problems caused by NSAIDS, but can also induce

premature birth or abortion in pregnant women.

From the seriousness of your symptoms however, my guess is the rheumy

will want to at least put you on methotrexate and folic acid. I'm

sorry to say that no - it never goes away, at least not for very

long.

Good luck,

-- Ron

Hi,I received a preliminary diagnosis of Psoriatic

> Arthritis from my dermatologist. I am trying to get in to see a

> Rheumatologist but looks like it could be a couple of months

> before I am able to get an appointment. Any ideas on how to

> aleviate some of the pain in the time being? To give you an

> idea of what's going on...I have been battling psoriasis for

> about a year. I am an otherwise healthy 27 year old female.

> About 5 months ago the index finger of my right hand became

> swollen and extremely sore. I saw my gp and she thought it may

> be a chipped bone, wait it out to see if it heals. In the mean

> time my left big toe became extremely swollen and sore. Again,

> saw my GP and was tested for gout. Test results were negative.

> My GPjust kept telling me to take ibuprofin. Then the right foot

> starts to swell and hurt. I went to a podiatrist. Just some

> inflamation in the joints, prescribed mobic (anti-inflamatory).

> Things are still getting worse. I am not able to control the

> psoriasis on the scalp,the finger is worse than ever and xray's

> show it is fine. My jaw is sore,back is extremely sore,

> hips,legs and left elbow are sore as well. I find it a chore

> just to get out of bed in the morning. Walking becomes extremely

> difficult at times.

>

> I decided to do some reseach myself since I was not getting any

> answers from anyone else.I came across psoriatic arthritis. I

> fit all the symptoms. I took this to my dermatologist who said

> it is PA and referred me to the rheumatologist. I am happy to

> finally know that there is something wrong with me and I am not

> just crazy, but at the same time worried about what the future

> holds.

>

> So,to wrap things up...does anyone have any ideas to ease the

> pain in the meantime. The Mobic does not seem to be helping.

> Also, what can I expect on my first visit to the Rheumatologist?

> Does this every go away?

> Thanks for any help you can give me! Meredith

[Guest guest]

Couldn't agree more about doctors getting it wrong.

It took about 2 years for someone to say i had PA, by which time some

finger joints on both hands wre byond repair.

Mine started off with pain in one finger, it was blue and swollen, i

went to the local Casualty department coz i thought id broke it and

they told me to go away and rest it and not to be so silly (well

thats what it felt like they were saying). the i started to get the

psoraisis, i had a very bad bout of it but it has only ever affected

my hands. i was given cream by my doctor which settled it and they

decided to keep an eye on it. Then i started to get the watery

blister-like psoraisis on my hands and i was treated like a freak

show, at one point all the doctors from the practice came in to have

a look at me and they all went away shaking their heads saying they'd

never seen anything like it before. thats when they referred me to a

dermatologist who the referred me to the rheumatologist.

my rheumatologists are really nice and my senior consultant is nice

too, i guess im lucky coz some poeple feel that their doctors dont

give a damn about them.

if you feel that your doctor dont understand you and your needs then

please change doctors, there are some really nice ones out there, im

at my fourth different surgery now since it started and i think ive

finally found a doctor who wont treat me like a freak.

x

[Guest guest]

Hello Meredith,

My first visit to the rheumatologist was just last week; until then

I'd never heard of PA (my first post was Newbie in VA so I won't go

into what led to the rheumatologist).

I had to wait about 6 weeks from the day the ortho. dr. decided to

send me to a rheumy. This man is wonderful. He was so nice and he

talked to me in his office prior to going to the exam room. Mostly

he asked me questions as he scanned my records from the last doctor.

I had never been diagnosed with psoriasis but **he** asked me about

any rashes. Then I showed him my fingernails and he was so

excited... he said I was wonderful because I was so " easy " to

diagnose (doesn't say much about my other doctors).

He drew some fluid off my knee (and was amazed that no one else had

done that) and gave me a deep (ouch!) cortisone shot. My knee has

felt soooo much better. The fluid was really yucky looking -- don't

watch if yours does that. I wish he'd done that to my toe (if that's

possible).

He put me on methotrexate (MTX) and is very serious about me coming

back in 4 weeks -- exactly-- for a blood test.

More doctors should be aware of PA. From the few messages I've read

on the list its amazing that so many people have this for so long

before somebody diagnoses. Good for you that you researched enough

to find it yourself!!!

Welcome to the 'club.'

Debby

********

Also, what can I

> expect on my first visit to the Rheumatologist? Does this every go

> away?

> Thanks for any help you can give me!

> Meredith

[Guest guest]

As I am sure you surmised your situation is not unique. I had the added

problem of actually having slightly elevated uric acid levels so they

thought it was gout for a long time. I spent almost a month bed-ridden with

pain at two seperate points.

I did not go through a dermatologist to get diagnosed though. I had badly

swollen knuckles at the same time I had a severe case of bronchitis so my GP

put me on prednisone for the bronchitis and said that if the swelling went

down with the prednisone I had arthritis of some sort.

Blood work never showed any signs of inflamatory disease.

Took over a month to get into the rheumatologist. He had some of my records

and took one look at my fingers and toes and was able to diagnose right

away. he said in over 20 years of practice he had only had one female

patient under 50 with gout.

NThe second visit to the rheumatologist he had an intern with him and even

the intern was able to tell what I had. Whenever any of my docs have med

students they usually bring them in to check out my fingers as I have the

typical ridged and pitted fingernails

Lorna

[Guest guest]

In a message dated 05/30/2002 12:51:21 PM Eastern Daylight Time,

piglet@... writes:

> I had the added

> problem of actually having slightly elevated uric acid levels

Lorna - I've also had elevated uric acid levels - be careful of kidney stones

- drink all you can stand - My uric acid blood level is ok now, but my

" dipstick " test is off the charts for acidity. My nephrologist thinks I

probably have something called renal tubular acidosis - basically a metabolic

defect treated through diet and drugs. Keep an eye on your levels - it can

cause problems.

[Guest guest]

Dear ,

Why do you have a nephrologist? Do you have kidney stones or for some other

reason? The reason I ask is I am waiting for my rheumy to call me back

about an increase in one of my tests for kidney function and I wonder if

other people have had similar troubles. I have been on a diuretic for my

blood pressure and since then my creatinine (test for kidney function) has

been creeping up and I cannot get them to pay attention to it. They say

that it is a benign chronic elevation without doing anything to find out if

it is. I have finally decided that I have had it and I will either get my

pcp or the rheumy to do some more testing. I am a nurse and have had some

experience with blood test results. I have had the arthritis for many, many

years but was only recently diagnosed when I developed nail changes on a toe

nail. I looked at the doc and said, “this has only taken 40 years to get to

the bottom of.” Wish doc’s would pay more attention, I really think he is

right but don’t want to take a chance with something as precious as kidney

function.

Anne

Re: [ ] Newly Diagnosed

In a message dated 05/30/2002 12:51:21 PM Eastern Daylight Time,

piglet@... writes:

> I had the added

> problem of actually having slightly elevated uric acid levels

Lorna - I've also had elevated uric acid levels - be careful of kidney

stones

- drink all you can stand - My uric acid blood level is ok now, but my

" dipstick " test is off the charts for acidity. My nephrologist thinks I

probably have something called renal tubular acidosis - basically a

metabolic

defect treated through diet and drugs. Keep an eye on your levels - it can

cause problems.

[Guest guest]

Hi Kim and Logan,

Welcome. I'm sad to hear about another child having to live with

arthritis, it is so hard going through the diagnosis process and it can be

very scary once you actually have one. I'm sorry that you and your family

have to go through this but fortunately you have found a very supportive

group of people who know what you are going through and you now have plenty

of people to talk to.

I don't know anything about reactive arthritis, but someone on this

list probably does and I'm sure once Georgina (the wonderful woman

responsible for starting this network of support) discovers you she will be

looking for answers for you. She is very helpful and cares so much about us

and all of our kids.

My daughter Riley will be 5 in August and was diagnosed with

polyarticular jra in May. Hers was brought on by a virus that she had at the

end of March and she started limping in April. It is in both of her knees,

one ankle, one wrist fingers on both hands and in the tmj joint. I know how

hard this is. I hope they find the right cocktail of medications for Logan

quickly and he responds well. Don't apologize for leaving a long post, say

whatever you need to say to help get yourself through this. That is what we

are here for. Feel free to email me any time you feel that you need someone

to talk to. I'm sorry that I can't answer your questions, but I wanted to

say hello and let you know that there are a lot of supportive people here for

you. Take care,

Ellie and Riley 4 poly

[Guest guest]

My daughter can't take the nsaids because of bruising, bleeding. Also

whenever she got strep her joints were worse. Be stong about the nsaid issue.

He should not have the bruising, even if his blood work is OK. My daighter

is in remission now. Good Luck SHU

[Guest guest]

Hi, I am sorry to hear about your son. My son does not have reactive arthritis,

but it is in our information his doctor gave us. This is what it says about it.

Arthritis is reactive when it is due to a delayed reaction of an infection. The

arthritis usally occurs 2-4 weeks after the infection and last 8-16 weeks. It

may occur or last longer in some people. Current research supports combining

antibiotics with other treatments.

Joint problems in large joints, such as hips, ankles, knees, and sacroiliac

joints. Affects fingers and toes. Joint problems on one side of body only.

Swelling of entire fingers or toes.(resemble sausages) HLA-B27 genetic tissue

type.

Onset can be acute with fever and involve many joints.

My son has a spondyloarthropathy type arthritis and reactive is listed under

them. I don't know if this will help or not. I thought I could at least type

this info for you. Hope it helps some.

Amy

newly diagnosed

Well I have been reading ya'lls posts for about a week,and now feel

ready to jump in. My son,Logan (will be 5 next month)has

been " diagnosed " with reactive arthritis .The rheumy thinks he got it

from a strep infection, in Nov. I disagree,(he was in pain before the

strep)but,whatever. He definatly has it in both knees,both ankles,and

maybe in 1 toe.When he had strep last week his right shoulder started

hurting sooo bad that he was just crying. He normally doesn't cry,he

just says " his bones hurt way down deep " . His pediatrician,feels he

will outgrow this,but that it will most likely go to every joint.My

question is this,,,has anyone heard of reactive arthritis,,also he is

currently on naprosyn,,but he is soooo bruised up.He went off the

naprosyn for 2 weeks and the bruises went away,but now he is back on

it and he looks like he has been beaten.Has anyone else experienced

this? I'm sorry this is so long,but I don't have anyone else to talk

to.Thanks,

Kim,,Logan 4 & 1/2

[Guest guest]

Hi Kim

I have heard of reactive arthritis, it is usually considered to be a short-lived

reaction to an infection. They thought that my son Rob may have that when he

had his first hospitilization - but he continued to get so much worse with

symptoms that went beyond what they expected and finally was diagnosed with

systemic JRA. I hope that Logan does have the " reactive " type, because that

would mean that it will go away. I have heard it explained as being similar to

the achiness you get with a cold, flu or other viral type illness - only worse

and longer lasting. I was under the impression that it would go away quickly -

but I really have no more information. Maybe the arthritis foundation would

have some information - and perhaps some of the medical websites like webmd and

the merck manual one recently posted by Georgina. I am sorry that I really

don't know more - Robbie was too ill at the time - and I didn't believe the Docs

for a minute so I didn't look to far into it. Best wishes for you and Logan - I

hope he gets better soon. You have found a great place for information and

support - I don't know what I would have done without the help that I have

received here.

Val

Rob's Mom(4,systemic)

In a message dated Sat, 22 Jun 2002 6:19:05 PM Eastern Standard Time,

berlydawn4kids writes:

>

>

> Well I have been reading ya'lls posts for about a week,and now feel

> ready to jump in. My son,Logan (will be 5 next month)has

> been " diagnosed " with reactive arthritis .The rheumy thinks he got it

> from a strep infection, in Nov. I disagree,(he was in pain before the

> strep)but,whatever. He definatly has it in both knees,both ankles,and

> maybe in 1 toe.When he had strep last week his right shoulder started

> hurting sooo bad that he was just crying. He normally doesn't cry,he

> just says " his bones hurt way down deep " . His pediatrician,feels he

> will outgrow this,but that it will most likely go to every joint.My

> question is this,,,has anyone heard of reactive arthritis,,also he is

> currently on naprosyn,,but he is soooo bruised up.He went off the

> naprosyn for 2 weeks and the bruises went away,but now he is back on

> it and he looks like he has been beaten.Has anyone else experienced

> this? I'm sorry this is so long,but I don't have anyone else to talk

> to.Thanks,

> Kim,,Logan 4 & 1/2

>

>

>

>

>

>

[Guest guest]

Val,

Thanks for the post. Logan has had these symptoms for almost 8 months

now,,so I really don't think it is reactive. When we start thinking back,,we

can think of a few times when he was 2 that he would drag his leg behind him.

The only way I would think it could be reactive arthritis,is if you can keep

getting it over and over.I don't know,,he has his 5 year check up next month

so we'll see.

Thanks,

Kim & Logan 4 & 1/2

[Guest guest]

Hi Kim,

We can still hope that it is reactive. If reactive is triggered by something

viral - and flares in JRA can be triggered by something viral it does kind of

make it hard to see the difference. Maybe some kids are more prone to reactive

arthritis when they get a virus or infection just like some kids are more prone

to getting ear infections. It could be that the difference is in how it is

treated (antibiotics?) - and how quickly the symptoms can go away - perhaps the

difference is in the fact that long term meds aren't needed? Who knows? Just

thinking out loud (or should I say on keyboard?) My son has a kidney disorder

that can be triggered by a virus or bacterial infection, a bee sting or

immunization (did anyone tell you that reactive arthritis can be triggered by an

immunization - I just remembered that) - and his nephrologist told me that I

should get Robbie seen at the first sign of any illness - because should it

require antibiotics - the sooner he is treated the less likely he is to have a

flare of the kidney problem. Strangely enough, the steriods he has been on for

the last year is probably why he hasn't had any flare of the kidney problem.

One of his Doc's said something about " secondary gain " of the medication - I

can't type what I thought You will find - if you haven't already that

most of us have a love/hate relationship with the steriods and other meds that

our babies are on. I hate what the steriods have done to him in the last year -

but they relieved his symptoms and changed him from a lethargic child unable to

move and in pain if you touched him to a happy, active four year old. All in

all, I guess the steriods and other meds are a blessing.

Whew, here I go rambling again - good luck with your appt for Logan. We wish

you the best.

Val

Rob's Mom (4,systemic)

In a message dated Tue, 25 Jun 2002 12:59:05 AM Eastern Standard Time,

berlydawn4kids writes:

>

>

> Val,

> Thanks for the post. Logan has had these symptoms for almost 8 months

> now,,so I really don't think it is reactive. When we start thinking back,,we

> can think of a few times when he was 2 that he would drag his leg behind him.

> The only way I would think it could be reactive arthritis,is if you can keep

> getting it over and over.I don't know,,he has his 5 year check up next month

> so we'll see.

> Thanks,

> Kim & Logan 4 & 1/2

>

>

>

[Guest guest]

In a message dated 9/23/02 3:40:58 PM, kamilleon@... writes:

<< I am currently on doxycycline for 14 days and then more bloodwork. >>

Kami-

If you are on doxy, then are going for more blood work, the test will more

than likely NOT be positive. You are killing the spirochetes, antibodies are

not being produced, that is what the Western blot blood test is testing for!

One should be drug-free (including Advil, etc) for a minimum of 6 wks. before

doing a blood test for lyme.

14 days is not going to touch this infection either. The borrelia bacteria

appears in the blood approx. 1x/month and that is the time the antibiotics

(abx) can kill it. Other than that, they hide in your fibrous tissues, bones,

tendons, etc. What if you take the doxy for the 14 days they are hiding?? You

missed them.

Do you need help finding a lyme-literate dr.?? I have lists of them. Let me

know. I also probably know of people to help you in your area.

sue in nj

sue massie

[Guest guest]

Dear Kristi,

I am so glad you found our group, welcome. My name is Ruth and I

was diagnosed with Autoimmune Hepatitis is March so I don't know how

much I can help you. I know there are some in the group who have had

successful pregnancies with AIH. I would recommend Palmer's

book, " Hepatitis Liver Disease What You Need To Know. " It is about

$15 at Amazon.com. I was diagnosed with M.S. when our son was a year

old, so I think it is fairly common for autoimmune diseases to show

up after having a baby. The encouraging thing I want to tell you is

that predisone and immuran can dramatically help the liver function

improve. Predisone is not fun, but it is a wonderful medication for

us, because it can stop the disease from getting worse, they are even

now saying that some of the damage to the liver could be reversible.

You have found a very caring group here, they are like family and we

really pull for each other, that is so important when you first get

diagnosed because everything is so scary and new. Harper, Jerry,

and quite a few others know a lot more than I do and are very

kind about answering questions. Please write if you need someone to

talk to.

Ruth

> My name is Kristi, and I am a 24 year old new mom (my son is 10

mos.

> old). About four years ago I was diagnosed with Lupus (SLE), which

> is also an autoimmune disorder. I have been on prednisone (10 mg

> every other day) for 3 years now, and my blood tests by my

> rheumatoligist showed elevated liver enzymes after my son was

born.

> To make a long story short, I recently got results of the liver

> biopsy back, which diagnosed me with autoimmune hepatitis and also

> said " moderate fibrosis " . I don't have another appointment with

the

> gastro-doctor for another 4 weeks, so I've bee researching as much

> as I can. My questions for anybody is mostly about the " moderate

> fibrosis " . Does anybody know if this is a fast progression of

liver

> damage, or if it is normal for people diagnosed with AIH? Also,

> does anybody know anything about pregnancy and AIH? I would like

to

> have more children, but am worried if I will be able to. Thanks a

> lot-- this is all new to me.

[Guest guest]

Hi!

Welcome to our group, this is a good place to hear about what others have experienced with their AIH. I also have SLE and many folks have more than one autoimmune illness. I'm not good at the pregnancy question but others will be, though I know there are several who have had babies and have AIH. Did you do well with the SLE and pregnancy?

It's too bad that you go the diagnosis but don't get to see a GI for awhile. It's hard to wait for the information. One thing to find out is how familiar they are with AIH - some are and some aren't. I assume since they are taking you as a patient that they have had experience with it.

My AIH has been moving slowly. It can often be kept under control with meds, prednisone being a primary one. Keep in touch and let us know how you are doing!

Amy

[Guest guest]

Hi Ruth,

Thanks a lot for the reply. It's funny, before I got the message, I

went out and bought Palmer's book yesterday. I've already

read much of it and have learned a lot. You can only find out so

much from a book though. That's why I think this group will be

helpful-- To talk to other REAL PEOPLE who are in the same boat.

Thanks a lot again-- Kristi

> > My name is Kristi, and I am a 24 year old new mom (my son is 10

> mos.

> > old). About four years ago I was diagnosed with Lupus (SLE),

which

> > is also an autoimmune disorder. I have been on prednisone (10

mg

> > every other day) for 3 years now, and my blood tests by my

> > rheumatoligist showed elevated liver enzymes after my son was

> born.

> > To make a long story short, I recently got results of the liver

> > biopsy back, which diagnosed me with autoimmune hepatitis and

also

> > said " moderate fibrosis " . I don't have another appointment with

> the

> > gastro-doctor for another 4 weeks, so I've bee researching as

much

> > as I can. My questions for anybody is mostly about

the " moderate

> > fibrosis " . Does anybody know if this is a fast progression of

> liver

> > damage, or if it is normal for people diagnosed with AIH? Also,

> > does anybody know anything about pregnancy and AIH? I would

like

> to

> > have more children, but am worried if I will be able to. Thanks

a

> > lot-- this is all new to me.

[Guest guest]

-Hey

Thanks for the welcome. To answer your question, I did just fine

with the SLE and pregnancy. I of course was classified as high

risk, so I got about 7 ultrasounds and had to go to the doctor very

often, but I was happy getting better care. I was on prednisone

throughout the pregnancy for joint inflammation. I'm hoping that

the same will occur for AIH in the future, but it's a whole other

story. I'll keep in touch

Kristi

-- In @y..., holzboog@a... wrote:

> Hi!

> Welcome to our group, this is a good place to hear about what

others

> have experienced with their AIH. I also have SLE and many folks

have more

> than one autoimmune illness. I'm not good at the pregnancy

question but

> others will be, though I know there are several who have had

babies and have

> AIH. Did you do well with the SLE and pregnancy?

> It's too bad that you go the diagnosis but don't get to see a

GI for

> awhile. It's hard to wait for the information. One thing to find

out is how

> familiar they are with AIH - some are and some aren't. I assume

since they

> are taking you as a patient that they have had experience with it.

> My AIH has been moving slowly. It can often be kept under

control with

> meds, prednisone being a primary one. Keep in touch and let us

know how you

> are doing!

>

> Amy