tysabri cancer

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?

They may not let you take Tysabri because of your cancer treatment drugs, because they always ask me that question before giving it to me. So check with your doctor on that one.

Recently diagnosed with MS (November) and they are starting me with the drug Tysabri. Trying to find out what to expect and if it is helping others with their symptoms? All new to this, really have no idea what I need to know or ask? Just looking for someone with some insight on what I will experience.

I had been on Tysabri for 22 month's and just recently stopped. I was wondering if any new info. is out there on the drug Rituxan for MS? I have SPMS with RRMS. I was in a study 3 yrs. ago at UCSF and did really well on Rituxan. However, Rituxan is not an approved drug for MS and at that time my insurance would not cover it so I had to discontinue taking it. Or should I just take a break for awhile and not take any ms med"s?

Hi everyone, I have been gone from the forum for several months due to multiple illness's caused by having MS. Throughout my absence, so many members have contacted me and I wanted to say, "Thank You" and that I slowly getting back in the forum. I have a rare form of Narcolepsy w/ Cataplexy caused by MS and numerous other serious medical problems caused by the MS. As of today, I'm cancer free, still taking Tysabri and have been approved for SSDI.

I wish I could go on it but with my cancer I think it is a no go. Before the cancer I was waiting for it to come on the market. I am glad for everyone else. It is amazing there were no MS drugs when I first got MS. Then only injectables when I was finally diagnosed. Now look at all the new drugs on the market and in testing. It is wonderful. I love it that Teva could not keep this drug off the market.

Where I live, there is only once infusion center that is approved by the TOUCH program to dispense tysabri. It is a cancer center owned by a large corporation. They first told me that it was going to cost $400 a month to get the infusion (out of pocket...after insurance and up until I met my max out of pocket with my insurance). Well, that was a lot of money to me.

I sure hope that works for you. Are you JC positive and want to move off of tysabri because of the increased risk? Just because you are at 24 months, doesn't mean you have to stop. I wonder if there is a washout period from tysabri to rituximab? I know the relapse numbers jump when leaving tysabri for something else. I'm sure the neurologist has a plan for you. You can still visit your infusion nurses - just bring them cookies.

My neuro decided to send me to UCSF to see if Tysabri would work for me. We had a LOOONNNNGGG talk about the risks and the specialist gave me the impression that the risks were MUCH lower than they are. He also gave me the impression that if I tested negative for the JC virus antibodies that my risks were almost nil..

You might find this of interest- I have always wondered why we startt out wit hthe weakest drugs to treat our MS instead of going at it as agressively as possible - Biogen Idec and Elan Submit Applications for First-Line Use of TYSABRI in anti-JCV Antibody Negative Patients with MS http://tinyurl.

Do you know why your doctor wants to start you on Tysabri rather than one of the more first-line treatments?Tysabri is usually used when less 'extreme' measures haven't worked, or when secondary progressive MS is pretty clearly evident. Not saying that is how things work on paper, but in the real world most often T is considered only after other treatments have seemed to be ineffective.

I used to think MS drugs were high until I got Cancer. My Cancer drugs are $100,000 a month and I have to pay $4,000 of that. MS and Cancer are expensive and I have both.

They found out the reason people contracted PML was because they were taking Avonex/and the other MS medications with Tysabri. I think the Tysabri has given me a second chance at helping slow my disease progress, but with out it I would be on no MS medications to slow the disease. I did alot of research before I decided to start the medication and the one resource that helped me make my decision was reading the Tysabri diaries on line. www.msrc.co.uk/index.cfm?

I have had MD for 18 years. Been on Avonex, Betaseron, Tysabri, and now Tecfidera. Unfortunately, I'm also on lots of other medications, mostly due to terrible central pain. My neurologist made me stop the Tysabri after 24 infusions because of safety concerns. I felt my overall best while on Tysabri and have asked him if and when I might be able to go back on the monthly infusions. He does not have an answer for me at this point.

Are any of you on Tysabri? My doctor has suggested that I consider starting Tysabri treatment. His neurology practice runs a TOUCH infusion center. I've been on Copaxone for four years and have just had my first flareup. My recent MRI shows progression of MS with T2 hyperintense white matter lesions in the pons of the brainstem and the frontal lobe. Several of the older lesions have increased in size. Five years ago I was on Avonex. I had multiple flare-ups the whole year on this med.

I would like some information/details from anyone who has had (or seen) the rash you can get from Tysabril and/or PML?? I have been on Tysabri 10 years so far without any major issues. I was outside after my treatment for 10 minutes or so. After taking my shirt off, my husband gasped and asked what was wrong with my back.

I've been tested twice in the last year, and they were both negative. Since you can acquire JCV at any time, I opt to have my status tested once a year since I'm on Tysabri. There is also a Tysabri antibody titre available, now. I plan on doing that once a year, too, although development of Tysabri antibodies is relatively rare.

The injections only work 33% if started at the beginning stages of Relapsing Remitting MS. There is Tysabri an infusion and their are drug trials for oral medications. Sometimes they can even use chemo but it is rough stuff. Unfortunately to date these are the only proven treatments. Some people go to other countries to get stem cells. The problem is stem cells can't repair damage they can only in some cases slow future damage but usually only for awhile.

Well I saw my neuro today and after a lengthy discussion with both him and the nurse, the subject of UTI did not come up! There was so much else to cover, I completely forgot to ask and they apparently did too. Argh. Why didn't I write it down? No 12 year old resident this time lol so it was nice to get to know my neuro better. We had a long discussion about changing treatment.

I think I confused some people with the 3 month visits. My tysabri is infused every 4 weeks via IV at a cancer care center 45 mi away. The every 3 months visit is to follow up with the Dr. You guys are right I totally am just a study. I was excited at first to get accepted into UCSF, but tomorrow the first thing I am gonna ask my neuro if there is a TOUCH Program more in the 45 mi range. My excitement to get accepted up at UCSF was not all it was cracked up to be OBVIOUSLY!!!

My new neuro suggested Tysabri based on increased lesions on Interferon (Rebif). Any persons out there on Tysabri that could share their experience?

Hi I had my port a cath put in 2 weeks ago for my tysabri infusions it wasnt too bad they didnt want to put me to sleep because of the ms and the swallowing issues so some versed and locals and it was done. Last thursday I had to have a blood draw my neuro wants liver tests a week before every infusion so they used the port well omg and other words it hurt like nothing I have felt before in regards to needle sticks that is.

He feels that Tysabri is the way to go. I know that there are others here on it or used to be. I would love some insight on what to expect, how long it takes, etc... Thanks!

I will start tecfidera in 3 months I hope I dont have the rebound effect I have heard about after stopping tysabri. Tysabri has really changed the way I feel was using a walker now nothing and I do Zumba too. I hope I stay like this but having doubts. anyone using tecfidera? How was your experience.?

Common Questions and Answers about Tysabri cancer

tysabri