To Start Back on Ty or Not?

[cocogirl]

I had infusion # 38 last March. I had had numerous bad infections, pneumonia, toe infection, sinus infections, and acute pancreatitis so my MS specialist and I decided I needed a 6 month break from Ty starting in April.

I had major, major surgery, a Whipple for chronic pancreatitis, on July 23. They removed the head of the pancreas which was dead, the gall bladder, half the common bile duct, more than 1/2 of my stomach, and a portion of my small intestines. I survived, needless to say, and have been recovering from this event which is no small task.

Thirty pounds lighter now and feeling to be in good health, I am now facing the decision tomorrow of whether to go back on Ty. I have had minor problems with MS during my recovery but for the most part am feeling better than I have in 5 years. I am still JC virus + and I took Avonex as my first MS drug 15 years ago with a 5 year wait before trying a very short try at Beta, allergic. I had a 3 year wait before starting Ty after a 1 month try of Beta.

I have done super on Ty and love that there have not been any no lesions this whole time as of last April, last MRI. My question is there any evidence about how you can expect to respond after a 6 month vacation from TY? Also, any evidence of a greater PML occurence after such a vacation.

I don't want to do something stupid with my life now that I am pain free, abdominal pain, for the first time in 5 years and starting to love my life again. Thanks for putting up with the long post but felt you needed all the info to give a good opinion.

[rickalex2]

Wow!

You have been through a lot!! I am so happy you managed through all of that! I'm not sure I'd be so strong! I have been on Tysabri for over 54 treatments.. getting close to 5 years with no problems. Did they say all these things were due to the medications or did you have other sources that caused this? That's my question. If it had nothing to do with the Tysabri, I'd go back on it. I've never had any side effects from the Tysabri, other than being tired the day of the treatment. Especially because your JCV +. But I know its a huge decision and since your feeling so good I can see your dilemma!

[cocogirl]

Rickalex2,
The other problems had nothing to do with MS or Ty. I produce way too much Cholesterol and Triglycerides naturally without even including what I ingest. Triglycerides are the culprit behind the chronic pancreatitis and that brought on the acute attacks.

I met with dr. today and will go back to treatments on Nov.1. The biggest change at my infusion center is how many new patients are now on Ty and they have a limited number or chairs, 9, so they were booked up today. I also needed to work around trips I am making fun the holidays so this will work best. It will be infusion #40 when I start back. I told them that would put me in that most venerable zone and they weren't bothered at all!

I feel good to start again!

Thanks for responding!

Patti

[lindaincolorado]

Good luck cocogirl
I know there are some on this site who were in the trial, then infused when it was approved and then off when it was pulled and then back on when re-approved ... I hope they chime in

I've been on it for 6yrs never off so, I've got nothin for ya

[cocogirl]

Thanks Linda,
I have decided to start back up and will take my first infusion which will actually be #40, on the 1st of November. A little apprehensive with the first one but it should be fine.

Patti