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Psoriasis Club › HealthHealth Boards › Prescribed Treatments For Psoriasis v
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My Fumaderm journey is over

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My Fumaderm journey is over
Caroline Offline
You must hurry if you ever want to catch a chicken...
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Posts: 26,597
Threads: 113
Joined: Nov 2011
Gender: Female
Location: In between the tulips
Psoriasis Score: 3
Psoriatic Arthritis Score: 3
PQOLS: 4
Treatment: Got back to DMF slow release
#19
Wed-13-01-2016, 23:01 PM
(Wed-13-01-2016, 22:35 PM)Bill Wrote: A bit higher, actually.

"In the first case, Nieuwkamp and colleagues noted that their patient had been taking compounded delayed-release dimethyl fumarate for psoriasis since June 2012.

She'd had normal leukocyte and lymphocyte counts before starting the drug, but hit a low of 792 cells/mm3 by June 2014. At that time, she tested negative for JC virus and was diagnosed with atypical ischemic stroke. But by mid-August, she'd been transferred to another hospital with progressive hemiparesis and somnolence.

She was treated but her condition continued to worsen and she died by the end of August, and an autopsy confirmed PML, with JC virus DNA found in both brain tissue and cerebrospinal fluid."

Bill,

1) I guess you are talking about Psorinovo. That is the only slow release. Well it's NOT delayed release.
2) the measurement is always nasty, I have seen that there are very much different numbers around. With the numbers that are measured in my blood the values, but I don't know if it's meters or centimeters, must be between 0.5 and 1.2 ( I found this is wrong, it is between 1 and 3.5 as a default range)
So in the sense of cells/mm3, what is the normal value. Or how is it translated to my value, which I don't know, haha.
3) compounded in this sense means, factored by the pharmacy. There is no reason why this makes a difference, and therefore is mentioned.
4) at that time this message was very convenient for Biogen..., in the mean time also tecfidera has a PML case
5) if this the person who I think it is, she has definitely not followed the protocol that was described with Psorinovo and her doctor, her GP, did not read and used the instructions, which would have told her that she had to stop taking the drug.
6) there even may be other elements around in her status, that have caused this low value


Caroline
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Messages In This Thread
My Fumaderm journey is over - by phil - Tue-12-01-2016, 16:37 PM
RE: My Fumaderm journey is over - by Fred - Tue-12-01-2016, 16:41 PM
RE: My Fumaderm journey is over - by Fred - Tue-12-01-2016, 16:50 PM
RE: My Fumaderm journey is over - by jiml - Tue-12-01-2016, 16:44 PM
RE: My Fumaderm journey is over - by phil - Tue-12-01-2016, 17:14 PM
RE: My Fumaderm journey is over - by Fred - Tue-12-01-2016, 17:16 PM
RE: My Fumaderm journey is over - by jiml - Tue-12-01-2016, 17:22 PM
RE: My Fumaderm journey is over - by phil - Tue-12-01-2016, 18:24 PM
RE: My Fumaderm journey is over - by jiml - Tue-12-01-2016, 18:46 PM
RE: My Fumaderm journey is over - by Caroline - Tue-12-01-2016, 17:23 PM
RE: My Fumaderm journey is over - by phil - Tue-12-01-2016, 18:49 PM
RE: My Fumaderm journey is over - by Caroline - Wed-13-01-2016, 06:44 AM
RE: My Fumaderm journey is over - by phil - Wed-13-01-2016, 11:05 AM
RE: My Fumaderm journey is over - by Bill - Wed-13-01-2016, 00:31 AM
RE: My Fumaderm journey is over - by phil - Wed-13-01-2016, 10:49 AM
RE: My Fumaderm journey is over - by Bill - Wed-13-01-2016, 21:45 PM
RE: My Fumaderm journey is over - by Caroline - Wed-13-01-2016, 22:00 PM
RE: My Fumaderm journey is over - by Bill - Wed-13-01-2016, 22:35 PM
RE: My Fumaderm journey is over - by Caroline - Wed-13-01-2016, 23:01 PM
RE: My Fumaderm journey is over - by Bill - Wed-13-01-2016, 23:47 PM
RE: My Fumaderm journey is over - by Caroline - Thu-14-01-2016, 09:01 AM
RE: My Fumaderm journey is over - by jiml - Thu-14-01-2016, 10:23 AM
RE: My Fumaderm journey is over - by Bill - Fri-15-01-2016, 04:42 AM

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