Newly diagnosed

[Guest guest]

[This message contained attachments]

[Guest guest]

I also experience extreme fatigue and am unclear whether that is an effect of

the MTX or the disease or a combination of the two. >>

*******

My guess would be a combination of the two. When my PA was in full flare, I

was constantly absolutely exhausted. When the MTX started taking effect, the

exhaustion eased up, EXCEPT the day or two after I took MTX. On those days

the MTX was making me tired, but I would accept that downer for the benefits

over the remainder of the week. Now that I've been taking MTX for several

months, I'm not nearly as tired after taking it as I used to be. I only feel

really fatigued after I take a newly increased dosage.

Patty

[Guest guest]

what has your experience been with pain control realizing that pain is

extremely subjective? What has worked best for you?****

I have used Oxycontin when necessary. I like it because it's long acting

(12-hour dosing), so it doesn't give me that cyclic pain relief feeling. I

also don't get " stoned " when I take it, which is a plus with my 3 year old

running around. :-)

Patty

[Guest guest]

However.the docs have told me unfortunately with so few joints involved

although severe; MTX may not be effective. Has anyone experienced this same

phenomenon (?sp)?******

My PA started in my right knee (synovectomy 4/99) and has since progressed to

my right index finger and wrist. I am also taking MTX (now up to 17.5

mg/week), but I would say generally my PA has responded to the MTX. So,

based on my experience, I don't think PA is necessarily more severe, or MTX

less effective, when fewer joints are impacted. One thing I have found from

the reading I've done over the past few months is each individual's disease

can be completely different from the next person's disease, and sometimes it

can change on a dime.

Patty

[Guest guest]

Hi Patty,

Did you have a total synovectomy in your right knee or a partial? Was it

open or via a scope? And did you see improvement in the joint post-op? How

long a recovery period was it? I have had two partial synovectomies on my

left knee without improvement and am going to have an open total synovectomy,

originally scheduled for this Thursday but I have delayed it until the

following week.

Cilla

[Guest guest]

> From: Suzie Hodge <vshwrites@...>

>

> This week I finally have a label to why I can't seem

> to get well. Yeast.

>

> I'm obviously new to this list and have enjoyed

> reading everyones posting.

>

> I feel hopeful just knowing what is going on. Now for

> the cure...

Well ,

I hope I can help by giving you the address to the site where I found the

cure for me. I take olive leaf extract from East Park Research Inc. The

product is called d-LENOLATE and is very effective against candida as well

as a host of other ills. I get mine from www.otrecure.com

In Health,

[Guest guest]

In a message dated 2/29/00 9:12:18 AM Pacific Standard Time,

sharron@... writes:

<< I have recently been diagnosed as having Hyperthyroidism. Having seen a

specialist endocrinologist, he wants to start me on a couse of

Carbimazole. Reading about this drug it seems to be quite risky.

I'm really interested in anyone who has or is taking this drug at the

moment, and any information on alternative therapies available. >>

Hi Sharron,

I'm as drug-phobic as anyone probably could be. I stay away from them at

all costs. Carbimazole, or methimazole as it is also known, does carry some

warnings, but it generally seems reasonably safe for short term use. If you

can get along without it, that is preferable, but if you need it to control

dangerous heart rate, then take it. Calcium/magnesium in a 1:1 ratio can

also be used to control symptoms.

In the U.S. most people are taking Tapazole which is a brand name for

carbimazole or PTU (proplythiouracil). Methimazole is listed as an

antioxidant and generally seems better than PTU, but there may be not much

difference between the two.

I enrolled you as a member of the group and you can look in the archives

for the Supplement List. If you have trouble finding it, let me know and

I'll send it out again.

[Guest guest]

dear sharon ,i was recently diagnosed and like you started on the carbemazole

(the pref treatment here in the uk) all i can say is watch your doses im sure

its because my gp didnt know what he was doing , i started on 15mg a day a

week later he put it up to 30 then 2 weeks later up to60 i went hypo sick

hives terrible trapped wind mind fog , i couldent talk went to bed at7. ive

never been so ill ive come of all meds now and am waiting to see the

specialist my gp said i was allergic to the meds and would have to have the

rai but we will see, ive managed to bring my pulse rate down my self through

yoga and relexation and im going to acupuncture soon . olso my doc forgot to

tell me that carbemozloe in 1 percent of patience acts as a bone marrow

suppresent so you have to go for a blood test if you get a sore throat or

mouth ulser .good job ilooked at the med info. im sure your endo is much

better informed. a lot of people ive spoken to here had no problem with the

meds .good luck .where are you from ? im from brighton ruth.

[Guest guest]

Dear Sharon,

I am presently using a combination of of mullein and lobelia which I've

read should heal my thyroid and any other glands in my body that are

malfunctioning over a six month period. I use it internally and externally

I am suspecting a chronic candida infection may be what initiated my

body's auto immune system. So I am taking cloves,cinnamon and black walnut

for this. ( I must use the black walnut, one month off and one month on)

For others it might be a bacterial or viral infection- in that case

dandelion/burdock tea for about 6 months may be helpful for these people.

When I get a hyper symptom I take 5-7 1000mg. calcium/magnesium tabls

(with no Vit. D or zinc in it). My symptoms will disappear in about 1 hour,

but I get really achy (probably the excess calcium gets deposited in my

joints.) Cabbage or other high sulfur foods will relieve those symptoms the

next day.

I must stay away from all caffeine, even a very small amount will get me

hyper for about 12 hours. Soybeans help balance my hormonal levels.

I used to take progesterone cream (from Health food store) and it

relieve some of the achiness, mood swings, etc. but I realized I was just

treating more symptoms. (When your body is destroying your thyroid it is

often destroying your progesterone and other hormones as well.)

The mullein/lobelia mix seems to be doing as much for my mood swings as

the progesterone did, and it is in the process of healing my body as well.

Mullein is a soft large leaf plant that grows wild in many parts of the

country. It is a very thick, soft and large leaf, that can be seen in early

spring. It grows about 4-6 feet supporting a large stalk with yellow

flowers along the top foot of that stalk. the flowers and leaves are used

for medicine. We used to call it " toilet paper plant " because it is so soft

and " usuable " in emergencies, unlike most any other leaf on plants.

Lobelia Inflata is the strongest variety of lobelia and is an annual

that grows well in most any home garden.

Of course dandelion is well know, burdock is a little less known, but if

you walk in the woods and have burrs the size of a marble attached to you,

you have discovered burdock. The plant grows to about 6 feet with huge

leaves. When it starts, it looks like rhubarb, but the stalks are a " dirty

white " instead of red. The root, and burrs are the strongest part of the

plant but you can use the leaves as well.

Cloves and cinnamon and best purchased at a health food store that sells

bulk herbs, but I must admit I had some really old cloves, some old black

walnut hulls (you're supposed to use them green, but I goofed and let them

turn black, so there's barely any medicine in it) and yet I am already

getting relief from my years of chronic problems. I have also added raw

pumpkin seeds to the mix. I just grow alot of these in my garden and use

the seeds to keep my dogs and cats from getting parasites, and me from

fungus.

Hope this helps,

Le Ann

[Guest guest]

Dear Le Ann,

I also have been taking progesterone cream from the health food store, and

its does relieve the achiness. However, I find that after a while it does

not work. My acupuncturist said that after a while one's receptors become

saturated, and you have to stop taking it for a while. I have stopped for a

few months, and the achiness has returned. The herbs that you recommend

instead--how do you take them, and where do you find them? How much do you

take? How do you know all of this stuff--is it trial and error, training,

stuff you read about? You seem to have an amazing knowledge about herbs.

I'm often afraid to try them, because of possible side effects, so I usually

start w/a low dose. But I also don't have a good knowledge base. It seems

like there are millions of herbs out there--how does one know where to begin?

Thanks in advance for any answers to these queries.

AntJoan

[Guest guest]

hahahaa Edie then what's the use of knowing your PCR? Sheesh. I want to know

EVERYTHING. All those factors help me decide whether to DO treatment or

not. Thwap that doc!

Oh and btw.. nice to meet ya! I'm a 44 yr old married hepper grammy in

Dallas Texas area. I've known about my hep since 89. My pcr is 1.3mill and

I'm a 1b. Biopsy forthcoming in May.... and if it is mild, I won't be doing

treatment right away.

Oh and Edie.... when was the last time we CURED a virus? Yes we have

vaccines... but no virus that I know if has ever been cured by humankind.

Don't mean to be a downer but dose just da facts! Polio, malaria, chicken

pox, measles, mumps, etc. They are still around and yes, scientists are

learning a heck of a lot really fast nowadays yet we haven't cured one of

them yet.... yet. Once you got em, you got em.

alley/

ICQ 12631861

alleypat@...

http://www.flash.net/~alleypat

[Guest guest]

Dear , My daughter, n age 11, also has systemic JRA. It began

last November with a daily rash that appeared in the evening, and fevers at

the same time. It first struck n's hands, but eventually it hit her

whole body, and she couldn't walk or get out of bed. I am surprised that if

your daughter has had this for so long, that they are just trying to control

it with naprosyn. n was on naprosyn for about a month, but when the

rash and fevers didn't get under control, we had to move to

steroids(prednisone) and plaquenil. She tapered down on the steroids, (and

by the way her fever left within 2 days of starting the steroids) , and she

is now on 2mg a day. We are trying to keep her under control with the

plaquenil, as it is a lesser toxic drug than methotrexate, which is the next

step up. Some doctors consider methotrexate a miracle drug, and it can be

for some, but there are side effects. One has to weigh the side effects of

the drugs with the destruction of the disease. I think we have to try to

get our children in remission (if that is possible) with the least amount of

drugs, but that is the hard part. No one responds equally to the

medication. You just have to find the right drug cocktail for your child.

Are you seeing a pediatric rheumatologist? Good luck.

P.S. Systemic JRA, or Still's disease as it is sometimes called, can effect

any organ in the body. n's liver, lymph nodes, and spleen were

enlarged. I know it can inflame the lungs and heart as well. I don't know

about the kidneys, but if it can inflame all of the other organs, the

kidneys seem reasonable areas of attack. Stay with this group and ask all

the questions you need. We have all been there. Georgina is a wealth of

information on systemic JRA, as Josh has had it for 5 years.

>From: snoozy@...

>Reply- egroups

> egroups

>Subject: newly diagnosed

>Date: Sun, 30 Jul 2000 18:45:26 -0000

>

>The doctor said my daughter has sytemic jra. I don't know what it is

>called beyond that. She has it in her hips, rt. knee and both hands.

>Her hands are the worst She has nodules on the insides of her

>fingers. She has had fevers every few days since she was 1mth old and

>they get up to 107 at times. Are kidney problems assoc. with this?

>She had grade 5 vesicoureteral reflux that was repaired surgically

>but the swelling in her kidneys hasnt gone down after almost 3

>years.The doctor said they do't know why the kidneys are still

>swollen, they shouldnt be. Thank you to everyone who has resonded to

>my letters. We are just full of questions.

>God Bless,

>

>

>

>

>

>For links to websites with JRA info visit:

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

>

________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

[Guest guest]

Welcome, Newly Diagnosed,

You're right. If your TSH was 15, it does sound more like hypothyroidism.

There are some rare instances like pituitary and extremely rare ovarian

tumors that secrete TSH so that could be a cause, but probably not given the

symptoms that you mention. The RAI uptake and scan would show if you had

nodules but it seems there would be easier ways to go about diagnosing you

without subjecting you to radioiodine, even if it is a low dose.

[Guest guest]

Hi Chris

I am in remission about one year. One thing I would have done if I

had to go back is have the antibodies checked. www.ithyroid.com

site has the name of the tests.

Eileen

[Guest guest]

Hi to the Unknown,

You ask, " Can I live with this disease? " The answer is an

emphatically, YES! Most everyone on this list has some form of AIH or other

liver problem. Some for a very long time, some who have had a transplant

and some who are waiting. There will be times you don't feel very well, but

you'll live through it. There really is a light at the end of the tunnel.

Stay happy. Stay informed, but don't worry...let the doctors worry for you.

You don't need negative thoughts or worries. It would be nice if you would

tell us your first name and then it would be a more personal

reply,please...Carolyn Stay happy!

[ ] Newly Diagnosed

> I just found out I have autoimmune hepatits and I'm still in shock.

> I'm scheduled for a liver biopsy in 2 weeks to determine the stage of

> the disease. I am scared to death. Can I live with this disease? What

> can I expect?

>

>

>

>

[Guest guest]

You will have alot of suppert here. Ask any question and myself or someone else

will share our experience.Or try to answer your question

Heidi

> egroups

>From: bderbyshire@...

>Date: Sun, 05 Nov 2000 17:36:10 -0000

>Reply- egroups

>Subject: [ ] Newly Diagnosed

>

>I just found out I have autoimmune hepatits and I'm still in shock.

>I'm scheduled for a liver biopsy in 2 weeks to determine the stage of

>the disease. I am scared to death. Can I live with this disease? What

>can I expect?

>

>

>

>

[Guest guest]

Dear Barbara,

Some people have bad experiences with liver biopsies, and some people say

they are not too bad; I am in that group.

With both of my biopsies, the anticipation was the worst part. I had a

skilled radiologist who did both procedures the first ususing CT scan and the

second one three weeks later using ultrasound. Both times I asked for a

sedative before the procedure. This helped TREMENDOUSLY. They gave me

Versed. Then, they topically numbed the spot and after that they numbed

deeper. I could feel both, but neither was very painful. The actual biopsy

is done in a split second. I felt pressure rather than pain. I felt like I

got myself worked up for something that wasn't that bad.

I don't want to minimize the experience, because not everybody gets through

it as easily as I did. But, plenty of people do say " it wasn't bad " .

Goodluck, and welcome to our nice little group. We are here to help you.

[Guest guest]

Thank you Heidi

I am curious about the biopsy. Mine is in 10 days. The procedure

sounds awful & they say I am to be awake for it. Then the wait for

the results is 2 weeks. That will be difficult.

Barbara

> You will have alot of suppert here. Ask any question and myself or

someone else will share our experience.Or try to answer your question

> Heidi

> > egroups

> >From: bderbyshire@h...

> >Date: Sun, 05 Nov 2000 17:36:10 -0000

> >Reply- egroups

> >Subject: [ ] Newly Diagnosed

> >

> >I just found out I have autoimmune hepatits and I'm still in

shock.

> >I'm scheduled for a liver biopsy in 2 weeks to determine the stage

of

> >the disease. I am scared to death. Can I live with this disease?

What

> >can I expect?

> >

> >

> >

> >

[Guest guest]

Hello Carolyn

You are right about posting my name. I corrected that after my first

message.

Thank you for your response. I am feeling rather lost right now -

trying to cope with the news of this diagnosis. I have tried to read

what I could, but don't understand it all quite yet.

I am trying not to worry, but I guess it's unavoidable at this point.

I have noticed my side aches when I'm under stress, and not at other

times. Is this common?

I would like to hear about your experience with AIH, if you would

like to share it - either here or at bderbyshire@....

Thanks again for your support.

Barbara

> Hi to the Unknown,

> You ask, " Can I live with this disease? " The answer is an

> emphatically, YES! Most everyone on this list has some form of AIH

or other

> liver problem. Some for a very long time, some who have had a

transplant

> and some who are waiting. There will be times you don't feel very

well, but

> you'll live through it. There really is a light at the end of the

tunnel.

> Stay happy. Stay informed, but don't worry...let the doctors worry

for you.

> You don't need negative thoughts or worries. It would be nice if

you would

> tell us your first name and then it would be a more personal

> reply,please...Carolyn Stay happy!

> [ ] Newly Diagnosed

>

>

> > I just found out I have autoimmune hepatits and I'm still in

shock.

> > I'm scheduled for a liver biopsy in 2 weeks to determine the

stage of

> > the disease. I am scared to death. Can I live with this disease?

What

> > can I expect?

> >

> >

> >

> >

[Guest guest]

Barbara

I had a liver biopsy and i will not lie to you it was not fun. But i have also

talkes to alot of others from this group and they said they had no problem. At

the time that I had it I was very sick. I had already been in the hospital for

about 5 days. And i was in isolation because my white count was in the danger

zone. I do not go to the gastro that did my biopsy anymore because he treated me

like I had a cold. I would go for check-up and he would not even lay a hand on

me. The DR. that I go to now is great he really cares and if I run into big

problems I have a DR. in Pittsburgh that I go to.If you havr any more questions

feel free to ask.

P.S. the biopsy only takes about 30 seconds.

Heidi

> egroups

>From: " Barbara Derbyshire " <bderbyshire@...>

>Date: Sun, 05 Nov 2000 21:19:52 -0000

>Reply- egroups

>Subject: [ ] Re: Newly Diagnosed

>

>Thank you Heidi

>

>I am curious about the biopsy. Mine is in 10 days. The procedure

>sounds awful & they say I am to be awake for it. Then the wait for

>the results is 2 weeks. That will be difficult.

>

>Barbara

>

>

>

>

>> You will have alot of suppert here. Ask any question and myself or

>someone else will share our experience.Or try to answer your question

>> Heidi

>> > egroups

>> >From: bderbyshire@h...

>> >Date: Sun, 05 Nov 2000 17:36:10 -0000

>> >Reply- egroups

>> >Subject: [ ] Newly Diagnosed

>> >

>> >I just found out I have autoimmune hepatits and I'm still in

>shock.

>> >I'm scheduled for a liver biopsy in 2 weeks to determine the stage

>of

>> >the disease. I am scared to death. Can I live with this disease?

>What

>> >can I expect?

>> >

>> >

>> >

>> >

[Guest guest]

Hi Heidi

I appreciate the info and am sorry you had such a rough go of it with

your biopsy and you former doctor. Having the right doctor is so

important, isn't it? I'm not sure I like the the gastro who

diagnosed me either. After my biopsy results are in, I plan to seek a

second opinion. And I want to hear the results from my gp before I

talk to the gastro about anything. Good for you for getting yourself

a better md.

How are you feeling now?

Barbara

> >> You will have alot of suppert here. Ask any question and myself

or

> >someone else will share our experience.Or try to answer your

question

> >> Heidi

> >> > egroups

> >> >From: bderbyshire@h...

> >> >Date: Sun, 05 Nov 2000 17:36:10 -0000

> >> >Reply- egroups

> >> >Subject: [ ] Newly Diagnosed

> >> >

> >> >I just found out I have autoimmune hepatits and I'm still in

> >shock.

> >> >I'm scheduled for a liver biopsy in 2 weeks to determine the

stage

> >of

> >> >the disease. I am scared to death. Can I live with this

disease?

> >What

> >> >can I expect?

> >> >

> >> >

> >> >

> >> >

[Guest guest]

Hi

Thank you for the reassurance - and your words of welcome. Hopefully

mine won't be so bad. At any rate, it will be over with quickly. And

I will insist upon the sedative.

You're right. This is a nice litte group!

Barbara

> Dear Barbara,

> Some people have bad experiences with liver biopsies, and some

people say

> they are not too bad; I am in that group.

> With both of my biopsies, the anticipation was the worst part. I

had a

> skilled radiologist who did both procedures the first ususing CT

scan and the

> second one three weeks later using ultrasound. Both times I asked

for a

> sedative before the procedure. This helped TREMENDOUSLY. They

gave me

> Versed. Then, they topically numbed the spot and after that they

numbed

> deeper. I could feel both, but neither was very painful. The

actual biopsy

> is done in a split second. I felt pressure rather than pain. I

felt like I

> got myself worked up for something that wasn't that bad.

>

> I don't want to minimize the experience, because not everybody gets

through

> it as easily as I did. But, plenty of people do say " it wasn't

bad " .

>

> Goodluck, and welcome to our nice little group. We are here to

help you.

>

[Guest guest]

Barbara...... I`m one of those whose experience with biopsies is similar

to `s..... I`ve had 4 of them and since I have no real memory of

the 1st one I didn`t anticipate the other`s and they all went quickly

with little or no pain.... I agree with ...... anticipating

anything is always worse than the actual fact...think positive thoughts

and all wil be well..

Jerry

[Guest guest]

Hello Barbara,

Welcome here. Try not to worry to much. For some people here, including

myself stress causes increased side aches. So try not to worry to much, but

ask your doctor as much as you can... so you will understand everything that

is happening to you. Also here in this group there is so much knowledge!

(Sometimes I believe the people here know much more than our doctors)

I hope your biopsi goes well and that the outcome is good.

Take good care!

Loes, AIH, The Netherlands

[ ] Newly Diagnosed

> >

> >

> > > I just found out I have autoimmune hepatits and I'm still in

> shock.

> > > I'm scheduled for a liver biopsy in 2 weeks to determine the

> stage of

> > > the disease. I am scared to death. Can I live with this disease?

> What

> > > can I expect?

> > >

> > >

> > >

> > >

[Guest guest]

Barbra

I had all of that happen in March of 99. and after put on pred. and imuran

everything was ok. Tapered off the pred. and then off Imuran but after adout 3

months I had another flare up that was about a month ago so now im back on both

meds again and i hate the pred. but I know I must take it.Aside from the side

effects I feel pretty good and my liver functions are slowly returning to

normal. Thanks for asking

Heidi

> egroups

>From: " Barbara Derbyshire " <bderbyshire@...>

>Date: Mon, 06 Nov 2000 01:03:04 -0000

>Reply- egroups

>Subject: [ ] Re: Newly Diagnosed

>

>Hi Heidi

>

>I appreciate the info and am sorry you had such a rough go of it with

>your biopsy and you former doctor. Having the right doctor is so

>important, isn't it? I'm not sure I like the the gastro who

>diagnosed me either. After my biopsy results are in, I plan to seek a

>second opinion. And I want to hear the results from my gp before I

>talk to the gastro about anything. Good for you for getting yourself

>a better md.

>

>How are you feeling now?

>

>Barbara

>

>

>

>> >> You will have alot of suppert here. Ask any question and myself

>or

>> >someone else will share our experience.Or try to answer your

>question

>> >> Heidi

>> >> > egroups

>> >> >From: bderbyshire@h...

>> >> >Date: Sun, 05 Nov 2000 17:36:10 -0000

>> >> >Reply- egroups

>> >> >Subject: [ ] Newly Diagnosed

>> >> >

>> >> >I just found out I have autoimmune hepatits and I'm still in

>> >shock.

>> >> >I'm scheduled for a liver biopsy in 2 weeks to determine the

>stage

>> >of

>> >> >the disease. I am scared to death. Can I live with this

>disease?

>> >What

>> >> >can I expect?

>> >> >

>> >> >

>> >> >

>> >> >