rheumatoid arthritis

[Guest guest]

Dear - www.arthritisfoundation.org is a great resource. Contact a local chapter in your area for support groups. Get your daughter on a biologic straight away. Ask your Rheumatologist about it. I take Remicade which is a biologic. For any of the standard treatments, the above website will have everything you need to help you understand treatments. JRA or juvenille Rheumatoid arthritis is devastating, but today damage can be halted and remissions are common when used in conjunction with biologics. We are here to help. I was an arthritis foundation support group leader so I can vouch for their benefit with newly diagnosed patients and their families. Hugs, Deborah Ra since 1994.

On 8/18/06, McKinney <jenniferlee75137@...> wrote:

My daughter just turned 17 and has just been recently diagnosed with RA. She has been on methotrexate shots now for a month. At first, the swelling and pain went down tremendously, but is back. I decided to

try to find something that would help us to learn more about treatments, etc. I feel so helpless because I can't help her.

[Guest guest]

Has the doctor talked to you about the Anti-TNF drugs like Humira or Enbrel?

They are very aggressive treatments that can really help your daugher,

especially if she has not had RA that long, IMO.

>

> My daughter just turned 17 and has just been recently diagnosed with

> RA. She has been on methotrexate shots now for a month. At first, the

> swelling and pain went down tremendously, but is back. I decided to

> try to find something that would help us to learn more about

> treatments, etc. I feel so helpless because I can't help her.

>

[Guest guest]

Thank you so much for the information. I am not going

through this as a patient, but as a parent it tears

out my heart. My daughter lost her dad when she was

20 months old and now this. We will overcome it, but

right now everything is so new to her. She gets upset

at me and tells me I don't have the pain. She is

right, but I hate this feeling of hopelessness because

I can't take the pain away from her. I want to just

hold her and shield her from all of this and I can't.

She just started back at school and has to really keep

to the books in order to graduate this year. Not

because of the JRA, but because she failed classes her

freshman year.

--- Deborah Bargad <dbargad@...> wrote:

> Dear - www.arthritisfoundation.org is a

> great resource. Contact a

> local chapter in your area for support groups. Get

> your daughter on a

> biologic straight away. Ask your Rheumatologist

> about it. I take Remicade

> which is a biologic. For any of the standard

> treatments, the above website

> will have everything you need to help you understand

> treatments. JRA or

> juvenille Rheumatoid arthritis is devastating, but

> today damage can be

> halted and remissions are common when used in

> conjunction with biologics.

> We are here to help. I was an arthritis foundation

> support group leader so

> I can vouch for their benefit with newly diagnosed

> patients and their

> families. Hugs, Deborah Ra since 1994.

>

> On 8/18/06, McKinney

> <jenniferlee75137@...> wrote:

> >

> > My daughter just turned 17 and has just been

> recently diagnosed with

> > RA. She has been on methotrexate shots now for a

> month. At first, the

> > swelling and pain went down tremendously, but is

> back. I decided to

> > try to find something that would help us to learn

> more about

> > treatments, etc. I feel so helpless because I

> can't help her.

> >

> >

> >

>

[Guest guest]

I had terrible side effects from oral MTX. So this is probably why her rheummy has prescribed the injections. They really do not hurt depending on where you give them. They also should be given in the fat...not into the muscle. I used my stomach or thigh. I gave myself my shots. I would encourage her to learn to give them herself.

As far as side effects are concerned here is the list I had while on MTX. I have been on pills and injections.

Constant diarrhea and vomiting(it was so bad I slept on bathroom floor)

Sores(ulcers) on or in my mouth, eyes, throat, and genitalia

Dizziness

headache

severe fatigue

drug induced pneumonitis which can be fatal lung side effect

I was on 3-4 pills and then switched to 0.6ml a week

I was also taking as much as 5mg of folic acid per day and Luekovorin on MTX days.

I finally stopped the drug myself. It was just too toxic for me. It works well for many people...but not for me.

Toni

[Guest guest]

jennifer - she doesn't have to take methotrexate by a shot. There are pills or if you're like me and don't have health insurance - the injectionable metho can be taken via mouth. Just squirt the dosage into a little water (you still have to get your dosage with a syringe but you can use that several times before needing a new one). I've been doing this since late 2003 - my rheumy had me do this. It only costs me about $26 for about 3 months worth. Helen JENNIFER MILLER <jenniferlee75137@...> wrote: She wasn't given a cortisone shot, by her first visit with the Rheumatologist some of the swelling had subsided. She showed me her hands this morning and was complaining of her ankles swelling again. She is so discouraged because she doesn't like shots AT ALL and it apparently hasn't built up enough in her system to really work. --- Harold Van Tuyl <hvantuylcharter (DOT) net> wrote: > General information about RA > > http://www.arc.org.uk/about_arth/booklets/6033/6033.htm > > > > > I like the above link even though it is written in > English rather than > American. > > > > Spoon Theory - explaining RA to others > > http://www.butyoudontlooksick.com/spoons.htm > > > > The spoon theory helps to understand how RA limits > our abilities in > sometimes unpredictable ways. > > > > Methotrexate usually takes several weeks to several > months to really be > effective. However, Prednisone or related drugs are > usually effective for > symptoms rather quickly but do little to slow or > stop permanent joint > damage, and have pretty bad side effects. Maybe > your daughter was put on > one of these or given a corticosteroid shot. Her > feeling good and then > feeling bad sounds more like temporary relief from a > corticosteroid and then > it wearing off. Of course, I'm not medically > trained. > > >

> Welcome to the site and we hope we can help with > answers, humor, and moral > support. I'll pray for you and your daughter. God > bless. > > > > _____ > > From: Rheumatoid Arthritis > [mailto:Rheumatoid Arthritis ] On > Behalf Of McKinney > Sent: Friday, August 18, 2006 10:52 AM > Rheumatoid Arthritis > Subject: rheumatoid arthritis > > > > My daughter just turned 17 and has just been > recently diagnosed with > RA. She has been on methotrexate shots now for a > month. At first, the >

swelling and pain went down tremendously, but is > back. I decided to > try to find something that would help us to learn > more about > treatments, etc. I feel so helpless because I can't > help her. > > ,___ > >

Stay in the know. Pulse on the new .com. Check it out.

[Guest guest]

Really? She will be happy to hear this because she

just cries (even at 17) about getting a shot. I

wonder why her rheumy did not tell us about this. How

does your stomach handle it?

--- Helen <helen050959@...> wrote:

> jennifer - she doesn't have to take methotrexate by

> a shot. There are pills or if you're like me and

> don't have health insurance - the injectionable

> metho can be taken via mouth. Just squirt the dosage

> into a little water (you still have to get your

> dosage with a syringe but you can use that several

> times before needing a new one). I've been doing

> this since late 2003 - my rheumy had me do this. It

> only costs me about $26 for about 3 months worth.

>

> Helen

>

> JENNIFER MILLER <jenniferlee75137@...> wrote:

> She

> wasn't given a cortisone shot, by her first visit

> with the Rheumatologist some of the swelling had

> subsided. She showed me her hands this morning

> and

> was complaining of her ankles swelling again. She

> is

> so discouraged because she doesn't like shots AT

> ALL

> and it apparently hasn't built up enough in her

> system

> to really work.

>

> --- Harold Van Tuyl <hvantuyl@...> wrote:

>

> > General information about RA

> >

> >

>

>

http://www.arc.org.uk/about_arth/booklets/6033/6033.htm

> >

> >

> >

> >

> > I like the above link even though it is written

> in

> > English rather than

> > American.

> >

> >

> >

> > Spoon Theory - explaining RA to others

> >

> > http://www.butyoudontlooksick.com/spoons.htm

> >

> >

> >

> > The spoon theory helps to understand how RA

> limits

> > our abilities in

> > sometimes unpredictable ways.

> >

> >

> >

> > Methotrexate usually takes several weeks to

> several

> > months to really be

> > effective. However, Prednisone or related drugs

> are

> > usually effective for

> > symptoms rather quickly but do little to slow or

> > stop permanent joint

> > damage, and have pretty bad side effects. Maybe

> > your daughter was put on

> > one of these or given a corticosteroid shot.

> Her

> > feeling good and then

> > feeling bad sounds more like temporary relief

> from a

> > corticosteroid and then

> > it wearing off. Of course, I'm not medically

> > trained.

> >

> >

> >

> > Welcome to the site and we hope we can help with

> > answers, humor, and moral

> > support. I'll pray for you and your daughter.

> God

> > bless.

> >

> >

> >

> > _____

> >

> > From: Rheumatoid Arthritis

> > [mailto:Rheumatoid Arthritis ] On

> > Behalf Of McKinney

> > Sent: Friday, August 18, 2006 10:52 AM

> > Rheumatoid Arthritis

> > Subject: rheumatoid

> arthritis

> >

> >

> >

> > My daughter just turned 17 and has just been

> > recently diagnosed with

> > RA. She has been on methotrexate shots now for a

> > month. At first, the

> > swelling and pain went down tremendously, but is

> > back. I decided to

> > try to find something that would help us to

> learn

> > more about

> > treatments, etc. I feel so helpless because I

> can't

> > help her.

> >

> > ,___

> >

> >

>

>

>

>

>

>

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

> Stay in the know. Pulse on the new .com. Check

> it out.

[Guest guest]

Dear - Just to relate a page from my own book. When I suffered with RA in the beginning, I was 33. It came out of nowhere. I was left unable to work after only a few months, and was misdiagnosed at first but went on the standard prednisone and plaquenil therapy. They were treating me for lupus but I kept getting worse. I swelled up like a balloon being on steriod and my father cared for me. He took me to every appointment,drove me everywhere. I remember him sitting one day on my bed with tears in his eyes, and I could see how much more it hurt him to see me like this. At that point, I called a contact from the arthritis foundation. From that point on my life and attitude toward my disease changed. Big time. My father and I drove a long way to the chapter office and we saw a large group of people there, a few in wheelchairs etc. Thats when it hit me. Really hit me. I thought is that me??? Will that be me some day? Well, it turns out this girl had RA from birth so they didnt have the treatments they do now. They stressed being as aggressive with the pain and the disease right from the start. Also, psychological counseling is very helpful at a time like this when you are newly diagnosed. You are in denial, and the pain does things to your mind. This is a chronic illness that may or may not be put into remission. As I said a Biologic makes a huge difference. If you cant afford them, Try a course of Cyclosporine which is an organ transplant rejection drug. It worked for me very well for several years and I have a very aggressive RA. You can help your daughter by making sure her books arent too heavy. Help her with those. Treat her to a movie or dinner and bond with her. Try treating her as normal as possible. Buy her bubblebath and run a tub full of them for her with a candle and her favorite music. Tell her, you will get through this together, one day at a time. I know it feels so overwhelming. Have questions? Does she? Please email me off list as I have a vast resource of information that may be helpful to you. Hugs, Deborah

On 8/23/06, JENNIFER MILLER <jenniferlee75137@...> wrote:

Thank you so much for the information. I am not goingthrough this as a patient, but as a parent it tearsout my heart. My daughter lost her dad when she was20 months old and now this. We will overcome it, but

right now everything is so new to her. She gets upsetat me and tells me I don't have the pain. She isright, but I hate this feeling of hopelessness becauseI can't take the pain away from her. I want to just

hold her and shield her from all of this and I can't.She just started back at school and has to really keepto the books in order to graduate this year. Notbecause of the JRA, but because she failed classes her

freshman year.--- Deborah Bargad <dbargad@...> wrote:> Dear - www.arthritisfounda

tion.org is a> great resource. Contact a> local chapter in your area for support groups. Get> your daughter on a

> biologic straight away. Ask your Rheumatologist> about it. I take Remicade> which is a biologic. For any of the standard> treatments, the above website> will have everything you need to help you understand

> treatments. JRA or> juvenille Rheumatoid arthritis is devastating, but> today damage can be> halted and remissions are common when used in> conjunction with biologics.> We are here to help. I was an arthritis foundation

> support group leader so> I can vouch for their benefit with newly diagnosed> patients and their> families. Hugs, Deborah Ra since 1994.> > On 8/18/06, McKinney> <

jenniferlee75137@...> wrote:> >> > My daughter just turned 17 and has just been

> recently diagnosed with> > RA. She has been on methotrexate shots now for a> month. At first, the> > swelling and pain went down tremendously, but is> back. I decided to> > try to find something that would help us to learn

> more about> > treatments, etc. I feel so helpless because I> can't help her.> >> > > >>

[Guest guest]

some people do experience some stomach upset when taking the pills or ingest the liquid. I had a little diarhea at first, but no stomach upset. And it took about 6 weeks before I realized that I felt incrementally better. It was subtle but definately an improvement. I was at the point of not being able to dress myself, it took 2 hands to brush my teeth, my hand shook holding a fork or such. Had to use 2 hands to hold a glass of liquid. Both shoulders were frozen, toes hurt something awful with the weight of the covers on them in bed. I was bad. http://www.parknicollet.com/printwindow.cfm?objectid=11C8AD58-A243-A235-6A571B92FD769257 this link will want to bring up your printer - so just cancel out of that and click on 'dose' - there you will find this info and more: "Methotrexate (Rheumatrex™) Methotrexate is one of the most commonly used DMARDs

(disease-modifying anti-rheumatic drugs). Methotrexate is used to treat rheumatoid arthritis, myositis, lupus, psoriatic arthritis, other forms of inflammatory arthritis and vasculitis, including giant cell arteritis. The way the drug works isn’t certain, but it has anti-inflammatory effects and modulates the immune system.Dose Generic methotrexate comes in 2.5 mg tablets, as well as a liquid that can be given as a shot under the skin or taken with juice by mouth. The usual dose of methotrexate is 10 to 25 mg once a week. For example, if you are taking 15 mg per week, that would be six tablets per week. The tablets are taken all on one day. They can be taken together all at once or spread out over the day. Your doctor will probably start you on a low dose of methotrexate initially and increase the dose at intervals depending on your condition and response. It is very important to follow dosing instructions carefully. The liquid form of methotrexate is available at a concentration of 25 mg/mL. It is yellow in color. The liquid form can be useful for patients who can’t absorb

methotrexate orally or have gastrointestinal side effects like nausea. If you are taking methotrexate liquid subcutaneously, each 0.1 mL equals 2.5 mg. For example, 0.8 mL equals 20 mg of methotrexate. If you are prescribed the methotrexate liquid, you will also be prescribed 1 mL tuberculin syringes to draw up the appropriate amount. Sites for subcutaneous injection can include the abdomen, the thighs, and the shoulder. An area of skin is pinched and entered at a 45 degree angle quickly and then injected. Generally, there is minimal discomfort with this. Our nurses are also knowledgeable on this technique and can teach you the proper way to inject. A vitamin called folic acid is prescribed at 1 mg per day, and this helps prevent or lessen many side effects of methotrexate." He had me start with .5 cc's and it was upped to .8 I probably should have it upped again but I'm waiting - kind of afraid of

liver damage So ask the doc about doing the liquid by mouth. I just squirt it into a little water. There was one vial of it that had a different taste - ick - but all the others hardly have a taste. If your doc questions that method - I could give you my doc's name and number and your doc could call mine. Helen JENNIFER MILLER <jenniferlee75137@...> wrote: Really? She will be happy to hear this because she just cries (even at 17) about getting a shot. I wonder why

her rheumy did not tell us about this. How does your stomach handle it?

Get your email and more, right on the new .com

[Guest guest]

I just noticed the comment about swollen ankles. 

That reminded me that early in my RA I was retaining fluid (edema) so I was

given a diuretic or water pill (Furosemide) and then also a Potassium pill to

maintain electrolyte balance.  Your daughter might ask if that might help her. 

I think a check for edema is to press on the swelling and if an indentation

remains for a few seconds it is edema.  If the skin bounces back to normal

rapidly then it is unlikely to be edema.  God bless.

From: Rheumatoid Arthritis [mailto:Rheumatoid Arthritis ] On Behalf Of JENNIFER MILLER

Sent: Wednesday, August 23, 2006

1:00 PM

Rheumatoid Arthritis

Subject: RE:

rheumatoid arthritis

Really? She will be happy to hear this because she

just cries (even at 17) about getting a shot. I

wonder why her rheumy did not tell us about this. How

does your stomach handle it?

--- Helen <helen050959 >

wrote:

> jennifer - she doesn't have to take methotrexate by

> a shot. There are pills or if you're like me and

> don't have health insurance - the injectionable

> metho can be taken via mouth. Just squirt the dosage

> into a little water (you still have to get your

> dosage with a syringe but you can use that several

> times before needing a new one). I've been doing

> this since late 2003 - my rheumy had me do this. It

> only costs me about $26 for about 3 months worth.

>

> Helen

>

> JENNIFER MILLER <jenniferlee75137 >

wrote:

> She

> wasn't given a cortisone shot, by her first visit

> with the Rheumatologist some of the swelling had

> subsided. She showed me her hands this morning

> and

> was complaining of her ankles swelling again. She

> is

> so discouraged because she doesn't like shots AT

> ALL

> and it apparently hasn't built up enough in her

> system

> to really work.

>

> --- Harold Van Tuyl <hvantuylcharter (DOT) net>

wrote:

>

> > General information about RA

> >

> >

>

>

http://www.arc.org.uk/about_arth/booklets/6033/6033.htm

> >

> >

> >

> >

> > I like the above link even though it is written

> in

> > English rather than

> > American.

> >

> >

> >

> > Spoon Theory - explaining RA to others

> >

> > http://www.butyoudontlooksick.com/spoons.htm

> >

> >

> >

> > The spoon theory helps to understand how RA

> limits

> > our abilities in

> > sometimes unpredictable ways.

> >

> >

> >

> > Methotrexate usually takes several weeks to

> several

> > months to really be

> > effective. However, Prednisone or related drugs

> are

> > usually effective for

> > symptoms rather quickly but do little to slow or

> > stop permanent joint

> > damage, and have pretty bad side effects. Maybe

> > your daughter was put on

> > one of these or given a corticosteroid shot.

> Her

> > feeling good and then

> > feeling bad sounds more like temporary relief

> from a

> > corticosteroid and then

> > it wearing off. Of course, I'm not medically

> > trained.

> >

> >

> >

> > Welcome to the site and we hope we can help with

> > answers, humor, and moral

> > support. I'll pray for you and your daughter.

> God

> > bless.

> >

> >

> >

> > _____

> >

> > From: Rheumatoid Arthritis

> > [mailto:Rheumatoid Arthritis ]

On

> > Behalf Of McKinney

> > Sent: Friday, August 18, 2006 10:52 AM

> > Rheumatoid Arthritis

> > Subject: rheumatoid

> arthritis

> >

> >

> >

> > My daughter just turned 17 and has just been

> > recently diagnosed with

> > RA. She has been on methotrexate shots now for a

> > month. At first, the

> > swelling and pain went down tremendously, but is

> > back. I decided to

> > try to find something that would help us to

> learn

> > more about

> > treatments, etc. I feel so helpless because I

> can't

> > help her.

> >

> > ,___

> >

> >

>

>

>

>

>

>

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

> Stay in the know. Pulse on the new .com. Check

> it out.

[Guest guest]

I was diagnosed at 19 with RA. The Rheumy first put me on Metho

(oral) and prednisone. Then we back off the prednisone a little bit

and I went on Enbrel (it's a shot every week). Learn all you can

about the disease and treatment so you can go back in there and fight

for what's best for your daughter. Fortunately (or unfortunately) my

Dad has RA as well so I knew a considerable amount about it and wasn't

surprised to be diagnosed with it.

>

> My daughter just turned 17 and has just been recently diagnosed with

> RA. She has been on methotrexate shots now for a month. At first,

the

> swelling and pain went down tremendously, but is back. I decided to

> try to find something that would help us to learn more about

> treatments, etc. I feel so helpless because I can't help her.

>

[Guest guest]

Oh I forgot to add that I was on MTX for nine VERY long months.

Re: rheumatoid arthritis

Posted by: "aclavern33@..." aclavern33@... msradar65

Wed Aug 23, 2006 1:51 pm (PST)

I had terrible side effects from oral MTX. So this is probably why her rheummy has prescribed the injections. They really do not hurt depending on where you give them. They also should be given in the fat...not into the muscle. I used my stomach or thigh. I gave myself my shots. I would encourage her to learn to give them herself. As far as side effects are concerned here is the list I had while on MTX. I have been on pills and injections.Constant diarrhea and vomiting(it was so bad I slept on bathroom floor)Sores(ulcers) on or in my mouth, eyes, throat, and genitaliaDizzinessheadachesevere fatiguedrug induced pneumonitis which can be fatal lung side effect I was on 3-4 pills and then switched to 0.6ml a weekI was also taking as much as 5mg of folic acid per day and Luekovorin on MTX days.I finally stopped the drug myself. It was just too toxic for me. It works well for many people...but not for me.Toni

[Guest guest]

Thanks for the information, I will keep a close watch

on her.

--- aclavern33@... wrote:

> Oh I forgot to add that I was on MTX for nine VERY

> long months.

>

>

> _Re: rheumatoid arthritis _

>

(Rheumatoid Arthritis/message/14790;_ylc=X3oDMTJyb\

WttcXJqBF9TAzk3MzU5NzE1BGdycElkAzEzODI1MzAEZ3Jwc

>

3BJZAMxNjAwMDYxNjEwBG1zZ0lkAzE0NzkwBHNlYwNkbXNnBHNsawN2bXNnBHN0aW1lAzExNTY0MDk

> yODc-)

> Posted by: " aclavern33@... " _aclavern33@...

> _

> (mailto:aclavern33@...?Subject=

> Re:%20rheumatoid%20arthritis) _msradar65 _

> (msradar65)

> Wed Aug 23, 2006 1:51 pm (PST)

> I had terrible side effects from oral MTX. So this

> is probably why her

> rheummy has prescribed the injections. They really

> do not hurt depending on

> where you give them. They also should be given in

> the fat...not into the

> muscle.

> I used my stomach or thigh. I gave myself my shots.

> I would encourage her

> to learn to give them herself.

>

> As far as side effects are concerned here is the

> list I had while on MTX. I

> have been on pills and injections.

>

> Constant diarrhea and vomiting(it was so bad I

> slept on bathroom floor)

> Sores(ulcers) on or in my mouth, eyes, throat, and

> genitalia

> Dizziness

> headache

> severe fatigue

> drug induced pneumonitis which can be fatal lung

> side effect

>

> I was on 3-4 pills and then switched to 0.6ml a

> week

>

> I was also taking as much as 5mg of folic acid per

> day and Luekovorin on MTX

> days.

>

> I finally stopped the drug myself. It was just too

> toxic for me. It works

> well for many people...but not for me.

>

> Toni

>

>

>

[Guest guest]

Thanks! We get the lab results today or tomorrow to

make sure she is doing ok on the methotrexate. She is

supposed to have her shot today, but won't get it

until we get the results back.

--- Harold Van Tuyl <hvantuyl@...> wrote:

> I just noticed the comment about swollen ankles.

> That reminded me that

> early in my RA I was retaining fluid (edema) so I

> was given a diuretic or

> water pill (Furosemide) and then also a Potassium

> pill to maintain

> electrolyte balance. Your daughter might ask if

> that might help her. I

> think a check for edema is to press on the swelling

> and if an indentation

> remains for a few seconds it is edema. If the skin

> bounces back to normal

> rapidly then it is unlikely to be edema. God bless.

>

>

>

> _____

>

> From: Rheumatoid Arthritis

> [mailto:Rheumatoid Arthritis ] On

> Behalf Of JENNIFER MILLER

> Sent: Wednesday, August 23, 2006 1:00 PM

> Rheumatoid Arthritis

> Subject: RE: rheumatoid

> arthritis

>

>

>

> Really? She will be happy to hear this because she

> just cries (even at 17) about getting a shot. I

> wonder why her rheumy did not tell us about this.

> How

> does your stomach handle it?

>

> --- Helen <helen050959@

> <mailto:helen050959%40> > wrote:

>

> > jennifer - she doesn't have to take methotrexate

> by

> > a shot. There are pills or if you're like me and

> > don't have health insurance - the injectionable

> > metho can be taken via mouth. Just squirt the

> dosage

> > into a little water (you still have to get your

> > dosage with a syringe but you can use that several

> > times before needing a new one). I've been doing

> > this since late 2003 - my rheumy had me do this.

> It

> > only costs me about $26 for about 3 months worth.

> >

> > Helen

> >

> > JENNIFER MILLER <jenniferlee75137@

> <mailto:jenniferlee75137%40>

> > wrote:

> > She

> > wasn't given a cortisone shot, by her first visit

> > with the Rheumatologist some of the swelling had

> > subsided. She showed me her hands this morning

> > and

> > was complaining of her ankles swelling again. She

> > is

> > so discouraged because she doesn't like shots AT

> > ALL

> > and it apparently hasn't built up enough in her

> > system

> > to really work.

> >

> > --- Harold Van Tuyl <hvantuylcharter (DOT)

> <mailto:hvantuyl%40charter.net>

> net> wrote:

> >

> > > General information about RA

> > >

> > >

> >

> >

> http://www.arc.

>

<http://www.arc.org.uk/about_arth/booklets/6033/6033.htm>

> org.uk/about_arth/booklets/6033/6033.htm

> > >

> > >

> > >

> > >

> > > I like the above link even though it is written

> > in

> > > English rather than

> > > American.

> > >

> > >

> > >

> > > Spoon Theory - explaining RA to others

> > >

> > > http://www.butyoudo

> <http://www.butyoudontlooksick.com/spoons.htm>

> ntlooksick.com/spoons.htm

> > >

> > >

> > >

> > > The spoon theory helps to understand how RA

> > limits

> > > our abilities in

> > > sometimes unpredictable ways.

> > >

> > >

> > >

> > > Methotrexate usually takes several weeks to

> > several

> > > months to really be

> > > effective. However, Prednisone or related drugs

> > are

> > > usually effective for

> > > symptoms rather quickly but do little to slow or

> > > stop permanent joint

> > > damage, and have pretty bad side effects. Maybe

> > > your daughter was put on

> > > one of these or given a corticosteroid shot.

> > Her

> > > feeling good and then

> > > feeling bad sounds more like temporary relief

> > from a

> > > corticosteroid and then

> > > it wearing off. Of course, I'm not medically

> > > trained.

> > >

> > >

> > >

> > > Welcome to the site and we hope we can help with

> > > answers, humor, and moral

> > > support. I'll pray for you and your daughter.

> > God

> > > bless.

> > >

> > >

> > >

> > > _____

> > >

> > > From: rheumatoid_arthriti

> <mailto:Rheumatoid Arthritis%40>

> s

> > > [mailto:rheumatoid_arthriti

> <mailto:Rheumatoid Arthritis%40>

> s ] On

> > > Behalf Of McKinney

> > > Sent: Friday, August 18, 2006 10:52 AM

> > > rheumatoid_arthriti

> <mailto:Rheumatoid Arthritis%40>

> s

> > > Subject: rheumatoid

> > arthritis

> > >

> > >

> > >

> > > My daughter just turned 17 and has just been

> > > recently diagnosed with

> > > RA. She has been on methotrexate shots now for a

> > > month. At first, the

> > > swelling and pain went down tremendously, but is

> > > back. I decided to

> > > try to find something that would help us to

> > learn

> > > more about

> > > treatments, etc. I feel so helpless because I

> > can't

> > > help her.

> > >

> > > ,___

> > >

> > >

> >

> >

> >

> >

> >

> >

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

> > Stay in the know. Pulse on the new .com.

> Check

> > it out.

>

>

>

>

[Guest guest]

Thank you very much.

--- Deborah Bargad <dbargad@...> wrote:

> Dear - Just to relate a page from my own

> book. When I suffered

> with RA in the beginning, I was 33. It came out of

> nowhere. I was left

> unable to work after only a few months, and was

> misdiagnosed at first but

> went on the standard prednisone and plaquenil

> therapy. They were treating

> me for lupus but I kept getting worse. I swelled up

> like a balloon being on

> steriod and my father cared for me. He took me to

> every appointment,drove

> me everywhere. I remember him sitting one day on my

> bed with tears in his

> eyes, and I could see how much more it hurt him to

> see me like this. At

> that point, I called a contact from the arthritis

> foundation. From that

> point on my life and attitude toward my disease

> changed. Big time. My

> father and I drove a long way to the chapter office

> and we saw a large group

> of people there, a few in wheelchairs etc. Thats

> when it hit me. Really

> hit me. I thought is that me??? Will that be me

> some day? Well, it turns

> out this girl had RA from birth so they didnt have

> the treatments they do

> now. They stressed being as aggressive with the

> pain and the disease right

> from the start. Also, psychological counseling is

> very helpful at a time

> like this when you are newly diagnosed. You are in

> denial, and the pain

> does things to your mind. This is a chronic illness

> that may or may not be

> put into remission. As I said a Biologic makes a

> huge difference. If you

> cant afford them, Try a course of Cyclosporine which

> is an organ transplant

> rejection drug. It worked for me very well for

> several years and I have a

> very aggressive RA. You can help your daughter by

> making sure her books

> arent too heavy. Help her with those. Treat her to

> a movie or dinner and

> bond with her. Try treating her as normal as

> possible. Buy her bubblebath

> and run a tub full of them for her with a candle and

> her favorite music.

> Tell her, you will get through this together, one

> day at a time. I know it

> feels so overwhelming. Have questions? Does she?

> Please email me off list

> as I have a vast resource of information that may be

> helpful to you. Hugs,

> Deborah

>

> On 8/23/06, JENNIFER MILLER

> <jenniferlee75137@...> wrote:

> >

> > Thank you so much for the information. I am not

> going

> > through this as a patient, but as a parent it

> tears

> > out my heart. My daughter lost her dad when she

> was

> > 20 months old and now this. We will overcome it,

> but

> > right now everything is so new to her. She gets

> upset

> > at me and tells me I don't have the pain. She is

> > right, but I hate this feeling of hopelessness

> because

> > I can't take the pain away from her. I want to

> just

> > hold her and shield her from all of this and I

> can't.

> > She just started back at school and has to really

> keep

> > to the books in order to graduate this year. Not

> > because of the JRA, but because she failed classes

> her

> > freshman year.

> >

> > --- Deborah Bargad <dbargad@...

> <dbargad%40gmail.com>> wrote:

> >

> > > Dear - www.arthritisfoundation.org is a

> > > great resource. Contact a

> > > local chapter in your area for support groups.

> Get

> > > your daughter on a

> > > biologic straight away. Ask your Rheumatologist

> > > about it. I take Remicade

> > > which is a biologic. For any of the standard

> > > treatments, the above website

> > > will have everything you need to help you

> understand

> > > treatments. JRA or

> > > juvenille Rheumatoid arthritis is devastating,

> but

> > > today damage can be

> > > halted and remissions are common when used in

> > > conjunction with biologics.

> > > We are here to help. I was an arthritis

> foundation

> > > support group leader so

> > > I can vouch for their benefit with newly

> diagnosed

> > > patients and their

> > > families. Hugs, Deborah Ra since 1994.

> > >

> > > On 8/18/06, McKinney

> > > <jenniferlee75137@...

> <jenniferlee75137%40>> wrote:

> > > >

> > > > My daughter just turned 17 and has just been

> > > recently diagnosed with

> > > > RA. She has been on methotrexate shots now for

> a

> > > month. At first, the

> > > > swelling and pain went down tremendously, but

> is

> > > back. I decided to

> > > > try to find something that would help us to

> learn

> > > more about

> > > > treatments, etc. I feel so helpless because I

> > > can't help her.

> > > >

> > > >

> > > >

> > >

> >

> >

> >

>

[Guest guest]

Hi ,

I can understand what you are going thru. I have RA and have

had it for years. My daughter, age 24, has it also. When she first

got it no one would believe the pain she had and also the lack of

motion, stiffness, swelling & etc. She had tried several different

jobs but to no avail. Finally they diagnose her with it and now she

is getting some relief from the symptoms.

It is not an easy road to travel. There was no other relative in

the families that had RA. I was just the lucky one that came down

with it, and a few others. I sure didn't want this past on to my

daughter.

Your daughter is lucky to have someone that will at least try to

understand what she is going thru. I, myself, find it hard to believe

that someone who does not have RA has any idea of the pain and

emotional trouble that accompanies RA. It can be devastating for

some.

The only thing she can do is read up on everything she can on RA.

This will help her make the decisions she will need to make on Meds

and treatment. She should also try and find a group, such as this,

that have RA. It helps tremendously, and also she will need someone

like you to help and keep her moral support high. Just keep up the

good work.

Tom G

[Guest guest]

She had a really bad day today and of course I had to

fight with the pharmacy to get her methotrexate, so

she is a day behind on her shot, but she will get it

today. She woke up with her hands curled up and a

couple of her fingers locked. Last year, she was a

bouncy teenager. She had some aches and pains every

now and then, but we just thought it was stress and it

never bothered with her day to day functions, now, she

can barely hold a pen to write and can barely take

steps to walk because of her ankles.

She was crying when she had to go to school and could

barely brush her hair and I watched her put her makeup

on and watched the pain in her eyes. I had to iron

her pants for her and being a mom I just want to

shield her and do stuff for her, but she is 17 and

needs her independence. She tried to stay at school

and made it through one class and I had to pick her

up. I can't stand to see anyone I love hurt and this

is hard because her dad died when she was 20 months

old, so she only has me to comfort her as far as a

parent. My mother is not maternal and alot of my

family is the same way. I told my sister how bad

Beth's day has been and she told me that Beth doesn't

have a very high tolerance of pain and needs to learn

to deal with this. My daughter can't handle pain,

but, my sister doesn't see her hands and how they have

changed and doesn't see her ankles and such. I know

when my daughter is taking advantage of something or

someone and when she isn't, so there are days I will

tell her to behave and she will giggle and be ok, but

the days that are bad, I know she isn't faking. She

has to work hard to graduate on time this year, and

now this is going to make it even harder for her. As

a parent, it is so hard, it is my job to fight for her

and I will. I took on that responsibility when I

became a parent. It hurts because I don't want her to

be in pain and all I can do is sit there and watch. I

am also the one that she will sometimes take it out on

because as far as we know, it was my great aunt and

great uncle (brother and sister) who had RA, so she

blames me, then I am not the one taking the shots or

hurting so bad.

Our computer at home will be up and running very very

soon, so I can get her signed up to this group.

Thanks....jenn

--- Tom Gantzler <tgantzler@...> wrote:

>

>

> Hi ,

> I can understand what you are going thru. I

> have RA and have

> had it for years. My daughter, age 24, has it also.

> When she first

> got it no one would believe the pain she had and

> also the lack of

> motion, stiffness, swelling & etc. She had tried

> several different

> jobs but to no avail. Finally they diagnose her with

> it and now she

> is getting some relief from the symptoms.

> It is not an easy road to travel. There was no

> other relative in

> the families that had RA. I was just the lucky one

> that came down

> with it, and a few others. I sure didn't want this

> past on to my

> daughter.

> Your daughter is lucky to have someone that will

> at least try to

> understand what she is going thru. I, myself, find

> it hard to believe

> that someone who does not have RA has any idea of

> the pain and

> emotional trouble that accompanies RA. It can be

> devastating for

> some.

> The only thing she can do is read up on

> everything she can on RA.

> This will help her make the decisions she will need

> to make on Meds

> and treatment. She should also try and find a group,

> such as this,

> that have RA. It helps tremendously, and also she

> will need someone

> like you to help and keep her moral support high.

> Just keep up the

> good work.

>

> Tom G

>

>

>

>

>

>

>

[Guest guest]

Welcome Maile,

I've been taking Enbrel, what side effects do you have? I " ve had some

muscle stiffness that has gone away, but a headache with each dose. As for MTX

,

its 8 on thursdays for me...yuk. but it helps!

Heidi

Massachusetts

To those who believe, no explanation is necessary; to those who dont, no

explanation is possible

In a message dated 5/7/2008 9:47:56 P.M. Eastern Daylight Time,

u4maile@... writes:

Hi my name is Maile and I've just joined the group. At this point I'm

just seeking others who have RA and are experiencing side effects from

medicines (enbrel, methotrexate, etc.). Thanks for your time.

**************Wondering what's for Dinner Tonight? Get new twists on family

favorites at AOL Food.

(http://food.aol.com/dinner-tonight?NCID=aolfod00030000000001)

[Guest guest]

Hi,

Don't blame you. The side effects on all of these are insane, but everything

has to be written out. I picked Enbrel because it seemed to be the one with

the least side effects and I did not want an IV with Remicade. Think

positively and please keep us posted.

Heidi

To those who believe, no explanation is necessary; to those who dont, no

explanation is possible

In a message dated 5/7/2008 11:24:32 P.M. Eastern Daylight Time,

u4maile@... writes:

>Hi Heidi! I've been taking Enbrel for about 2 years. I started

taking MTX with it but hated the side effects so stopped and after

about six months my conditions have gone back to fairly bad. I'm also

really freaking out right now because within the last 2 weeks I've

noticed some strange lumps above my clavical. My doctor hopes they

are just swollen lymph nodes and I'm on antibiotics for that. My fear

is all that I've read about Enbrel and lymphoma. They are really

weird lumps. Kind of scared. Thanks Maile California

> Welcome Maile,

>

> I've been taking Enbrel, what side effects do you have? I " ve had

some

> muscle stiffness that has gone away, but a headache with each

dose. As for MTX ,

> its 8 on thursdays for me...yuk. but it helps!

>

> Heidi

> Massachusetts

>

> To those who believe, no explanation is necessary; to those who

dont, no

> explanation is possible

>

>

> In a message dated 5/7/2008 9:47:56 P.M. Eastern Daylight Time,

> u4maile@... writes:

>

>

>

>

> Hi my name is Maile and I've just joined the group. At this point

I'm

> just seeking others who have RA and are experiencing side effects

from

> medicines (enbrel, methotrexate, etc.). Thanks for your time.

>

>

>

>

>

>

>

>

> ************ ************<WBR>**Wondering what's for Dinner Tonigh

on family

> favorites at AOL Food.

> (_http://food.http://food.<WBhttp://food.http://food.<WBRhttp_

(http://food.aol.com/dinner-tonight?NCID=aolfod00030000000001) )

>

>

> [Non-text portions of this message have been removed]

>

**************Wondering what's for Dinner Tonight? Get new twists on family

favorites at AOL Food.

(http://food.aol.com/dinner-tonight?NCID=aolfod00030000000001)

[Guest guest]

I have a chronic headache and I'm already taking meds to control it

I googled Enbrel 7 headache & found this:

http://www.rxlist.com/cgi/generic/etanercept_ad.htm

The following adverse events were reported more commonly in 69 JRA patients

receiving 3 months of ENBREL® compared to the 349 adult RA patients in

placebo-controlled trials. These included headache (19% of patients, 1.7 events

per patient-year), nausea (9%, 1.0 events per patient-year), abdominal pain

(19%, 0.74 events per patient-year), and vomiting (13%, 0.74 events per

patient-year).

---------------------------------

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