I’ve noticed quite a few hits coming into my site looking for information on [tag]Tysabri[/tag].  Let me state, very clearly, that I have not taken Tysabri, I am NOT a doctor and what this article contains is ONLY MY OPINION and is not to be mistaken, in any way, for medical advice!  With that said, here is my two cents worth on Tysabri.

When I first heard of [tag]Tysabri[/tag] ([tag]natalizumab[/tag]) I thought it sounded great.  Apparently, so did the US Food and Drug Administration.  The medication was “fast-tracked” for approval and was on the market very quickly.

All was looking well and people with MS were very excited about the potential of this new drug.  As I recall, it was being tested in conjunction with Avonex.  Things were still looking great and then something really bad happened – there were a couple of unexpected deaths related to Tysabri and next thing you know, it’s back off the market.

It seems that, for some reason, people taking Tysabri might get [tag]PML[/tag], which is [tag]progressive multifocal leukoencephalopathy[/tag].  It’s a brain infection that is very bad and can cause anything from disability to death.  There is no known way to either prevent, treat or cure this brain infection.  Sounds bad, right?

Okay – the section below is copied and pasted from the [tag]Tysabri Patient Medication Guide[/tag] and I downloaded this guide from the www.tysabri.com website on February 4, 2007 so it’s the latest information out there, as of this posting on February 4, 2007.  If you are seriously considering taking Tysabri, I strongly recommend that you go to that site and read everything and understand everything.  Okay – from the Medication Guide:

MEDICATION GUIDE
TYSABRI (tie–SA–bree)
(natalizumab)
Read the Medication Guide given to you before you start TYSABRI and before each infusion. There may be new information. This Medication Guide does not take the place of talking to your doctor about your medical condition or your treatment. Ask your doctor or nurse if you have any questions.
What is the most important information I should know about TYSABRI?
• TYSABRI increases your chance of getting a rare brain infection that usually causes death or severe disability. This infection is called progressive multifocal leukoencephalopathy (PML). PML usually happens in people with weakened immune systems.
• No one can predict who will get PML.
• There is no known treatment, prevention, or cure for PML.
• Your chance of getting PML may be higher if you are also being treated with other medicines that can weaken your immune system, including other MS treatments.
• Even if you use TYSABRI alone to treat your MS, it is not known if your chance of getting PML will be lower. It is also not known if treatment for a long period of time with TYSABRI can increase your chance of getting PML.
• TYSABRI is available only through a restricted distribution program called the TOUCH Prescribing Program. In order to receive TYSABRI, you must talk to your doctor and understand the benefits and risks of TYSABRI and agree to all of the instructions in the TOUCH Prescribing Program.
Page 1 of 6
Final
• If you take TYSABRI, it is important that you call your doctor right away if you get any new or worsening medical problems (such as a new or sudden change in your thinking, eyesight, balance, or strength or other problems) that have lasted over several days. Tell all of your doctors that you are getting treatment with TYSABRI.
Also, see “What are the possible side effects with TYSABRI?” for other serious side effects with TYSABRI.

Kind of intimidating, isn’t it?  It was to me!  And as if that wasn’t enough, the last line refers to “other serious side effects” when you’re using Tysabri.  Let’s have a look at that part of the medication guide!

Other serious side effects with TYSABRI include:
• Allergic reactions including serious allergic reactions. Symptoms can include:
• hives
• chills
• itching
• rash
• trouble breathing
• nausea
• chest pain
• flushing of skin
• dizziness
• low blood pressure
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Final
• Serious allergic reactions usually happen within 2 hours of the start of the infusion, but they can happen at any time after receiving TYSABRI.
• Tell your doctor or nurse right away if you have any symptom of an allergic reaction, even if it happens after you leave the infusion center. You may need treatment if you are having an allergic reaction.
• Infections. TYSABRI may increase your chance of getting an unusual or serious infection because TYSABRI can affect your immune system.
Other side effects with TYSABRI include:
• headache
• feeling tired
• urinary tract infection
• joint pain
• lung infection
• depression
• pain in your arm and legs
• diarrhea
• vaginitis
• rash
• stomach area pain
Tell your doctor about any side effect that bothers you or that does not go away.
These are not all the side effects with TYSABRI. Ask your doctor for more information.

Okay, these aren’t that bad.  Many drugs have the same warnings, for the most part.  I do have to say that the two that I changed to red don’t sound that great to me though.  The other side effects aren’t that uncommon to see.

To be fair here, I’m not quoting and studies that show any stats on how many people experienced each of these side effects.  If you’re going to take this drug, you should be responsible, as the patient, to go and investigate and make a very informed decision before taking any treatment for multiple sclerosis.

My opinion, again, is that I personally wouldn’t even consider this drug at this time.  For what it’s worth, I don’t think the drug company wants me to yet either.  Since my Copaxone shots seem to be effective, they don’t recommend me for this drug.  Talk to your doctor, see what he thinks, become an informed patient and THEN decide what’s right for you.

Oh, one other thing about this drug that’s only been tested for a short time period.  Now they want to have it approved for use in the treatment of Crohn’s Disease as well.  I know that Crohn’s is a tough thing to deal with, just like MS is, but think about it carefully before you decide to jump on a new medication.

Slightly along the same line of thinking for me, I will not use ANY new Microsoft product until they have released the first service pack for it and I’ve been an IT Professional for 17 years now.  If I won’t put a new operating system on my computers until it’s been PROVEN to be stable and safe, why would I want to put a new drug in my BODY until it’s been proven to be stable and safe?

I guess you can tell that I have no plans to start taking Tysabri any time soon!  LOL  If you do, I wish you all the best with it and I’d love to hear your story of how it’s working for you personally.

Forgive any typos here!  I’ve had this article on my mind for a while now and haven’t written it.  Today, I had a comment on another post and the commenter was asking for anyone with personal experience with using Tysabri.  I guess that spurred me to write this opinion piece!  I’ve not really spell checked (although I do know how to spell!) and didn’t really even proof it.  This is the first draft and I’m letting it post! If I find anything I messed up on really badly, I’ll go back and try to edit it properly!

Vincent Moore