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KIERAE's Photo KIERAE SparkPoints: (177,652)
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5/20/11 3:13 P

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ahh then I would be excluded - diagnosed at 2 years old. Hopefully I will find another - not horribly worried since I don't have many joints left to replace quite honestly. emoticon

I like living. I have sometimes been wildly, despairingly, acutely miserable, racked with sorrow, but through it all I still know quite certainly that just to be alive is a grand thing. Agatha Christie
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Kierae - happily maintaining since 1/2009

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DUSTI_DAWN's Photo DUSTI_DAWN Posts: 273
5/20/11 2:34 P

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It's a different drug. I don't have the specifics with me but it's through Lilly. I think it has similar criteria as when we first did the Actemra study ( i finished that last October 2010). Have to have been on Methetrexate and continue to take it, erosion on x-rays, not diagnosed with juvenile RA but just with adult RA.

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KIERAE's Photo KIERAE SparkPoints: (177,652)
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5/20/11 12:13 P

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Is it the self inject of the Actemra or another drug? I talked to the research doc about rolling into another study. Ironically there is a 2 year self inject on Actemra but of course the exclusionary criteria is having been on Actemra. Way to shaft your 5 year folks! GRRRR

I like living. I have sometimes been wildly, despairingly, acutely miserable, racked with sorrow, but through it all I still know quite certainly that just to be alive is a grand thing. Agatha Christie
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Kierae - happily maintaining since 1/2009

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ae

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DUSTI_DAWN's Photo DUSTI_DAWN Posts: 273
5/18/11 7:55 P

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I was in the 5 year Actemra study and it seemed to work great for me too, no side effects to speak of. The research facility I go to just got another one from the Lilly pharmacutical company so you might ask your doc about it?? It's a self-injectible. It burns like crazy though! I just started this month.

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3/29/11 10:09 A

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{{HUGS}} thank you so much for that info! I am sero positive, this will be on my agenda for the next appointment. I'm off to google that now.

PACSHARI's Photo PACSHARI Posts: 25
3/29/11 12:50 A

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Oh, By the way,
Forgot to tell you about that panel . it's called VECTRA and it only is helpful if you have seropositive rheumatoid arthritis.

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KIERAE's Photo KIERAE SparkPoints: (177,652)
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3/27/11 11:48 A

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Winter is ALWAYS good for 3-5 pounds variation for me. I know I am sitting on my high end of my "allowed" maintenance weight but at least I know it comes back down once the weather warms up and I can get outside (adds some variation to my winter gym workouts). I also think we tend to eat more comfort carby type foods in the winter and the options for many of us in the fruit and veggies expands during the warmer months. emoticon

I like living. I have sometimes been wildly, despairingly, acutely miserable, racked with sorrow, but through it all I still know quite certainly that just to be alive is a grand thing. Agatha Christie
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Kierae - happily maintaining since 1/2009

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ae

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3/27/11 11:41 A

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Kairae my doc did say something about my having to get used to the fact I'll have to stay on 5 mg. minimum of prednisone. I'm sure to get my daily Vit. D, calcium, folate, etc., and eat calcium rich foods every day and most days get in weight bearing activity, so I'm not too concerned about bone loss.

Thanks for posting that you experienced no weight problems due to Actemra. Maybe I can chalk it up to those cold winter months and being less active. I have been eating all my points and weekly extra points and getting less activity, so I'll try being better on getting my exercise in and see if I can make a dent in it.

KIERAE's Photo KIERAE SparkPoints: (177,652)
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3/27/11 11:37 A

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I am plugging along on it...my 5th year on it begins in July which is when the study officially ends. Most of my prior meds all quit working after a couple years so it's encouraging to me that it still is working. Pat - never heard of any weight gain with it but we are all individuals so hard to say. I don't know if your docs are like the ones around here but if you have been on prednisone for any length of time (ie years), they won't let you come down off that 5-10mg. Their theory is that our body naturally makes 7mg. When you have been on prednisone for years, we lose that ability. Therefore they don't like you dropping off of it completely (in fear of exacerbating any symptoms). Not sure if I quite by that but I humor them for now since 5mg (that I take) is so minimal.

I like living. I have sometimes been wildly, despairingly, acutely miserable, racked with sorrow, but through it all I still know quite certainly that just to be alive is a grand thing. Agatha Christie
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Kierae - happily maintaining since 1/2009

Co-leads:South Beach Diet/Smart Carbing/GLBTQ Spark Network
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ae

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3/27/11 11:22 A

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Good luck, I hope it works for you. I'll have to ask my rheumatologist about running that panel on me.

So far I've had six infusions. The first two did not really work and I had a horrendous flare requiring a shot of depomedrol and jacking my pred back up to 40 mg. a day to taper. At that point my doctor doubled the Actemra dose. I have been feeling pretty good - still need 5 to 10 mg. daily of pred. I do NOT feel as good as when my Enbrel was working, when I required no prednisone and felt like I didn't even have RA.

I think the Actemra is making me gain weight. I'm on Weight Watchers and count everything I eat but since going on Actemra I'm up five pounds and it is very stubborn.

PACSHARI's Photo PACSHARI Posts: 25
3/27/11 12:06 A

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Hi, I'm Shari
I just started my first Actemra infusion yesterday. I did well on Rituxan but it stopped working. I had been on embrel, methotrexate, plaquenil and orencia with minimal improvement. I am hoping for good things from Actemra . Interestingly enough, my rheum did a 12 panel panel that looks at the possible genetic markers to show that I should respond to this. That's exciting. (I'm not so excited about the lab bill, as my insurance just sent me a check for $8, and the lab sent me a charge for $100 per test for each of the 12 tests , OWCH! We'll see if they'll cover any more than that).

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KIERAE's Photo KIERAE SparkPoints: (177,652)
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1/19/11 4:52 P

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Another link for Actemra that is the other assistance available (for anybody interested):

www.genentechaccesssolutions.com/por
ta
l/site/AS/menuitem.7ef3b8542d7c63460R>313edacd79c23a0/?vgnextoid=2a271bde0
78
17210VgnVCM1000007dc9320aRCRD&vg
nextch
annel=0e2f9b2510c07210VgnVCM
1000007dc9320aRCRD


I like living. I have sometimes been wildly, despairingly, acutely miserable, racked with sorrow, but through it all I still know quite certainly that just to be alive is a grand thing. Agatha Christie
-----------------------
Kierae - happily maintaining since 1/2009

Co-leads:South Beach Diet/Smart Carbing/GLBTQ Spark Network
www.myfitnesspal.com/food/diary/Kier
ae

www.facebook.com/Robinlove60


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XENA1956's Photo XENA1956 SparkPoints: (64,839)
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12/31/10 10:51 P

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I am sorry too. I have not had to take anything other than prenidsone, yet. Although I am currently on Celcept, which the insurance did not want to pay for at first. It just became generic in 2010 b/4 that it was close to $3000 a month for the dose I needed.
emoticon to the team, Teri

Teri
TheOlderIGetTheBetterIWas

If you’re going to be able to look back on something and laugh about it, you might as well laugh about it now.
Xena1956


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12/31/10 4:30 P

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Oh, I'm so sorry you are on disability. This disease sucks. I wish you the very best.

Pfizer is having trials on a JAK inhibitor, I almost signed up for that one but was on too much pain to go off my Enbrel, MTX, etc. at the time.

KIERAE's Photo KIERAE SparkPoints: (177,652)
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12/31/10 12:23 P

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Thanks for the link. Unfortunately I am disabled and I receive Medicare. My share would be more than my rent which is just not going to happen. The drug company is being closed mouth with the folks handling the research program on what will be available assistance wise. Bottom line for them: it got approved and now is time for $. Not the first time nor the last that I have been stable on a med to have it poof due to finances (or the drug company pulled it because it wasnt cost efficient for them).

I like living. I have sometimes been wildly, despairingly, acutely miserable, racked with sorrow, but through it all I still know quite certainly that just to be alive is a grand thing. Agatha Christie
-----------------------
Kierae - happily maintaining since 1/2009

Co-leads:South Beach Diet/Smart Carbing/GLBTQ Spark Network
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ae

www.facebook.com/Robinlove60


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12/31/10 12:11 P

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Kiarae, my papers from Genentech indicate there is an assistance program. Here's the link:

http://www.actemra.com/actemra-financial
-assistance/default.aspx

I should hope that since you were a test subject and had good results, which no doubt helped to boost their sales, that the Genentech folks would grant you that courtesy.

I get my next dose on Thursday and doctor ordered double the dose this time. I'll keep the faith.

Thanks for the welcome!

TITALADY's Photo TITALADY SparkPoints: (0)
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12/30/10 12:00 P

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Welcome to the group! Hope you find some good drugs to help you. Be well! emoticon

KIERAE's Photo KIERAE SparkPoints: (177,652)
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12/30/10 11:38 A

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Hey there and yes! I am finishing up the research study for it. I will officially be on it for 5 years come July. I haven't had any side effects and it has brought my inflammation numbers down to minimal. Quite honestly most medications quit working for me after a point so we are surprised it is continuing to maintain me so well.

The cost factor will kill me though come July if they don't have any kind of assistance program so I may be looking for a new research drug.

I like living. I have sometimes been wildly, despairingly, acutely miserable, racked with sorrow, but through it all I still know quite certainly that just to be alive is a grand thing. Agatha Christie
-----------------------
Kierae - happily maintaining since 1/2009

Co-leads:South Beach Diet/Smart Carbing/GLBTQ Spark Network
www.myfitnesspal.com/food/diary/Kier
ae

www.facebook.com/Robinlove60


 current weight: 146.0 
 
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12/30/10 10:48 A

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Greetings all, I stumbled upon your group while trying to find like minded people with RA who also try to stay as active as possible.

Is anyone here having success with Actemra? I was on Enbrel for years but it stopped working. :( I've had 3 Actemra infusions so far but am not yet impressed, as I still keep having flares.

I'd be curious to hear of any successes - and failure. thanks!!!

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