Newbie

[Guest guest]

Hello,

I have been a lurker for a while and can't remember if I posted before or

not. I was Dx'd about 18 months ago with RA and OA, then shortly after that

Fibromyalgia. I suffered for almost 3 years before I got a diagnosised. My

family

doc seem to miss my unsually high sed rate for years as it continued to

climb. When he finally did notice it he said I must have bumped or bruised

myself

or had a little something going on. Needless to say I have a new doc that is

excellent.

It has been a constant struggle to try to get stable. More failure than

seccess so far.

I am on Enbrel, MTX, prednisone, Bextra, calcium, magnesisum, zinc and Vit-E.

The only pain med I have is Ultram and I had to beg for that. Darvocet n-100

which was left over from some surgery I had a year ago. And a bunch of

arthritis rubs he has recommended I try for pain.

I started on Arava which was successful for a year then stopped working. So

my doc started me on MTX pills. The side effects were horrible. I was so

nauseated and sick. He stopped it for a few weeks and the pain was terrible so

we restarted with injections. I still get some side effects but not nearly has

bad as with pills.

This is my 12 week of enbrel and so far no real changes. I have less

fatigue the morning after my shot but no relief in pain or stiffness. I am off

of

Enbrel for two weeks cause I ran out of meds and out of money. I will be

restarting soon.

I am so shocked at what all these meds cost! How do you out there afford all

these meds??? I have been out on medical leave without pay from work. I

have a six month wait for long term disability.

Everytime I think I am getting better and hope to go back to work something

goes wrong and we are starting all over again. Its so depressing and

disruptive. How do you live with the unexpected flares??

I had to beg for handicapp plackard and the best my doc would do was write

for 6 month temp plackard. I am not pleased with my rheummy doc but I have no

choices. This is the only doc within a 100 miles that accepts my insurance so

its him, no one or pay out my pocket. I can't afford that with no income!

He also does not give out any samples even if you ask. He also is not a good

listener. I have a baker's cyst behind my right knee the size of an orange.

I told my doc how painful it was and he said just take more prednisone for 4

weeks and come back to see him then. This darn thing hurts!!! He said he

didn't want to inject it cause the injection would hurt. I think he was just in

a hurry and didn't want to spend the time!

I have been complaining about my eyes being sticky and painful after sleeping

for months now and he has ignorred that too. I want to know if maybe some of

my meds have dry eyes as side effect. He just told me buy tear replacement

drops from pharmacy and I should be fine. These drops don't work and my eyes

are so dry it feels like glass or something in my eye most of the time and my

vision is getting blurry from time to time.

I am so frustrated with this disease and the doctors! I wonder if you ever

get a remission or does this go away? I don't think I can live the rest of my

life this way! I am 38 with two teenage children. I am seriously

contemplating stopping all meds to see what happens.

thanks for listening.

Toni