need a different med option

February 9, 2005

Hi my name is Deanna and I am 37. I have a wonderful husband and 3

wonderful children(girl 16, boy 10 and boy 7). This past June I

suddenly got paralyzed and was in so much pain! I couldn't feed

myself, bathe myself brush my teeth and couldn't really sleep. I had

to crawl to the bathroom and then cried trying to get on the toilet.

It was horrible! It actually started in my top right foot and middle

finger on right hand. I had taken my kids to the movie and when we

got up to leave I couldn't hardly walk. It scared me to death!

Anyway, after many blood tests and x-rays the nurse called to tell me

I had RA and needed to get a referrel to a Rheum. I haven't been to

see one yet because my husband had lost his job the same day

sooo....I was put on pred. and celebrex and about 5 other meds. I'm

down to just celebrex.

I want to stop taking it because it scares me about the links with

heart problems. I don't want to be bed bound again but does anyone

take any all natural stuff? Is there a such thing? Also, I am a

teaching assistant with a kindergarten class. So I can't get stiff

like that again. I love this support group and look forward to all

the emails. Thank you so much!

February 9, 2005

Hi Deanna,

My name is and I just joined a short time ago. My grandmother

has a rhematologic disease and I want to be able to support her however

I can.

I can't imagine how frustrating that must be to be in so much pain.

And drugs aren't the most fun either. How bad is your RA. Some of our

patients have had success with Capsaicin cream which can be bought over

the counter. Don't quote me on this, but I think it has the same

active compound as chili peppers so sometimes can cause burning,

redness, but certainly worth a try if your RA isn't really severe.

That's the only natural therapy I'm aware of. I just wanted to comment

on the celebrex issue too. Do you have any problems with your heart

now? And how much are you taking each day? I ask because the studies

that showed possible effects on the heart were done with 800mg daily

and the majority of people don't take that high of a dose. And you're

young too. Do you find it helps?

February 10, 2005

Zostrix was the prescription name for Capsasian, and is made with peppers. I

was offered the chance to be in a study when it was new, but I had to turn

it down. My pain wouldn't stay in one place long enough to treat it with

that cream. Tests had shown that it took up to 6 weeks to tell a difference.

From my perspective, it didn't look like a good treatment for me.

On the topic of side effects, I've read lists of them for many drugs, but

haven't seen percentages discussed. I think most people see that list and

immediately get up in arms over it. A drug with a .01% side effect is a good

drug, but most just see the words. Am I right or wrong?

Dennis

Re: [ ] need a different med option

>

> Hi Deanna,

> My name is and I just joined a short time ago. My grandmother

> has a rhematologic disease and I want to be able to support her however

> I can.

>

> I can't imagine how frustrating that must be to be in so much pain.

> And drugs aren't the most fun either. How bad is your RA. Some of our

> patients have had success with Capsaicin cream which can be bought over

> the counter. Don't quote me on this, but I think it has the same

> active compound as chili peppers so sometimes can cause burning,

> redness, but certainly worth a try if your RA isn't really severe.

>

> That's the only natural therapy I'm aware of. I just wanted to comment

> on the celebrex issue too. Do you have any problems with your heart

> now? And how much are you taking each day? I ask because the studies

> that showed possible effects on the heart were done with 800mg daily

> and the majority of people don't take that high of a dose. And you're

> young too. Do you find it helps?

>

February 11, 2005

Hi Dennis,

Yes, I think you're right - and what scary reading they make. I know the

manufacturers are obliged by law to list all possible side-effects - and even

things which have happened to people while on clinical trials which are most

probably quite unrelated to the treatment in question. Some data sheets do give

an indication of the percentage of patients who suffer from this or that

problem. I live in France and my Enbrel data sheet gives the incidence of the

various recognized side-effects in terms of more than 10%, 1-10%, 0.1-1%,

0.01-0.1% and less than 0.01%. I think this is very helpful but it doesn't stop

you getting hypochondriac about it. After I started on Enbrel, I thought I had

every serious side-effect in the book and was worried sick. Then I said to

myself, look you have wanted for ages to try this treatment, you've had to jump

through all the hoops to get it, the health system is paying for it and it's

working for you. This is a wonderful opportunity, so why spoil it by worrying

about every slightest thing and seeing catastrophe averywhere. So I stopped

worrying, started enjoying life again and am doing really well. I know that

won't necessarily prevent me getting a side-effect, but at least I'll be making

the most of my life in the meantime.

Best regards,

n