Tysabri Question

Murph · Post by **Murph** » Wed Jan 02, 2008 1:26 am

Yes I want to congratulate you too Ewizabeth, what you have acheived is awsome because I could not imagine having studied & worked, I too have dropped to 4 days but really want to throw it in @ the moment. SO GOOD on ya girl!!!!

My Neuro thinks I should be medicated for MS so I can feel like I am in control of the disease - well sort of,think he says that becuase I am so anxious all the time. Just feel like the life has gone out of me!

Happy New Year too you too >)

Murph · Post by **Murph** » Wed Jan 02, 2008 1:52 am

Hi Lee, just want to say I GET YA with the depression thing - I really feel for you. Please keep in contact with your docs - its so important to have that help when you are feeling low.

Take care - sending some possitive vibes your way!

Murph · Post by **Murph** » Wed Jan 02, 2008 9:43 pm

Hi,

I thank you all for your replys about Tysabri - but no one has mentioned the dreaded side effect that worries the most (PML) The brain Virus!

Has any of you who are on Tys looked into it, they say its only 1 in a thousand chance but I wonder if I worry too much about it.

CureOrBust · Post by **CureOrBust** » Thu Jan 03, 2008 2:43 am

Murph wrote:no one has mentioned the dreaded side effect that worries the most (PML) The brain Virus!

Has any of you who are on Tys looked into it, they say its only 1 in a thousand chance but I wonder if I worry too much about it.

I am not on Tysabri, or looked too far into it, however, my neuro was quite involved with the trials, and when I brought up the cases of PML, he was quite adamant that it was because of the combination treatment (Tysabri & Avonex from memory). Tysabri alone is thought to be much safer, PML did not occur in people only receiving Tysabri. Maybe others can correct me if I am wrong in my understanding of the circumstances?

HarryZ · Post by **HarryZ** » Thu Jan 03, 2008 7:52 am

I am not on Tysabri, or looked too far into it, however, my neuro was quite involved with the trials, and when I brought up the cases of PML, he was quite adamant that it was because of the combination treatment (Tysabri & Avonex from memory). Tysabri alone is thought to be much safer, PML did not occur in people only receiving Tysabri. Maybe others can correct me if I am wrong in my understanding of the circumstances?

When PML first showed its ugly head in those 2 Tysabri/Avonex patients, James Mullen, CEO of Biogen/IDEC came out in the press and stated that in the thousands of patient month use of Avonex, there had never been a documented case of PML associated with it. He was obviously protecting the cash cow Avonex drug for Biogen but even today, nobody knows if the combination use of these two drugs was responsible for PML or not. So for any doc to state that PML was the result of a combination treatment can only be considered speculative.

The other patient who ended up with PML, a Crohn's disease person, had stopped using any immune altering drugs for at least 8 months before starting on Tysabri. He became very ill, very quickly from PML and died. Some people tried to state that this person died because he was on other immune system alterning drugs at the time but that was simply not true.

Bottom line is that nobody really knows the association between Tysabri and PML. The good news aspect about this is that there is a heck of a lot information about PML out there now than ever before and MS neuros are far better educated in looking for its symptoms.

Harry

Murph · Post by **Murph** » Thu Jan 03, 2008 1:59 pm

Thanx again for your response. My Neuro told me that if you get it & they treat it in time you wont die but most possibly end up more disabled!

Having said that, he was very positive about the drug, Ahh I dont know - my sister says just risk the MS and dont go on it, my Neuro says I really need to consider being medicated. My worry is I have 3 kids and God forbid if I was to be unlucky enough to get PML. I always think of what sort of life are they going to have if I got it because it would be devistating!

I have also been told that it is very important now to be medicated for MS early becuase although you may not show signs of progression physically, Brain Atrophy can be occuring early in the stages of MS! My girfriend was diognosed about 8 yrs ago and refused meds until this year when her MRI showed brain Atrophy (shrinkage).

I think the dilema for me is I cant go back on the injections due to the depression being axaserbated by the Interferons.

Ahh...what to do???????????

superman · Post by **superman** » Thu Jan 03, 2008 3:01 pm

Out of the more than 17000 people taking Tysabri(alone) at the moment nobody has had to face any serious infection. The few who have got some tiny infections(i am not speaking about PmL) have been taking out from that medication straight away.
I have maybe no child, since i'm still 28 years, but consdidering i'd like to have some at a point, i'm happy to get tysabri. I have recovered quite a lot(back to short joggings after two years hobbling after half a mile of walk). This makes that i've got more than chance to be able to walk with them(kids)
Also when comparing the risk of being smashed by a car and the one of being infected by pml, i am feeling extremly comfortable.
Still one can prefer to lie down in his bed, curtains and doors locked

frenchy frog

Lyon · Post by **Lyon** » Thu Jan 03, 2008 4:13 pm

Murph · Post by **Murph** » Thu Jan 03, 2008 8:53 pm

Yeh yeh - get your point Superman!!!!!

Thanks guys, I think I was searching for some perspective and you both gave it in your last post!

Hey Bob, I feel a bit silly but what do you mean by the term Mono

Post by **NHE** » Thu Jan 03, 2008 10:47 pm

Murph wrote:I feel a bit silly but what do you mean by the term Mono

I believe that Lyon was referring to treatment with Tysabri alone vs. the combination treatment with Avonex which was used in the trial and led to problems with PML.

NHE

Lyon · Post by **Lyon** » Fri Jan 04, 2008 9:05 am

Murph · Post by **Murph** » Sun Jan 06, 2008 1:56 pm

Oh ok...thanks for that.

Does anyone know of other MS Forums? I need to find more people that are on Tysabri, so I can see how they are feeling on the Meds.

Murph.

Murph · Post by **Murph** » Sun Jan 06, 2008 2:03 pm

I just thought of another question - do you guys all have to pay huge amounts for your MS medication? I have heard that overseas you dont have the same access to the PBS (think thats what it is called) system we have in Australia.

Bob when you mention your wife being on a trial medication, what is that, I have never heard of that one - maybe its not available to trial in Australia, never the less I am interested to know what it is!

Bye for now

Lyon · Post by **Lyon** » Sun Jan 06, 2008 2:44 pm

Murph · Post by **Murph** » Sun Jan 06, 2008 8:26 pm

Thankx Bob,

How long has your wife been on the trial drug & does she feel any different? Thank you for your explanation on it, I found it interesting.

Murph

This Is MS Multiple Sclerosis Knowledge & Support Community