Thanks PL!

I am not sure what your experience is with your neuro, but most of us were handed a bag of literature and tapes and told to go home and call back when we chose a drug. I don't know of any other disease where they do that.

Many folks are on one or another of the "CRABs" For some, their choice works very well. For others, they run through all of the choices. Obviously, on this Tysabri thread, there are people who Tysabri is working for, so we can be called "Tysabri cheerleaders" There are also a lot of folks who have been here who, for one reason or another, have chosen to stop Tysabri and moved on to another therapy, or chosen to go "naked" and not choose anything for now.

One of our objectives when we fought to get Tysabri returned to market was to allow us the opportunity to make an informed decision and choose the drug we wanted.

This board exists to support people and give them all the information we have to help them make an informed choice. They can talk to people who are on each of the drugs and assess the risks involved for each of them, the ease of use, the side effects, and hear others' stories on the good and the bad.

Each time a new report of PML comes out, folks who are on Tysabri each have to make the decision all over again in their head, to continue taking Tysabri or to make another choice.

Regardless of what anyone's personal choice is, we support them in their decision.

I for one, have chosen to stay on Tysabri once again, after the latest case of PML that was reported, with the information I have received here and from other sources.

Let us know how you are doing and we will support you in whatever therapy you choose!

Thanks to Komokazi for the heads up!

Info on the 10th PML case is now on Elan's site.

In brief:

On 23 June 2009, tenth confirmed post-marketing diagnosis of PML in a 27 year old male in the EU with a history of MS. The patient had previous exposure to interferon-beta, Copaxone, and IVIG. The patient received 30 TYSABRI doses between January
2007 and June 2009. Symptoms began with right hand weakness. MRI scans
revealed new lesions in the left motor and parietal cortex. PCR of CSF
returned 250-500 copies of JCV. Plasma exchanged started. Patient is
reported to be stable according to treating physician.


More good info: PML lesions do NOT enhance with contrast on MRI. I think I knew that but forgot it, and I may have posted it before. I just woke up and haven't finished coffee quart #1 yet!

thank you for the support.... nope, I got no information. Just a quick "debriefing" in his office and an ultimatum-of-sorts to call him in a week with my decision. I didn't really demand any info, partly b/c I was peeved at his attitude and didn't want to prolong the visit, but mainly because I figured all I would get is the same marketing info I can download directly from the manufacturer's online.

It's exciting to hear of people that are good responders to any drug, really.... a lot of times you just hear the stories of people who the med works only so-so for them, or not at all, which is unfortunate. It's reassuring that I have come across a few good positive stories for the ABCR/CRAB drugs (where the heck does that second acronym come from btw?)

A question on PML-- is it fair to say that this is a disease that comes about as a result of immune suppression or is the reason not very well understood yet?

Also, a question on Tysabri-- does it impair one's immune function in a general way, or is it more targeted to the MS? In other words, does one have a higher risk of coming down with common viruses/bacterial infections? And does one tend to stay sick longer?

Thanks!

Hi PL,

I've heard of other people having problems with infections, but I am one of those people who never gets sick. I've had a run in with salmonella and a ruptured appendix but the first was due to something I ate and the second was something that anyone could have!

When my doc does my bloodwork, I have slightly higher than normal WBCs, and he says that is from all the T cells milling around because they aren't getting into my brain anymore. He says all it does is block T cells from crossing the blood/brain barrier and damaging myelin, and that it doesn't block all of them but enough are blocked to stop damage.

I think that not enough is known to make a stand on what actually causes the JC virus to activate and cross the BBB. 80-85% of the population of the world carries the JC virus in their kidneys and it is usually dormant. PML has been seen in people with AIDS who are immune suppressed, in people who are treated with Rituxan, Tysabri, Raptiva, Cellcept, Methotrexate, Mitoxantrone, chemotherapeutic drugs, corticosteroids and some transplant drugs.

Because of the PML cases associated with Tysabri, more has been learned about PML than ever before. It was previously known as a fatal disease. Now, with plasma exchange along with treatment with mefloquine or mirtazepine, and steroids if IRIS develops, people are living after diagnosis of PML.

Reports on patients diagnosed with PML after Tysabri shows that most of the patients diagnosed so far are still alive. Some are doing well. Some of the earlier people are very disabled. The key seems to be increased vigilance and reporting ANY symptoms to your doctor. Since not many people are relapsing on Tysabri, when signs of relapse are seen, the new norm is to suspect PML first and vigorously test for it with blood tests, spinal taps, MRI, discontinuing Tysabri and further treatment if necessary. It COULD be just a relapse, but no one takes that chance now.

Sorry to be so long-winded but you did ask...

Thanks for the reply ... guess I'll wait till he comes back to this thread, if that's what he is on.

Great summary, RW.

Cherie

Tysabri works great for many of the people I know--which is about 10. The PML risk is there, and one should assume it fatal when it occcurs. The risk is higher for those who have received mutiple immune modulating therapies, especially when they have been given in close temporal proximity. If two immune modulating ("traditional") therapies fail to prevent flare ups then tysabri should be considered next along with other treatments--with the understanding of the risk of PML.

Which DMD are you currently taking, Mdot?

Kelly, I think MdotDdot is a visiting MD?

Welcome MD, please do introduce yourself. I have read some of your posts and you seem to be knowledgable about Meds, Sides and symptoms.

Are you also ill and need support? We are here for you, as all others, and welcome your special kind of support, as well.

Again, Welcome..

Hello MdotDdot and welcome to the Tysabri thread.

I have to disagree with some of your post.

The data since Tysabri's return to market shows that PML is NOT necessarily fatal anymore. PML CAN be treated. When caught early, there may be little damage. The key to preventing damage due to PML is VIGILANCE, and those of us on Tysabri are pretty vigilant by now, and so are the neurologists prescribing Tysabri, and the infusion centers administering Tysabri.

As to traditional therapies, who should choose? We get sent home with a pack of info from the drugmakers, and told to come back when we pick a therapy. It's OUR choice. It should BE our choice no matter what. I planned to go on Tysabri and was scheduled for my first infusion when it was pulled from market in 2005. I hadn't taken any other therapy prior to that and the ONLY reason I agreed to do Copaxone was because MY CHOICE was no longer available and Copaxone seemed to be the least obnoxious of the drugs available.

I waited and worked to get Tysabri back on the market, while suffering from relapse after relapse on Copaxone. Copaxone obviously wasn't working for me, so it would be considered inadequate. When Tysabri returned to market, I went on it as soon as I could get on it. I haven't looked back since.

It's my brain. It's my body. I am an intelligent person and I can weigh the risks and benefits using the available information. I would still make the same choice today, to use the most efficacious therapy available to prevent relapses and slow the progression of disability.

Tysabri is prescribed as both first and second line therapy. The FDA clarified that back in 2006. Tysabri is generally recommended for patients who have had an inadequate response to or are unable to tolerate alternate MS therapies. I cannot tolerate losing my brain to this disease, nor can I tolerate drugs marketed to people with MS that, at best, give the patient a 34% efficacy rate.

I haven't had a relapse since I started Tysabri and it's been over two years now. My MRIs are tremendous. Not only do I have no new lesions and no enhancing lesions, many lesions seen previously are reduced in size or gone completely. My vision is back to pre-diagnosis levels, my spasticity and fatigue have been cut to 1/3 or better than where they were before Tysabri. My thinking is clear and I can read a book again without having to re-read every paragraph I previously read. I can retain information again. I'm not dizzy or walking like someone who is intoxicated. I can drive. I can work full time and work more than one job. Time is brain. So far, I'm holding on to mine in what I consider to be the best way that I can.

So, do you have MS? What therapy are you on? How's it working for you?

I'm just stopping in to say "Hi" and hope everyone is still doing well on their Ty journey.

I was so bummed when I got NABs with Ty. I have now been on Copaxone since March 22nd, and the fatigue is horrible! That was the one thing on Ty I noticed the most, I just wasn't so dang tired all of the time!

I don't have a lot of hope that when I have an MRI next March that I won't have many more lesions. But I've run out of drug options for the time being, and hopefully the C will get me by until the orals come out.

The good news is that I have such a good layer of fat all around I'm not having any skin problems with the C ! And no relapses, but then again, I didn't really on any of the drugs, just more lesions.

I feel a little bad because I went to a meeting with a doc from an MS center in Colorado, and he said he would have never changed me off of Avonex just because the MRI showed new lesions. He made the comment that you treat the patient, not the MRI! An interesting way of looking at things.

But it is what it is. Just wishing you all the best with Ty, and know I'm jealous!