Thinking about TYSABRI

[Bis22]

Hello,
I am new to this site. I joined because I wanted to find out information about Tysabri. I was diagnosed with MS in 2003 and I was put on AVONEX, and i had a bad experience; depression,headaches and I didnt notice any improvements. I stayed on for 3years, went off for 1 year and started copaxone recently but its been very difficult for me to take it every day. I get big bumps. I've had a better experience on it than Avonex but i dont want to continue with it
I wanted to find out about Tysabri, from people who are on it. What kind of side effects do you have to deal with and what improvements have you noticed?
A.D.

[Stacer]

I feel fortunate that I experience no side effects from my infusion. I used to get very sleepy the day of the infusion, but that seems to have gone away. I had #21 today.

Unfortunately, I haven't seen any improvements while on it. My MRI is stable. The symptoms I had pre-tysabri are still with me. I wish you all the best.

[REG53]

I have just taken #44 and I feel tired and sleeply after infusion and I feel fine the next day.

I have not had any relapses and mri's have not changed.

I have not seen any improvements of my sx's I had prior to TY.

[shalimar]

Been on Tysabri 32 months with no side effects, except stiffness at the beginning. Am coming off though because my doctor is worried about his long term patients getting PML and will be starting Gilenya

[Bis22]

thanks for your replies

Thank you guys for your honest replies. I thought that being on Tysabri will improve a lot of the symptoms. The one that bothers me most now is the fatigue. I do like the fact that the MRI is pretty stable but I am also freaked out by the pml. I guess Ill just keep searching

[lindaincolorado]

Hi A.D., I have had 49 infusions, been on Tysabri 4 years. I have not had side effects.
After appox 6 infusions my balance got better, I have more stamina and less fatigue. I have retained these improvements

My MRIs show no new or enhancing lesions and some of the old ones got better or even went away.

I am very thankful to Tysabri. Now that I've been on it so long and the odds of pml seem to increase drastically after 3 years I do think about pml when I really never did before.

[Bis22]

Thank you Linda, seems like you are having a very good experience with Tysabri. I like that you dont have to deal with fatigue :P
Wish you the best in your treatment

[palmtree]

YES TYSABRI

Wish I could have started it as soon as I was diagnosed. I had 3 lesions in May 2010 when I was diagnosed. Then my symptoms were very minimal. I started Avonex and ended up with an exacerbation with three new giant lesions in August. Since then, I've been barely functional.

My dr put me on a rush Tysabri. Had 3 infusions and 2 MRIs. No more lesions.

I knew about Tysabri and wanted to start it as soon as I was diagnosed. They won't let us use it unless the CRABS don't work. I think we should have a choice.

To answer your question, I can't say it has has improved my function but no new lesions is a miracle. My neuro says it takes about 6 months to see improvements. I always go home and sleep the rest of the day after the infusion. It may be making me tired but I think it's just getting up early and spending 4 hours at the hospital that tires me out, not the Tysabri.

I was scared, too, about PML. But now I see the risk as minimal compared to the consequences of more lesions. I wish you the best in your choice.

[D_HOLLAND]

My son has had 38 infusions of Tysabri and I thank God everyday.

My son had a very agressive form of MS and had 3 massive flares in a row while he was on Avonex. He has over 50 lesions in his brain and too many to count in his spine.

Since being on Tysabri he no longer needs his walker or wheelchair (unless it is a long walk) He has had no new leisons or flares while being on Tysabri.

We all need to remember that none of the medications are for improvement, they are for slowing down this MonSter and Tysabri has for sure done that for my son.

[floatingurboat]

I can say you CAN go on tysabri as a first choice. I was DX in may with several lesions on my spine and "too many to count" in my brain. My neuro pretty much told me her goal was to make sure I can still walk in 10 years, and she strongly suggested trying tysabri first. I do experience stiffness in my joints for a few days after the infusion, but my MS symptoms haven't gotten any worse and for that I'm extremely grateful. Good luck in your decision.

~Elly

[Bis22]

thank you for your replies. I am seriously considering talking to my doctor about switching to tysabri. I made my appointment for next week and i am going to try to have my mri done this week. Please pray it all goes well. Thank you!