Seems it was one of the Tysabri test sites that discovered this, and more then just the competitors are paying attention:

http://www.nationalmssociety.org/sit...rch_2007sept14

Cherie

Hi Katty,

I get my 5th infusion on Wednesday. I'm feeling pretty good, with maybe some very minor improvements. :)

My plan, if I have to go off Tysabri, is probably to go back on one of the ABCR's. Maybe half dose Rebif? It worked well for keeping the MS in check for me, but set off a bad depression. I would take it with extra anti-depressants if necessary.

I don't see it being recalled again.

Even if people are worsening when getting off of it, don't people worsen when they go off any med? I got worse when I stopped the Copaxone and I was waiting to start a new med, before I started Tysabri.

I personally am not worried about this news at all. :)

What has me worried is the word rebound.....That is different than just the disease caming back, when you stop a Med. Did you ever have a rebound headache? It's usually worse than the original headache.

What they are saying seems to be, that the MS comes back faster and more furious, after stopping TY than what your MS was like before TY.

It's just my experience, but my MS did not get worse after stopping Avonex or after stopping Copaxone....As a matter of fact, I felt much better after stopping Avonex and Copax made no difference at all.

Hi Sally,

Good to see you. I just have been busy with 3D life and not around the computer much.

But this news was so worrisome to me that I wanted to share it with others. Something like this - no matter how small the group -is something that will stop me from going on this drug until we have more information about this. Yes, I agree with you that we're not talking about a resumption in disease activity similar to former progression levels, we're talking about a speed up of activity. I think this even suggests that it might be more than a "catch-up" amount, so that it's not just a fast accumulation of all the activity that was held at bay during treatment (so in the end you're no better or worse off than you'd have been without treatment, but it reads to me like the treatment actually could speed up the disease process and make it worse than it would have been if you've never been on the drug.

I don't know if the headache analogy is right since we're no worse off afterwards for that rebound effect, it's just that the med makes it worse temporarily afterwards and it seems like we get the full effect of the headache - what was minimized before and what it continues to be, all combined at once. That's what I want to know, if it's a temporary speeding up so we're only worse off temporarily, or if we ARE worse off for having taken the drug at all, worse off than we've EVER been... so it permanently changes the pattern, or even if it's worse temporarily, it is MORE than it would have been than if we'd never taken the drug.

Not sure if that makes sense - it's kinda confusing to me as I type it.

So I'm relieved that it's only been noticed in so few people, but I would really like to see a larger group to really see what's going on. If there's a risk that you may end up worse than if you'd never taken it, then that's a very serious consideration for me. But if, having taken it, while your disease process might speed up afterwards but you'd still come up at a level you'd have already been at, then that might not be such a big factor in my decision to take the chance. After all, taking a chance that it might help versus the chance that I'd end up where I'd have been anyway, that's not so bad.

It does make me wonder if there couldn't be some clue in there as to what this disease is all about though, why this would happen at all.

This research is important to pay attention to. Tysabri may be worth the risk for rapidly deteriorating people with MS, I suppose. For others, however, it seems like a good plan to wait and see what research continues to show as the thousands of Tysabri patients continue to infuse over the coming year or two.

This rebound effect is not seen in the abcr drugs, as noted above. I'm a good example of getting off of Avonex-- there was no rebound getting off of it after 18 months. Nor have I read any research suggesting their is a rapid decline getting off of the abcr's that is more severe than in the same patient before using an abcr drug.

I'd like to restate what a doctor friend told me a couple of years ago. He said that monoclonal antibody treatments are powerful drugs of which we still do not know enough. He said he would never advise his own family member to get on a monoclonal antibody drug.

Last month or so I saw my own PCP. He reiterated that opiniion. He said, that the drugs, in his opinion were dangerous. He has also seen a patient in his practice (not an MS patient) develop rare and serious problems of the bone on a monoclonal antibody drug.

Precisely!! This has been my "beef" about Tysabri from the beginning. One of the co-inventors of this drug, Dr. L. Steinman, has said the same thing about it. I will never forget how aggressively Biogen promoted and advertised this drug, even before it received its first approval. There just isn't enough reliable safety data about it to date.

Now if an MS patient is aware of these risks and wants to try the drug anyway, then that's his/her choice. If you want to take the chance then you have to be prepared for the consequences if they happen.

Harry

The problem is that people are not necessarily aware of all the risks, at least until later. It wasn't for some time that it became apparent there were people dying of PML, and now we are finding out about a potential rebound effect (even though it seems it was subjectively observed as far back as the trials).

Do you think they've incorporated this warning into the Touch program? If not, I'm guessing most people (just starting out and/or those already on it) will not be advised of a potential for this rebound effect.

Enough time has gone by that they should be able to get together a large sample and confirm this quickly, one way or another.

Cherie

From what I've read on the net from patients who are starting Tysabri, I get the feeling that they are not being told "everything" about the drug before starting. I think a lot depends on the doc who is prescribing the Tysabri in the first palce and what he is telling the patient.

It would be nice if someone who is about to start the drug could tell us what exactly they are told about the drug before making the decision to try it.

I knowthat Biogen is very aware of all these potential problems and they aren't the kind of people that I would trust in spending much if any time in pointing out the negative aspects of this medication.

Harry

Hi Cherie,

Just to let you know that Marg is in the hospital with Pancreatitis and is quite sick. She had been feeling lousy for several weeks and was seeing a specialist when it got worse quite quickly. She'll likely be there for 7-10 days or longer.

Harry

Sorry to hear about Marg, Harry. Have they figured out what caused it yet? Did it effect her lungs or kidneys? Sounds like a very bad bought if they are keeping her in for that long!!

I guess it is hard with to know if it is the MS or something else causing the trouble, with some of our symptoms. No doubt they would have blamed my Ulcerative Colotis on IBS if I hadn't gotten the dx several years before the MS became obvious. Was she having tummy trouble for a while then?

My thoughts are with the two of you, and I hope that she heals well. She's had a rough go for some time, eh?

[[[for both of you]]]

Cherie