Re: Orencia any one?

[Guest guest]

I will get my 12th orencia treatment on Tuesday. Yep, one a month for the last year. I didn't get any relief at all until about the 6th month. Now I get pretty good relief for about 3 weeks. Then its pure hell for the remaining week until infusion. Which is where I am now. If I didn't take Orencia, I would not be able to work. I tried Enbrel with great successs, but then my body sort of became 'used' to it, and it ceased to be effective. Then on to Humira, and it did nothing. I tried Rituxan and had a whale of a reaction, I couldn't breathe, and was sick for a week after that. I'm so sick of this stupid disease.

--- Original Message -----From: <kwendt@...>Date: Friday, November 21, 2008 17:33Subject: Orencia any one?Rheumatoid Arthritis > Hi,> I've not been on Orencia very long. On my third treatment I had a> terrible "consequence or reaction" and ended up in the ER the next> day. I had extreme "flu like" symptoms and was told I had noro virus.> Rather suspicious since this virus is extremely contagious and my> husband took care of me and never got it.> The next treatment I ended up with "shingles neuralgia" in my right> leg so bad I couldn't walk. Conventional pain meds wouldn't > touch it -> had to be put on Gabapentin which is almost as bad a drug as > what it's> supposed to treat.> To make a long story short . . . I also had a sharp rise in blood> pressure when I was taking Remicaid. Humira didn't touch my RA.> Now I can no longer afford the HUGE copays anyway so even if I wasn't> tired and SICK of the pharmaceuticals which are supposed to help > - I'm> done.> I'll now try to take some vitamins, minerals and healthy supplements.> No longer want to be a human "rat test" for these extremely wealthy> drug companies.> Thanks,> K> >

[Guest guest]

Dear K- I am sorry you are having such tough reaction experiences. Let me say that I have been on Remicade since 2000. Rituxan or the new Interlukin-6 meds are the only new things I have left in my arsenal. Your symptoms seem very severe. When I first was diagnosed I was put on Cyclosporine (a simple soil fungus) used to treat transplant rejection and it worked well. Its taken via a pill. It has TNF binding properties along with anti malarial. Its an old standby but it may provide relief. You might also want to try naltrexone which is a beta endorphin used to treat withdrawal symptoms which they are finding great application in auto immune disorders. I decided after understanding how easily RA can destroy your mobility and function as well as so severely affect quality of life, I made a conscious decision to advocate and research to know as much as the doctors did. That empowered me alot. I have been on every medication known for RA except Ridura. Chemotherapy drugs, Experimental drugs. I was never in a test trial. I never had to be. Cyclosporine along with MTX worked until the biologic came along. What I can tell you is that sometimes when you take something to alter or modify your disease, your body will just not cooperate. Alot of times which I found in my experience, they didnt dose me correctly. They infused me too quickly just to get me in and out. I made them stop that and now they go dead slow so my reaction is minimalized. I have had Noro twice. I had to get IV fluids both times as well as anti biotic. You might also try Colloidal Silver. It has to be strong though. Atleast 250 ppm's (parts per million). or higher. It removes the enzyme that lives in bacteria to cause infection. I take two dropper fulls twice a day. There is no taste. You can take it straight or add to water. It works on cuts, oral wounds in the mouth, ( I cut my lower gum in half and I used a dropperful and let it sit in my mouth a while. They next day the cut was gone and just a small red spot remained. I got my natural path colloidal through amazon.com just in case you are interested. Yours, Deborah.

On Mon, Nov 10, 2008 at 12:55 PM, <kwendt@...> wrote:

Hi,

I've not been on Orencia very long. On my third treatment I had a

terrible " consequence or reaction " and ended up in the ER the next

day. I had extreme " flu like " symptoms and was told I had noro virus.

Rather suspicious since this virus is extremely contagious and my

husband took care of me and never got it.

The next treatment I ended up with " shingles neuralgia " in my right

leg so bad I couldn't walk. Conventional pain meds wouldn't touch it -

had to be put on Gabapentin which is almost as bad a drug as what it's

supposed to treat.

To make a long story short . . . I also had a sharp rise in blood

pressure when I was taking Remicaid. Humira didn't touch my RA.

Now I can no longer afford the HUGE copays anyway so even if I wasn't

tired and SICK of the pharmaceuticals which are supposed to help - I'm

done.

I'll now try to take some vitamins, minerals and healthy supplements.

No longer want to be a human " rat test " for these extremely wealthy

drug companies.

Thanks,

K