Re: Suggestions/someone to listen!

[Guest guest]

Roxanne,

Welcome to the group, although I'm sorry you have to join us. It

sounds like you're at least on the road to getting some good medical

assistance and treatment.

There are many different drugs for RA - often the docs will start you

off with some of the older standards (methotrexate, plaquenil, etc)

to see if you respond. These are a lot cheaper then the newer drugs,

and for many people are all that they need. However, if they don't

control things well enough for you, then they often turn to the

biologic agents - Remicade, Enbrel, Humira and Kineret. All of these

are quite expensive, since the medication is actually a molecule that

has to be grown rather then a bunch of chemicals mixed together. All

of the drugs have side effects - some more than others, and they

impact some people more than others. However, the other option is to

live with uncontrolled RA, which causes pain, fatigue, and permanent

joint damage.

One of the things I personally find most difficult to deal with when

my RA is out of control is fatigue. Your immune system is working

overtime - although unfortunately it's attacking the wrong thing.

You need to be able to find a balance between rest and activity. I

know that's not easy with a young child - my son was 4 when I was

diagnosed.

Do you have disability insurance through your employer? You may have

to take a leave from work (at least for awhile) to get things under

control. Don't be afraid to talk with your doctors about it - they

may or may not suggest the idea, but will often be supportive if you

bring it up. While SSDI is a possibility, the standard of disability

that you have to meet to qualify is often higher then for coverage

through your employer, and it can take a long time to work through

the process.

Hope this helps - when you have questions or need to 'talk', just

post on the board, and someone will answer.

Beth

--- In Rheumatoid Arthritis , " Roxanne " <roxs_98@y...>

wrote:

> Hi Everyone, I'm new to the group and wanted to knoww what I should

> do next!I started having alot of pain 2 yrs ago, shortly after

> having my daughter... I just pushed it off to work realted injuries

> and muscle pulls(I'm a LPN) ... Mine started in my shoulders I use

> to find it really hard just to lift her.. then it moved to my toes

> and feet and for a long long time it really hurt just to walk..

> Then it moved to my fingers and my hands some of my knuckles got

> really swollen and out of shape and painful, then it moved to my

> knees..... one thing after another. After it got to my knees

> everyone got after me to go to the doctor. Unfortunately our family

> dr had left and there was no one to replace with.. so I went to the

> walk in clinic they offer she sent me for x rays and put me on

> artortec. At the time the xrays didn't show anything so no one

> phoned me about anything .. so a while later I broke out into a

rash

> and had to see the dr again luckily enough I got the same dr..

she

> then suggested physio.. I said I would try it... I went to physio

> and they said there was no injury but they noticed the

> fluid/swelling and heat that I was mentioning in my knees and toes

> and hands.. they then wrote a letter to a dr at this clinic and I

> went back to walk-in clinics again! This time I got a really good

> dr.. sent me for bld. work right away .. and more xrays this time

> the xrays showed systemic dengeneration in my hands and the bld.

> work at first seemed to be a chance of Lupus. Futher testing of my

> bld. work showed it wasn't Lupus so she phoned a rhematologist and

> got me in to see one within days.. She assessed me and said she

> thought it was psoriatic arthritis b/c of the way my fingers and

> toes were appearing... She put me on 7.5 mg metotrexate and 2.5

> folic acid and 100 mg froben bid .. that worked for a while... but

> it still ended up getting worst... that was in July by August 2003.

> Septemeber I ended up off work for 6 weeks. I couldn't do anything

> anymore they incresed my metho to 15mg and still froben 100 mg

bid

> and 1 mg folic acid. Then sent me to see another rhemy in

> november... he gave me injections in my elbow and wrist he thinks

> that I have rheumatoid arthritis. He was concerned as they

increased

> my metho wrong so I had to wait another 6 weeks to see if that was

> going to work this time... For a 3 week period I never had a pain I

> felt like a new person.. It was great! But it didn't last long. I

> saw him again on the 3rd feb and nothing seems to be workiong so

> now I have to be admitted to the Rhemuatic Disease Unit in the city

> 4 hrs away from home without my daughter to be assessed so they

can

> start giving me injections everywhereand rest. So I am waiting to

> go there araound the 1st of March.. And the possibility of starting

> Enbrel. I'm not totally sure I like the sounds of the side effects

> of the drug.. Can anyone offer any suggestions as to what they are

> finding good? And of course there is also the cost the Dr is saying

> Enbrel is going to cost.. It seems to be one thing after another!