Re: advice for new member

Posted April 4, 2008 · April 4, 2008

Hi Trish- Welcome to the public side of the forum.. hehe I can't imagine how hard it is for parents to make decisions regarding medication and their small children however from my side of things as someone with Arthritis and other health issues. I know the information out there is very scary on these different medications however the disease too is scary!! I think sometimes people see the drug side effects because they are much more publusized than the effects of JRA. For some people, especialy kids with Poly and with positive Rheumatoid Factor are especialy vulnerable to joint damage at levels that aren't always visible immediately.

Of course, there is always risk... .I suppose it comes down to being able to way the risks versus the benefits and it's ahrd to take the chance but if the disease is still active after all of this time and not responding well enough to MTX, than the added help of Embrel or other drugs like that can really make a huge positve difference. I've seen some absolutely amazing improvements with the use of Embrel but on the other hand, there are always those it doesn't work for or worse yet, causes worse side effects/reactions.

All I can say is that the disease can be really sucky especialy as it continues to be active over time and the sooner it can be stopped, the better.....

Good fortune.

Issadora

On Thu, Apr 3, 2008 at 6:16 PM, pasqulena777 <pasqulena777@...> wrote:

Hi Group,I joined the group about two months ago but never posted a profile, I have just been reading through all the posts and I feel connected to you all in some way--and comforted--so thank you all.

Now let me introduce us.I am Trish and my daughter, , was diagnosed 1-1/2 years ago with polyarticular arthritis. When she was first diagnosed the joints effected were both ankles, both wrists, two knuckles in her

right hand, two toe joints in her left foot and her right knee. has been on MTX from the very beginning, she has also had the injections into her most severely effected joints. The joint injections do wonders for about 3-4 months and then it wears off.

's Pediatric Rheumatologist wants to start her on Enbrel injections (and continue the MTX). We have had to delay doing this because of insurance problems which are now resolved. We have an appointment on April 9th and I am sure she will want to proceed

then. I have read some posts about Enbrel, but I am really afraid to put her on this medicine. I have read up on it and know you can have great results but the side effects can be pretty severe and scary too. I would greatly appreciate any feedback I can get.

Thank you,Trish ( 11, Polyarticular) -- " Life- Like the flutter of wings... feel your hollow wings rushing... " (AFI- Silver and Cold).

my Flight in life is a metamorphosis of growth and this flutter of wings is within me awaiting to find a space to find it's flow...

Posted April 4, 2008 · April 4, 2008

Trish, My daughter is 9, and just started embrel around 6 weeks ago. I have to say that it has done wonders for her. I give her the injections 2X a week, and she takes her mtx as well. We are seeing far better results with the Embrel, then we did with naproxen and mtx alone. My daughter said, she is no longer struggling at p.e., and that she can do all the things that the other kids can do. The doctor was impressed with her progess as well. she had 12 joints effects when we started Embrel. she still has 12 now, but the swelling has gone down drastically, and she has better range of motion. The doctor told us that by next month, we

will start reducing the mtx slowly, to eventually get her off of it. Right now, she takes 7 pills 1X a week. Also, by next christmas, she said she would be off of the mtx, and down to only 1 shot a week, which makes us all really happy.

I have to say that I personally hate needles, and thought I could never ever give my daughter a shot in her arm, without passing out myself. I am still pretty nervous about it, but I feel more confident knowing that me over coming my fear has made drastic stides in her success.

you can check out www.embrel.com

or www.enlivenservices.com i stumbled across this website, as I was doing research myself. They have great info on embrel, and a great staff that you can call and ask questions and such. They will also send you a free sharps container, to put the needles in.

I hope that helps you some. Please feel free to email me off site, if you would feel more comfortable with that.

Helen

Advice for New Member

Hi Group,I joined the group about two months ago but never posted a profile, I have just been reading through all the posts and I feel connected to you all in some way--and comforted--so thank you all.Now let me introduce us.I am Trish and my daughter, , was diagnosed 1-1/2 years ago with polyarticular arthritis. When she was first diagnosed the joints effected were both ankles, both wrists, two knuckles in her right hand, two toe joints in her left foot and her right knee. has been on MTX from the very beginning, she has also had the injections into her most severely effected joints. The joint injections do wonders for about 3-4 months and then it wears off. 's Pediatric Rheumatologist wants to start her on Enbrel injections (and continue the MTX). We have had to delay doing this because of insurance problems which are now resolved. We have an appointment on April 9th

and I am sure she will want to proceed then. I have read some posts about Enbrel, but I am really afraid to put her on this medicine. I have read up on it and know you can have great results but the side effects can be pretty severe and scary too. I would greatly appreciate any feedback I can get.Thank you,Trish ( 11, Polyarticular)

You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost.

Posted April 4, 2008 · April 4, 2008

Welcome to the group :-) My son was on Enbrel for well over a year

and had no major side effects. We have since moved to Kineret, as

Enbrel was helping, but not quite enough. Giving the shots is not

easy. Some clinics will give the shots for you, but that does mean

frequent visits, even if they don't charge.

Misty & (9, systemic)

>

> Hi Group,

>

> I joined the group about two months ago but never posted a profile,

> I have just been reading through all the posts and I feel connected

> to you all in some way--and comforted--so thank you all.

> Now let me introduce us.

> I am Trish and my daughter, , was diagnosed 1-1/2 years ago

> with polyarticular arthritis. When she was first diagnosed the

> joints effected were both ankles, both wrists, two knuckles in her

> right hand, two toe joints in her left foot and her right knee.

> has been on MTX from the very beginning, she has also had

the

> injections into her most severely effected joints. The joint

> injections do wonders for about 3-4 months and then it wears off.

> 's Pediatric Rheumatologist wants to start her on Enbrel

> injections (and continue the MTX). We have had to delay doing this

> because of insurance problems which are now resolved. We have an

> appointment on April 9th and I am sure she will want to proceed

> then. I have read some posts about Enbrel, but I am really afraid

> to put her on this medicine. I have read up on it and know you can

> have great results but the side effects can be pretty severe and

> scary too. I would greatly appreciate any feedback I can get.

>

> Thank you,

> Trish ( 11, Polyarticular)

>

Posted September 30, 2008 · September 30, 2008

Welcome ,

I am a massage therapist also. I was diagnosed with RA when I was about 3/4 of

the way through school. Cruel joke I thought. But I am doing very well. I

believe I caught it early and started on Plaquenil right away after my first

rheumatologist appointment. Before I was able to see the rheumatologist I went

on an elimination diet which took the inflammation away within a week. Some

people find this helpful, some don't. The meds generally take a while to work.

I have taken motrin for the inflammation in my hands but have only needed that a

couple of times. I was having a lot of shoulder pain which nothing seemed to

touch until I went to an acupuncturist. That really helped with that. Not sure

if that was RA pain or not.

Hashimoto's disease is an autoimmune disorder also. They said if you have one

chances are you'll develop another. I have Sjogren's syndrome in addition to

the RA.

Hope this helps. Good luck with you rheumatology appointment. Have you tried

anti inflammatories? Are you taking any vitamin or herbal supplements?

[ ] advice for new member

Hi, I'm a new member. I haven't officially been diagnosed with RA, but

I meet with my rheumy on Thursday. She ran all sorts of blood tests

and xrays. Meanwhile, she took me off Celebrex (i am allergic to sulfa

drugs) and put me on prednisone. Prednisone is doing nothing for me

but make my hands and feet swell, so I called to see if there was

something else. Her nurse called me right back and said the doctor

wanted to see me ASAP, so I'm not sure what that means. I am a

professional massage therapist and I have Hashimotos hypothyroid. I

thought my problems were thyroid related but my endo sent me to a

rheumatologist after my third bout of bursitis in a month, each at a

different joint. I tested negative for RA at the GP office, but the

pain has gotten worse and has spread to other joints. I thought

perhaps I was doing something wrong to my body, so I bought a new

table, put a mirror in so I could see my posture, bought special shoes--

nothing has helped. I pray this isn't going to end my career because I

love what I do. What are my medication options? My GP had given me

Celebrex and hydrocodiene. Nothing is touching this pain--including

massages. Heat helps a little. I lie on my hot stones in between

clients! This is all new to me so..help!

In Tn.

Posted October 1, 2008 · October 1, 2008

Hi and welcome to the group. I will be interested to hear what

your Rheumy has to say when you go in tomorrow. I have learned that a

lot of people (myself included) have a negative RA test, but that does

not mean that you don't have RA. As far as the meds go, there are a

whole bunch of them and finding the right combination of meds that

will work for you is the key. It sounds like you have a very

pro-active Rheumy and that will also be extremely helpful in getting

you to a point where you are hopefully functioning normally again.

May God Bless you and welcome to the group.........Doreen

--- In , " ldydewinter04 " <ldydewinter@...>

wrote:

>

> Hi, I'm a new member. I haven't officially been diagnosed with RA,

> but I meet with my rheumy on Thursday. She ran all sorts of blood

> tests and xrays. Meanwhile, she took me off Celebrex (i am allergic

> to sulfa drugs) and put me on prednisone. Prednisone is doing

> nothing for me but make my hands and feet swell, so I called to see

> if there was something else. Her nurse called me right back and

> said the doctor wanted to see me ASAP, so I'm not sure what that

> means. I am a professional massage therapist and I have Hashimotos

> hypothyroid. I thought my problems were thyroid related but my

> endo sent me to a rheumatologist after my third bout of bursitis in

> a month, each at a different joint. I tested negative for RA at

> the GP office, but the pain has gotten worse and has spread to

> other joints. I thought perhaps I was doing something wrong to my

> body, so I bought a new table, put a mirror in so I could see my

> posture, bought special shoes--nothing has helped. I pray this

> isn't going to end my career because I love what I do. What are my

> medication options? My GP had given me Celebrex and hydrocodiene.

> Nothing is touching this pain--including massages. Heat helps a

> little. I lie on my hot stones in between clients! This is all

> new to me so..help!

> In Tn.

>

Posted October 1, 2008 · October 1, 2008

Thanks, ! I am so relieved to find another MT here and hear you are

doing well. I switched careers about 4 years ago and would be devastated to

find I had made the wrong choice! This whole situation has been shaken up.

I know there must be a reason I'm experiencing this, but that's little

comfort at the moment.

I went on the elimination diet (Gluten, dairy) last May and stayed on it

through July. Honestly, I could not tell a difference. Caffeine seems to

be my trigger and I adore coffee/tea. :-( I take adrenal support

supplements, lots of vitamins B and C, omega 3, and idoral as supplements.

These are more for the thyroid though. What are good RA supplements? The

only anti inflammatory I'm on is the prednisone, and it is not doing

anything for me. OTC stuff isn't touching the pain either. I'm usually

such an easy case. I can take one aspirin for whatever and be cured. Now

I'm popping two hydrocodene at a time this morning! That would usually make

me throw up. I am an 80% vegetarian, meaning I eat meat maybe twice a week.

I'm allergic to salmon and pink fish though. I see an acupuncturist for my

thyroid so I imagine I'll tell her my diagnosis re: RA the next visit.

I'm going to try to get into my RA at day early. I woke up this morning

around 2 am. My entire right shoulder/arm/rib cage is inflamed and

extremely painful. It's spread since this early morning. I'm hoping it's

not cellulitis or lymphitis on top of whatever else it is. I'm totally

depressed because I am missing work-again. If I don't work, I don't' get

paid and my clients are assigned to someone else.

G. in Tennessee (Hey, that rhymes!)

Posted October 1, 2008 · October 1, 2008

I am sorry you are having such pain and really hope your rheumatologist can

help. I really have a great rheumatologist. She is open to the

dietary/supplement thing. The first one I went to wasn't. As far as

supplements I take fish oil, Complete greens, an OPC 3 (from Market America)

it's basically bioflavenoiids - red wine extract, pine bark extract, etc,

evening primrose oil, flax oil, calcium, b complex, multi, extra C. I think I'm

going to start CoQ10. I've heard it's helpful for some people. My

rheumatologist always check my Vit. D level also. I used to take a kelp for my

thyroid but it seems to be okay now. I have also heard soy is not great for

people with thyroid trouble but not sure about that.

I'm surprised the prednisone isn't helping with your inflammation. RA is

usually bilateral but not always I guess. Mine started in both hands and both

feet, hips, knees. Maybe yours is not RA. Hope you get some answers soon!

RE: [ ] advice for new member