some questions - for those taking Tysabri

[Bananas777]

I just started taking Tysabri - my next one will be my 3rd infusion. So far, so good.

For those of you that are also on Tysabri;
1. How many injections have you had?

2. Have you noticed any improvements?

3. Have you noticed any symptoms worsen?
I'd really appreciate anyone's input.
Thanks,
Bananas

[ru4cats]

1. 40 infusions as of July 26.
2. Improvements? No, but my MRI's are stable, and I've had no relapses. I LOVE my 28th day "vacation" where I read a good book!
3. My one and only symptom is right leg weakness due to nerve damage in the hip flexors. Unfortunately, that continues to progress, slowly. However, I consider myself fortunate, considering how much so many other MSer's suffer.

Hope this helps.

[Remy9111]

Been on Tysabri for 5 years. Never had a relapse (knock on wood!!!!!)

At the 1.5 year mark I started going to every other month because of repeat infections. Every 8 weeks seems to work fine.

Love the drug too be wise side effects are so minimal.

[Special Kay]

1. I have had 9 infusions.

2. and 3. I feel so much better, but mainly that's from being off Avonex, which I took for 5 years and felt worse and worse on. No change, really, in my MS symptoms, which are minimal anyway. No exacerbations and MRIs remain stable, which is the same as when I was on Avonex.

[lindaincolorado]

I have had 83 infusions
No new or active lesions and some of the old are smaller or gone !! Some sx are better (after approx 5 infusions) - my QOL has vastly improved My energy/stamina is such that I do a lot including exercising 5 times a week.

Progression halted !!!!!


My R leg did not improve-foot drop therefore, walking not better wanted to walk for miles and dance like I used to-Oh well, thanks to Tysabri my life is good
I hope you do, at least, as well as I ..

[Surichar]

I am like you. Very new to Tysabri and go for my third infusion next Wednesday. My husband has noted (and I agreed) that I already have a lot more energy. Although I haven't had issues with the extreme fatigue that I have read about, by about 8:00 pm, I was passing out in my chair. I can now stay awake until 11:00 pm with no problem. I think my husband was hoping for one of those miracle stories that you read about online, where a person claims to go back to pre-MS conditions. I have cautioned him that the goal is not to get worse and maybe see some improvements. I have a feeling that my right leg/ankle/hip is too far gone to ever get back to where it was. I would be happy if I could just walk a block or two without feeling like I am going to collapse . . . We will see what happens in the next few months.

[Ceci]

I have had 83 infusions
No new or active lesions and some of the old are smaller or gone !! Some sx are better (after approx 5 infusions) - my QOL has vastly improved My energy/stamina is such that I do a lot including exercising 5 times a week.

I'm going on my 4th year and have experienced basically the same. Primarily that some of my lesions are smaller or gone. My neuro was ecstatic. My balance improved to the point that I don't have to use my cane on the bad days.

It's proven to be very effective for me.

[palmtree]

This is the end of my third year on Tysabri. I can't say enough good things about it. I've had no new lesions. The side effects are almost non existent. I wish there was some drug that reversed MS but stopping the progression is a godsend.

The only side effect I have had is a need to sleep extra after the infusion. There have been some new symptoms, but they came when my TY shipment was two weeks late. My walking isn't as good now as it was. My normal schedule is every four weeks so two weeks made a difference.

It prevents the disease from crossing the blood brain barrier. I want to keep it that way. The JC virus has prevented many people from continuing it. I think that is sad because the chance of progressing is 100% without it.

I hope you have as good of an experience as I have had.

[cali1892]

1. I will do 33 next week.

2. I have not noticed any improvements

3. I have not had any new lesions. But, I have had new symptoms and my old ones still come and go. Fatigue still is a major problem. And walking has slowed a bit.

I have transitioned to JC+. But I have no plans to stop Ty. I have no side affects from Ty. I am happy with it.

Good Luck

[Bananas777]

Thanks for everyones' replies. It's really supportive to hear how others in my position are doing

[palmtree]

Another one:

37 infusions

Started Ty while I was in a flare so I will never know what was the flare or the Tyasbri.

My symptoms improved the first six months except for increased fatigue. But I will never know if it was because I was off steroids or not. Have not had any new lesions since I started. Amazing drug! Have not had any worsening of symptoms.

[22cyclist]

1. 14 infusions

2. No progression on MRI

3. The only thing I notice is I am tired the day of the infusion and need to sleep afterward.

4. I have new symptoms, but no new lesions.

5. I am still JCV- and I love Ty!

Good luck
Lisa
Moderation Team

[Kimba22]

1. 11 infusions

2. no improvements, but I've been more stable than I was.

3. 1 new lesion, but might be because I had to be off all DMDs for several months. Biggest concern of my MS dr. is developing "black holes" and haven't. Some increased weakness.

4. side effects: 2 upper respiratory infections, which I haven't had for many years & hair loss (lucky me, it's very uncommon with Ty).

Best of luck to you!

[saywhat]

1. I will have #14 this afternoon

2. I noticed improvement almost immediately! Unfortunately at about 6 months my body started regulating it I guess and things started to come back and stick around again.

3. As the Tysabri wears off about 2-3 weeks after the infusion, my typical symptoms start to come back and by the time I'm scheduled for my next infusion I am pretty much dragging again.

[ADavid]

14 infusions of TY. 1 small new lesion since I started, but no functional decrease. However, I itch like hell, that only began after starting Tysabri. I've read about 5% of patients on Ty experience this itching. Tysabri can lead to an increase of eosinophils in the bloodstream, which can cause itching.

http://ms-coalition.org/emergingther...medications/91

Natalizumab (Tysabri) – Posted on July 24, 2012

Information for Healthcare Professionals

The US Food and Drug Administration (FDA) has approved a change to the prescription label for natalizumab (Tysabri) to include new information:

Under Warnings and Precautions (5.6)
During the clinical trials, natalizumab was observed to induce increases in circulating lymphocytes, monocytes, eosinophils, basophils, and nucleated red blood cells. These changes persisted during exposure to natalizumab, but returned to baseline levels usually within 16 weeks after the last dose.