I'm new

[Guest guest]

,

I LOVE your son's name! Did your ped finally recommend a specialist or did you have to ask for it? Our ped was the same way regarding blowing it off. I started mentioning the neck thing (torticollis I know now!) at our FIRST appointment (he was 1 week old!) and the head flattening early on (I think at his 3 or 4 month appt) and he kept telling me to change what end of the crib his head is on and same thing on the changing table...I kept telling him "he'll just look at the wall then! He just likes turning his head to the left!" I know now my poor baby COULDN'T turn his head! It was only until we happened to see another ped in the practice on a sick visit that she noticed the neck and head issues right off the bat. Still, she gave me one exercise to do and sent me on my way! It was my internet research that helped me and got me pushing my ped for help. It still burns me up! Although, I hear so many stories here like it that I have decided to give the ped another chance.

OH BUT YOU'LL LOVE THIS LADIES! I went in for another sick visit w/ Grant on Monday and we saw our own ped...he was like "wow, Grant's head is looking a lot better! it was really bad there for a while." HUH? I didn't even respond I was so dumbfounded. #1...he's not in his band yet and the repositioning has only slightly helped (mostly it's helped his hair grow over the flat side) #2...this guy NEVER even noticed it was bad...he's never, ever mentioned ANYTHING about his head?! Sorry...venting a little

, good luck to you and Kale at the specialist on Monday!!!

, Mom to Grant (born 9/26/01)

[Guest guest]

In a message dated 6/13/2002 8:52:03 AM Eastern Daylight Time, Av@... writes:

I think he assumed that had it b/c used to favor his right side..and mostly look that way. But that was when he was younger..and i was reading that around 3 months...they stop looking in one direction. And now that it's flat on that side..it's easier for him to lay on that side..but he looks both ways fine...so i don't really think so

,

Welcome to the group! I would test out whether your son has full rotation both ways by using toys to get him to look way left or way right. If your son has a flat right back, as my son did, he may have left torticollis (MAY). This would mean that he favors looking right, and therefore has created more pressure on the flat right back, creating the flat spot. I would not leave it at that with the specialist saying he thinks he has tort, but never explained why or what to do about it. You should know that tort is a tight neck muscle and some kids DO have full rotation both ways, but still have a degree of tort (shown by a tilt of the head), and vice versa. You can check into www.torticolliskids.org for more information on what tort is and check into www.torticolliskids for support from other parents dealing with tort as well. If its a mild case, it will be easier for you to do a few stretches and resolve this more quickly. My son was in his helmet a week shy of 5 months, he also had tort (severe) and we found repositioning was not working for us. My son received about 90-95% correction with the DOC band, and we have no regrets. Good luck and please if I can help you in anyway, let me know!

' Mom

[Guest guest]

Thank you so much ! That is so sweet..and it makes me feel good to know i have support!

seems fine looking both ways..he doesn't seem like he's stiff at all. If i sit on the other side of him..he looks....but i will ask the specialist just in case. The dr did give us a few stretching exercises that we are supposed to do every time we change him...so i think he is assuming he needs it...but again..i think it's an assumption b/c he didn't really test him out or anything..he just heard that he favored that one side when he was younger...and took it from there. But we go back in a few weeks..and we have been doing the exercises..b/c it can't hurt...and keeping him as much as we can off the back of his head and especially that side....so hopefully even if he needs the helmet...it won't be a very long time. Last time the dr said if he needs it...he would probably wear it for about 6-8 weeks. So i guess that wouldn't be too bad. Of course it's the middle of the summer...but i just want his head to be rounded out.

I really will try to take a picture and send it in..so some of you can tell me what you think....

Thanks again! I really appreciate all the support i've been getting!

In a message dated 6/14/2002 12:26:19 PM Eastern Standard Time, rella1234@... writes:

,

Welcome to the group! I would test out whether your son has full rotation both ways by using toys to get him to look way left or way right. If your son has a flat right back, as my son did, he may have left torticollis (MAY). This would mean that he favors looking right, and therefore has created more pressure on the flat right back, creating the flat spot. I would not leave it at that with the specialist saying he thinks he has tort, but never explained why or what to do about it. You should know that tort is a tight neck muscle and some kids DO have full rotation both ways, but still have a degree of tort (shown by a tilt of the head), and vice versa. You can check into www.torticolliskids.org for more information on what tort is and check into www.torticolliskids for support from other parents dealing with tort as well. If its a mild case, it will be easier for you to do a few stretches and resolve this more quickly. My son was in his helmet a week shy of 5 months, he also had tort (severe) and we found repositioning was not working for us. My son received about 90-95% correction with the DOC band, and we have no regrets. Good luck and please if I can help you in anyway, let me know!

[Guest guest]

In a message dated 6/14/2002 7:35:41 PM Eastern Daylight Time, Av@... writes:

b/c he didn't really test him out or anything..he just heard that he favored that one side when he was younger...and took it from there. But we go back in a few weeks..and we have been doing the exercises..b/c it can't hurt...and keeping him as much as we can off the back of his head and especially that side

,

Great approach- it certainly can't hurt if its not tort related and keeping him off that flat spot will certainly help the plagio from progressing any further. Good luck with it and keep us updated on your little one!

' Mom

[Guest guest]

Thanks !!

In a message dated 6/17/2002 11:19:32 AM Eastern Standard Time, rella1234@... writes:

,

Great approach- it certainly can't hurt if its not tort related and keeping him off that flat spot will certainly help the plagio from progressing any further. Good luck with it and keep us updated on your little one!

' Mom

[Guest guest]

I'm sure every person's reaction is different but my son had a really hard

time with adderol. He quickly developed a weird facial tic like the tardive

dyskinesia some develop after years on med that kept getting worse until

three weeks after we removed the drug. He also had a lot of trouble sleeping

and didn't eat much when taking it and seemed kind of dopey. But he only

took adderol for one week and I hear the insomnia and lack of eating go away

after most people get used to the drug.

Gaylen

[Guest guest]

My ADHD son was put on Adderal when he was 11 and it was terrible. He became

mean, he was verbally nasty to everyone and aggressive too. Another friend who

has adopted 4 special needs kids told me they had the same experience.

jessiesangel2002 wrote:Hi my name is Stacey and I'm new to this group. I have a

11yr old

daughter with Aspergers/ADD and am happy to join this group. My

daughter is in special ed and has social therapy. She was diagnosed

with both at the age of 4yrs old. I do have a question. My daughter

has been taken off ritilan and is now on adderall. Has anybody had

any experience with this med?

Stacey

Responsibility for the content of this message lies strictly with

the original author, and is not necessarily endorsed by or the

opinion of the Research Institute.

[Guest guest]

Hello there, Carol Es! Welcome to our group.

Sorry you've had such a difficult time getting the correct diagnosis.

Just a word of caution: although it's possible, it's unusual to have

both full-fledged SLE and RA concurrently - it's usually one or the

other. Or did your physician say you have an overlap syndrome? Have you

seen only one rheumatologist? Who originally diagnosed the MS and why

was the diagnosis changed? Don't feel as if you have to answer any of my

nosy questions if you don't feel like it.

Try not to worry about the Plaquenil (hydroxychloroquine). It has a very

good safety profile and is appropriate for both SLE and RA.

Some links on Plaquenil (hydroxychloroquine):

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

http://www.rheumatology.org.nz/nz09008.htm

http://www.arthritis.co.za/chloroquine.html

Combining Plaquenil with corticosteroids is routinely done and thought

to be safe.

[ ] i'm new

> hi there.

>

> i am a new member. i have sle + ra. that's what the rheumo told me

> just yesterday. i need to learn lots about

> this because i have just spent the last 4 years studying up on ms,

> which apparently i don't have now.

>

> i am supposed to start again on medrol & start a new medication:

> plaquenil, but i'm scared.

>

> anyone here ever on these meds together?

[Guest guest]

thanks for the welcome gina.

i don't mind answering the questions at all.

i was dxed with ra when i was a kid, about 15 or 16.

i was dxed with ms in 2000 by a few different neurologists. i didn't

believe it & went to a few. there was not enough lab evidence, just

clinical symptoms/history/reflex, etc. i have some kind of

polyneuropathy. it was supected as ms for a long time, but ruled out

because my last mris were clear.

i've had complete work ups with 3 rheumatologsts. the last one was

the most intense. i've been seeing him for about 6 months & he was

hesitant to give me any dx because of all my confusing past &

misdiagnoses. yesterday he told me i have both lupus & ra. he didn't

talk about " full-fledged " . i have been suffering for many years & i

do not walk much. any more full-fledged and i would be in the

wheelchair full time. anyhow, that is a very shortened version of my

current situation.

> Hello there, Carol Es! Welcome to our group.

>

> Sorry you've had such a difficult time getting the correct

diagnosis.

> Just a word of caution: although it's possible, it's unusual to have

> both full-fledged SLE and RA concurrently - it's usually one or the

> other. Or did your physician say you have an overlap syndrome? Have

you

> seen only one rheumatologist? Who originally diagnosed the MS and

why

> was the diagnosis changed? Don't feel as if you have to answer any

of my

> nosy questions if you don't feel like it.

>

> Try not to worry about the Plaquenil (hydroxychloroquine). It has a

very

> good safety profile and is appropriate for both SLE and RA.

>

> Some links on Plaquenil (hydroxychloroquine):

>

> http://www.rxlist.com/cgi/generic/hquine.htm

> http://www.rheumatology.org.nz/nz09008.htm

> http://www.arthritis.co.za/chloroquine.html

>

> Combining Plaquenil with corticosteroids is routinely done and

thought

> to be safe.

>

>

>

>

> [ ] i'm new

>

>

> > hi there.

> >

> > i am a new member. i have sle + ra. that's what the rheumo told me

> > just yesterday. i need to learn lots about

> > this because i have just spent the last 4 years studying up on ms,

> > which apparently i don't have now.

> >

> > i am supposed to start again on medrol & start a new medication:

> > plaquenil, but i'm scared.

> >

> > anyone here ever on these meds together?

[Guest guest]

and ...

Welcome... I am so glad you have found out about . There is really

nowhere else to receive the treatments other than through Dr. Goldberg.

There is a clinic in New York but it is at capacity and not taking any

new patients.

Unfortunately, Dr. Goldberg's office has recently stopped taking new

patients as well, but he says that is a temporary situation. You might want

to call his office to see if they will send you a new patient packet or get

on the waiting list... I'm not sure what their policy is at this point. The

number there is 818-343-1010.

Dr. Goldberg only treats children he has seen in his office. We have been

to his office once, and may go out again in the fall. There are people in

this group who can connect you with help for airfare which is sometimes

available to children (and a chaperone) who need to travel for medical

reasons.

, I have heard Dr. Goldberg comment that he thinks there could very

well be some stuff going on with Down Syndrome kids.

My son (dx PDD/NOS) has been under Dr. Goldberg's care for 1.5 years now and

he has improved greatly... it has been well worth every penny spent... and

everything but one test (the Meridian Valley Food Screen for about $100) was

covered by our insurance (at the rate we were eligible for, of course).

Please continue to follow this group... I think you will find it to be a

wealth of information. There is a lot that can be to help these children.

Caroline

[Guest guest]

Hi,

This is an area that Kathy-/NY is highly interested in. Due to her

interest, I've posted a number of studies finding food reactions and other

immune abnormalities consistent with . I'll try to post links to them

tonight, and I'll alert Kathy to your post in case she doesn't have a chance

to catch up on emails.

In the meantime, below are a couple of abstracts. The first one sounds like

they're calling an immune reaction to wheat... coeliac. The coeliac is

debatable, but it definitely finds an immune reaction.

Cheryl

Brain Res Bull. 2001 May 15;55(2):313-7. Related Articles, Links

Immune-endocrine status and coeliac disease in children with Down's

syndrome: relationships with zinc and cognitive efficiency.

Licastro F, ni RA, Faldella G, Carpene E, Guidicini G, Rangoni A,

Grilli T, Bazzocchi G.

Department of Experimental Pathology, University of Bologna, Bologna, Italy.

licastro@....

Immune defects, thyroid abnormalities, plasma zinc levels, and the presence

of gastrointestinal disease were investigated in 43 children with Down's

syndrome (DS). Peripheral T lymphocytes with the phenotype of helper cells

or cluster of differentiation 4 (CD4) were decreased. Circulating activated

T cells (CD3/HLA-DR-positive cells) and large granular lymphocytes

(CD16/CD56 positive cells) were increased. Plasma levels of interleukin-6

were higher in DS children than in controls. Serum levels of

thyroid-stimulating hormone were increased in DS. Coeliac disease was

over-represented in the group of DS children and many of these children also

showed increased serum levels of immunoglobulin-G (IgG) specific for gliadin

antigen. The increment of serum interleukin-6 was age-related and correlated

with anti-gliadin IgG levels in DS. Plasma zinc levels were lower in DS

children with coeliac disease and in those with anti-gliadin IgG than in DS

without detectable anti-gliadin IgG. Dietary antigens may represent a

continuous stimulus for the immune system in this syndrome and interfere

with normal immune responses. Altered intestinal absorption of nutrients may

in turn affect endocrine functions, brain development, and cognitive

performances.

PMID: 11470333 [PubMed - indexed for MEDLINE]

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

J Dent Res. 2002 May;81(5):308-12. Related Articles, Links

Comment in:

J Dent Res. 2002 Sep;81(9):588; discussion 588-9.

Severe impairment of secretory Ig production in parotid saliva of Down

Syndrome individuals.

Chaushu S, Yefenof E, Becker A, Shapira J, Chaushu G.

Department of Orthodontics, Hebrew University-Hadassah School of Dental

Medicine, PO Box 12272, Jerusalem 91120, Israel. drshaush@...

Infections associated with Down Syndrome (DS) are prevalent in the

mucosal-gastrointestinal and respiratory systems, for reasons that are

uncertain. The purpose of the present study was to assess the levels of

parotid salivary immunoglobulins (Ig) in a group of DS individuals as a

possible factor in the susceptibility of mucosal surfaces to infections.

Twenty-nine DS and 10 age- and sex-matched healthy individuals were

included. Salivary flow rate and IgA, IgG, and IgM concentrations were

recorded. The secretion rates of IgA and IgG were diminished by 83% (p <

0.001) and 75% (p = 0.05), respectively, whereas the secretion rate of IgM

was not statistically significantly lower. Analysis of the data suggests

that DS individuals are immunodeficient in the humoral mucosal immune

response. This may explain, in part, the high incidence of recurrent

infections in target organs of the secretory immune system in DS subjects.

PMID: 12097442 [PubMed - indexed for MEDLINE]

----Original Message Follows----

From: " Cooke " <a.s.cooke@...>

Reply-

< >

Subject: I'm new

Date: Thu, 24 Jul 2003 10:08:38 -0400

I'm new to this list, having just heard of . My daughter, ,

has Down syndrome and depending on who you talk to is on the Autistic

spectrum, has severe sensory integration issues or " exhibits some

autistic-like behaviors. " The list of symptoms of sounds like a

description of - she even has those " goosebumps " being discussed -

and the family history sounds incredibly like my family. Every step of the

way we have gotten conflicting advice and I don't feel we've done right by

her for a long time. She's 10, and I know the Down syndrome has clouded a

lot of issues, but time's a-wastin'. I have always believed that there's

more going on physiologically than has been diagnosed (and there's plenty

that has been) and really strikes a chord with me.

So, where do I start? Should I take to see Dr. G, or is there

someone on the East coast that does this (we're in central NJ) ? I see a

lot of folks have phone conferences w/ Dr. G. but do you need to see him

first? At this point I'm willing to do pretty much anything if

really seems to have .

[Guest guest]

Hi Lori & welcome to our group!!

We're glad you found us. Getting your baby into their new helmet is definitely an exciting time and very nerve wracking as well. You should be pleasantly surprised at how well Kaitlyn adjusts to her new helmet. Has she already been casted for it or will this week's appt be for the casting? Where abouts are you located, we might have another member in your area!

Debbie Abby's mom DOCGrad Michigancprlmr <cprlmr@...> wrote:

Well I'm new, my daughter's name is Kaitlyn Marie and she is 8 months old and is going to get a helment. We go this week to talk to a docter to get her fitted. I'm glad we're finally getting it, and I am also kinda nervous. I had no idea that this many people have to deal with this. This website was very helpful. I just wanted to say Hi. ThanksLoriFor more plagio info

[Guest guest]

Lori,

I haven't gotten through all the posts tonight, so apologies if I'm

duplicating what everyone has already said, but first, Welcome. Now,

some questions Where are you from, what kind of helmet is Kaitlyn

getting? Good luck with everything

Kerri from NY

's mom (DOCgrad)

> Well I'm new, my daughter's name is Kaitlyn Marie and she is 8

> months old and is going to get a helment. We go this week to talk

> to a docter to get her fitted. I'm glad we're finally getting it,

> and I am also kinda nervous. I had no idea that this many people

> have to deal with this. This website was very helpful. I just

> wanted to say Hi.

> Thanks

> Lori

[Guest guest]

Hi Lori,

Welcome to the group! Please keep us posted on your daughter.

> Well I'm new, my daughter's name is Kaitlyn Marie and she is 8

> months old and is going to get a helment. We go this week to talk

> to a docter to get her fitted. I'm glad we're finally getting it,

> and I am also kinda nervous. I had no idea that this many people

> have to deal with this. This website was very helpful. I just

> wanted to say Hi.

> Thanks

> Lori

[Guest guest]

Hi Lori, just wanted to welcome you! This site is a wonderful source of comfort. It can be a nerve wracking experience, but it is much harder on us than the babies. Kaitlyn will not even bat an eye. Trentyn actually wants his helmet back on when I take it off to clean. Very funny! Anyway, welcome, keep us posted on when Kaitlyn gets her band. Beautiful name!

Jen- TXTrentyn- 15 mo. DocBand 06/12/03

I'm new

Well I'm new, my daughter's name is Kaitlyn Marie and she is 8 months old and is going to get a helment. We go this week to talk to a docter to get her fitted. I'm glad we're finally getting it, and I am also kinda nervous. I had no idea that this many people have to deal with this. This website was very helpful. I just wanted to say Hi. ThanksLoriFor more plagio info

[Guest guest]

Hi and Welcome to the group!!! What kind of helmet will she be

getting?

Dustie

> Well I'm new, my daughter's name is Kaitlyn Marie and she is 8

> months old and is going to get a helment. We go this week to talk

> to a docter to get her fitted. I'm glad we're finally getting it,

> and I am also kinda nervous. I had no idea that this many people

> have to deal with this. This website was very helpful. I just

> wanted to say Hi.

> Thanks

> Lori

[Guest guest]

Lori-

Welcome to the group- glad you found this great place of support and information! Keep us posted on how things are going for your little girl!

'mom

[Guest guest]

HI WELCOME I ALSO HAVE PAIN IN MY LEFT JAW SO FAR NO PROBLEM WITH RIGHT SIDE

JULIE

[Guest guest]

Welcome to or Group I have problems with my jaw at times never have been told it

was tmj.

Enjoy your stay in seattle

Trudy

jmorob@... wrote:

Hello Group

I am new and have suffered with rheumatoid arthritis for the last ten years.

It started very slowly and then came on like gang busters. I currently take

methotrexate as well as enbrel but have gone through the gamut of medicines in

the past. For flare ups I usually take prednisone. I still work (I teach) and

there is not much time to write but I will try and offer help when I can.

One of my big problems is TMJ. I haven't heard anyone mention this.

Steroid injections have helped but I pretty much have constant pain on the left

side of my jaw. An MRI showed deterioration on both sides.

Currently, I am visiting my daughter in Seattle and over did the

walking. I'm paying for it now with lots of aches and pain but it was worth it.

Take Care

Babs

[Guest guest]

Welcome Babs,

I have had TMJ pain, but not lately. I'm sorry that you have it quite

a bit, it's so painful.

Glad your here, and can't wait to know more about you.

Hugs, Tawny

> Hello Group

>

> I am new and have suffered with rheumatoid arthritis for the last

ten years.

> It started very slowly and then came on like gang busters. I

currently take

> methotrexate as well as enbrel but have gone through the gamut of

medicines in

> the past. For flare ups I usually take prednisone. I still work (I

teach) and

> there is not much time to write but I will try and offer help when

I can.

> One of my big problems is TMJ. I haven't heard anyone mention

this.

> Steroid injections have helped but I pretty much have constant pain

on the left

> side of my jaw. An MRI showed deterioration on both sides.

> Currently, I am visiting my daughter in Seattle and over did

the

> walking. I'm paying for it now with lots of aches and pain but it

was worth it.

>

> Take Care

> Babs

>

>

>

[Guest guest]

Babs,

I have TMJ, but it is a result of an accident, not RA. TMJ sure

changes the way we eat.

I'm glad you had a nice time with your daughter, and hope those aches

and pains leave quickly.

a

On Jun 17, 2005, at 1:24 PM, jmorob@... wrote:

> Hello Group

>

> I am new and have suffered with rheumatoid arthritis for the last ten

> years.

> It started very slowly and then came on like gang busters. I

> currently take

> methotrexate as well as enbrel but have gone through the gamut of

> medicines in

> the past. For flare ups I usually take prednisone. I still work (I

> teach) and

> there is not much time to write but I will try and offer help when I

> can.

>      One of my big problems is TMJ. I haven't heard anyone mention

> this.

> Steroid injections have helped but I pretty much have constant pain

> on the left

> side of my jaw. An MRI showed deterioration on both sides.

>      Currently, I am visiting my daughter in Seattle and over did the

> walking. I'm paying for it now with lots of aches and pain but it was

> worth it.

>

> Take Care

> Babs

>

>

>

[Guest guest]

Hi AnneMaire,

Good to have you with us. Although I have been with the group for over a year, I rarely post. I do however, depend on the group for support and strength. Sometimes just knowing that there are other people like you helps. I was DX in 2001, I was very sick in the beginning. I am much better now. I'm on Mexetrate, Remicade every 6 weeks, folic acid and prenisone. Still have some very bad days. But I am very grateful for the meds. (I can't ever spell thoses meds correctly). Hugs to you.

Rhonda amr408 <AMR408@...> wrote:

Hi,My name is AnneMarie from Pennsylvania and I just joined this group. I was diagnosed with RA about 10 years ago. I was initially treated with Rheumatrex (methotrexate), plus Plaquinil, minicycline, prednisone. All have worked at the stages I was at. I have a tendency to get infections, where some of these meds worked, following infections, they stopped working. I would develope side affects and would need another med. I've been reading some of your posts, and oh how everything sounds like me. I have been affected by RA in my hips, knees, wrists, fingers, shoulders, toes and even my jaw. I also have osteoarthritis, psoriatic arthritis,psoriasis, syrogrens syndrome, vasculitis, & raynauds phenomenom. I also was on Enbrel twice a week and I was on and off it due to infections. This past February I was started on Remicade low

dose every moth. I couldn't believe the immediate affect it had on me. The day after my first dose I started to feel better. They have had to give me Solumedrol and Benadryl with the doses because of my history with reactions, but so far it has worked. I still remain on methotrexate and low dose of prednisone. I also take folic acid. I read in one of the posts that someone had mouth sores. I ended up with sores when I started all thses treatments and my dr put me on folic acid and I really haven't had a sore since.Any way, I'm sorry for this being so long but its just that I really don't have anyone to talk to about this who knows the pain and can relate. I'm a 49 year old RN who now is disabled because of RA. I was unable to walk to do my job. I need a wheelchair to go in a store and use my chair with wheels to get around the house. It can be very depressing. I hope to find some new friends here where I can relate with and

who can understand me or where I'm coming from. Thanks for listening.HugsAnneMarie from Pa

[Guest guest]

Hi AnneMarie you didn't say, are you married, do you have children?

I know how depressing this disease is, and my sympathy is with you. I have

a suggestion and I hope you will not take offence. I have been successful

in treating my RA and my goal is to help others. One of the things that was

very difficult for me was accepting and not feeling resentful of all the

pain. What I have learned though is our thoughts are THINGS that truly

create our future. With that said, if we can be grateful for what we do

have, it's much more productive than thinking of the things we no longer

have, do you understand what I mean.

We are magnificent beings, it's amazing the things we can do. There are

many things in our lives that we should be grateful for but sometimes forget

because we have been robbed of the luxury of living without pain and

limitations. However everyday is a new day and everyday you may be closer

to a pain free day.........we will all hope and pray for that.

Dorey

www.LivingWithRheumatiodArthritis.com

----- Original Message -----

From: " amr408 " <AMR408@...>

<Rheumatoid Arthritis >

Sent: Monday, August 22, 2005 10:23 PM

Subject: I'm New

> Hi,

> My name is AnneMarie from Pennsylvania and I just joined this group.

> I was diagnosed with RA about 10 years ago. I was initially treated

> with Rheumatrex (methotrexate), plus Plaquinil, minicycline,

> prednisone. All have worked at the stages I was at. I have a tendency

> to get infections, where some of these meds worked, following

> infections, they stopped working. I would develope side affects and

> would need another med. I've been reading some of your posts, and oh

> how everything sounds like me. I have been affected by RA in my hips,

> knees, wrists, fingers, shoulders, toes and even my jaw. I also have

> osteoarthritis, psoriatic arthritis,psoriasis, syrogrens syndrome,

> vasculitis, & raynauds phenomenom. I also was on Enbrel twice a week

> and I was on and off it due to infections. This past February I was

> started on Remicade low dose every moth. I couldn't believe the

> immediate affect it had on me. The day after my first dose I started

> to feel better. They have had to give me Solumedrol and Benadryl with

> the doses because of my history with reactions, but so far it has

> worked. I still remain on methotrexate and low dose of prednisone. I

> also take folic acid. I read in one of the posts that someone had

> mouth sores. I ended up with sores when I started all thses

> treatments and my dr put me on folic acid and I really haven't had a

> sore since.

> Any way, I'm sorry for this being so long but its just that I really

> don't have anyone to talk to about this who knows the pain and can

> relate. I'm a 49 year old RN who now is disabled because of RA. I was

> unable to walk to do my job. I need a wheelchair to go in a store and

> use my chair with wheels to get around the house. It can be very

> depressing. I hope to find some new friends here where I can relate

> with and who can understand me or where I'm coming from. Thanks for

> listening.

> Hugs

> AnneMarie from Pa

>

>

>

>

>

>

>

>

>

[Guest guest]

In a message dated 8/24/2005 11:43:33 P.M. Central Standard Time, AMR408@... writes:

Hi Yes I am married to a wonderful man for 27 years. I have a 23 y/o daughter who teaches music.I think I am pretty optimistic when it comes to RA.I deal with it on a daily basis yet I don't let it stop me from doing what I want. I crochet and shop and volunteer. Being a nurse I have seen so many people worse off then me and I thank God for giving me such a good life. I'm not one to feel sorry for myself. Whatever I said to make you think that I do, I don't. I was just explaining to where I started and where I have been with RA.I hope to make some new friends here and appreciate your concern. ThanksHugsAnneMarie

I am sorta new here too.

I am 38 years old and was diagnosed with RA a year ago. I've had a roving pain and a high

ESR level since I was a kid, and was never told what the high ESR was suppose to indicate.

I started going to a chiropractor for my left shoulder in 2002 as I was having a hard time moving it and my GP wouldn't do anything for it. Went to the chiro twice a week because he conned me into believing that he could fix anything that might be wrong with me, I started developing various strange symptoms and was ill with viruses all winter of 2003.

In March of 2004 I had gotten to the point where I could no longer dress myself, turn over in bed or cut my food, or wear most of my shoes as my feet were swollen and my toes turned

purple. I was on the verge of a nervous breakdown and my employer was giving me a hard time about taking any time off. All the while I kept thinking the chiropractor had maimed me

but that I would eventually get better. Thank God for codeine cough medicine. I managed

to get 3 bottles out of a couple of doctors and Tylenol 3 w/codeine until I could get my first appointment with the Rheumatologist.

Before my first visit, his office sent a whole bunch of forms to fill out and a questionnaire.

What was strange was that I was having night sweats and had a really bad stiff neck.

That went away once he started me on Prednisone and took many, many vials of blood.

The Rheumy was hoping it was something called Reactive Arthritis or he thought it could've been Lyme's Disease, but alas, no. I did the Methotrexate and Arava thing for a while, but

kept vomiting, and wound up at the ER with vomiting from my first MTX injection.

So now I am injecting Enbrel once a week, no more MTX (I was up to 8 and felt like a zombie), have been on Enbrel for 2 weeks and am just taking Zantac for my stomach, 1 Celebrex a day, and am down to 6 mg of Prednisone a day until October when I go back to the doc. I also have severe asthma, and take 3 different meds for that a day.

Having asthma makes it difficult to exercise and chlorine pool water sets off an asthma attack, but I have lost almost all of the 20 pounds that I gained while on the higher dose of Prednisone.

Since being diagnosed with RA, I have redecorated the whole upstairs of my house (I hired a

neighbor to paint it for me though), I have moved furniture, gone miniature golfing, went on a 4 day trip to L.A. a year ago, started walking 10 blocks a day, and take life one day at a time

Since starting Enbrel, I no longer have flares, I don't take my job seriously and don't sweat the small stuff, will start working out more when the health club in my workplace opens up,

am planning more trips and I want to start taking some on-line courses.

I didn't think I would be able to give myself injections, and it is a little difficult to do, since I have such small hands, the only thing that stinks is having to keep it refrigerated.

BUT, I don't feel so bad. Diabetics have to keep their insulin cold, and have to poke themselves many more times than I do.

Take care,

Becky

[Guest guest]

Hi

Yes I am married to a wonderful man for 27 years. I have a 23 y/o

daughter who teaches music.

I think I am pretty optimistic when it comes to RA.

I deal with it on a daily basis yet I don't let it stop me from doing

what I want. I crochet and shop and volunteer. Being a nurse I have

seen so many people worse off then me and I thank God for giving me

such a good life. I'm not one to feel sorry for myself. Whatever I

said to make you think that I do, I don't. I was just explaining to

where I started and where I have been with RA.

I hope to make some new friends here and appreciate your concern.

Thanks

Hugs

AnneMarie

> Hi AnneMarie you didn't say, are you married, do you have children?

>

> I know how depressing this disease is, and my sympathy is with

you. I have

> a suggestion and I hope you will not take offence. I have been

successful

> in treating my RA and my goal is to help others. One of the things

that was

> very difficult for me was accepting and not feeling resentful of

all the

> pain. What I have learned though is our thoughts are THINGS that

truly

> create our future. With that said, if we can be grateful for what

we do

> have, it's much more productive than thinking of the things we no

longer

> have, do you understand what I mean.

>

> We are magnificent beings, it's amazing the things we can do.

There are

> many things in our lives that we should be grateful for but

sometimes forget

> because we have been robbed of the luxury of living without pain

and

> limitations. However everyday is a new day and everyday you may be

closer

> to a pain free day.........we will all hope and pray for that.

>

> Dorey

> www.LivingWithRheumatiodArthritis.com

> ----- Original Message -----

> From: " amr408 " <AMR408@a...>

> <Rheumatoid Arthritis >

> Sent: Monday, August 22, 2005 10:23 PM

> Subject: I'm New

>

>

> > Hi,

> > My name is AnneMarie from Pennsylvania and I just joined this

group.

> > I was diagnosed with RA about 10 years ago. I was initially

treated

> > with Rheumatrex (methotrexate), plus Plaquinil, minicycline,

> > prednisone. All have worked at the stages I was at. I have a

tendency

> > to get infections, where some of these meds worked, following

> > infections, they stopped working. I would develope side affects

and

> > would need another med. I've been reading some of your posts, and

oh

> > how everything sounds like me. I have been affected by RA in my

hips,

> > knees, wrists, fingers, shoulders, toes and even my jaw. I also

have

> > osteoarthritis, psoriatic arthritis,psoriasis, syrogrens syndrome,

> > vasculitis, & raynauds phenomenom. I also was on Enbrel twice a

week

> > and I was on and off it due to infections. This past February I

was

> > started on Remicade low dose every moth. I couldn't believe the

> > immediate affect it had on me. The day after my first dose I

started

> > to feel better. They have had to give me Solumedrol and Benadryl

with

> > the doses because of my history with reactions, but so far it has

> > worked. I still remain on methotrexate and low dose of

prednisone. I

> > also take folic acid. I read in one of the posts that someone had

> > mouth sores. I ended up with sores when I started all thses

> > treatments and my dr put me on folic acid and I really haven't

had a

> > sore since.

> > Any way, I'm sorry for this being so long but its just that I

really

> > don't have anyone to talk to about this who knows the pain and can

> > relate. I'm a 49 year old RN who now is disabled because of RA. I

was

> > unable to walk to do my job. I need a wheelchair to go in a store

and

> > use my chair with wheels to get around the house. It can be very

> > depressing. I hope to find some new friends here where I can

relate

> > with and who can understand me or where I'm coming from. Thanks

for

> > listening.

> > Hugs

> > AnneMarie from Pa

> >

> >

> >

> >

> >

> >

> >

> >

> >