Newly Diagnosed

[Guest guest]

> I read somewhere that during the herx effect it is good to take a 10 " hot

bath

> with epson salts then add 3 bottles of hydrogen peroxide, supposedly in

the

> hope of getting some of the poisons out through the skin. Have you tried

this

> or do you know if it will help? S

Both Dr. and Dr. Stuart Weg recommend these baths. I've just

put up Dr. Weg's protocol on our web page and will be posting it to the

group shortly. Look at www.rheumatic.org/martin.htm and

www.rheumatic.org/weg.htm for details.

> Since I am really not *sick* yet, I am kind of scared about how sick I

might

> get at the beginning of the treatment and how it might feel. Can you fill

me

> in on that a little?

What are your options? You can wait until the disease has taken hold more

and then face the same problem. Or you can start now and have a much better

chance of getting the disease under control quickly. The herxheimer

reaction is usually increased joint pain, depression, slight fever. It is

evidence that the antibiotics are getting to the infection. About 20% of

people don't experience this reaction anyway.

> How much acidopholous? Will it prevent the yeast infections? Would it

help to

> douche with it as well? (Gosh, I hope you are a woman, now that I

asked

You need about 5 billion organisms every day - look at the container and

get the sort with as many live cultures as possible. It will keep your gut

flora in good working order so that any non-desirable organisms, such as

yeast, can't get a hold. Dr. Weg recommends douching with acidophilus in

the protocol that he has just given us. Yes, I'm a woman

> Thank you for the dosages -- they are the same no matter if it is

Doxycycline

> or Minocycline?

Doxycycline and minocycline are taken at the same doses.

> Then I will need to know about maintenance dosages and retesting and

> remedicating, etc. It is very complicated and individual I know.

Perhaps it's a good idea not to worry about that at the moment. Just get

started and then we can help you as you go along.

Chris.

[Guest guest]

Then I will need to know about maintenance dosages and retesting and

> remedicating, etc. It is very complicated and individual I know.

Perhaps it's a good idea not to worry about that at the moment. Just get

started and then we can help you as you go along.

Chris.

Gee ever since I found out about AP I've been mentally writing the

post I plan to send to the ng esp to Harvey for giving me such a hard

time about going with AP and not going to aRD said I was in denial and

should realize i was sick and take MTX. Writing that is what got me

thru my start up herk

cadlard@... wrote:

>

> From: cadlard@...

>

> > I read somewhere that during the herx effect it is good to take a 10 " hot

> bath

> > with epson salts then add 3 bottles of hydrogen peroxide, supposedly in

> the

> > hope of getting some of the poisons out through the skin. Have you tried

> this

> > or do you know if it will help? S

> Both Dr. and Dr. Stuart Weg recommend these baths. I've just

> put up Dr. Weg's protocol on our web page and will be posting it to the

> group shortly. Look at www.rheumatic.org/martin.htm and

> www.rheumatic.org/weg.htm for details.

>

> > Since I am really not *sick* yet, I am kind of scared about how sick I

> might

> > get at the beginning of the treatment and how it might feel. Can you fill

> me

> > in on that a little?

>

> What are your options? You can wait until the disease has taken hold more

> and then face the same problem. Or you can start now and have a much better

> chance of getting the disease under control quickly. The herxheimer

> reaction is usually increased joint pain, depression, slight fever. It is

> evidence that the antibiotics are getting to the infection. About 20% of

> people don't experience this reaction anyway.

>

> > How much acidopholous? Will it prevent the yeast infections? Would it

> help to

> > douche with it as well? (Gosh, I hope you are a woman, now that I

> asked

> You need about 5 billion organisms every day - look at the container and

> get the sort with as many live cultures as possible. It will keep your gut

> flora in good working order so that any non-desirable organisms, such as

> yeast, can't get a hold. Dr. Weg recommends douching with acidophilus in

> the protocol that he has just given us. Yes, I'm a woman

> > Thank you for the dosages -- they are the same no matter if it is

> Doxycycline

> > or Minocycline?

>

> Doxycycline and minocycline are taken at the same doses.

>

> > Then I will need to know about maintenance dosages and retesting and

> > remedicating, etc. It is very complicated and individual I know.

> Perhaps it's a good idea not to worry about that at the moment. Just get

> started and then we can help you as you go along.

>

> Chris.

>

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

> Have you visited the new ONElist home page lately?

> http://www.ONElist.com

> ONElist: The Leading e-mail list and community service on the Internet!

[Guest guest]

Kate -

You can get some good repositioning tips at

plagiocephaly.org/support.

Your daughter is young enough that you can still get good results

from repositioning. I would suggest taking weekly pictures over the

next month (from all angles including the top of the head). If your

daughter has hair, make sure to wet it before taking a pic.

We repositioned Dane from 2-4 months. We did see good improvement,

but then it stagnated and he had a lot of facial asymmetry that we

didn't feel comfortable chancing would stay. So, we opted for a DOC

Band. He is completely round now after 12 weeks of treatment. He

was moderate at the beginning of treatment.

You actually are a bit lucky that your dr. even noticed the plagio.

A lot of parents weren't even that lucky!

Dane's mom DOC Grad

> This is my first post and have JUST found out our 3 month old

daugther

> has positional plagiocephaly... so please bear with any repeat

questions

> and babbling. []

>

> After noticing at 2 months of age that our daughter's head was

flattened

> on one side we did what we could to encourage her to use the other

side

> of head on our own. At 2.5 months we realized we didn't know

enough so

> we headed to our doctor. He diagnosed Paige with torticollis and

> referred us to physiotherapy and to a pediatrician. We went

through two

> weeks of physio (stretches and repositioning techniques) befoe

getting

> in to see the pediatrician.

>

> After a very short examination he said Paige did not have

toriticollis

> (full range of motion, no tightness)but positional plagiocephaly.

I

> must have gasped because he said, " It's not as bad as it seems! "

He

> described what the condition was and how I can repostion her at

home to

> reduce the amount of time she spends on the right side of her

head. It

> was agreed that we would return to the pediatrician in 4 weeks

time to

> check her progress.

>

> Once I got home and DH was able to take the baby for awhile I

jumped

> online to find information about positional plagiocephaly and was

> astounded at serious the condition can be. I left the doctor's

office

> confident we'd have a round headed baby in no time. Now I'm scared

out

> of my wits. What does it mean her head might never round out

> " normally " ? How could I have not noticed her flat spot earlier?

>

> We are prepared to tackle this repositioning challenge head on...

but

> I'm still scared. In four weeks we will return to the

pediatrician and

> " go from there. " The pediatrician seems quite laid back about the

whole

> situation, I almost feel he's not treating the problem seriously

enough.

> Should we press for something more during our next visit?

>

> I'm hoping this group can offer the information and support I need.

>

> Thanks for listening,

> Kate

[Guest guest]

Hi Kate & welcome to our group!

You are doing everything correctly Your daughter is still plenty

young enough to get correction with repositioning alone yet....check

out http://www.plagiocephaly.org/support then click " repositioning

ideas " for some great tips. Would you say Paige's plagio is pretty

severe? I know you probably have no idea what to compare her head

to, but.....

Now about the torticollis issue...tort. is one of the leading causes

of plagio....do you feel Paige has full range of motion now? You

mentioned your ped. took a quick look at her & said she didn't have

tort but plagio..

My daughter did not have tort., and she was impossible to keep off

her flat side of her head. Her plagio was severe, so whenever we

laid her on her back, her head would immediately roll over to the

flat side.

In one month at your next Dr. appt., IF Paige's head has not rounded

some with your repositioning attempts, then definitely be persistent

with your Dr. about getting some more attention. You might also ask

to be referred to a pediatric neurosurgeon for an evaluation of

Paige's head shape - this is very very common with our plagio

babies. Ped. Neuros are usually way backed up with their schedules

too, so if you are uneasy with all this, you might want to consider

calling your ped. tomorrow to request a referral to a specialist.

They frequently have at least a month waiting period. Just a thought!

Again, welcome again! Best of luck with your repositioning

attempts. PLEASE keep us updated!

Debbie Abby's mom DOCGrad

MI

> This is my first post and have JUST found out our 3 month old

daugther

> has positional plagiocephaly... so please bear with any repeat

questions

> and babbling. []

>

> After noticing at 2 months of age that our daughter's head was

flattened

> on one side we did what we could to encourage her to use the other

side

> of head on our own. At 2.5 months we realized we didn't know

enough so

> we headed to our doctor. He diagnosed Paige with torticollis and

> referred us to physiotherapy and to a pediatrician. We went

through two

> weeks of physio (stretches and repositioning techniques) befoe

getting

> in to see the pediatrician.

>

> After a very short examination he said Paige did not have

toriticollis

> (full range of motion, no tightness)but positional plagiocephaly.

I

> must have gasped because he said, " It's not as bad as it seems! "

He

> described what the condition was and how I can repostion her at

home to

> reduce the amount of time she spends on the right side of her

head. It

> was agreed that we would return to the pediatrician in 4 weeks time

to

> check her progress.

>

> Once I got home and DH was able to take the baby for awhile I

jumped

> online to find information about positional plagiocephaly and was

> astounded at serious the condition can be. I left the doctor's

office

> confident we'd have a round headed baby in no time. Now I'm scared

out

> of my wits. What does it mean her head might never round out

> " normally " ? How could I have not noticed her flat spot earlier?

>

> We are prepared to tackle this repositioning challenge head on...

but

> I'm still scared. In four weeks we will return to the pediatrician

and

> " go from there. " The pediatrician seems quite laid back about the

whole

> situation, I almost feel he's not treating the problem seriously

enough.

> Should we press for something more during our next visit?

>

> I'm hoping this group can offer the information and support I need.

>

> Thanks for listening,

> Kate

[Guest guest]

Kate:

It is true that repositioning does not work for ALL babies. It

didn't work for my daughter, but her case was considered severe. All

babies are different and depends on the severity of the case.

I hope some of our active repositioners will offer their own

personal experience as well as what's worked for them and what

hasn't.

Please don't be totally discouraged though. Repositioning can be very

frustrating and cumbersome, but if your child's head rounds becuz of

it, it is needless to say worth every ounce of effort you put into it.

Keep plugging away at it. Also, PLEASE keep us posted on your

progress.

Best of luck.

Debbie Abby's mom DOCGrad

MI

p.s....There are some good repositioning products listed in

our " bookmarks " section, then the " repositioning folder " . Check that

out if you haven't already.

> Our three month old daughter has been diagnosed with positional

> plagiocephaly. We've been given a whole range of repositional

techniques

> to use, and then in a month we go back for reassesment.

>

> My research online says repositioning is rarely really successful,

which

> is frustrating and a little scary.

>

> How has repositioning worked for you? Are any strategies more

effective

> than others?

>

> TIA,

> Kate

[Guest guest]

Hi Kate and welcome. First I should say please try not to worry too much.

While plagio should not be taken lightly the good news is that it is

completey treatable with NON-invasive techniques. You have caught the plagio

at such a young age that repositioning could be very effective. Check out

www.plagiocephaly.org/support for some tips on repositioning. You might also

try increasing tummy time and limiting time in the swing, bouncy chair and

car seat.

The one thing that concerned me about your ped's comments it that she said

your baby has plagio NOT tort. In all truth tort and plagio often exist side

by side. Have you seen the physio yet? What does he/she say?

I think that aggressively repositioning for 4 weeks and then going back in

for a re-check is very appropriate. Take some photos of your daughter now so

you have something to compare her head shape to in a month. If you don't see

some noticable improvement then you should go back to the ped prepared to

discuss the POSSIBILITY of a helmet or band. You have some time to work with

since you have caught this so early. Everything is going to work out just

fine for your daughter - just keep on top of it and continue to be proactive.

Good luck and keep us posted!

Marci (Mom to )

Oklahoma

[Guest guest]

Hi Kate -

I sure do hate for you to get the idea that repositioning rarely works. I'm

glad you have been given all sorts of repositioning techniques to try. Your

baby is so young that repositioning could be very effective. Does your baby

have tort as well? If you don't know for sure you should ask your dr about it

specifically. If your baby has tort you will need to do some stretches are

seek the help of a physical therapist to get that resolved.

Repositioning has been a very effective tool for many in this group. I hope

that some of them will speak up and help you address your concerns. Take a

bunch of pictures now so that in a month you have something to compare the

progress to. If you don't see noticable improvement in a months time you

might want to press the dr for some other options.

Best wishes and please keep us posted.

Marci (Mom to )

Oklahoma

[Guest guest]

Hi, your daughter is still young enough that

repositioning may be successful. If it doesn't look

like it's working within one or two months, I'd

consider a headband. Ages 4 to 5 months are great

ages to start helmet/headband therapy for optimal

correction. My daughter got her DOC band at 5 months.

She's been in it for 1 1/2 mos and her little head is

almost completely round now. She was diagnosed as

having moderate plagio on the right side of her head.

Repositioning didn't work with her because she has

torticollis, a tightening of the neck muscle, so she

was kind of stuck tilting her head to the left side.

The PT at home is making a big difference. Good luck

and keep us posted.

, 's mom

Southern California

--- Kate <jrfrenzy@...> wrote:

> Our three month old daughter has been diagnosed with

> positional

> plagiocephaly. We've been given a whole range of

> repositional techniques

> to use, and then in a month we go back for

> reassesment.

>

> My research online says repositioning is rarely

> really successful, which

> is frustrating and a little scary.

>

> How has repositioning worked for you? Are any

> strategies more effective

> than others?

>

> TIA,

> Kate

>

>

__________________________________________________

[Guest guest]

Hi Judy...welcome to our group. I am on methotrexate (also Remicade)

which I take by injection. The pills did not agree with my tummy at

all. My liver panels are sometimes a bit high, sometimes not. I'm not

familiar with your other med, though I know some group members are.

I know this is a difficult road, and the diagnosis can be a real shock.

We are here to help each other, and Judy you can count on that.

With Hope....

Tess

[Guest guest]

Hi Judy:

Welcome to the group! Yes, I remember well how it

felt to be diagnosed with RA - my heart dropped. My

grandmother had RA and she was pretty much crippled by

it and all I could see in my mind was myself in the

same situation. Luckily for me, the drugs we have

nowadays are so much better than the limited

medication that had been available to her, and our

future is much brighter. RA is not a death sentence

and you don't necessarily develop deformities or

become severely limited in your activities. Things do

change, that's for sure, but each individual

experiences the disease differently. At this time, I

have constant low grade pain in my joints and the ever

present fatigue, but all in all my life has not

changed too drastically. Some things had to be given

up, many activies are much harder to do, and I need to

ask for help more, but I consider myself one of the

lucky ones in having only moderately aggressive RA.

I was diagnosed 3 years ago and was initially placed

on Plaquenil - it has the no side effects that I know

of on the liver - one the the rare RA meds that don't

have this problem -and it worked well for me, in

combination with Motrin, for almost 2 1/2 years. With

Plaquenil you need to have regular funduscopic eye

exams to check on any retinal damage, which is a very

rare side effect, about ever 6 months. It usually

takes around 4 months to 6 months for the Plaquenil to

kick in and help you. It took about 4 months for me

to feel any difference and I was also on Prednisone to

help me until it did. I am on MTX and Arava now, both

of which are hard on the liver; you should try to

avoid any medication that can cause increased liver

enzymes if you can due to your already having liver

problems. It's hard because it seems that most

everything prescribed for RA affects the liver

adversely! Hope this helps -

Kathe in CA

__________________________________________________

[Guest guest]

Welcome, Judy!

I'm very sorry about your RA diagnosis, but I hope you can find warm

support and useful information here.

We have many members who have used methotrexate and hydroxychloroquine

(Plaquenil) successfully. I hope you and your doctor can decide on safe,

effective treatment for you.

[ ] Newly diagnosed

> Hello listers,

>

> My name is Judy and although RA was suspected by my Orthopedic doctor,

I

> got the news from the Rheumatologist this morning that it is. I'm

sure

> everyone remembers when they first heard that news and how it made you

> feel.

>

> My Rheumatologist gave me two pamphlets on drugs that he wants me to

read

> over so we can discuss treatment when I go back next month. In the

> meantime, I have to have a hand xray, pick up my foot xray and copies

of

> all of my labs, etc. The drugs I am reading about are

Hydroxychloroquine

> and Methotrexate. Can anyone tell my anything about your experience

with

> these drugs? I'm pretty sure I won't be able to take the

Methotrexate,

> because it can have an affect on the liver and I am already having

> problems with my liver.

>

> Thanks for listening.

>

> Judy

[Guest guest]

Hi Judy,

Welcome to the group. You will definitely find a lot of great advice

and information, as well as many cyber-shoulders to lean on as

needed. I am 39 and have been diagnosed with Still's Disease and RA,

along with a few others.

I remember well when I was first diagnosed with RA. After a Gallium

scan my rheumatologist told me my wrists were lit up like a Christmas

tree.

I took Methotrexate for a short time but had to quit because of some

bad side effects like loopiness and the damage it did to my liver. I

also had to stop taking Arava.

I know there are many hear who are taking these medications and

having good results.

Anyway, welcome again.

Al in IL

> Hello listers,

>

> My name is Judy and although RA was suspected by my Orthopedic

doctor, I

> got the news from the Rheumatologist this morning that it is. I'm

sure

> everyone remembers when they first heard that news and how it made

you

> feel.

>

> My Rheumatologist gave me two pamphlets on drugs that he wants me

to read

> over so we can discuss treatment when I go back next month. In the

> meantime, I have to have a hand xray, pick up my foot xray and

copies of

> all of my labs, etc. The drugs I am reading about are

Hydroxychloroquine

> and Methotrexate. Can anyone tell my anything about your

experience with

> these drugs? I'm pretty sure I won't be able to take the

Methotrexate,

> because it can have an affect on the liver and I am already having

> problems with my liver.

>

> Thanks for listening.

>

> Judy

>

> ________________________________________________________________

> GET INTERNET ACCESS FROM JUNO!

> Juno offers FREE or PREMIUM Internet access for less!

> Join Juno today! For your FREE software, visit:

> http://dl.www.juno.com/get/web/.

[Guest guest]

Hi ,

Thanks for the welcome. I feel right at home already. This list is

super. I sent one message and got so much care back in return. I'll be

around for a long time (God willing) and I know I will need everyone's

input during that time. I will also be very glad to give my support to

others as well. I am learning a lot regarding the meds already.

Judy

> Welcome, Judy!

>

> I'm very sorry about your RA diagnosis, but I hope you can find

> warm

> support and useful information here.

>

> We have many members who have used methotrexate and

> hydroxychloroquine

> (Plaquenil) successfully. I hope you and your doctor can decide on

> safe,

> effective treatment for you.

>

>

>

>

>

> [ ] Newly diagnosed

>

>

> > Hello listers,

> >

> > My name is Judy and although RA was suspected by my Orthopedic

> doctor,

> I

> > got the news from the Rheumatologist this morning that it is.

> I'm

> sure

> > everyone remembers when they first heard that news and how it made

> you

> > feel.

> >

> > My Rheumatologist gave me two pamphlets on drugs that he wants me

> to

> read

> > over so we can discuss treatment when I go back next month. In

> the

> > meantime, I have to have a hand xray, pick up my foot xray and

> copies

> of

> > all of my labs, etc. The drugs I am reading about are

> Hydroxychloroquine

> > and Methotrexate. Can anyone tell my anything about your

> experience

> with

> > these drugs? I'm pretty sure I won't be able to take the

> Methotrexate,

> > because it can have an affect on the liver and I am already

> having

> > problems with my liver.

> >

> > Thanks for listening.

> >

> > Judy

>

>

>

[Guest guest]

Hi Tess,

Thanks! I've been hearing about Remicade, what is it and how is it

administered?

Judy

> Hi Judy...welcome to our group. I am on methotrexate (also

> Remicade) which I take by injection. The pills did not agree with my

tummy

> at all. My liver panels are sometimes a bit high, sometimes not. I'm

> not familiar with your other med, though I know some group members are.

>

> I know this is a difficult road, and the diagnosis can be a real shock.

> We are here to help each other, and Judy you can count on that.

>

> With Hope....

>

> Tess

________________________________________________________________

GET INTERNET ACCESS FROM JUNO!

Juno offers FREE or PREMIUM Internet access for less!

Join Juno today! For your FREE software, visit:

http://dl.www.juno.com/get/web/.

[Guest guest]

Hi Kathe,

You mentioned your grandmother had RA and that reminded me that the

Rheumatologist asked if anyone in my family had it. I told him I didn't

think so. I don't think my grandparents had it and I know my mother

didn't. I don't like the idea of being the first in the family to have

it. It makes me feel awful to have to tell my children that this can be

heredity. As if RA isn't enough, now I have this guilt too. You're

right that we are better off today than any generation before us due to

the advancements made in the medical world. I am just wondering about my

future, a future I can't do much about, other than go to doctors and take

meds, and hope for the best.

Judy

> Hi Judy:

>

> Welcome to the group! Yes, I remember well how it

> felt to be diagnosed with RA - my heart dropped. My

> grandmother had RA and she was pretty much crippled by

> it and all I could see in my mind was myself in the

> same situation. Luckily for me, the drugs we have

> nowadays are so much better than the limited

> medication that had been available to her, and our

> future is much brighter. RA is not a death sentence

> and you don't necessarily develop deformities or

> become severely limited in your activities. Things do

> change, that's for sure, but each individual

> experiences the disease differently. At this time, I

> have constant low grade pain in my joints and the ever

> present fatigue, but all in all my life has not

> changed too drastically. Some things had to be given

> up, many activies are much harder to do, and I need to

> ask for help more, but I consider myself one of the

> lucky ones in having only moderately aggressive RA.

>

> I was diagnosed 3 years ago and was initially placed

> on Plaquenil - it has the no side effects that I know

> of on the liver - one the the rare RA meds that don't

> have this problem -and it worked well for me, in

> combination with Motrin, for almost 2 1/2 years. With

> Plaquenil you need to have regular funduscopic eye

> exams to check on any retinal damage, which is a very

> rare side effect, about ever 6 months. It usually

> takes around 4 months to 6 months for the Plaquenil to

> kick in and help you. It took about 4 months for me

> to feel any difference and I was also on Prednisone to

> help me until it did. I am on MTX and Arava now, both

> of which are hard on the liver; you should try to

> avoid any medication that can cause increased liver

> enzymes if you can due to your already having liver

> problems. It's hard because it seems that most

> everything prescribed for RA affects the liver

> adversely! Hope this helps -

>

> Kathe in CA

________________________________________________________________

GET INTERNET ACCESS FROM JUNO!

Juno offers FREE or PREMIUM Internet access for less!

Join Juno today! For your FREE software, visit:

http://dl.www.juno.com/get/web/.

[Guest guest]

Hi Al,

Thanks for the welcome. This group has really come to my aid. Do you

mind if I ask what Still's Disease is? And what is a Gallium Scan? What

are you taking now?

Judy - in FL

> Welcome to the group. You will definitely find a lot of great advice

> and information, as well as many cyber-shoulders to lean on as

> needed. I am 39 and have been diagnosed with Still's Disease and RA,

> along with a few others.

> I remember well when I was first diagnosed with RA. After a Gallium

> scan my rheumatologist told me my wrists were lit up like a Christmas

> tree.

> I took Methotrexate for a short time but had to quit because of some

> bad side effects like loopiness and the damage it did to my liver. I

> also had to stop taking Arava.

> I know there are many hear who are taking these medications and having

good results.

> Anyway, welcome again.

> Al in IL

>

>

>

> > Hello listers,

> >

> > My name is Judy and although RA was suspected by my Orthopedic

> doctor, I

> > got the news from the Rheumatologist this morning that it is. I'm

>

> sure

> > everyone remembers when they first heard that news and how it made

>

> you

> > feel.

> >

> > My Rheumatologist gave me two pamphlets on drugs that he wants me

>

> to read

> > over so we can discuss treatment when I go back next month. In

> the

> > meantime, I have to have a hand xray, pick up my foot xray and

> copies of

> > all of my labs, etc. The drugs I am reading about are

> Hydroxychloroquine

> > and Methotrexate. Can anyone tell my anything about your

> experience with

> > these drugs? I'm pretty sure I won't be able to take the

> Methotrexate,

> > because it can have an affect on the liver and I am already

> having

> > problems with my liver.

> >

> > Thanks for listening.

> >

> > Judy

> >

> > ________________________________________________________________

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[Guest guest]

Hi Judy...Remicade is a biologic administered through IV about once

every 2 months, after the basic loading doses. It worked wonderfully

for me in the beginning...now it seems to 'lose steam' after 5 or 6

weeks. I have my infusion tomorrow, so will talk to the MA about it.

With Hope...

Tess

[Guest guest]

Dear Judy, Look through your family for other

immunicalogical diseases such a diabetes, 's

Disease, FM, etc. You will usually find that they

cluster in families and are not always the same one.

They don't sound as though they go together but they

are all classified as immune system disfunction. Let

me know...I am interested. Iris

--- J-J-W@... wrote:

> Hi Kathe,

>

> You mentioned your grandmother had RA and that

> reminded me that the

> Rheumatologist asked if anyone in my family had it.

> I told him I didn't

> think so. I don't think my grandparents had it and

> I know my mother

> didn't. I don't like the idea of being the first in

> the family to have

> it. It makes me feel awful to have to tell my

> children that this can be

> heredity. As if RA isn't enough, now I have this

> guilt too. You're

> right that we are better off today than any

> generation before us due to

> the advancements made in the medical world. I am

> just wondering about my

> future, a future I can't do much about, other than

> go to doctors and take

> meds, and hope for the best.

>

> Judy

>

> > Hi Judy:

> >

> > Welcome to the group! Yes, I remember well how it

> > felt to be diagnosed with RA - my heart dropped.

> My

> > grandmother had RA and she was pretty much

> crippled by

> > it and all I could see in my mind was myself in

> the

> > same situation. Luckily for me, the drugs we have

> > nowadays are so much better than the limited

> > medication that had been available to her, and our

> > future is much brighter. RA is not a death

> sentence

> > and you don't necessarily develop deformities or

> > become severely limited in your activities.

> Things do

> > change, that's for sure, but each individual

> > experiences the disease differently. At this

> time, I

> > have constant low grade pain in my joints and the

> ever

> > present fatigue, but all in all my life has not

> > changed too drastically. Some things had to be

> given

> > up, many activies are much harder to do, and I

> need to

> > ask for help more, but I consider myself one of

> the

> > lucky ones in having only moderately aggressive

> RA.

> >

> > I was diagnosed 3 years ago and was initially

> placed

> > on Plaquenil - it has the no side effects that I

> know

> > of on the liver - one the the rare RA meds that

> don't

> > have this problem -and it worked well for me, in

> > combination with Motrin, for almost 2 1/2 years.

> With

> > Plaquenil you need to have regular funduscopic eye

> > exams to check on any retinal damage, which is a

> very

> > rare side effect, about ever 6 months. It usually

> > takes around 4 months to 6 months for the

> Plaquenil to

> > kick in and help you. It took about 4 months for

> me

> > to feel any difference and I was also on

> Prednisone to

> > help me until it did. I am on MTX and Arava now,

> both

> > of which are hard on the liver; you should try to

> > avoid any medication that can cause increased

> liver

> > enzymes if you can due to your already having

> liver

> > problems. It's hard because it seems that most

> > everything prescribed for RA affects the liver

> > adversely! Hope this helps -

> >

> > Kathe in CA

>

>

________________________________________________________________

> GET INTERNET ACCESS FROM JUNO!

> Juno offers FREE or PREMIUM Internet access for

> less!

> Join Juno today! For your FREE software, visit:

> http://dl.www.juno.com/get/web/.

>

>

__________________________________________________

[Guest guest]

Hi Judy,

No, I don't mind at all. Adult Onset Still's Disease is a form of

juvenile rheumatoid arthritis that is extremely rare in adults and

even more rare in adult males.

It's symptoms include malaise, arthritic like feeling throughout the

body, spiking fevers that occur at night (103+), only to return to

normal in the morning, night sweats, lymphnode swelling, and severe

headaches. I would be completely incapacitated for about a week and

used to have these flares every month or so for over a year and a

half. I would take a prednisone dose pack and augmenten and the

symptoms would completely stop, including the arthritis until the

next flare.

A Gallium scan is given to detect all inflammation throughout the

body. It's a radioactive isotope and the needle is encased in lead

with hazardous warning stickers on it. Very intimidating.

At first my rheumy thought I may have lymphoma and the scan would

have shown it. The Gallium tends to go where the inflammation

is. " Luckily " , I only had Still's.

A couple of year's ago, I had another flare that was not as intense.

When all the symptoms left, the symmtrical arthritis stayed and never

left. I also had all the classic ACR symptoms like fatigue, inflammed

joints in my wrists and hands, pain stiffness in the morning, etc.

After another gallium scan was done, I was diagnosed with RA in

addition.

Geeze, I am ranting on here. Sorry. I am currently on Enbrel but have

tried many other drugs that either didn't work or had a negative

affect on my liver. I do take prednisone via dose pack for bad flarev

ups.

Take care, Judy.

Al in IL

[Guest guest]

Hi Judy:

Yes, it is frustrating - the whole disease and the

medications used to treat it are frustrating. RA

might be hereditary, might be caused by a virus, might

be caused by many things - science still does not know

for sure. My grandmother had RA, her two brothers had

some type of immune system disease (don't know exactly

what), and my father has Raynaud's. I also have

Raynaud's with the RA. I worry about my future, and

I, too, worry about the future of my kids - everytime

they complain of an ache or pain in their joints I

worry. I hope and pray they do not get this disease,

but if they do, I also feel that by that time there

might be a cure for RA which would be wonderful.

They are coming up with new medications and treatments

and there is a lot of hope for controlling RA in the

future. Keep positive and I hope that you obtain

relief with whatever medication your doctor

prescribes.

Kathe in CA

__________________________________________________

[Guest guest]

Hi Iris,

One of my grandfather's had Diabetes, I think. At least I seem to

remember someone saying that once. That's as close as I can get. I do

genealogy research on my family and I haven't seen Diabetes in the family

of 's. There could have been FM, but it wasn't until the mid-80's

that they even had the name of FM for this syndrome.

Judy

> Dear Judy, Look through your family for other

> immunicalogical diseases such a diabetes, 's

> Disease, FM, etc. You will usually find that they

> cluster in families and are not always the same one.

> They don't sound as though they go together but they

> are all classified as immune system disfunction. Let

> me know...I am interested. Iris

>

> --- J-J-W@... wrote:

> > Hi Kathe,

> >

> > You mentioned your grandmother had RA and that

> > reminded me that the

> > Rheumatologist asked if anyone in my family had it.

> > I told him I didn't

> > think so. I don't think my grandparents had it and

> > I know my mother

> > didn't. I don't like the idea of being the first in

> > the family to have

> > it. It makes me feel awful to have to tell my

> > children that this can be

> > heredity. As if RA isn't enough, now I have this

> > guilt too. You're

> > right that we are better off today than any

> > generation before us due to

> > the advancements made in the medical world. I am

> > just wondering about my

> > future, a future I can't do much about, other than

> > go to doctors and take

> > meds, and hope for the best.

> >

> > Judy

> >

> > > Hi Judy:

> > >

> > > Welcome to the group! Yes, I remember well how it

> > > felt to be diagnosed with RA - my heart dropped.

> > My

> > > grandmother had RA and she was pretty much

> > crippled by

> > > it and all I could see in my mind was myself in

> > the

> > > same situation. Luckily for me, the drugs we have

> > > nowadays are so much better than the limited

> > > medication that had been available to her, and our

> > > future is much brighter. RA is not a death

> > sentence

> > > and you don't necessarily develop deformities or

> > > become severely limited in your activities.

> > Things do

> > > change, that's for sure, but each individual

> > > experiences the disease differently. At this

> > time, I

> > > have constant low grade pain in my joints and the

> > ever

> > > present fatigue, but all in all my life has not

> > > changed too drastically. Some things had to be

> > given

> > > up, many activies are much harder to do, and I

> > need to

> > > ask for help more, but I consider myself one of

> > the

> > > lucky ones in having only moderately aggressive

> > RA.

> > >

> > > I was diagnosed 3 years ago and was initially

> > placed

> > > on Plaquenil - it has the no side effects that I

> > know

> > > of on the liver - one the the rare RA meds that

> > don't

> > > have this problem -and it worked well for me, in

> > > combination with Motrin, for almost 2 1/2 years.

> > With

> > > Plaquenil you need to have regular funduscopic eye

> > > exams to check on any retinal damage, which is a

> > very

> > > rare side effect, about ever 6 months. It usually

> > > takes around 4 months to 6 months for the

> > Plaquenil to

> > > kick in and help you. It took about 4 months for

> > me

> > > to feel any difference and I was also on

> > Prednisone to

> > > help me until it did. I am on MTX and Arava now,

> > both

> > > of which are hard on the liver; you should try to

> > > avoid any medication that can cause increased

> > liver

> > > enzymes if you can due to your already having

> > liver

> > > problems. It's hard because it seems that most

> > > everything prescribed for RA affects the liver

> > > adversely! Hope this helps -

> > >

> > > Kathe in CA

> >

> >

> ________________________________________________________________

> > GET INTERNET ACCESS FROM JUNO!

> > Juno offers FREE or PREMIUM Internet access for

> > less!

> > Join Juno today! For your FREE software, visit:

> > http://dl.www.juno.com/get/web/.

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

Hi Tess,

It sounds very involved, but I know I would do it if it stopped the pain.

Another question from a newbie. What is an MA?

Judy

> Hi Judy...Remicade is a biologic administered through IV about once

> every 2 months, after the basic loading doses. It worked

> wonderfully

> for me in the beginning...now it seems to 'lose steam' after 5 or 6

> weeks. I have my infusion tomorrow, so will talk to the MA about

> it.

>

> With Hope...

>

> Tess

>

>

>

[Guest guest]

Hi Al,

Weren't you the lucky one to get something so rare. And I bet you can't

win the lottery. Seriously though, you have really been through the

mill. I guess all of you have and now I am. It's great to have a list

where we can have so many people to listen to us and send support.

Please don't apologize, and you're not ranting. This is our place for

sharing what we are going through and I know everyone will agree that we

are all here for each other.

Judy - FL

> Hi Judy,

>

> No, I don't mind at all. Adult Onset Still's Disease is a form of

> juvenile rheumatoid arthritis that is extremely rare in adults and

> even more rare in adult males.

>

> It's symptoms include malaise, arthritic like feeling throughout the

>

> body, spiking fevers that occur at night (103+), only to return to

> normal in the morning, night sweats, lymphnode swelling, and severe

>

> headaches. I would be completely incapacitated for about a week and

>

> used to have these flares every month or so for over a year and a

> half. I would take a prednisone dose pack and augmenten and the

> symptoms would completely stop, including the arthritis until the

> next flare.

>

> A Gallium scan is given to detect all inflammation throughout the

> body. It's a radioactive isotope and the needle is encased in lead

> with hazardous warning stickers on it. Very intimidating.

>

> At first my rheumy thought I may have lymphoma and the scan would

> have shown it. The Gallium tends to go where the inflammation

> is. " Luckily " , I only had Still's.

>

> A couple of year's ago, I had another flare that was not as intense.

>

> When all the symptoms left, the symmtrical arthritis stayed and

> never

> left. I also had all the classic ACR symptoms like fatigue,

> inflammed

> joints in my wrists and hands, pain stiffness in the morning, etc.

>

> After another gallium scan was done, I was diagnosed with RA in

> addition.

>

> Geeze, I am ranting on here. Sorry. I am currently on Enbrel but

> have

> tried many other drugs that either didn't work or had a negative

> affect on my liver. I do take prednisone via dose pack for bad

> flarev

> ups.

>

> Take care, Judy.

>

> Al in IL

>

>

>

>

>

[Guest guest]

Hi Kathe,

You're right. The future of our children is a lot brighter than for us,

but it's brighter for us than it was for generations before. The

Arthritis Foundation is doing many good things, I'm told, so we can hold

out hope. I just wish they could come up with drugs without such side

effects.

Trying to stay positive,

Judy - FL

> Hi Judy:

>

> Yes, it is frustrating - the whole disease and the

> medications used to treat it are frustrating. RA

> might be hereditary, might be caused by a virus, might

> be caused by many things - science still does not know

> for sure. My grandmother had RA, her two brothers had

> some type of immune system disease (don't know exactly

> what), and my father has Raynaud's. I also have

> Raynaud's with the RA. I worry about my future, and

> I, too, worry about the future of my kids - everytime

> they complain of an ache or pain in their joints I

> worry. I hope and pray they do not get this disease,

> but if they do, I also feel that by that time there

> might be a cure for RA which would be wonderful.

> They are coming up with new medications and treatments

> and there is a lot of hope for controlling RA in the

> future. Keep positive and I hope that you obtain

> relief with whatever medication your doctor

> prescribes.

>

> Kathe in CA

>

> __________________________________________________

>

[Guest guest]

Hi Judy...MA is Medical Assistant. Mine is a young fellow named Bruce,

who is excellent at hs job. He learned his trade in the Navy, and

usually has no problems with my IV.

Love...

Tess