Anyone go off Ty then back on?

[jiljb]

Hi all - fairly new to MS World but not to MS! Just wondering if anyone has been on Ty and gone off, then gotten back on and if you regained what was lost during your time off?? I went off of Ty for 6 months (due to being JC +) and tried Tec (hated it). During the 6 months I progressively got worse and am now using a cane. I went back on Ty (last week was my first infusion) when they retested me for JC and found out my number was low. I'm just wondering if I have any reason to be hopeful that I will significantly improve. I was diagnosed in '97, no treatment until '06, Copaxone for 2 1/2 yrs., Ty for almost 5 yrs. Thanks!!

[anney3]

Hi, our son's neuro is suggesting that he go off the tysabri and try aubagio. We don't understand why as he has not had a flare-up in 2 years. He is testing negative for the JCV virus and the tysabri is helping him. Could you help us.

[jiljb]

anney3,

I don't know why your neuro would suggest that your son go off of Ty if he is JC- and has been doing so well. It is the most effective treatment out there. Perhaps it is because he has been on it for 2 years? Still, if he is JC- it means his risk factor is minimal. He could become JC+ at some point (which is why they test regularly) but in the meanwhile, I don't understand why they would switch his medication. Can you get a second opinion?

[disabled dreamer]

I hope this thread stays updated and gets responses!

I thought it seemed that once folks stopped Ty they did not respond as well or had issues with it if they started it again, but now that seems to not be the case?

I am on Tec now but Ty was very good for me until I lost insurance to pay for it. I did not consider going back to it but now am looking for more data on this, always good to have more options.

[jiljb]

disabled dreamer,

Thanks for your reply. I am hoping to maybe hear from others (surely there are some) who have gone back to Ty. I will keep you posted as to my experience going back on it.

[GardeningMSer]

I did

Hi all - fairly new to MS World but not to MS! Just wondering if anyone has been on Ty and gone off, then gotten back on and if you regained what was lost during your time off?? I went off of Ty for 6 months (due to being JC +) and tried Tec (hated it). During the 6 months I progressively got worse and am now using a cane. I went back on Ty (last week was my first infusion) when they retested me for JC and found out my number was low. I'm just wondering if I have any reason to be hopeful that I will significantly improve. I was diagnosed in '97, no treatment until '06, Copaxone for 2 1/2 yrs., Ty for almost 5 yrs. Thanks!!

I was on Ty for about 4 years and it worked very well for me. About 18 months ago my neuro told me to get a JC test and it showed positive. About 12 months ago she told me to stop Ty and move to Gilenya, starting it in Jan 2013. Gilenya was not as effective as Tysabri, the latter's good effects were very noticeable, on G I lost a bit.

A few months back my neuro had me tested for JC antibody levels, we learned they were low and after a lot of paperwork had my first infusion early this month.

My "generous benefactor" as my ex's attorney called my now SO sees a huge improvement within a few days; I think she's right.

The tradeoff - more mobility for a small chance of PML - seems worthwhile to me, now retired on disability with grown children and two really fine grandkids, it is a decision I'm quite comfortable with.

I'll add that I use a scooter for distances greater than 50' or so, forearm canes once called Canadian crutches (much better than regular canes) and a Walkaide for my most noticeable symptom, foot drop.

Life, despite MS, is good.

G
very happy in San Rafael, CA

[jiljb]

GardeningMSer,

Thanks for the response - I was starting to think that no one else had gone back on TY. I agree with what you said about the small risk of PML being worth it to hold off progression. I also have grandchildren and even a couple of older children still at home, as well. Jil

[msinvincibles]

Ty to Tec response

Sorry I'm kind of late in the game to respond to your post but it sounded so familiar to my situation.

I was happily on Ty for 3.5 years. Felt great the entire time I was on it and improvements to speech, cognitive and felt solid and balanced.
Then one sad day after testing positive for JCV my Neuro informed me that he would no longer risk the PML possibility for me.
I stopped Ty Nov 2012. I was waiting for Tec to be approved to start it as an alternative to Ty. I thought it would be well timed with the 3 month TY detox to start Tec
Well I ended up waiting for 6 months before it was finally released.
I was fortunate not to progress at all during the no DMD stage but I had less energy, wasn't my usual happy self and I didn't feel as solid.

I started Tec and then after one month I took the new JCV blood test and like you, I tested in a very low percentile for JCV. This result came after I had been on Tec for 3 months.

When my Neuro told me the result he didn't really didn't suggest the option to go back on TY. Are you back on TY again? With Tec luckily didn't have the bad gastritis digestive side effects some people have, Why didn't you like Tec? How long were you on it?

I keep telling myself to just give Tec a fair shot. Move on kind of feeling. but I can't forget how great Ty was for me.

If you are back on Ty, are you receiving positive outcomes for what you lost waiting for Tec?

[jiljb]

Ty to Tec to Ty

Msinvincibles, Glad to hear that Tec is not giving you unmanageable side effects. In response to your questions, I didn't like Tec because I constantly felt bloated and/or nauseous. I felt like I had to eat all the time in order to not feel nauseous. And I did try the several suggestions for dealing with the side effects that were posted on this site, including by my dr.'s suggestion going off for over a week and then restarting more slowly. I was on it for 8 weeks. I also found my balance and walking to be worsening during this time, though to be fair that could have been more from being off of Ty for several months.

My doctor has always left the choice of which medication to be on up to me. Even when I didn't know what my JC number was, he would have let me stay on it if I had wanted.

I have been back on Ty for just a little under 3 weeks so I can't honestly assess yet whether I am improving or not. I've never experience such a "slide" in my disease course, so to be honest, I'd be happy even if I don't get any worse! I have noticed the boost in energy which seems to be a happy side effect of Ty. I will be seeing my neuro on Thursday and I'm guessing will be having an MRI soon, too.

Will try to keep this thread up to date for others who may be considering going back to Ty!

[msinvincibles]

jiljb
Yes so now I need to confront my neuro on this. Part of me wants to settle back in to Tysabri since I tested so low with the new JCV blood test.

As I said I have been on Tec since June and I can't say it's not working but I guess I just felt better on Tysabri. I don't know what to believe. I think I believe whatever I tell myself.

I did have a new MRI brain scan 3 weeks ago and everything looked good, no new activity. I was off a DMD med for 6 months waiting for Tec to release so it's great i WAS ON NOTHING and no new activity.

I took an MRI on my neck and spine last week so if that looks good to I might ask to go back on Tysabri. I didn't mind the monthly infusions and I take so many vitamins & supplements per day that taking another 2 pills (Tec oral) added to my daily pill arsenal doesn't seem like a huge benefit compared with the monthly infusion for Tysabri..

So I'll wait for the other MRI tests before I seriously consider going back on Tysabri.

I like the decision your Neuro made about starting you back on Ty with an every other month dose. How long will that go on?

I'll be in touch...

[golfore]

I was on TY for 5+ years. I started to have what seemed like a bad flare up. My neuro suspected/feared I might be getting PML. Within the next 4 months, I was in a wheel chair before I finally got the correct diagnosis of a cervical spinal cord injury.

I had cervical fusion, some of my troubles improved. I now can walk with a cane. I still get physical therapy twice a week and swim or go to the gym on the other days.

I got back on TY after no drugs for 6 months. So, its kind of hard to give a good perspective on the topic. I still have serious effects due to the spinal cord injury.

[jiljb]

msinvincibles - I am actually on a regular schedule (every 4-5 weeks) for Ty. I believe another member (who had a high JC number) was doing Ty every other month.

golfore - Thanks for responding and so sorry about your injury. Hope you will do well back on Ty!

[msinvincibles]

I did get the results from my neck & spine MRI. Neuro said it looked great no progression and no activity for my current lesion gallery. I visualized a lesion graveyard...lucky me.

No DMD for 6 months and now tested in a low percentage risk category for PML with my JCV+ diagnosis.

Decision time...Do I go off Tec after 5 months and back on Ty? Or do I stay put and let Tec have a go at it?

I believe what happened (at least what I'm telling myself) is that Tysabri did a great job for 3.5 yrs. I think it put a hault to any further progression and for that I am so thankful.

The truth is a Tec 2/daily pill is easier (as long as I listen to my IPhone reminder sound).

Aside from the low percentage risk of PML, going back on Tysabri is both expensive and taxing on my already compromised body. The truth is, Tysabri was so effective for me because it's a much more powerful MS drug. How long could my body withstand it? I wonder what the longest amount of time an MS patient has been taking Tysabri?

I guess it doesn't matter now because Tec is my new MS med of choice. If I really believe that then I need to forget about Tysabri. Maybe morn it like a death of someone who was very important to me at one point.

[jiljb]

Some improvement!

So I said I would try to update this post occasionally for anyone interested in what can happen when going off Ty and then back on. I have only received one infusion (my second one is tomorrow) and I thought I would be waiting longer to comment on how

[jiljb]

Sorry about that last post (somehow I submitted it before I was finished). Anyways, I commenting on how I am doing after going back on Ty after being off for 6 months. Even though it has only been 1 infusion, I am already noticing some improvement in my walking. I am by no means "cane free" but I have been leaving it aside quite a bit as I move around my house! I also have noticed improvement in my focus and energy. The first 2 weeks after my infusion I didn't notice any difference in how I felt. Around 3-4 weeks after I started to notice some increased leg strength and mobility. Maybe it is all psychological but in any case that's how I feel right now - Yay!! I'll keep posting and let you know if the improvement continues or at least I hold steady for a while.