JC blood test results

[SarahL2491]

Friday I called my neuro to find out if they want me to do a washout period on Tysabri, as they are considering me for the new drug out in March.   I've ben on Tysabri almost a year and JC+ from the start

The nurse told me my test showed 1.03. which means nothing to me.

Anyone know anything about this test?

Sarah

[kwarendorf]

It was about 3 months after stopping Tysabri that I started Rituxan. I guess that was my washout. I had no ill effects. It may be because I have graduated to SPMS, but I saw no increase in symptoms during the washout.

Submitted FYI :-)

Kyle

[candy158]

Good Luck Sarah on your search for a new drug.  I can't offer you any knowledge,, cause I'm just starting Avonex, and haven't been on the other big guns yet.

But, what I can offer you is a shoulder, and a cup of tea in my garden .!!!  

Merry Christmas my friends, and may you all be blessed in the new year !!  

xo

[Lulu54]

Penna is right about the research - the washout peroiod for Tysabri can be treacherous.  They found in a relatively quick period of time (I'm remember 3-4 months), people coming off of Tysabri can land in the mother-of-all relapses.  It is as if the immune system throws one big party once the chaperone (tysabri) is gone and trashes the place.  The washout is necessary but be sure it is as short as possible.  If you opt off treatment for a while that also can create these problems.  I know you will keep researching, Laura

[PeninaD]

Actually, they recently found that 3 month after switching off of Tysabri was too long, had more relapses, that 8 weeks was a better time frame.  Have your Neuro read up on the most current findings.  As for JC virus, no idea on reading. Sorry.

[SarahL2491]

you are right, Laura, I've been constantly reading up on it and would stay on Tysabri, although I am still having relapses, my summer one lasted 3 months, but JC+ bothers me.  Although have been from the beginning, as you know.  

My insurance doesn't cover the shots or the pills and I did not do good on the Tecfidera.  I either will stay on Tysabri or just wash out on all of it for awhile.  

[Lulu54]

and to answer your original question - I have no idea what that number represents nor can I find it in searching.  Perhaps a call to your doc would be in order?

[Lulu54]

Lemtrada has been approved for use in the EU, in Canada and just this week or last in Australia.  The FDA review panel here in the US was split but ultimetely recommended that it be approved and it has another round of hearings coming up.

It is a drug with the potential for serious problems, including once it is in your system it cannot be removed.  Even Tysabri can be removed if it causes an adverse reaction.  

The trial results have been impressive.

Another form of Lemtrada - Campath - has been used as a chemo drug for years.  I really get heartburn about how the mfg has jacked up the cost of this drug for MS use and has continued to give it to the cancer patients for  FREE.

It is one of those drugs you need to know all the possibilities, have the serious discussion with the doctor, and not be pushed/pressured into it unless you are sure.  Like all the other drugs, it is a very indivdual, personal decision and not one to be taken lightly.

I hope this makes sense ... Laura

[SarahL2491]

I just re-read my original post and I meant to say I had been on Tysabri for almost 2 years.  January would have been 2 yrs.

[SarahL2491]

the new drug is called Lemtrada but it does have serious "possible" side effects involving the thyroid, skin and breast cancer.

There are some hot debates on it, my neuro says you take it for 5 days the first year (in a row) and then the 2nd year you take 3 infusions and then you don't have to take any more.  The possible side effects are bothering me, but then PML was quite the threat also!

I'd read up on it before you consider it.  I'm still doing research, but its my understanding it will be available to the doctors in March.  Ironically, that's when I make my 465 drive to see my neuro.    

[torikat32]

Sarah

what new drug in march? I have been off tysabri since sept my liver didnt like the drug anymore. I was told 3 month washout period. I have also heard of the rebound effect after coming of tysabri. So far ive noticed my fatigue is worse and my balance is off again but not like it was. Before tysabri I had a cane and walker now I use nothing and would like to keep it that way. I started doinf volunteer work for hospice and love it. I would hate to go back to what I was before tysabri. I am seeing ms specialist dec 31st to see what my options are for dmd. I wont go back to shots and not happy with side effect profile from tec. I was hoping lemtrada would been approved by now as I would try that.

Good luck hope you get answers

kat