Starting Tysabri soon

[monnie115]

I'm signed up to start Tysabri in the next couple weeks. My doctor really recommended it as he thinks it would be a good option for me. It's just kind of difficult for me to wrap my mind around because it seems like it's used more as a last resort rather than a first line of defense. This will be my first DMD, and I'm a little nervous. Is anyone else using this as a first DMD? What kind of side effects can I expect? As far as my MS, I'm dealing with trigeminal neuralgia, tingles, zaps, and zings mosly. In the month since I last saw the doctor, apparently I've developed some weakness in my right arm and leg.

Besides dealing with horrible heat in NJ, I'm doing okay. We had terrible storms early Saturday morning that took down trees all over the place. We lost electric for 3 days. On Saturday afternoon, after dealing with 95 degree temps and high humidity, we packed up our pop up camper and went in search of a campground with electricity. Thank goodness for AC in the pop up!

[meg321]

At one time we thought I might be allergic to Copaxone and they tested me for JC and I was negative.  It turned I was also not allergic to the copaxone so I stayed on it.

I sometimes think about changing to Tysaribri since it is getting difficult to find a place on my body that doesn't have a hard lump, they do not go away often. And I almost always have reactions and its that I haven't tried, I have been on Copaxone for a couple of years now.

I am so afraid to change. And I know nothing about Tysarbi....

THanks, meg

[beachcomber13]

I wanted Tysabri as my first DMD, but my neuro was against it--and he said it can be hard to get it approved by insurance. I ended up doing a clinical trial where I am either on Avonex or an experimental medication, DAC HYP. From the side effects, I am on Avonex.

Anyway, I have monthly visits with the neuro and usually end up in the infusion room for at least part of the visit. Most of the people in there are receiving Tyasabri. They love it! They cannot say enough good things about it. And a gal in my yoga class is on it and loves it.

Good luck, I hope you do well on it.

[saucygrl]

My neuro. suggested it as my first DMD, but my insurance insisted I try something else first.  I was on Copaxone for 2 months and it gave me terrible migraines.  I found a new neuro (since I was very unhappy with the other) and they got Tysabri approved.  I've had two infusions and no side effects.  They had me take a Benadryl and Tylenol before the first and I used Claritin and Tylenol before the second.  I wish I could have been on it since the beginning, but love it now!

Chris

[Cosmobirdy]

I am another Tysabri user - I will get #48 next week.  I started on Rebif first, just like GG.  I was on it for 6 months, but I continued to rapidly decline, and was sick all the time from the Rebif.  I was shocked when my neuro suggested Tysabri, but after much research and reading, and realistically weighing the risk vs benefit for me, we decided to give it a whirl.

I have since found out I'm JC positive, but am continuing with the Tysabri at this point.  The PML risk for me is significantly higher now, since I have also been on Ty for well over 24 months - but at this point we all feel that it continues to be the best option for me.  

Hopefully Tysabri will do great things for you... :-).  Feel free to PM me any time.

Rita

[Guitar_grrrl]

I love my Ty, and it was the second DMD for me, as I developed hives on Rebif after 4 months.  I've been on it a total of 2 years, and I haven't had a major flare since I started taking it. FWIW, I'm JC negative (whew!).

Good luck!

[Lulu54]

Have you asked the doctor what he is thinking? I am on tysabri and my Neuro told me he would have recommended it for me initially if the test for the JC virus had been around.  Yes, it is a stronger DMD, but my thinking is I want to use the big guns and not just the lesser tools.  So far I have had no problems.  The studies show some really positive effects from the tysabri.

The only thing I notice from my infusions is I am a bit more tired for about 48 hours and then that goes away.  The tiredness and the increase in problems with my balance seems to return sometime in the week just before my next infusion is due.

This is a tough decision for you to make and I hope you ask all your questions until you become comfortable with your choice.