New to Group

[Guest guest]

Biologics like adalimumab are just one in a series of drugs that interfere with the inflammation process chain reaction of RA and other diseases. They bind to cellular chains and stop the domino effect. All these meds were found and researched because of the strong HIV research back in the 90s. Stem Cell research offers great hope for the future providing a cure but I dont know if it will happen in our lifetime. I am on Remicade 7 years now with an infusion every 8 weeks. Some months are better than others. I take other support meds and eat a very healthy diet avoiding weight gain. Its all about the quality of life these drugs provide and the decision to take them to improve our mobility and reduce our pain. Hugs, Deborah

On 12/27/06, smartdog_8 <smartdog_8@...> wrote:

Hi new to group so thought I should introduce myself. I'm from new zealand and was diagnosed with RA when I was 32, 15 yrs ago. Have been on NSAIDS (brufen) all that time, as well as methotrexate (3yrs, took myself off it, not a nice drug) and now am trying salazopyrin EN and prednisone. I'm interested in others experiences with these new drugs I'm on as although they are helping, it's not a lot better than the brufen by themselves. So would welcome others opinions on these drugs and any pros and cons associated with them. I'm also researching the drug treatment Adalimumab as I have heard good things through the grape vine. In New Zealand it's not a subsidised drug and costs $20,000 a year, but I heard that it is effective and after one years treatment some people stay in remission without further treatment. I think

support groups that offer advice and information from the patients view are invaluable, as they offer insights other than health professionals. Thanks smartdog_8, hope everyone had a nice xmas, I'm looking forward to the new year hope ya have a good one too.

[Guest guest]

Hi,

I am Gloria from Oklahoma. I have found this support group very

helpful. Just knowing that there are other people out there with the

same problems, yet different stages of the disease. I thought that I

was crazy until I joined.

Sometimes, we just get jokes or the weather or news about new

babies, but I really enjoy that.

Stay well,

Hugs from Ok.

> >

> > Hi new to group so thought I should introduce myself. I'm from

new

> > zealand and was diagnosed with RA when I was 32, 15 yrs ago.

Have been

> > on NSAIDS (brufen) all that time, as well as methotrexate (3yrs,

took

> > myself off it, not a nice drug) and now am trying salazopyrin EN

and

> > prednisone. I'm interested in others experiences with these new

drugs

> > I'm on as although they are helping, it's not a lot better than

the

> > brufen by themselves. So would welcome others opinions on these

drugs

> > and any pros and cons associated with them. I'm also researching

the

> > drug treatment Adalimumab as I have heard good things through

the grape

> > vine. In New Zealand it's not a subsidised drug and costs

$20,000 a

> > year, but I heard that it is effective and after one years

treatment

> > some people stay in remission without further treatment. I think

> > support groups that offer advice and information from the

patients view

> > are invaluable, as they offer insights other than health

professionals.

> > Thanks smartdog_8, hope everyone had a nice xmas, I'm looking

forward

> > to the new year hope ya have a good one too.

> >

> >

> >

>

[Guest guest]

Welcome to the group. I think I know

Brufen by the name Ibuprofen, and Adalimumab by the name

Humira. Salazopyrin is also known as Azulfidine or Sulfasalazine. Brufen

is a pain reliever and not really a drug that helps RA except for symptomatic

relief. Both Adalimumab and Salazopyrin are real RA drugs that are

supposed to slow or stop the permanent joint damage that can come with

RA.

In the US

most people with RA are put on Methotrexate weekly with daily Folic Acid to

reduce side effects. Also people usually have fewer side effects with

Methotrexate by injection instead of by pills. Coping with side effects

of Methotrexate is often a problem but for many the help with RA outweighs the

discomfort of the medication. It often takes many months to really realize

the benefits of Methotrexate so I hope you don’t give up on it without

giving it a good try.

I’m doing pretty well on Methotrexate and Remicade.

Remicade is similar to Adalimumab but given by IV instead of injection. I

have been on this for about three years and still need the same

medications. From what I have heard most people on Adalimumab or similar

medications need to stay on them and only get remission by staying on the

medications. I hope you are one of the lucky ones who does go into

complete remission after a year or so. God bless.

From: Rheumatoid Arthritis [mailto:Rheumatoid Arthritis ] On Behalf Of smartdog_8

Sent: Tuesday, December 26, 2006

8:48 PM

Rheumatoid Arthritis

Subject:

New to group

Hi new to group so thought I should introduce myself.

I'm from new

zealand and was diagnosed with RA when I was

32, 15 yrs ago. Have been

on NSAIDS (brufen) all that time, as well as methotrexate (3yrs, took

myself off it, not a nice drug) and now am trying salazopyrin EN and

prednisone. I'm interested in others experiences with these new drugs

I'm on as although they are helping, it's not a lot better than the

brufen by themselves. So would welcome others opinions on these drugs

and any pros and cons associated with them. I'm also researching the

drug treatment Adalimumab as I have heard good things through the grape

vine. In New Zealand

it's not a subsidised drug and costs $20,000 a

year, but I heard that it is effective and after one years treatment

some people stay in remission without further treatment. I think

support groups that offer advice and information from the patients view

are invaluable, as they offer insights other than health professionals.

Thanks smartdog_8, hope everyone had a nice xmas, I'm looking forward

to the new year hope ya have a good one too.

[Guest guest]

Hi I am new here, I don't think I have ever posted but I have read

all the posts for weeks. I was recently diagnosised with RA. My

worst complaint at this moment are my hands, toes, knees and ankles.

The ankles are new to the party. At night, my muscles start cramping

very badly in my legs, especially if I have been driving or doing a

lot of walking. I have tried wearing all different kinds of shoes

but nothing seems to make a difference - if I walk or drive, I will

get the cramping regardless. My doc put me on predisone and one

other drug, and wants to wean me off the predisone. I see him next

week for a check up. I also have carpel tunnel in both hands and

there is a suggestion that I should have surgery. I am a bit

concerned because I have know others who had the surgery and came out

worse instead of better. Has anyone here had the surgery for carpel

tunnel and if so, how did it go?

Also, I was wondering if weather is ever a factor in the presentation

of symptoms. It has been very cold here and I am very stiff, but

overall it does not seem to alter my level of pain one way or

another. I do however, experience more pain when I engage in " more "

physical activity than normal. Is all of this typical?

Thanks for you input -

[Guest guest]

Hello , I had carpal tunnel operation on my right hand approx 3 years ago and the relief was immediate. I had my first proper night's sleep for months and could not believe the wonderful improvement. I am going to my other hand done soon as I am having the same symptoms in that one now. Of course, you have to be careful post op. and do the exercises prescribed by the physio., but about 2 weeks after my op I was in the greenhouse planting seeds and potting up plants ! I found it very useful to wear a wrist support for a few weeks after, and did not drive for approx 1 month after surgery. I only have a very tiny scar now and had no problems with infection either. I find my hands are very much worse in the cold weather (as are all my joints) and I wear very warm gloves and dress warmly when bad weather. Here in UK where I live we are enjoying a very mild

winter (down to global warming we are told) so hands not too bad at the moment. warm wishes from Lynda <littlerockfae@...> wrote: Hi I am new here, I don't think I have ever posted but I have read all the posts for weeks. I was recently diagnosised with RA. My worst complaint at this moment are my hands, toes, knees and ankles. The ankles are new to the party. At night, my muscles start cramping very badly in my legs, especially if I have been driving or doing a

lot of walking. I have tried wearing all different kinds of shoes but nothing seems to make a difference - if I walk or drive, I will get the cramping regardless. My doc put me on predisone and one other drug, and wants to wean me off the predisone. I see him next week for a check up. I also have carpel tunnel in both hands and there is a suggestion that I should have surgery. I am a bit concerned because I have know others who had the surgery and came out worse instead of better. Has anyone here had the surgery for carpel tunnel and if so, how did it go?Also, I was wondering if weather is ever a factor in the presentation of symptoms. It has been very cold here and I am very stiff, but overall it does not seem to alter my level of pain one way or another. I do however, experience more pain when I engage in "more" physical activity than normal. Is all of this typical?Thanks for you input -

[Guest guest]

Hi , Welcome to the group. Apparently, has been having group problems (i.e your post was dated 1/23 but I just received it today, which is 1/28). Anyway, I'm Steph in VA. I'm 29 and was dx'd with RA in 1999 when I was 22. Are you seeing a rheumatologist? What state are you in? I haven't had carpel tunnel surgery. I certainly notice a difference with weather, especially cold. When there is an increase in barometric pressure, my joints hurt too. I can predict weather better than the weatherman when it comes to

snow! Take care, Steph in VA <littlerockfae@...> wrote: Hi I am new here, I don't think I have ever posted but I have read all the posts for weeks. I was recently diagnosised with RA. My worst complaint at this moment are my hands, toes, knees and ankles. The ankles are new to the party. At night, my

muscles start cramping very badly in my legs, especially if I have been driving or doing a lot of walking. I have tried wearing all different kinds of shoes but nothing seems to make a difference - if I walk or drive, I will get the cramping regardless. My doc put me on predisone and one other drug, and wants to wean me off the predisone. I see him next week for a check up. I also have carpel tunnel in both hands and there is a suggestion that I should have surgery. I am a bit concerned because I have know others who had the surgery and came out worse instead of better. Has anyone here had the surgery for carpel tunnel and if so, how did it go?Also, I was wondering if weather is ever a factor in the presentation of symptoms. It has been very cold here and I am very stiff, but overall it does not seem to alter my level of pain one way or another. I do however, experience more pain when I engage in "more" physical activity than normal. Is all of this

typical?Thanks for you input - .

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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[Guest guest]

Dear - Joint Protection is key. The usual activity will inflame your joints because you are compressing them. You have to address joint destruction from this disease. Namely, discuss a biological agent with your Doctor. If you havent seen a rheumatologist, you need to. You can get all the information you need at www.arthritisfoundation.org along with information for finding a local arthritis foundation chapter office and group support. You need to lay off caffiene and salt. You need to stay hydrated. Your muscles are cramping because they are guarding (tightening) to protect your joints in the areas you use most. Addressing your pain first means reducing inflammation at the cellular level via a biologic. This is a very aggressive disease so you need to be aggressive with your treatment. Fibromyalgia and chronic fatigue usually go hand in hand with a connective tissue disorder and autoimmune disease so expect to feel tired once you are down off prednisone. With a good regimine of medication along with diet and life style modification your disease can become manageable. Carpel Tunnel surgery with anything other than a laser will mean adhesions and even more problems down the road. Eliminating the wrist trauma associated with carpel tunnel can help alot. I have used Ace brand wrist braces which are just compression bands with velcro ties. You can make them as tight as you want to immoblize your wrists. Use ice or heat there when you are in alot of discomfort and refrain from leaning your wrists on hard surfaces. Get a gel or Buckwheat husk wrist pillow if using a computer mouse. Electromuscular stimulation therapy can help in this area. Seeing a physical therapist can also be beneficial. If you have other concerns I havent addressed, please email me off list. Yours, Deborah in Maine. RA since 1994.

On 1/28/07, DeNicola- <stephdenicola@...> wrote:

Hi ,

Welcome to the group. Apparently, has been having group problems (i.e your post was dated 1/23 but I just received it today, which is 1/28).

Anyway, I'm Steph in VA. I'm 29 and was dx'd with RA in 1999 when I was 22.

Are you seeing a rheumatologist? What state are you in?

I haven't had carpel tunnel surgery.

I certainly notice a difference with weather, especially cold. When there is an increase in barometric pressure, my joints hurt too. I can predict weather better than the weatherman when it comes to snow!

Take care,

Steph in VA

<littlerockfae > wrote:

Hi I am new here, I don't think I have ever posted but I have read all the posts for weeks. I was recently diagnosised with RA. My worst complaint at this moment are my hands, toes, knees and ankles. The ankles are new to the party. At night, my muscles start cramping very badly in my legs, especially if I have been driving or doing a lot of walking. I have tried wearing all different kinds of shoes but nothing seems to make a difference - if I walk or drive, I will get the cramping regardless. My doc put me on predisone and one other drug, and wants to wean me off the predisone. I see him next week for a check up. I also have carpel tunnel in both hands and there is a suggestion that I should have surgery. I am a bit concerned because I have know others who had the surgery and came out worse instead of better. Has anyone here had the surgery for carpel tunnel and if so, how did it go?

Also, I was wondering if weather is ever a factor in the presentation of symptoms. It has been very cold here and I am very stiff, but overall it does not seem to alter my level of pain one way or another. I do however, experience more pain when I engage in " more " physical activity than normal. Is all of this typical?

Thanks for you input -

..

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

" Never underestimate the power of a small, dedicated group of people to change the world -- indeed, it's the only thing that ever has. " (Margaret Mead)

AmeriCorps Alums -- We're Still Getting Things Done

Check out the all-new beta - Fire up a more powerful email and get things done faster.