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:

http://www.tysabri.com/tysbProject/tysb.portal/_baseurl/threeColLayout/SCSRepository/en_US/tysb/includes/redirect.xml&resource=/en_US/tysb/site/pdfs/TYSABRI-pi.pdf

Hope you feel better soon!

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 .