The other day I read an article where Kathleen Turner talked about her
RA and I thought, "Oh that's interesting". Now today I read this thread on another chat board
in which it was revealed that Kathleen Turner was on AP therapy, but is
now a paid spokesperson for Enbrel (she still takes minocin, btw)! I
don't know what her story is but I keep hearing more and more stories
about how people like doctor's spouses and senators and the like all
use AP Therapy for their RA, so why do our doctors shun it? Something
is smelling fishy in Denmark here.
PS. This chat board is kind of different in that the first posts are on
the bottom and the closer they are to the top the newer they are. Sort
of backwards to what you might be used to. So you have to go to the end of the last page to read the first post.
That article was from 2001. In a 2002 interview with Arthritis Today she said she was on ap, enbrel and celebrex. How is she a hypocrite..where is it written that if you are on ap you can't be on anything else. She hasn't denied being on AP therapy but obviously it wasn't enough to control her disease in and of itself so enbrel was added.
Is she a hypocrite because she is a spokesperson for a medication she takes? Maybe she doesn't endorse AP because it didn't stop her from flaring.
Unless or until you know what is someones motivations for doing something it is really uncalled for to call them a hypocrite
the fact enbrel is so expensive is sad.
another thing that sucks is from what I read, it stops working... be nice if they could invent one that would work for I dont know 20 years maybe?
[QUOTE=Bonny]
Bonny is so right -
I find it appalling that Minocin has gone up in price something like 350% in the first 6 months of 2006 alone. Who said they a smelling something fishy here? Could it be the results they are getting in the Parkinson's, ALS, and MS trials? I just got a bill from my insurance company. I now have to order my Mino by mail or I have to pay 0 out of pocket. Hmmmm. Thank God I saw what was happening and started stock piling the drug. Otherwise, I'd be out of it for 10 days - enough to start a flair.
Got to run - still packing and storing stuff and late for church!
Pip
Is minocin something that you take for the rest of your life? I'm just startingMaybe this link would be of some help:
http://www.postgradmed.com/issues/1999/04_99/alarcon.htm
Also this link has great info on AP.
roadback.org
Hey Everybody!
Justoday! Wow - you and your sister ARE the exception to the rule. Most doc's try everything EXCEPT AP. Couple of questions if you don't mind. Did your sister's and your's doc explain AP and about the herxing and stuff? Did you feel you were prepared for the 'experience'? Are you still on AP or did you quit?
Buckeye - The problem with Kathleen Turner is IF she took a multimillion dollar endorsement package from Big Pharma in exchange for endorsing Enbrel. Up until that point she gave all the credit to AP. Did AP fail? Or did her tune change when given a residual check? THAT is the question. She got 'busted' by a reporter for being involved with that talk show that was supposedly spur of the moment chat but was in reality a front for advertising. The fact that both the show and Turner got paid - that made me very, very, very uncomfortable - and not because of the RA issue - but because my 'hero' is Ed Murrow and the man would have turn over in his grave seeing the depth 'news' has fallen in this country. That reporter highlit the fact that Big Pharma was involved in passing off paid spokespeople as 'just regular folks with a disease of the week". I think that when the scandel was done at least 3 shows promised to 'never do that again'. Yeah, right - if the check is big enough, we know they'll relax the rules again if they think they will get away with it. As far as I can tell, Kathleen has never apologized for her part in that.
Also, the incredibly rich and famous have access to docs that we the little guy do not. I believe that there are are other famous people on AP but they're not advertising it. IF AP started to fail KT, my guess is that Dr. Trentham, who is one of the top AP dogs, and would be up on the latest research, would have started her on another ABX protocol - because it's better to be a co-doc on fixing somebody famous than to be known as the guy who failed. And KT, by most accounts, would be the type to name names. Just my take on the situation.
Deanna - my Mom just had her knee replaced and they made her get off all her meds for 14 days before the surgery. Not sure what you're having done - but on the off chance they make you do the same thing...and since you might, sort of, kinda be thinking about AP...if you've nothing to lose - you might think of starting right after. And...if you're getting surgery...and notice and are a little VOCAL about ANY redness you might see...and keep demanding ABX to deal with that starting infection...you might just get a jump start on AP if you handle it right. LOL. My mom is doing that. LOL. Just trying to avoid a herx, or at least lessen it, when she gets on the Mino. I had the nurses in there checking her incision multiple times. When it got a little red I started mentioning that the number one problem in hospitals are staff infections and both my bro and I developed staff infections in that same hospital...and son of a gun if they didn't note the chart and start talking about preventative measure with a family history of staff infections. LOL Too bad the history is true tho.
Lorster - yep, you should consider you'll be on ABX for life. I think there are ways off the ABX, and your mentioning about diet, exercise, and alternative therapies put you in that camp. But, please, don't think 3 years and you're done. It is a long, careful climb to a 'cure'. You can 'usually' get a pain-free remission within 2 years.
Somebody, I wish I remember who as it was so cool, said I was the 'poster child for AP'. I am. I am having an incredibly easy time of it, and am pretty much 'back to normal' and it's only been 5 months. Most people DO NOT react like I did to AP. It can be a heck of a struggle. I think the reason I am doing so well as I was just diagnosed and I had not been on any immune suppressants and my RF factors were sky high signalling my doc that my body was fighting like heck to beat this thing. You mentioned you were going to talk to you rheumy about AP - Bonny gave you the web address of the Road Back. Read it everyday...there I learned about diet modifications that could help me, natural remedies I will be using later, etc, but most importantly, I learned how to counter any objections my rheumy gave me. They have studies you can print out and take to the doc etc. I think they saved my life because when my PRA hit it hit hard and ugly. I NEVER want to feel that again.
Alan - if you're reading this...I know I still haven't responded and I am not avoiding you. I have been packing and moving all weekend. If you would have told me in September that I would be able to pack and lift heavy boxes, carry them to what seems like hell and back, in SNOW, and only be achy - and not PRA achy but 'good God, what happened to my muscles, I USED to have muscle' achy I never would have believed it. So, now I need to go to bed...and I'll answer you tomorrow.
Pip
Pip, I'm not sure what my sister's RD said to her, but my doctor said very little about herxing. He did follow up several times over the first few weeks to see how I was doing (another exception to the rule). I didn't have any problems with the meds except for a little woosiness during the initial week. I'm still on it, but I had to add more goodies because I continued to have troubles. My sister's RA is less aggressive (she thinks) and AP is her only med.Wow, another exception! Might I ask - what did you add and are you trying to wean off the traditionals? My PRA was VERY aggressive and it's almost totally controlled now. Just a little achy now but that might be from overdoing it for the move. Also, have you been to the roadback? What do you think about them? When I first started going there I thought they were speaking Greek. LOL. But it all started to make sense after a bit.
Pip