Orencia - Response for Heidi

[Guest guest]

Heidi:

 

I was also diagnosed with sleep apnea (I have RA, fibro & Sjogren's Syndrome)

and use my c-pap FAITHFULLY.  I could not function without it now.  It made a

big difference to me.  Getting restorative sleep also helps with pain.

 

I had previously tried both Enbrel and Humira.  Neither worked for me.  I

started Orencia in mid-March and it is helping me.  It was my 2nd infusion

before I noticed any positive difference.  I have already had my 3rd infusion

and will be getting my 4th at the end of May.

 

My RA has been very aggressive and I have literally tried almost every drug

available.  (The only ones left are Remicade, Kineret and Rituxin.)  I have been

on " triple therapy " with methotrexate, plaquenil and sulfasalizine for quite

awhile now, but was still having too many flares (I'm still working full-time)

and missing too much work.

 

I am sorry to hear that you had to stop taking methotrexate.  It is my

" base-line " drug - it has kept me going up to this point.  I am curious as to

why you had to stop taking it.  I know that some people (such as myself) get bad

side effects from the pill.  I had to switch to injections, which got rid of my

problem with side effects.

 

Orencia has been an answer to prayer for me.  I have not had any side effects

from it, either.  And, along with less pain/inflammation in my joints, I have

gained back some energy.  I feel better than I have felt in at least a year. 

Don't get me wrong, I still have some pain/inflammation in my joints, but I am

so much better off than before Orencia.  It is worth trying, in my opinion.  The

worst thing that can happen is it does not work for you.

 

Wishing you the best,

 

in Texas

 

P.S.  Be sure to check out the Orencia website.  They have a promise pay

program.  I was one of the first to get on it.  They cover my out-of-pocket

costs for the drug.  All I pay is about $50 per infusion to have it

administered.  My insurance and promise pay covers the rest.  You have to get

with your doctor to set it all up.  The info. is on the website.  Unfortunately,

it is only for those who have private insurance.

From: Heidi Mendelsohn <hmendelsohn@...>

Subject: [ ] Orencia

" " < >

Date: Tuesday, May 12, 2009, 5:50 PM

Hi y'all

I saw my Rhu today and he wants me to consider Orencia. I had to stop the

MTX and even though Humera seems to help my knees my hands are worse then

ever. Does anybody take it or have good/bad feedback. I still have 2 months

of Humera left so I want to finish that. I was diagnosed with sleep apnea

and he feels like I will get some energy back after wearing the c-pap or

bi-pap whichever I have to get. I have the 2nd sleep study done the 20th. So

let me know if anyone knows the drug.

Thanks Heidibug