I have remitting relapsing and I was tested for this and was tested positive. I have a family friend with the progressive form and he is on TYSABRI. He does awesome on it, better than anything he's every tried. I personally am using Gelynia currently. I was part of the study since 2006 and fatigue is my biggest complaint.

The virus is related to PML, it's scary but I had considered it. Good luck!

I've been on Tysabri for over 2 years and recently tested postive for the JCV antibodies. I've been researching journal articles and have found different estimates of the risk. Here is a link to a recent study that was published and is available on the internet. It states the risk for those who have not been exposed to a prior immune suppressant, but have been on Tysabri for 25 to 40 months and test positive for JCV antibodies as being 2.5 per 1000. This study was just published in January 2012. Here's the link:

http://www.uptodate.com/contents/natalizumab-for-relapsing-remitting-multiple-sclerosis-in-adults?source=search_result&search=Natalizumab+for+relapsing-remitting+multiple+sclerosis+in+adults&selectedTitle=1~25

Melanie,
I just love love love Julie Stachowiak. I subscribe to her weekly newsletter and have recently purchased her book "The MS Manifesto". I think you would enjoy her works if you are so inclined.

I also tested postive for the JCV and am on Tysabri. My neuro will have me go to every other month infusions once I reach my 24th infusion to help lower the risk of PML. I just saw my neuro this week, and she is taking another JCV test - I won't find out why she needs another one but I was game.

On another note, also important for Tysabri users is to have their body viewed by a determologist. Apparently, there is a higher risk for skin cancers with Tysabri. This should be done YEARLY by Ty users. I didn't know this, and wondered if other Ty users were aware of this. My neuro stressed the important of this to me, so I thought I would pass that bit of info along...Sounds like she is more worried about skin cancers than PML which has little risk really.

I see my dermatologist annually and asked him about this at my last visit. He said that he had read the studies and felt the risk of Tysabri causing skin cancer or Melanoma was quite low although it's always a good idea to have skin cancer screenings. If you read the study it was only 2 patients who had melanoma and they weren't sure if they already had it before they started Tysabri or after and they really weren't sure if it was related. In one of the patients as I recall it was a lesion in her eye that had been there before she started Tysabri. The other I don't recall, but you can read about it online. I read about it before I started Tysabri because my family has a history of skin cancer and melanoma and so I've always been very cautious.

I also get Julie's newsletter and enjoy it, but with studies coming out all the time. I think the stats are always changing. When I was researching and trying to find out what the stats really were I found all kinds of numbers depending on when the study came out. Who knows what the true risk really is. I think we just have to decide for ourselves what we're willing to accept.

Thanks for the info Lynne. She is great. I didn't know she had written a book! Just saw a dermatologist recently and first thing she asked me was what MS drug I was on. Went on to say that a certain MS med causes skin cancer risk - she might have said melanoma. So now I know. And no derm ever mentioned this before to me. Just so happens she is head of the dept. Smart lady. Good thing to let everyone know about this. Thanks!

Melanie

Here's a link to a report that states the risk factors for PML based on registry data kept by Biogen as of March 2011.

It states the risk for patients who are postive for JC virus antibody and have been on Tysabri for 2 years is 2.8 per 1,000.

I realize that still isn't extremely high, but I haven't had the best luck with avoiding rare diseases and such. For example I've had 2 parotid tumors 7 years apart. Only 1 out of every 100,000 individuals get these tumors. They are so rare that most family doctors will never see one in their practice. I also had dystonia along with vertigo as presenting symptoms of ms. Dystonia is extremely rare as a presenting symptom of ms and made my diagnosis very difficult and delayed it by several years. And I also have a very rare arrhythmia that went undiscovered for long enough that my heart became enlarged. I just don't feel particularly lucky.

Anyway here's the link : http://www.medpagetoday.com/MeetingCoverage/AAN/25972