Have any of you been off tysabri for awhile and gone back?

[floatingurboat]

A little explanation.. I was on for about 6 months and really felt crappy after my infusions, like fatigue aches pains that kind of thing. The thing is when this was going on I was also going through serious problems with depression, which I've since been receiving treatment for. After my depression (for the most part) lifted I was left feeling better and like I would may stand a better chance with tysabri. I gave up on it after the 6th infusion over a year ago.

I've been on copaxone since but had to stop shortly after starting (75th injection)because I was getting the immediate post injection reactions. Having seen how bad medication reactions can be with that (it was terrifying) I've been contemplating talking to my neuro about whether or not I can get the jcv test and possibly go back on ty. The side effects really weren't that bad, comparatively speaking, and I'd like to give it another shot.

Sooo after all that I suppose my question would be has anyone gone off ty and been able to go back on it? Any feedback is appreciated!

~Elly

[dck696]

I have taken what my former doctor referred to as a "holiday" from Ty. I am JCV+ and after 24 infusions he took me off for four months, then put me back on. I noticed nothing different, but that is to say that, other then chilling, I have never had side effects from Ty.

I am now off Ty after 2-1/2 years becuase of my JCV+ status, and fixing to go back to Rebif or Betaseron.

[sherill]

I've been off of Tysabri twice...

I started Tysabri about 4 years ago and have been off of it twice now. In my 3rd year on it, the tysabri people recommended a year break for people who had been on it for at least 2 years due to some more problems with PML... So my neuro took me off of it and I "flew without a net" for that year. I didn't have any problems without it and my MRI showed nothing new at the end of that year. Incidentally, they now have a blood test that can tell if you're carrying the PML bug (or whatever it is).

So, I'm on my 2nd "vacation" now since January due to the loss of our insurance when my husband was laid off (after 25 years). We picked up BCBS through my teaching job and they have a 6 month waiting period before they will cover anything related to the ms. I had extreme problems with both physical and mental fatigue - I left school early several times because of it. I think I'm pseudo-flaring right now - none of my sx are new, but I've had them for about a week now. I don't think that those problems are related to the not being on Tysabri right now.... My school year had more drama in it than I could ever even imagined - very high stress levels! I think those issues are due to that stress - just when I thought an issue was settled, something else happened.... But, the stress has significantly subsided now - school's out.

I need to call my neuro and get back on it, but we're not even close to meeting our deductible and an MRI where my neuro sends me is about $600. Oh - my salary is also being cut from full-time to 3 hours a day in the fall. Hopefully my husband will have found work by then! But, that's a whole other post on another board somewhere....

I don't know if I helped or not - I would say if your neuro approves it, take the break. (Mine approved this 2nd break)

sherill

[floatingurboat]

Thanks for the quick responses guys!

I should probably mention that when I went off tysabri I kind of did a disappearing act, I just stopped going to my infusions with no warning to them. I informed my next neuro about it and he was wanting to try to get me back on it but I'm just not sure if they'd be too keen on me coming back after I dropped off the face of the earth. I don't feel good about it, but I was highly depressed and just wanted to roll over and die basically, I was very close to suicidal.

Now that my depression has lifted somewhat I am looking back and don't think I necessarily gave the ty a fair shot. I'm planning on asking to try it again anyways, worst that can happen is they say no, was just wondering if anyone here had been through anything similar?

~Elly