Move on to Tysabri?

[Guitar_grrrl]

Dang!  I started taking Baclofen a week and a half ago, and within 2 days, I became extremely weak.  I had a gig coming up, and I couldn't even complete one song in rehearsal, let alone 2 hrs worth of stuff.  So, last Saturday, I weaned myself off the Baclofen to see if my strength would bounce back - and it didn't!  It got worse!  By Tuesday (yesterday) I was so dragged out I went into my Neuro's office while he was finishing his lunch.  He examined me, and I was clearly worse with everything.  We discussed the fact that since I started Rebif in July, I've gotten weaker, have had 2 back-to-back relapses, and a couple of incidences of hives (which may be all the figs I gorged on when they were ripe LOL!).  After quitting the figs,no other incidences of hives.  So this is kind of an unknown.  He thinks Rebif has failed.  So what next?

We discussed Copaxone.  I expressed reservations with the 10 minutes of side effects some folks get after injection.  I go into paroxysmal atrial tachycardia (PAT) at the drop of a hat, and become very anxious WITHOUT the help of Copaxone.  I couldn't even imagine going through THAT every night!  So our next thought, Tysabri.  That one has me nervous for the same reasons as Shermay (Debs).  But my EDSS is 3.5 - 4, right now.I need to do something... I'm going to try it...

I was so upset all day, yesterday, and blubbered all over my husband at breakfast.  We made the decision I should cancel the performance, rather than do really poorly up there. The gig was to be tomorrow night.  I called the booking agent of the restaurant yesterday afternoon, and actually sensed relief after our conversation.  As the day went on, I felt worse and worse.  I couldn't stand for more than 5 minutes.  My hands shook on the transducer.  I felt like I had to pound the buttons on the machine extra hard, because what I thought was normal wasn't even depressing them.
I signed out of work and went upstairs for IVSM.   I had my last injection of Rebif Sunday.  We'll let it clear out of my system.  I'll talk with the Tysabri folks with my Neuro together on Friday.  I'm still kind of on the fence with this.

I read the Tysabri diaries on the MS resources site (UK), and found them honest and encouraging.  They weren't all super positive, and one woman even had a bed reaction the very first time.  Others found it was the best thing since sliced bread, and were able to give up their canes, crutches, etc.

Just updating...
Cheers,
Guitar_grrrl

[Khiba]

I discussed Tysabri with my Neuro recently since I failed with Copaxone with flu like symptoms (go figure!) and they don't want me on an interferon since I am a cancer survivor. Their solution was no tysabri at this point but to try IVIG infusions.

My neuro is a bit off the beaten track, but she did her fellowship at NIH and believes strongly in IVIG for lots of these Neurological things. So I am putting my faith in her and going to start my first 4 days of treatment with IVIG on Monday. Its expensive but my insurance company is going to cough up a huge bunch.

You might ask your Neuro about IVIG and see what falls out.

Like you, I have lost a lot of strength in the last year and after being an athlete all my life and very very active type A person, this is just horrible for me. So I know where you are coming from. Baclofen doesn't do much for me either. I feel weaker with it or without it. But it does help the nerve pain  I have.

Good luck and hang in there. You are not alone.

Jessica

[Guitar_grrrl]

Yeah, you WILL need that hand for the upright!  They're sooo cool, though.
GG

[jensequitur]

Oh, that's no fun at all.  And a little discouraging...  I know how you feel about grasping at straws - right after my diagnosis, my right hand was really weak.  It came back a little - enough that I was able to go back to my regular activities.  Recently it's started being weak again.  I hope that it'll come back - I'm learning how to play the stand-up bass, and I need that hand.  

[Wobbly]

I just wanted to say I hope you feel better soon and get some help with this.. it sounds like you are reacting to the meds not well.... I hope you find something to help you.

let us know how you are doing and what choice you made... I don't know anything about the meds your taking so can't give much ideas or ??

take care of yourself
wobbly
dx PPMS

[Udkas]

Hi there,
I know nothing about the disease modifying drugs, so i can't offer advice and everybody is different and their reaction and I have had no experience with any of these but I just wanted to say I am thinking of you, and I understand it must be a difficult decision for you to make and scary that you are losing your strength so fast.

Cyber hugs your way.  I do hope you are feeling better soon.
Udkas.

[Guitar_grrrl]

I weaned myself off the Baclofen and got WEAKER.  That told me this was more than drugs.  My neuro exam was worse as well.  

Between 2005 (my estimation of when I was at my strongest) and August of this year, I believe I've lost half of my strength.  From August to the present, I've lost half again.  This is no fun!  I feel like I'm grasping straws...

Guitar_grrrl

[jensequitur]

Okay, Guitar girl, no figs for you.

The Copaxone 10-minute injection reaction is when you accidentally hit a blood vessel.  When the drug enters your bloodstream, instead of going into fat, you're going to get a vagus reaction - you'll feel like you're swelling up, and you'll get short of breath, and sweat profusely.  It's no fun.  But if you follow the directions and only inject in the approved areas, you'll be fine.  

So you said you got really weak with the Baclofen?  Do you think it's a relapse, or do you think it's the Baclofen?  I've been having trouble with spasticity, but I don't want to lose any strength.

[Guitar_grrrl]

I started Rebif in the middle of July, so that's 4 months, now.  Yeah, that's kind of close, but I've lost strength and It's really scary to me.  I was such an athletic thing, surfing, cycling, whitewater kayaking.  I could hold a headstand away from the wall for 5 minutes.  Now I can't even get up into a headstand.  I do still practice all the Yoga I can, though.

I know I should feel better after this pulse of IVSM.  

This is really putting the screws to my brain, trying to wrap it around the Tysabri idea...
Thanks for all your input.
Guitar_grrrl

[shermay]

Hi GG,

It’s a tough call, however I am right behind you all the way!

There are pros and cons to taking this drug, some people have found it marvellous, while others can only cope with s/e for a few months! this does not include the infamous PML, (JC Virus).

What I have found out is that you can be tested to see if you are a carrier of the JC Virus.  It’s a regular urine and blood test.  This can be done before you start Tysabri.

Nearly 90%  of the worlds population carry the virus, but our own immune systems keep it at bay.  Tysabri tinkers with the immune system, hence the reason for the virus coming to the fore.

I agree with Shell, that it can take 3 – 5 months for an interferon drug to work.  Maybe your Neuro is jumping the gun??

As for me, I am waiting to see if they pull it off the market, or make changes to their prescribing information.  When I had my second opinion last week, he said that there are more cases of PML than the stated 24 Biogen have released, and this information is only available to Neuros and PCP – great!!!!

Me too I am a blubbering mess, trying to get my head around all of this.  All I can say is do your research, and do it well.  Biogen is just a big Pharma that want out $$$$ considering that Tysabri makes then over 1 billion dollars a year!!!!

I have more information, and if you want, just PM me with any questions, I have been researching since August with the help of my eldest Son, who is really on the ball with this drug.

Hugs,

Debs xxxx

[HVAC]

I can't imagine what you are going through. Hang in there,
Alex

[rendean]

Hi,
Just wanted to let you know I was thiniking of you and sending only good and positive thoughts your way as you make your decision.  So sorry to hear of the need for changing your treatment and the increase in symptoms.

Hang in there!

Warm wishes for a sense of peace as you make your decision,

Ren

[sllowe]

And, Deb61's sister was (not sure if she still is) on it....

sorry to nickel and dime you w/the info

[sllowe]

Gurl and sharonocean...Here are a couple tysabri user members, but I know we had a couple more at one time..

http://www.medhelp.org/posts/Multiple-Sclerosis/Our-Tysabri-Users---Past-and-Present/show/658918

[sllowe]

Hey Gurl,

Oh, my. I'm sorry you have to consider this ontop of everything. Not an easy decision I'm sure. It was my thought that the interferons took at least 3 months to build. Especially since they titrate the dose for all those weeks initially.  

Since your still on the fence, (not to steer you away) just thowing that out there incase your lining up questions for the Dr. It's one I'd ask him about prior to meeting w/the tysabri folks.

I know the outcry was huge from MSers who were doing well on it when they pulled it off the shelf initially. They have come a long way since then from my understanding with checking for pml and that is very encouraging.

Your a fighter G-Gurl and I know you'll not make this decision lightly.  

With you all the way,
-shell

[Lulu54]

Hi GG, there is such a mixed review on tysabri - there was a woman at a seminar I went  to last week that had been on it for almost two years.  She has done very well.  And then we  know of folks who have not responded at all.

It is such a tough, personal call.  You have to assess the downside and decide what you are willing to risk.  

It sounds like you are doing exactly what you should - learn as much as you can and make sure you are not going into this blindly.

good luck,
Lulu