Worried about Tysabri and brain damage side effect

[Curtis123]

Diagnosed --June 2004 ...week in hospital-(a "teaching hosital of all places which means at any given time I could have a group of Med students looking over the shoulder of the my attending Doc as he would "take a look at my back side"). Left Hospital with prescription for pentasa/predizone led to REMISSION.
-- Sept 2009 ...Flare/denial = switched to asacol/predizone (lost alot of weight) GI prescribed Imuran (is that the two shots in the stomach?)--
Remicade infusion, Cimzia...all failed.

All the tests...Flex Sig, MRIs, Cat Scans, Colonoscopies and blood work. Two ER visits...just pushed on through obligations...became severely anemic led to Blood Transfusion.

--Aug 2011...DVT in left leg (due to prednisone). Admitted for what turned out to be 30 days (do you know how many "Law and Order re-runs you can watch in 30 days LOL... I do). Taken off Warfrin so they could remove 2/3 (18 in) of my large Intestine.

--Sept 2011...Left Hospital with my colostomy bag. Gained weight...I could eat again without vomiting.

--FEB 2012...reverse ileostomy. (no maintenance meds)
Latest Colonoscopy revealed ...Crohn's is back and in flare...currently back on prednisone 30mg until next office visit to discuss Tysabri.

---Right now I'm terified after looking into Tysabri --black label warning "could bring about irreversible brain damage" WTF? I have a three year old son to raise--am I really supposed to risk it?

---any input?

 

[David]

Hi Curtis and welcome to the forum.

Ugh, that's quite a predicament you have I know manzyb is on Tysabri, mentioning her name will hopefully bring her to this thread to share some thoughts.

Yes, there is a risk of such complications but I'm sure they're very remote. Have you used enteral nutrition at all?

We're here for you!

 

[Manzyb]

hi curtis!

I am on Tysabri. I only just had my 2nd infusion though.

As far as the black label warning about the brain damage. There is a risk with it called PML it is a brain infection that is very rare, and it was mostly people who were taking the drug for MS that were getting it.

However, now they have a blood test they can do to find out if you would be susceptible to getting it or not. It is called the JC antibody virus. If your test comes back okay for this, then you can now take the medication without worrying about the serious brain side effects.

So far, I've not had any side effects other than being really tired for the first day or two. I haven't noticed any real change in how I am feeling yet, but I only just received my 2nd dose, and they say it could take up to 3 months to work fully.

If you have any more questions, feel free to ask! It was a really scary decision for me as well, but when my doc told me about that blood test to check to see if I would get PML I felt a whole lot better.

 

[David]

Great information Manzyb, thank you so much!

 

[happy]

Curtis123,
If you have any questions about enteral/elemental nutrition, please ask.
I have not had any surgery for IBD, so I don't know about the possibility of remission with EN in your case; however, EN might buy you some time while you sort out other treatment options.

 

[Manzyb]

Anytime!

Curtis, please feel free to PM me or e-mail me if you have questions or concerns. IF I don't know the answer, I can call up my infusion nurse and she'd help me out.

 

[Curtis123]

Manzyb,
Thank You so much. I'm speachless. I've gone from never discussing my condition with anyone outside my imediate family to finding "this Forum" and posting...I cannot get over how much comfort I recieved from your reply...it sounds cliche but to realize "we are not alone" helps...members such as yourself strong enough to assist those with fears..WoW. It goes without saying you'll be in my prayers. Don't be surprised if I email you in the future (I really want to know when you start seeing a difference.)

 

[Manzyb]

This is a really great community of people!! No matter what your problem is there is someone who can completely relate, or knows someone to point you in the right direction

E-mail me any time! I am hoping I start showing improvement soon. If after 12 weeks you do not have any noticeable changes with the Tysabri, they make you stop taking it. They say at that point the risks do not outweigh the benefits. I'm keeping my fingers crossed!

I'm glad I could help calm some fears! Good luck to you, and keep us posted on what you decide to do.