My Tysabri Diary...

Thank you ALL for your Happy Birthday wishes, and I hope you all had a safe and happy Thanksgiving holiday.

Sorry I haven't updated my Blog recently, but I'm fine, just IRRITATED AS HELL AND ROYALLY PISSED OFF WITH BIOGEN AND THE IDIOT A**HOLE THAT REVIEWED MY BLOG AND ERRONEOUSLY REPORTED TO BIOGEN (WHO DIDN'T EVEN BOTHER TO INVESTIGATE THIS FALSE INFORMATION PROVIDED TO THEM!) THAT I HAD AN "ADVERSE EVENT" WHILE ON AVONEX THAT I FAILED TO REPORT...

W.T.F.??????

From Emails I sent and received, here is the series of events that transpired due to Biogen's negligent actions (AND THE NEGLIGENT ACTIONS OF THE IDIOT THAT REPORTED THEM TO BIOGEN-GOD HELP YOU IF I EVER FIND OUT WHO YOU ARE!):

Subj: ok xxxxx, Biogen just crossed the line Date: 11/21/06 10:05:04 PM Pacific Standard Time From: LGLBGL2003 To: xxx

and i am so friggin pi**ed off right now, i'm STILL seeing stars! sorry for my language, but my neuro called me tonight at 8:20 PM my time (she was still working and she had called me at 7:30 AM today!)...

when i asked her what was wrong, she told me the following [paraphrasing]:

the patient (me) had reported on her blog that while on avonex, she had fallen, had been hospitalized, and was now confined to a w/c, and had failed to report these adverse events.

W. T. HE** ????????

BIOGEN IS TWISTING WHAT I POST ON MY BLOG TO SUIT THEIR WANTS AND NEEDS AS I NEVER POSTED THAT IN THE SEQUENCE THEY STATED, AND I HAVEN'T BEEN ON AVONEX SINCE 2004!!! THIS IS THE 2ND TIME BIOGEN HAS CONTACTED MY NEUROLOGIST WITH FALSE INFORMATION!

THE UNMITIGATED GALL AND NERVE OF BIOGEN!!!......

I AM MAD!

***
This is what was sent/reported to my neurologist by Biogen on a form entitled "DRAFT" under B. #5: "A female patient on AVONEX (formulation, dosing regimen, and dates of dosing unknown) reported via an Internet *blog* that she was hospitalized due to a fall (onst Sep 2006). Treatment was not reported. The outcome of fall is unknown. Additionally, the patient experienced a horrible (MS) relapse resulting in being confined to a wheelchair. AVONEX therapy was discontinued."

My email was forwarded to Biogen, here is their response (note my comments to same are inserted there in colored Caps):

From: xxx@biogenidec.com
Sent: Wednesday, November 22, 2006 10:41 AM
To: xxx
Subject: Re: ok xxx, biogen just crossed the line

Hi xxx -

Legal and regulatory requirements are sometimes counterintuitive and, therefore frustrating to all, including us. We are not a corporate entity, we are a collection of human beings (THAT ARE EMPLOYED BY BIOGEN, IDEC, EITHER DIRECTLY OR INDIRECTLY THROUGH THEIR AVONEX AGENT, MSACTIVESOURCE!!!) who are trying to do the right thing!!

The reason for the situation below is that we, as the employees of the manufacturer, have an obligation to explore every adverse event of which we become aware. (I HAVE NEVER HAD AN ADVERSE EVENT TO EITHER AVONEX OR TYSABRI!!!!! EVER!!!) This includes information posted on a website. (THIS IS NOT POSTED ON MY WEBSITE EITHER AS IT HAS NEVER HAPPENED!!! The follow-up process is for the employee to tell drug safety experts at Biogen Idec, who then contact the provider to determine if the event is indeed an adverse event attributable to the product. In this case, it would seem not, (NO SH*T! GEEE, YA THINK MAYBE BIOGEN SHOULD HAVE INVESTIGATED THIS FIRST FOR ACCURACY???) but it is only through this process of follow-up that we maintain our commitment to fully understanding all reported and non-reported patient experiences and better understanding the safety profiles of our products. (THIS IS BS, GIVE ME A FRIGGIN BREAK!!! SEE ABOVE!!!) We have an obligation, as does every other manufacturer of a pharmaceutical or biotech product, to report the summary of aggregated analysis of all such events to the FDA on an ongoing basis. This has nothing to do with TYSABRI. (BS AGAIN, THIS HAS TO DO WITH AVONEX SALES WHILE TYSABRI HAS BEEN APPROVED! I AM NOT STUPID, BIOGEN HAS AN OBLIGATION TO INVESTIGATE THE 'PURPORTED' INFORMATION FIRST!) You should note that we do not/will not determine whether a patient can or can't receive therapy. That is a decision made by the presciber and the patient. (HAVING THESE FALSE AND ERRONEOUS "BIOGEN" LETTERS IN A MS PATIENT'S MEDICAL RECORDS AND ANNOYING OUR TREATING PHYSICIANS AND APPROVING INS. CO'S IS JEOPARDIZING OUR "CURRENTLY" APPROVED THERAPY! AND BIOGEN KNOWS THIS) Our goal is to provide information about the product, facilitate a system to assure that physicians and patients are aware of warnings and recommendations, and assure that only patients with relapsing forms of MS receive TYSABRI. (THAT'S ODD, DIDN'T XXX JUST STATE: "This has nothing to do with TYSABRI." ??? AS STATED PREVIOUSLY, THEIR ARGUMENTS DON'T HOLD ANY WATER OR TRUTHS WHATSOEVER!!!) In terms of safety information, we collect this from all patients through TOUCH to better understand the safety profile of the product. FURTHERMORE, THIS BS WITH BIOGEN STARTED BEFORE I WAS EVEN ENROLLED IN THE TOUCH PROGRAM!!!)

Please rest assured that the intent is right, even though the process is sometimes frustrating. (THE PROCESS IS COMPLETELY WRONG, ESPECIALLY WHEN IT BEGINS WITH ERRONEOUS FACTS GATHERED BY BIOGEN ITSELF, AND PERPETUATED EVEN AFTER THE CORRECT INFORMATION WAS PROVIDED BY MY NEURO THE FIRST TIME THIS BS WAS STARTED BY BIOGEN IN 2006!!! AND THIS MUST CHANGE, NO IFS, ANDS, OR BUTS ABOUT IT!)

Please feel free to pass this information along to Lauren...

Best wishes for a Happy Thanksgiving.

XXX
________


As reported back to Biogen by my neurologist FOR THE 2ND TIME THIS YEAR, "this is NOT AN ADVERSE REACTION TO AVONEX, THE PATIENT HAS NOT BEEN ON AVONEX SINCE 2004! Etiology: Progression of disease."

This is for ALL IDIOT A**HOLES employed by/or reporting to Biogen (or other companies) that are viewing my Blog THAT CONVENIENTLY OMITTED THE FOLLOWING INFORMATION LOCATED IN [RED]: "A female patient on AVONEX [I STOPPED TAKING AVONEX IN MID-2004] (formulation, dosing regimen, and dates of dosing unknown) reported via an Internet *blog* that she was hospitalized due to a fall [FROM A RELAPSE] (onset Sep 2006). Treatment was not reported. The outcome of fall is unknown. Additionally, the patient experienced a horrible (MS) relapse [IN JUNE OF 2005] resulting in being confined to a wheelchair. AVONEX therapy was discontinued [IN MID-2004]." HOW MUCH MORE CLEAR AND CONCISE MUST I BE, BIOGEN??? WAKE UP AS THERE IS NO EXCUSE IF THIS EVER HAPPENS AGAIN.

For the record here, it is not my intent to antagonize anyone at Biogen, BUT MY POINT IS: regarding Biogen's "STRANGE" actions, Biogen cannot just 'shoot from the hip' whenever they feel like it without reviewing 'gathered' information from an idiot FIRST for accuracy, without paying the consequences - they get what they give..they need to change their UNETHICAL practices.

Biogen is NOT required to send false inquiries to treating neurologists of Tysabri patients that could 'potentially' disrupt the patient's treatment regimen, as well as sending this false inquiry to the FDA (which erroneously remains in the patient's medical history) . Biogen has an OBLIGATION TO fully review the 'infomation' being reported to them for ACCURACY BEFORE they "rush to judgement" and start interferring with the patient/doctor relationship, which results in an additional burden and stress already being carried by the patient (that burden AND stress being the disease of MS).

Now that the above is out of my system, I am estatic to report that I just received 2 emails from MS patients (now friends-smiling) : 1) she just had her first infusion, and WOW, her partial words: "I had NO side effects but I did notice the lame leg started to ache a bit and then it went away... well, after finishing and going through the after wait I stood up! And the leg was strong! Went out to eat, had a ball (in my scooter of course can't be too careful.) Went home and could lift my entire leg onto the couch by myself! Just like the left leg which has been fine. Next day my husband helped me walk through my mom's garage and into her house (used the quad cane since balance isn't back that much yet) I am sure a lot was excitement and partly psychological but boy was I excited! Next day I was a bit tired (all that exercise) and the leg is still stable. Is it possible it could start working that fast? Anyway,, I am thrilled (:+)))))))))))))."...

And the 2nd email from someone (who just saw the first neuro that saw me back in 1976, whoa! - lol) that has been fighting to get her Tysabri: "Hi Lauren! Well after one month of daily conversations with the TOUCH people, insurance, and Dr. xxxxxxx office, I am starting on Tysabri on Dec. 13!!!! YEAH!!!!! I look at your blog once a week, and I hope you are well, and that Tysabri s still helping you. You have helped me perservere on and finally the day is near! Thank You!! Happy Holidays! xxxxx".

My guess is they both got an early Christmas gift, eh? I am due for my 3rd Tysabri infusion soon. Until then, take good care of each other...,[smiling]

(((lots of Love & Hugs)))

A very proud member of www.MSpatientsforchoice.org