Starting Tysabri

[Hawkfeather68]

I've been on about every drug listed here, and had awful stomach reactions. Many times I wasn't sure if a new symptom was a DMT or me progressing.

Ive gone without for a year now and had a few relapses. Eyesight leg issues, balance, feet neuropathy worsening, fatigue BAD, and vertigo half of every day.

Im not complaining at all! I have a fabulous life. JC negative, and starting Ty soon. Praying the tests are accurate!!! I read too much I suppose.

Looking for hope I guess, if you have had a positive reaction to Ty or anything I can be educated about in regards to this drug, please share.

Thank you!

[Carolinemf]

Hi hawkfeather,
I have been on Tysabri almost 5 years and JC+. I can't say it's been either really helpful or really horrible.
I can't positively say if it has slowed progression or not or if i would be worse or not if i hadn't been on it. I hope i'm better than i would have been.
Over all though I cope quit well with the infusions. I just feel achey and tired and a bit flu-y for about a day from just after they start the drip. But i've spoken to others who think it's the best thing since sliced bread and feel better at infusion time and after.

Hope this helps and by the way I love your signature and agree with it totally!!
Can i steal it?LOL

[ru4cats]

I've been on Ty since 2010 and have infusion #88 in two weeks. I was diagnosed at 58 1/2, so improvement in my disability really wasn't in the cards. However, I've been very pleased with my decision, as I've had no new disabilities, and one that was developing never materialized, and I attribute that to Ty. I'm still JC- after at least 12 tests (I've lost count! ).

My infusions are just another day for me. I have no reaction whatsoever: nothing, nada ziltch. I've recently begun the process of extending my dosing schedule to 5 weeks, then 6 and maybe even 7. I just went on Medicare, and the need for DMD's at my age is unknown, so I figured "Why not?".

Infusions seem to have the strongest efficacy for MS, so you're headed in the right direction. Depending on your age, there is the possibility you'll see improvement.

Good luck!

[pennstater]

Hard to believe, but almost 6 years on Tysabri. I had been on Avonex to start, then Rebif prior to Tysabri. It definitely halted my relapses. I had some progression, mostly fatigue and cognitive, but these were issues I had before and go hand in hand for me. I stopped working almost 4 years ago, which helped tremendously with symptoms that worsen with fatigue.

With Tysabri, it's really important to stay hydrated. It's easier for the nurse to find a vein, plus, helps prevent a headache for me. When I started on Ty, I would work 1/2 day. After about 6 infusions, I would be too sleepy afterwards, so took the whole day. Now, still sleepy the next morning, but after that, OK to go. Likewise, when I started taking it, I would get tired a few days before next infusion, now it is a full week. My body knows it is time! If I have to miss one or it is delayed a few weeks, I really feel it.

I have had the infusions at 2 locations. The first was a hospital, where they also did blood infusions and chemo. So each patient had their own room. My current neuro has infusion center, so all in one room. The first had more privacy, the second, really get to know other patients.

Take a healthy snack, some water, something to look thru or listen to.

Let us know how you make out. Good luck. I am glad to be on it, Ty has helped.

[Kimba22]

I've been on Tysabri now 4 1/2 years (after being on every DMT available at time - except Novantrone - before that,, plus another drug used to treat MS "off label", chemo drug Cytoxan). Had some very bad reactions to Rebif and Gilenya, and got pretty sick a few times after my Cytoxan treatment, Have never any problems at all with Tysabri. Still JCV negative, but do have additional risk factor of being treated with an immunosuppressant chemo drug in my history. If ever turn positive, neuro has already told me will be taken off it because will have all 3 risk factors for PML.

Won't know for certain if because of Ty or my disease course, but do think it helped stabilize me for awhile. Infusion center I go to has cable TV, and provides snacks and drinks. But every place is different, the one I go to is associated with a major hospital in my area. My husband is with me (driver), plus I bring my tablet and cell phone, so always someone.to talk to or do while.there. Sometimes will strike up a conversation with another patient.. Have also gone long enough to same infusion center staff all knows me, so sometimes (on less busy days) they'll spend some additional time just.talking with us. Infusion itself given over course of one hour (or longer for some who do better with slower infusion rate), and kept another hour afterward for observation.

Being well hydrated before you arrive will also help your veins be easier to access for the IV. One poke is more than enough if you can do anything to help with that.

Please keep us updated and wishing you best of luck with Tysabri!

[Hawkfeather68]

Thank you!

Thank you all so much for your honest feedback. Kimba, yes, you can steal my signature lol it's TRUTH! Horses have saved my butt until now.
Too dizzy to ride, but if that's my biggest problem I know I'm blessed.

It sounds like everyone has such different experiences, it's like a crap shoot along with everything else with MS.
We decided (hubby and I) to go for it as long as I stay JC - I'm either too exhausted or dizzy to do much and neuro stated this could stop all that. I know I sound so spoiled, but riding and showing horses has been a huge part of me, 70 degrees and i'm laying on the couch imagining a ride. Brat!

Blessings all, I'll keep my chin up if you do!

❤Katie




QUOTE=Hawkfeather68;1500845]I've been on about every drug listed here, and had awful stomach reactions. Many times I wasn't sure if a new symptom was a DMT or me progressing.

Ive gone without for a year now and had a few relapses. Eyesight leg issues, balance, feet neuropathy worsening, fatigue BAD, and vertigo half of every day.

Im not complaining at all! I have a fabulous life. JC negative, and starting Ty soon. Praying the tests are accurate!!! I read too much I suppose.

Looking for hope I guess, if you have had a positive reaction to Ty or anything I can be educated about in regards to this drug, please share.

Thank you![/QUOTE]

[Carolinemf]

Yep .. Doing things you love helps you push through and get up and have a go.

I rode when I was growing up but hadn't really had anything to do with horses for about 30 yrs.
I only rode mustering etc on a property but my husband rode in shows and did dressage etc until he discovered fast bikes and cars and planes and girls.And i have been trying for years to persuade him to get a couple horses again but he just wasn't movable.

In Sep last year one of my sons girlfreinds came with me on a road trip and we managed to find two lovely natured horses that i could afford in a week.
I have gotten quite weak in the last 3 or 4 years and i wasn't even sure I'd be able to stay on so i was concern that i may have wasted time and money.

I need help of course and as yet I'm still not confident enough to ride alone but we ride for about 1 1/2 to 2 hrs every couple of weeks when we visit our farm and it is getting slightly easier each time. Have even started reducing the pain meds and heat packs in the 24 hrs after.

Even brushing them gives my arms a work out and even though i'm exhausted by the time i'm finished it's so lovely to have these big gentle animals enjoy my pampering.
I may not be able to have a conversation without getting words and things muddled but my big babies don't mind and welcome my arrival with a whinny every time.(carrots help)
And after all the years of me trying to persuade my husband he loves his big 17 1/2 hand high chestnut gelding.

So thats why i loved your signature.

I've read a couple of posts in which people have mentioned riding for the disabled and if anyone has the opportunity to do this I highly recommend it.
Caroline.

[Hawkfeather68]

Tysabri update

Well, going for month five's infusion tomorrow. I got a mild headache after the first one. I seem to be less fatigued but really overdid it got super dehydrated and then hit a wall. Overall my experience has been great. Cognition I feel is improving, less fatigue, less dizziness, waking up easier. Neuropathy is not better. Best advice was to stay hydrated!!! Still not able to ride, but soooo happy to hear Carolyn is riding. That made me grin!!! Hopeful for more improvement and no JC virus so I can keep going with the Ty, so far I love this drug.Blessings to all!!Katie

Yep .. Doing things you love helps you push through and get up and have a go.I rode when I was growing up but hadn't really had anything to do with horses for about 30 yrs.I only rode mustering etc on a property but my husband rode in shows and did dressage etc until he discovered fast bikes and cars and planes and girls.And i have been trying for years to persuade him to get a couple horses again but he just wasn't movable. In Sep last year one of my sons girlfreinds came with me on a road trip and we managed to find two lovely natured horses that i could afford in a week.I have gotten quite weak in the last 3 or 4 years and i wasn't even sure I'd be able to stay on so i was concern that i may have wasted time and money.I need help of course and as yet I'm still not confident enough to ride alone but we ride for about 1 1/2 to 2 hrs every couple of weeks when we visit our farm and it is getting slightly easier each time. Have even started reducing the pain meds and heat packs in the 24 hrs after.Even brushing them gives my arms a work out and even though i'm exhausted by the time i'm finished it's so lovely to have these big gentle animals enjoy my pampering.I may not be able to have a conversation without getting words and things muddled but my big babies don't mind and welcome my arrival with a whinny every time.(carrots help)And after all the years of me trying to persuade my husband he loves his big 17 1/2 hand high chestnut gelding.So thats why i loved your signature.I've read a couple of posts in which people have mentioned riding for the disabled and if anyone has the opportunity to do this I highly recommend it.Caroline.

[lindaincolorado]

In Sept I will have completed my 11th year on Tysabri YAY!

After 5 or 6 infusions I noticed better stamina/endurance, halting of progression, MRIs showing no new or active lesions and old one's smaller or gone QOL better, doing what I want, when I want: not missing out on life-I am now 68 years old! Ty did not help my R leg - I so wanted to really dance again, I still get out there-just not like I used to.

About 2-3 years ago my jcv test went to approx .26 indeterminate. I went to having infusions every 8 weeks as a study was done showing NO ONE after 2 years on Ty, getting infused every 8 weeks has gotten pml !! For approx 9 months now my jcv test has been below .2 NEG AMAZING I go to the RMmsC and think they would tell me in statistics change re pml.

I'm glad to hear you are seeing improvement. I hope it keeps getting better and holds !!!

Best wishes