Orencia anyone?

[ouchyk]

Hi,

I'm looking to change my meds in October.

I can have Remicade or possibly Orencia, right now leading toward Orencia but afraid my insurance co will not rx off label, although they have in the past for Humira, but that was already on our way to us in the pipeline and very close to being approved. Remicade should not be an issue as far as rx.

soooooooooo, anyway wondering who if anyone has tried this?

I called Bristol-Myers Squibb yesterday and inquired, not in clinicals as far as we could tell. I'm not a candidate for clinical anyway due to other issues, but I think it would be helpful for many to have it available.

I wonder why is it that our medications are not simultaneously brought forward with RA?....my feeling is that clinicals should be done side by side with other inflammatory arthritis and approved at the same time as well.

Anyway, if anyone has used this medication off label please post and let me know how your doing with it.

Thanks, have a great day!
Karen

www.orencia.com for more information.

[alli]

Karen,
Can't help you out with any personal experience, but I was just discussing this drug the other day with someone. Seems Orencia helps RA patients who have not found relief with Humira or Enbrel. It's effect on the TNF factor is different.
Have you checked out any message boards specific to RA ( they must exist on the web somewhere)? Maybe you can find some people who are using the drug.

Good Luck,
Alli

[ouchyk]

Actually,

Yes, I have. Not many people post about it though, its a fairly new drug and tons of people do so well on the standard TNF's that they dont need it.

I did read some posts here. However those who were looking into it haven't posted in a while, so I was hoping either they are reading and will post their experience or someone new will come along who has had it.

I'd really like to give it a whirl. :)

Karen

[Saxmom]

My rhuemy wanted to start me on this back in late April, early May, but he got SO disgusted with the company that he decided to not deal with them until they have been in the market a bit longer and finally have their act together. He was having trouble with them getting back to him with all the necessary preliminary forms.

Good luck if this is the way your doc chooses to go. Maybe by now they know what they are doing and they finally have enough of the me to go around.

Paige

[ouchyk]

Thanks Paige.

I was really surpised to hear nothing in clinicals for PA that the phone rep or I could find. I would think that would be helpful in demonstrating efficiency & of RX off label? Maybe they haven't updated their site for clinicals?

Not sure what if any difficulties my rheum has run into for his patients on Orencia. He didn't mention it.

Hopefully they will get their act together soon, not into merry-go-rounds myself.

Karen

[Imahandfu1]

Greetings all:

I am very new to this site - and actually to any site dealing with my R.A.

For the past six or so years, I have been on Remicade, which has worked remarkably well. With me, it seems, the Remicade just wears off too early - sort of like my body building a tolerance to the medication. The following are the ways that I have taken Remicade:

Beginning:
3 vials, progressively graduating to 6 vials at regular intervals of 6 to 8 weeks.

Middle:
5 Vials every 4 weeks.

And Now:
Since Remicade has been beneficial, but we can not decrease the frequency between infusions my doctor is starting me on Orencia (3 vials).

I am hoping to find someone else who has taken Orencia so that we can compare notes.

I received my first infusion September 8 and am due for my next "loading dose" this Wednesday, September 20.

Good luck to everyone out there looking for ways to make your lives better. If you have experience with Orencia, please contact me. I would greatly appreciate a conversation.

Mary

[RichJ]

hi mary,
welcome to the p family and you have met some of the wonderful people on here and will find alot of great info. welcome and nice to meet you.

have a good day all

richard

[easydoesit]

I just saw an ad for Orencia on TV. I have never heard of it before so I decided to search the board and found this thread.

Has anyone with PA tried it?

[ouchyk]

Hi,

Well it's my understanding that the reason that orencia and rutaxin are not RX'd for PA or in clinicals is..........it doesn't target the right cell line or something like that...I forget now it's been a while. RA although very much alike in many ways, is different, and not all the meds meant for RA will work for PA, that said of course MANYwill.

sooooooooooooooo, my guess we won't see many folks using it for PA?

Karen