Re: Hi future friends/supporters of RA

[Guest guest]

Hi Sunshine,

Sorry to hear you are hurting. Just to let you know when I was coming off of

Enbrel and starting on Humira I began a nasty RA flare because nothing was

working for me at that point. Once the Humira was fully in my system, maybe

a couple of months, I did have great improvement, so don't give up!

Also, I recommend to you another wonderful website and message board,

originally given to me by Harold:

http//:www.butyoudontlooksick.com

Not sure if I did the link right, but you can find it. It really helps support

those

of us who don't look sick, but are!

Good luck!

> I'm finding it very interesting reading all the messages. It makes me

> feel more human and that there are people out there that understand! I

> was diagnosed with R.A. 2 1/2 yrs ago. On top of that I was also

> daignosed with diabetes and liver disease. The liver disease is now

> under control but I can't take the normal meds because they can cause

> liver problems.

>

> So I'm the experiment as one doc told me. I'm currently on Humiri and

> Imuran, taking ibuprofen during the day, and pain meds at night if

> needed. Prednisone is not good as it makes your blood sugar rise but I

> have taken it and it does make the pain go away, but I can't take it

> for long or I'll end up messing up my other organs. It is also bad for

> bone mass and does make you gain weight, usually your face will pumpkin

> out.

>

> I still have pain somewhere every day, just some days are better than

> others. I've learned to live with it most days. Without the meds, I'd

> probably be disabled, as 2 years ago, I could barely walk, dress, or

> start my car, let alone walk to work without tears.

>

> This last month has been rough, not sure it is the change in weather

> patterns or medicine changes since I just switched from Enbrel to

> Humira 2 months ago, but my wrists feel like someone took a sledge

> hammer to both of them this weekend. Without your hands, you are

> pretty much useless. So let's just say I was in bed almost all

> weekend, worrying if I'd be able to make it into work or not today.

> But I made it! And I feel much better, thank God! As I had lost one

> day last week.

>

> I'm glad to hear others stories and wish all the best with this

> terrible disease. I hope someday they find a cure or some better meds

> that aren't so expensive and can keep us working and healthy!

>

> So Jenni - eat some chocolate for me okay and take care! I'm so sorry

> for all your pain. I feel for the children who have this terrible

> disease and only glad it happened to me at this age rather than

> earlier. How long have you had it?

>

> You have just told me my worse fear, that I might have to be dependent

> on family or someone else in the future, which scares me a lot as I've

> always been independent and don't have anyone to take me in, my parents

> have their own health issues. I have already been told by a few men

> that they can't handle my health issues. But they ask me out, as I

> look just fine, but when I tell them about my RA and diabetes, I'm

> history.

>

> That's my life.

[Guest guest]

Thanks for the feedback! I'm doing better now. I'm going

to keep optimistic and hope the Humiri keeps working better and

better for me. I seem to be in less pain now, more energy and in

better spirits at least.

Thanks for the web site - it didn't appear there were very many

members though.

What I hate about this disease, is that I have everyone trying to

tell me to stop taking all this medicine! They are either those

naturopathic folks, accupuncture, home remedies, which I've asked my

doc about and she just laughs. She told me accupuncture will not

help RA patients and that they have some of the articles about

miracle cures on their bulletin board out of national enquirer.

So sometimes I don't know how to answer these folks. I'm doing what

my rheumy has told me. It took over a year just to get diagnosed

correctly and once I saw her I was out of pain within 24 hours,

although that was the Prednisone, and I had to quickly turn to other

meds because of my diabetes. But SHE was the only one who helped

me. Now why would I want to try something else? Sure, I still

experience some pain every day - but it is nothing like 2 years ago,

when I thought I was going to be disabled for the rest of my life.

Does anyone have any suggestions? My rheumy is one of the best in the

state.

Nichol: I would call your PCP right away and tell them your problems

with those meds. They need to report your adverse reactions to the

drug company. Ask them about trying Prednisone till you have time to

see your rheumy at least. It helped me within 24 hours - I was back

to work the next day. But that doesn't work for everyone, and like

you have read, you can get weight gain or not, you face can pumpkin

out, or not. We are all different on all this treatment

unfortunately. And if they do prescribe it, take it exactly like the

doc says as it can cause problems if you don't. It takes time and

patience and lot of support!

Good luck and God Bless

Sunshine