Living With MS

Discussing all aspects of Multiple Sclerosis, various treatments, including accurate information regarding Tysabri.

Thursday, February 18, 2010

My Tysabri Diary...,

Hi everyone--
Completed my 44th Tysabri infusion on Tuesday, all went well and the infusion center I go to was training three different infusion nurses (all young'ins -20s and 30s - heehee), all Touch Certified, just being trained as a Kaiser's procedures.

Three of them wanted to sit down with me and discuss my MS, pick my brain Re: my knowledge of MS, the different ABCRs, Tysabri, all of their different efficacies, etc., etc. But the supervising infusion nurse said they had work to do, so they indicated they would look for me next month and if not too busy, sit down and talk with me. Not to brag or anything, but my own infusion nurse was beaming and seemed rather "proud" (I don't know if that is the right word) as she was taking care me and had me alter herself.

I did learn that they signed up another new Tysabri patient, and the others seem to be doing just fine on Tysabri.

I was supposed to see my neurologist yesterday for my six month checkup, but when my caregiver and I arrived, we were told that the appointment needed to be rescheduled as my doctor was called away on an emergency. While I understand that this could not be avoided, I was rather ticked off because my caregiver was actually sick and came to work anyway just so that he could bring me to my doctors appointment. Anyway, when I got back home, I rescheduled the appointment, and sent Ray home (whatever he has, I hope I don't get it--).

I'm still a little tired today, so I'll end this post for now..., take care everyone--

Love, Lauren :)

Sunday, February 14, 2010

Happy Valentine's Day everyone!

I'm getting ready to have my 44th Tysabri infusion on Tuesday (have I had that many already? Whoa)..., I was having a discussion with a neurologist friend of mine who practices
out of the MS Center in Atlanta about the new and highly anticipated test that Biogen & Élan have been working on for doctors to detect the presence of the dreaded JC virus, which if it becomes activated & allowed to proliferate, can lead to the development of PML in immune compromised Tysabri patients.

This is what he told me (I have his permission to post this):

"The current "ELISA" (
Enzyme-Linked ImmunoSorbent Assay) test is not as specific to JCV as the new assay will be, howerver if antibody negative the current test will at least show those who are overall negative. The current test should be available to any physician, as is the current CD4/CD8 test. I understand both are in the neighborhood of $200. I am not sure of reimbursement, but the MS Center of Atlanta is having no problems for reimbursemnt on the CD4 test. I would expect the new assay and the Immuknow test to be available by june or so. A re-testing of anyone showing polyoma virus positive could be then done to verify JC antibodies or not. Immuknow test for ATP on the CD4 cells as a better indicator of immune competence than is currently available."

He went on to state: "I believe "ATP" is Amino Tri Phosphate, which is believed to be key to the immune response to JCV".

Here is the link to read more about the Immuknow test:

Here is the link to read more about the ELISA test:

So the months of March, April, May & June should be exciting as we all wait for the new assay to be out and available for physicians to test specifically for the JC virus, woo hoo!

Have a great Valentines Day everyone...,


Love, Lauren :)

Monday, February 08, 2010

Hi everyone, here is an article that I just received which discusses a new study being launched by Biogen called "Surpass", which is promoting the use of Tysabri at earlier stages of the disease (i.e., As a first-line defense--even though it can now be prescribed as a first-line defense for aggressive MS such as PRMS--if the patient's treating physician feels it is necessary)..., it's about time!
Here is the just of the article:

"Biogen Idec Inc.’s drug, Tysabri, is currently being used for patients with very aggressive multiple sclerosis. The company is now launching a study, designated Surpass, promoting the use of Tysabri at earlier stages of the disease.

Tysabri has been a controversial treatment of MS due to the risk of contracting Progressive Multifocal Leukoencephalopathy (PML), a rare viral disease that damages the myelin covering of the white brain matter. In January 2010 the Committee for Medicinal Products for Human Use of the European Medicines Agency concluded that the benefit-risk ratio of Tysabri was weighted in the drugs favor. Biogen Idec Inc.’s executives hope to prove this to be true through the planned study.

This study has been planned at an opportune time, due to increased competition in the MS drug market. Drug companies Sereno and Novartis are currently testing oral MS drugs instead of the injectable drugs now available.

The purpose of Surpass is to get physicians to prescribe Tysabri when patients are non-responsive to their current therapy. Presently, physicians will merely switch to another mainstream therapy. The planned study will monitor around 1,800 patients for two years. As a result, the data will not be released until 2013 or 2014".
Love, Lauren