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.

6 Comments:

  • At 10:54 AM, Anonymous Anonymous said…

    Hi Lauren, I have read some of you blogs and I am encouraged to see that you have been on Tysabri so long. I was disgnosed in September with MS, put on Copaxone, did not tolerate that well, but also had a relapse this past week. The doctor wants to switch me to Tysabri because I am only 33 and am walking with a cane. I'm looking to anyone with advice as to what to do. I have a family member who works for a medical company and she is making a big deal over the PML. I am nervous about that too, but I can't keep having relapses at 33 with 4 kids. Any help or direction would be great. K

     
  • At 11:14 AM, Anonymous Anonymous said…

    Hi Lauren,

    I live in So Calif (from east) and it amazes me what rain does to drivers out here!
    I had my 5th Tysabri treatment last week. Had an MRI yesterday is it likely to show any change? Glad to know you have been on so long. I call it my monthly dose of poison, but it does seem to be helpig my stamina.

     
  • At 1:47 PM, Blogger Lauren said…

    Hi Anonymous (sorry, I don't know your first name)...,

    I really can't tell you what you should do, however, if Tysabri had been offered to me at the age of 33, I would have jumped at the chance to be on the most effective MS therapy approved by the FDA & available to us.

    It is obvious (in my opinion) that your MS is starting to progress & become more aggressive, and the sooner you can stop or slow down down this process, the sooner you can start feeling better, and quite possibly enjoy the benefits of regaining some of what MS has taken from you..., since you have been diagnosed early, and your relapses have also occurred early, you make a very good candidate for Tysabri, and it's amazing capabilities for treating your MS...,

    Just because you have a family member who works for a medical company, doesn't mean she is better informed about PML than those of us that have been on this treatment, discuss it with our doctors, have been researching PML since 2000,and have thoroughly reviewed all aspects & available histories of the patients that were diagnosed with PML after being treated with Tysabri.

    For your information, PML is caused by a diminished immune system, a.k.a. a very, very low immune system that cannot fight off a proliferation of the JC virus should you even have the JC virus in your system.

    Lack of accurate information and/or misinformation about the link between Tysabri and PML only causes more harm than good. She might mean well, but she is doing a disservice by perpetuating misguided & misleading untruths about Tysabri.

    You have MS, you are the one suffering the disabilities, you are the one that needs to be there for your family, and you should be able to be your own patient advocate by standing up for yourself and having the right to make an informed decision about choosing the most effective MS therapy available to treat your disease after discussing same with your doctor.

    I know that I'm getting a little winded here, but I am adamant that people who don't know all the facts about PML cause more harm than good ( a little bit of information that they have doesn't even come close to all of the accurate data that has been reviewed by top microbiologists [plus neurological specialists] at Biogen & √Član & published by experts of the New England Journal of Medicine regarding this medication).

    Okay, I'm jumping off my soapbox now..., if you like-write to me "K" at:
    LGLBGL2003@aol.com and please reference "Tysabri" in the subject line of your e-mail so that it does not go into my spam folder.

    In short and to the point (too late now? Heehee), I would get on Tysabri therapy and ASAP.

    Lauren :)

     
  • At 2:13 PM, Blogger Lauren said…

    Hi to the other Anonymous that had her recent MRI..., you might be pleasantly surprised by the results of your recent MRI. Call your doctor's office and ask for an appointment to go over the results of the MRI with you.

    Your MRI may show either a reduction in the lesions you already have, show no new lesions, or even show some of your older/smaller lesions have disappeared completely... you never know!

    Even though I'm not a doctor, I believe that depending upon many variable factors such as how long you have had MS, whether any of your prior damage is permanent or temporary, whether or not you have an aggressive form of MS, etc., you may find very small and slight changes/improvements in your symptomatology somewhere around the fourth to sixth infusion (which many patients have described to me).

    As for it being termed "your poison", I find that term are odd because there's nothing poisonous about Tysabri..., the only thing it is doing is attaching itself to the inflammation cells (T cells) that your body is producing & which are trying to get into your Central Nervous System by crossing the Blood Brain Barrier where they attack our myelin & do so much damage (i.e. lesions/disability). When Tysabri attaches itself to these T cells, a majority of the T cells are not able to cross the Blood Brain Barrier--that's why it is called a "selective adhesion molecule"..., it doesn't destroy anything like chemotherapy does, hence no poison .

    How 'bout call it something like your monthly dose of glue? ha ha!

    Lauren :)

     
  • At 10:28 AM, Anonymous Anonymous said…

    Hi, Lauren,

    Ive read your blog with much interest, and I'm so glad you're doing well on Tysabri for such a long time. I was diagnosed with RRMS in May '09, after some 15 years of really mild symptoms, the more recent years having more serious flairs. '09 took the cake! I had 3 big flairs that I never completely recovered from. I started Rebif in Jul '09, and after 4 months had 2 back to back flairs (or maybe just one BIG flair) that left me with profound weakness.

    I quit the Rebif after it started giving me hives. I really don't want to take Copaxone b/c of the side effects - especially since I go into SVT (supraventricular tachycardia) at the drop of a hat. So I'm starting Tysabri this week. I'm hoping for the best.

    I sometimes wonder if my RRMS isn't becoming SPMS because of all the trouble I've had over the last year. Either way, I hope things get better.

    Thanks for being such a positive voice!

    Lisa
    Santa Cruz Mts., CA

     
  • At 12:31 PM, Blogger Lauren said…

    Hi Lisa, it is so nice to meet you and thank you so much for your comments on my blog.

    To a fellow "rain-soaked" Southern Californian (Ha!), I wish you so many wonderful results once you start Tysabri. You may find that you won't really see results (which could be slight & small) until you reach between the fourth and sixth infusion..., but then again, they could happen sooner, wouldn't that be nice?!

    I would like to comment on something you said..., you said "I sometimes wonder if my RRMS isn't becoming SPMS because of all the trouble I've had over the last year. Either way, I hope things get better."

    Even though I am not a doctor, I would guess that you could very well be correct in that you have very slowly over the years (and particularly last year) progressed to SPMS with relapses.

    Thankfully, we have a medication that is 68% more effective at preventing further relapses, slowing the disease process, plus it has been proven with published data that it can improve the patient's Quality of Life!

    Lisa, dearheart, I hope and pray that the damage done from your prior relapses is only temporary, and with Tysabri's help, your body can regain most of what was previously lost to MS.

    Please let me know how your first infusion goes, and please keep me (and the other readers of my blog) up to date with regard to your progress on Tysabri..., good luck!

    I am sending you all my very, very best--Lauren :)

     

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