All Journal Entries Journals

March 13, 2008

Mar 14, 2008 - 0 comments




I just saw the research dr at Cedars and he had a few interesting things to say. He said that if I start tx that it can throw me into an overdrive immune syndrome (5% chance) that may never go away. Yikes (Because I have systemic RA)
I worry I may not know the difference in an RA flare or the autoimmune syndrome - but he says I will - that it is sever pain and swelling in most joints. (Now I just have up to 4 at a time).  I will also be able to stay on my RA drugs (Enbrel and Prednisone)  

He also said that according to some new studies that are not released yet. (he is privy to them) If you are a 2b and UND at week 2 then there is only a 5% variable between 12 week and 24 week tx - so he wants me to do 12 weeks. It would be weight based pegintron with wb rib (only 800 for mini me) You also need a lower VL going in. Mine just dropped to 680,000 from 3,780,000 in a few weeks - it's all over the place with the RA and Enbrel fighting it in bursts.

I am suppose to be highly monitored when I start tx - have to have someone with me always for the first 3 weeks (I have bad reactions in the past to other meds). I do not have cryoglobulins or ANA etc. which i was hoping I did so I would feel better after tx.

All so much to take in. I am just stage 1 and can wait but I have age and RA against me and am also very symptomatic - just want this over. Here's my list of reasons I want to tx now.

1.) People who treat earlier have a better response rate
2.) I am healthy as I will ever be today (I have RA and get worse everyday)
3.) New Drugs that are promising are at least 3 years out.
4.) My anxiety will increase with every day that I wait
5.) I want my energy back!
6.) I don't want this negative stigma (as others see it) hanging around my head and my families for years to come
7.) I want to show my horses again
8.) I want to be normal again which includes fine wine with fine food at fine restaurants

Post a Comment