Living With MS

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

Thursday, January 21, 2010

My Tysabri Diary.....,

Hi everyone--I'm going to make this short as it is raining cats and dogs out here and the power keeps going off and on every few minutes as we must be right in the middle of a "thunderstorm cell" that is really packing a punch filled with pouring rain and lightning.

I had my 43rd Tysabri infusion yesterday, and all went well (other than having to travel in the pouring rain--with accidents happening everywhere) ..., doesn't everyone know that California drivers don't know how to drive in any thing but sunshine?

I thought I would post part of a discussion going on with regard to Tysabri on a MS Board where I created a Tysabri thread that I frequent quite regularly..., I have to get going now as the thunder is starting to increase as it gets closer and closer, yikes! Lauren

Here is part of the post:

"Congratulations to everyone that is feeling good and seeing some improvements! (there were many different posts describing some of the improvements many of these patients were experiencing).

I just completed my 43rd Tysabri infusion yesterday, and all went well (other than it raining cats and dogs all day long).

To XXX: my question to you is did you pretreat your Tysabri infusion within an antihistamine such as a 30 minute Benadryl drip, or a Claritin-D tablet (which is an OTC antihistamine and taken approximately 2 hours before your infusion because vertigo can be a side effect/adverse reaction in a small percentage of patients using Tysabri, and an antihistamine might prevent that side effect from occurring again. (she was experiencing severe vertigo and nausea the day after her first infusion).

You might want to mention this to your neurologist so that you can discuss the Tysabri label in full with him/her.....,. see page 10 of the Tysabri label:

To XXXX:: you posted "I am wondering if the fact that Tys. is not doing much for a few people is because they are PPMS rather than RRMS. My neuro said Tys. is NOT for PPMS...". Your neuro is correct in that PPMS is not in the "inflammatory stage" of MS, rather it is in the demyelinating stage of MS-as is SPMS without relapses. Furthermore, there is a growing opinion among neurologists that PPMS is thought to be a completely different type of MS.

It is quite possible that the persons on Tysabri are not seeing major improvements for several reasons: their MS could be an aggressive form of MS known as PRMS (Progressive Relapsing); they have had MS for a long time and the damage they have is now unfortunately permanent; Tysabri does not work for them; they are misdiagnosed and don't have MS at all, etc.

Tysabri was not designed for patients to show symptoms improvements. You have to remember that the data shows Tysabri is 68% more effective than the ABCRs at reducing/preventing further relapses & slowing the disease process down--the benefits that some patients receive in the form of symptom improvement(s) is just an added bonus or "icing on the cake". If Tysabri is able to keep their MS stable, it is working for them.

This is only my opinion--but the published data pretty much speaks for itself and I try very hard to not second-guess a doctor's opinion of their patient's diagnosis because I do not know their entire history, and I try very hard not to second-guess other patients that may not be experiencing improvements that other patients might be & at what infusion # they might be experiencing their improvements, as that can usually promote feelings of being discouraged. If a patient is going to see any types of improvements, that can happen at any time. In my mind, that promotes hope & encouragement for these patients.

Enjoy you weekend everyone!

Lauren Cool.

Saturday, January 02, 2010

Happy new year everyone..., here is a post from a Tysabri patient on a very popular private MS board (she is upset that her doctors wants to take her off Tysabri and place her on Copaxone-which are daily shots-including IVIG treatments), and my reply for everyone to see on that MS board..., hopefully we will have a healthy, happy and prosperous 2010, at least that is my prayer -- all my very best to each of you..., Lauren

... I need some support, U are going to have to go through this email and fix it allittle my spelling and gramer is really bad right now..... Sorry.... Asking if any one knows about being more at risk for PML in the 2 year mark of of taken tysabri? My Dr.s want to take me off of tysabri and Put me on Copaxone and IVIG... The TY has been working great and Ive been soo healthy... I really dont want to change my meds... but I dont want to GEt PML.... Copaxone I hate the shots everyday I was on Rebif and that was sooo hard for me.... Damn I wish this Crazy MS would leave us all alone!!! I need some Prayers.. Im soo scared.... lots of love ... XXX

Here was my reply to this patient:


I have been on Tysabri for more than three years, just completing my 42nd infusion two weeks ago.

Your doctors are quite possibly putting you at more risk for having further relapses, disabilities, and what's worse-IVIG treatments could drastically reduce the efficiency of your immune system (i.e., eventually dropping it really, really low)-placing you at very high risk for not only developing PML, but also IRIS (immune reconstitution inflammatory syndrome) should you develop PML.

A very simple blood test called the CD4/CD8 PCR tests can be done to measure the competency of your immune system--they are done all the time.

What I don't understand is why neurologists are willing to not only place their patients at risk for having further relapses, further disabilities, allowing disease progression, reducing their patients' Quality of Life by withholding Tysabri from them, placing their patients on one of the lesser effective ABCRs (Copaxone is only 27% effective at preventing further relapses and possibly slowing the disease process down-plus the patient really is not protected for at least six months-the time it takes for Copaxone to start working in the body), and if these neurologists are eventually going to put their patients back on Tysabri after a "drug holiday", they are not only placing their patients at risk for developing hypersensitivity reactions to Tysabri, developing antibodies to Tysabri, but for Tysabri to possibly have lesser efficacy once they are back on Tysabri. Why don't they read the label in full???

Lastly, why are patients allowing their doctors to do this to them??? .., doctors work for us, it's not the other way around. This makes me so sad to hear that XXX's doctors are contemplating doing this to her--if they were doing this to me, I would not only raise bloody h**, make a scene so all their other patients could see how awful they are/will be treated, then I'd find a new doctor that has more brains & ba**s to stay better informed when it comes to "selective adhesion molecule" therapy, which is what Tysabri is.