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Joined: Nov 2007
Posts: 6,269
Addicted_to_AS_Kickin
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Addicted_to_AS_Kickin
Joined: Nov 2007
Posts: 6,269
Too funny....and so true! I probably would've had flour from head to toe and then some! And I agree, that was very sweet of Erica...


Age 7- Kidney Necrosis
Age 11-Bursitis
Age 14-Costo
Age 17-Psoriasis
Age 32-Thoracic Outlet Syndrome
Age 33-Sacroilitis
Age 35-Interstitial Cystitis
Age 40-AS
Age 44-Fibro
Age 44-PsA
Age 45-MS
Age 46-Sjogrens
Age 46-Raynauds
Age 47-PF
Joined: Nov 2007
Posts: 6,269
Addicted_to_AS_Kickin
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Addicted_to_AS_Kickin
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Posts: 6,269
Hi Yall...I'm now in week six and doing great on the medicine, Apremilast may be the way to go for me, it's hard to say if my pain levels are down because of the surgery but we've had a cold snap come through the last few days and that usually kills my hips and back but it doesn't seem to be bothering me as much as usual, of course I'm on pain meds from surgery but I'm sleeping through the night and have noticed that I'm not hurting as bad when I first wake up and I try not to take any medicine for the first couple of hours after I wake. So far, so good....


Age 7- Kidney Necrosis
Age 11-Bursitis
Age 14-Costo
Age 17-Psoriasis
Age 32-Thoracic Outlet Syndrome
Age 33-Sacroilitis
Age 35-Interstitial Cystitis
Age 40-AS
Age 44-Fibro
Age 44-PsA
Age 45-MS
Age 46-Sjogrens
Age 46-Raynauds
Age 47-PF
Joined: Jan 2008
Posts: 21,346
Likes: 2
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Jan 2008
Posts: 21,346
Likes: 2
fingers crossed......
for you......
and........
everyone that may benefit from this drug!

sue

Joined: Nov 2007
Posts: 6,269
Addicted_to_AS_Kickin
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Addicted_to_AS_Kickin
Joined: Nov 2007
Posts: 6,269
Thanks Sue, I have noticed the clinical doctor's office is buzzing with a lot of excitement over the great results they are seeing in the study patients, they've been bringing in outside medical personnel during the visits and they've been observing very intently and taking notes, the generic explanation is..."This is Brad, he's my shadow today, just for the day though and then he'll be gone..." or, "This is Jill...", honestly though, the results in me are almost unbelievable...it's not a cure-all but just the energy level improvement is helping tons but I am still having to take something for pain, I really can't make it through the whole day at this pace without it. I can't wait to see what happens in two weeks when the meds are increased....


Age 7- Kidney Necrosis
Age 11-Bursitis
Age 14-Costo
Age 17-Psoriasis
Age 32-Thoracic Outlet Syndrome
Age 33-Sacroilitis
Age 35-Interstitial Cystitis
Age 40-AS
Age 44-Fibro
Age 44-PsA
Age 45-MS
Age 46-Sjogrens
Age 46-Raynauds
Age 47-PF
Joined: Jan 2008
Posts: 21,346
Likes: 2
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Jan 2008
Posts: 21,346
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you may have addressed this before, but either i missed it or don't remember..... any idea how long before it gets to market if the trial is a success?

and glad you're feeling an improvement,
i know for me, every little bit helps,

sue

Joined: Nov 2007
Posts: 6,269
Addicted_to_AS_Kickin
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Addicted_to_AS_Kickin
Joined: Nov 2007
Posts: 6,269
I don't know Sue, I would think within a couple of years. Let's hope so anyway....


Age 7- Kidney Necrosis
Age 11-Bursitis
Age 14-Costo
Age 17-Psoriasis
Age 32-Thoracic Outlet Syndrome
Age 33-Sacroilitis
Age 35-Interstitial Cystitis
Age 40-AS
Age 44-Fibro
Age 44-PsA
Age 45-MS
Age 46-Sjogrens
Age 46-Raynauds
Age 47-PF
Joined: Nov 2007
Posts: 6,269
Addicted_to_AS_Kickin
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Addicted_to_AS_Kickin
Joined: Nov 2007
Posts: 6,269
Week 7 update...Okay, the good news, my skin is not only 100% clear but it seems to be rehydrated as well...keeping the moisture in my skin has been a big problem for me the last few years, no matter how much water I drink, or how much moisturizer I use, my skin always feels very dry....now, the bad news, my pain levels are still very high and my morning stiffness went back to being severe, so, based on that info, I can only conclude the following....(1)either I'm on placebo or a low dose of Apremilast (2)it's not effective on pain (3)it's not effective on my pain (4)the recent surgery I've gone through is interfering with the results...again, I want to emphasize that I may be on the low dose or placebo, I want to be fair to the maufacturer and keep everyone informed of the clinical trial results that I'm experiencing at the same time but until we know what strength of drug, if any at all, we won't have any idea of the effecacy of this new and promising drug....


Age 7- Kidney Necrosis
Age 11-Bursitis
Age 14-Costo
Age 17-Psoriasis
Age 32-Thoracic Outlet Syndrome
Age 33-Sacroilitis
Age 35-Interstitial Cystitis
Age 40-AS
Age 44-Fibro
Age 44-PsA
Age 45-MS
Age 46-Sjogrens
Age 46-Raynauds
Age 47-PF
Joined: Nov 2008
Posts: 48
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doh Offline
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Joined: Nov 2008
Posts: 48
1 week ago you mentioned things were going well michelle! im sorry for the downturn, perhaps the stress of surgery does have something to do with it.

would they have switched you over to the placebo arm?

Joined: Nov 2007
Posts: 6,269
Addicted_to_AS_Kickin
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Addicted_to_AS_Kickin
Joined: Nov 2007
Posts: 6,269
Hi doh...I'm glad you posed that question, I'm wondering if the surgery has has something to do with it too...maybe too much of an overload on my immune system...I'm still seeing benefits from the drug in other areas though and that makes me think that the reason that it's not helping my pain is that I'm probably on the low dose....after reading the results from the first phase of the clinical trials again, I realised that the improvement that I've seen from the drug is consistent with the improvement seen in the patients on the 10mg dose which is targeted at psoriasis, the second phase is to see if higher doses of the drug can help people with inflammatory diseases...so, considering that, I'm hopeful that when the doses are raised, in just a couple of weeks, that I'll get relief from my pain...I will have to be careful though to differentiate between the benefit of the heavy pain meds that I'll be on post-op and the drug....also doh, I think the reason my stiffness is an issue again is due to the lack of activity and the amount of time I spend in bed while recovering from surgery...I had seen an improvement in my morning stiffness and energy levels initially....but no, they would not have switched me to placebo, after you pose the question, I went back and reviewed the program outline and they up the dose on everyone in the study at planned intervals, but no dose lowering at any phase....just a note, with a lot of the other medications a lot of patients go into a flare when the medication is discontinued, follow up studies on the first phase subjects, there was no rebound reported on any of the subjects, which is fantastic because rebound flares are usually worse that regular flares, so this is great news.....

Happy Thanksgiving!!


Age 7- Kidney Necrosis
Age 11-Bursitis
Age 14-Costo
Age 17-Psoriasis
Age 32-Thoracic Outlet Syndrome
Age 33-Sacroilitis
Age 35-Interstitial Cystitis
Age 40-AS
Age 44-Fibro
Age 44-PsA
Age 45-MS
Age 46-Sjogrens
Age 46-Raynauds
Age 47-PF
Joined: Oct 2008
Posts: 843
Ninja_AS_Kicker
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Ninja_AS_Kicker
Joined: Oct 2008
Posts: 843
WOW! I am supposed to "start wrapping my brain around" the possibility of starting biologics. You are so brave, thank you for being a part of this.
cc

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