Anyone taking Tysabri?

[biker]

Is anyone on this forum on tysabri? If so, tell us about it. What kind of screening did you have to go through to start on it? How many infusions will you be taking and what kind of monitoring are they doing? I think a lot of us would like to know for future reference.

[mmcc53]

There are very specific screening protocols for Tysabri. MRI must be done first, diagnosis of MS must be definite and you have to be off all immunosuppressants before taking it. The length of time varies depending on the drug.

There is a detailed a required list of questions the medical staff must go through with you before each infusion and risks, etc. must be reviewed with you and you have to sign a paper that this has all been done.

I have had one infusion - next one is in about 10 days. There are several people on this forum who have had up to three and some who took it for 2 years as part of the original trials.

It is not recommended unless you have failed on the CRABs first.

Here is one site to start with: http://www.tysabri.com/

Here is another: http://mspatientsforchoice.org/

[*Joy*]

Bumping this up

This is a good thread and I hope you'll get more 'personal experience' replies.

[biker]

I can't believe we only have one person on the forum on tysabri. At the doctor I go to, I was talking to the infusion nurse and he said he had only two. I know they are being much more selective.

[Pegakafarmgirl]

I am on the 3rd infusion, come Wednesday, yes the infusion nurse is in there during the hour or so of meds,, checking vitals,,, had to get a MRI, { its mandatory} before I begun,, they give you a whole list of questions, each time you go in for treatment,,

improvement ?? maybe a slight one,, side effects ?,, depends on the individual,, each person is different I spose,, I had terrible mood swings, tired more then usual,,

and I am still getting after the nurse, bout a flu shot,, one thing, resistance will be down ,,{ immune} so be careful

good luck,,,

[vms]

i had 2 doses before it was withdrawn. I'm scheduled for a mri on the 16th.Then I'm supposed to be off betaseron for 2-4 weeks.

Vincent

[LynnD]

I have had three doses of Tysabri, my fourth is scheduled for the 21st (I did not take Tysabri when it was first released). Prior to initiation of treatment an MRI, blood work (including flow-cytometry to check some specific cell counts), and two educational appointments with my neurologist were required. I then completed the Touch registration paperwork with my neuro. When I first started this process in late June I had been told I would have to discontinue Copaxone for three months but by the time I was approved the washout period was reduced to four weeks (I understand it is now two weeks for Copaxone). A routine follow up appointment with the neuro between the 3rd and 4th dose is required.
The improvements seem to be cumulative, each month getting a little better than the last. Side effects for me have been moderate fatigue, joint aches and general malaise for two to three days. I think these reactions are starting to ease slightly; perhaps I'm adjusting.
I cannot tolerate the interferons and needed monthly pulse dosing of solumedrol while on Copaxone so Tysabri was an important opportunity for me. It doesn't come without risks or cons, just as with any drug.

[Virginia]

A couple of times on here I have read where people were talking about improvement when taking Tysabri. I just wonder if I am confused about this. I did not know that it could cause improvement. I thought that it just slowed the progress of the disease just as the ABCRs do. However, I thought that it had a little higher rate of effectiveness, but I also thought it was mostly to be for people who could not (for whatever reason) take the other drugs. So am I wrong and does it actually bring about improvement in symptoms or disability?

Thanks,
Virginia

[mmcc53]

A couple of times on here I have read where people were talking about improvement when taking Tysabri. I just wonder if I am confused about this. I did not know that it could cause improvement. I thought that it just slowed the progress of the disease just as the ABCRs do. However, I thought that it had a little higher rate of effectiveness, but I also thought it was mostly to be for people who could not (for whatever reason) take the other drugs. So am I wrong and does it actually bring about improvement in symptoms or disability?

Thanks,
Virginia
There have been many people who improved while on Tysabri in the trials.

Also, its not just a "little" higher rate of effectiveness - it is MUCH higher. Try the web sites I posted above. It is by far the MS drug with the highest rate of halting/slowing progression and patient improvement.

It was originally for anyone with MS, but after it was returned to the market is recommended for those who have failed on CRABs, and only for those with a relapsing form of MS.

Novantrone is another MS drug which has a higher rate of effectiveness against MS than the CRABs but it has more dangerous side effects. It is for MSers with "worsening" MS, not just relapsing forms. About 1/3 of people are not helped, 1/3 of people stop progressing or slow the rate considerably, and about 1/3 show improvement.

I was one of the lucky ones who showed improvement - and it was pretty dramatic, but there is a lifetime limit of about 8 doses, which can be extended to 12 doses. Since it is given every 3 months, you are looking at a max of 3 years for most people. Some people tolerate stretching the time between doses to more than 3 months - and one person who used to post here was maintaining the improvement for more than a year after one of his doses.

I used up my 12 doses, but it was absolutely worth the risk for me. That is not the case for everyone. IMHO someone with mild MS would probably not find the risks worth the benefit.

CRABs are almost always the first line of defense because the risks are low, but if they don't work and/or the MS is progressing rapidly, Tysabri, Novantrone, and other drugs with varying risks are available.

[biker]

Good and informative post mmcc53!