Maybe the holiday is over...?
 

I had my 36th and last Ty infusion in October 2009. My neuro and I agreed to stop Ty because the 'adverse effect' information released by Biogen had ceased. We could no longer make an informed, educated decision to stay on Ty. I had done very, very well on Ty, to the point that most days I almost forgot I had MS!

I started Copaxone at the end of December. I had no complaints or issues with the daily injection. Thank God for the auto-injector!

I had my 6 month follow up MRI last Monday. The neuro called me on Thursday to say he needed to see me "sooner rather than later". Seems as though my MRI is lit up like a Christmas tree again- new lesions, many enhancing, a lot of disease activity. My MRI was very active in the first 2 years after my 2005 diagnosis.

So, he wants to talk about going back on Tysabri.

I'm a little freaked out about the whole thing. I was so hoping that the Copaxone would keep my disease activity in check.

Do I risk PML and feel oh so better? Does the # of infusions count start over because I have been off of Ty for 6+ months? Do I refuse Ty and continue down the slippery slope of progression?

Any advice or suggestions are appreciated.

I meet with the neuro today at 1 o'clock. Please wish me luck and send good vibes my way.

Be well,
__________________

I'm sorry I didn't get here in time to answer this because I had this discussion with my neuro last week when we talked about the assay and what he would do for those who test positive. My doc said he envisioned people going on and off Tysabri as needed, that your system clears it naturally and that his patients are back to normal immune status within 90 days at most, so theoretically, you could go back on after drug holiday with good results. He said that he hasn't seen any one of his patients who chose a drug holiday have antibodies when they returned to Tysabri but that it could be a concern for some.

Is your doc involved in the assay testing?

If you are looking for personal opinions, if it was me and I had been off for 6 months and saw the same results, I'd be back on Tysabri in a heartbeat. I'd also consider doing infusions on a longer time frame, maybe every six or eight weeks as opposed to every four weeks. I am not hung up on time anymore, since I know that the every four week schedule is just what they tested, and that a longer time frame may work well for some of us.

Let us know what happened will you? I'm pulling for you!:hug:

Oh the many reason I hate this stupid disease. So I was on antibiotics for a UTI (ps, caused by the TY I am told) when I went in for my infusion last week. The infusion seems to have washed out the Avelox from my system. UTI is still there and the sinus infection I thought I had that started the day after the infusion...nope, it's strep throat. I don't know if that wsa from the infusion or from being in the hospital all day for the infusion. I was there for 5 hours. This doth sucketh!

I'll have #33 tomorrow. I've spent the last few weeks trying not to think about PML. My neuro told me she will be involved in the assay testing but she doesn't know when it will begin. She said that as soon as she knows anything her office staff will begin calling those of us who want to be tested. I can't imagine being on Ty and not wanting to be tested. But, until I have the test and hear my results I'm "sticking" with Ty...please forgive the pun :) If my results are positive I'll cry!!!!!!!!!!!!!!!!!! I love what Ty has done for my QOL. My life will never be the same as it was prior to my last exacerbation 6 years ago but Ty has made a huge difference.

For me...at this time..ignorance is bliss. Until I'm told that PML is a possibility or I have an adverse reaction I'm going for my infusion every 4 weeks and I'm trying not to worry. I wish every 6 weeks had worked for me but it didn't.

My youngest grandchild called this morning. Her 4th b'day was a few days ago. She wanted to know when we would be coming to California so she can have her b'day party :) I told her I'm going for my "special medicine" tomorrow and that her grandfather and I would be there in a few days. The children understand how important this medication is for me. They've seen the difference....I can now walk, run with them, go up and down stairs and play with them for hours at a time :) They love my "special medicine".

I decided to check on PML updates this morning and except for that 1 site all of the other information states there have been 49 cases of PML. Since my DH hasn't said anything about new PML cases I'm going with 49 cases. He doesn't believe that ignorance is bliss...LOL

I hope everyone is doing well and that we all test negative.

Hi Krohe,

How did the meeting with your neuro go?????? Have you decided on what you will do next????? This is a very personal decision. I can only tell you that if it were me I would get an infusion of Ty immediately. But, for me quality of life is so much more important than quantity. I'm 63 years old and once I was finally diagnosed we were able to trace my m.s. back to when I was in college.

I'm sending lots of good vibes your way, keeping my fingers crossed for you and sending you lots of hugs!!!!!!!!!!!!!!!

{{{{{{{{{{Krohe}}}}}}}}}}

Hi, newbie here, been on Tysabri 18 months, diagnosed 06. Just now I'm on steroids for first time since starting Ty, two days now, and I swear if anything I'm worse. I'm having trouble finding clear info about differentiating between MS relapse and PML; is it really almost impossible to tell for weeks? Difference seems to be only if you've got optic neuritis or it's fast onset, then definitely MS? An MRI a week ago showed active lesion in brain stem and I'd been having symptoms for a few weeks, steadily increasing all this time. Anyone have any similar experiences or knowledge could help me out? I'd so appreciate that.
But prior, I'd improved dramatically and rapidly after starting Ty--especially cognitively, an area which I'd been hit hard in (my neuro sez about a quarter of MS-ers are hit hard that way, as I am).

Hi WordWarriorMama and welcome to NeuroTalk!
We're sorry that you have a reason to be here but happy to meet you!
I'm also sorry to hear that you are in a relapse. It has to suck after being relapse free for so long.

Now down to business. I'm not a doctor. The only thing I can tell you is to talk to your neuro at length. Ask why he/she thinks you are in relapse and that it is not PML. While most neurologists look at the MRI report, a lot of them do not look at the actual MRI. I would hope that your neuro would have done this since you are a patient on Tysabri. Ask if the radiologist who read the MRI has experience in PML lesions and their presentation on MRI as opposed to MS lesions.

Perhaps you could give the radiologist a call and talk to them directly just to reassure yourself. I did this with the chief radiologist at my medical center and he gave me a crash course in the difference between MS lesions and PML lesions and their presentation, and it made me feel a whole lot more secure in that he knew what he was looking for and more importantly, WHY that was important when it comes to Tysabri patients. There is usually a difference between the two types of lesions and a radiologist can explain the difference. At one time, the medical community thought that all PML lesions were non-enhancing but that has proven to be false and it's important for a radiologist to know what they are looking for.

You don't say when your last infusion was. Did you skip the last infusion or have it? Were you feeling as if this was started before your last infusion? Did you talk to your neuro as soon as you noticed a change? Has your neuro talked to you about the JCV assay that is coming out?

I know I asked a lot of questions and that it's not easy to answer some of them when you are relapsing, sorry for that.:cool:

It's not unusual to feel worse before you feel better when in relapse and doing steroids. I know for me, the steroids always make me feel worse and it always took me a long time to see improvement even after doing the steroids. I haven't had a relapse since I started Tysabri but I know that there is always a chance that I will have a relapse since Tysabri is designed to reduce the number of relapses, not stop them entirely. I've almost forgotten what it's like to have a relapse, but not entirely. :(
You are correct in that a lot of us get hit cognitively, for me it was the cognitive stuff that irked me the most of all my symptoms and I don't want to go through that again!

I hope that you come through this ok and that you go on to have better days. Please let us know how it goes for you. We're all in this together, learning the process even after several years in many of our cases, so come back and let us know! We're pulling for you! :hug:

Hi Shayna (and all that have replied),

We (DH & I) met with the neuro on Monday and I am going back on Ty.

They promise us (and I believe them) that they will keep an ever vigilant eye on me and any "new or worsening symptoms" ;)

Their office is enrolled in he assay testing, so I will also be getting that as soon as possible.

In the meantime I continue to stab myself with Copaxone, which, according to the neuro, is better than nothing. I'll only need a 2 week break in between C and Ty.

I need to start the enrollment process all over again, so I am imaging it will be a month or so before I can have my first (37th?) infusion. According to the neuro the clock doesn't start over at "1", but is definitely less than 37.

He said that those of us that went on Ty shortly after its re-release are all trailblazers. He honestly admitted to not having all of the answers. (which I respect. That's better than giving me an answer that turns out to be false only to save his ego)

I asked about lengthening the time between infusions to 6 or 8 weeks and he was not in favor. Mostly because my MRI is so active and my symptoms are back with a vengeance. Maybe when I schedule I'll just tack a few extra days on, and go 30-35 days instead of 28.

I guess I'm just looking forward to (hopefully) feeling better before the summer is over. I have a lot of stuff going on in my life right now (selling our house, buying/building another, SSDI appeal process, etc.) that I will need all of the energy I can get.

Thanks for everyone's well wishes. I will keep you posted.

Be well,

Wishing you my best, Karen :hug:
I'm pretty sure if it were me I would start at every 28 days for a few months-when I first heard of Ty (almost 4 years ago) I read for best efficacy 28 days was the way to go. For almost a year now I go every 33-35 days-which means I get 2-3 less infusions a year.

Linda

I am sooo glad you came back to let us know what happened!
I agree with Linda, if I went on the holiday (doesn't that sound weird when talking about drugs?) I'd be back on the 28 day schedule.

When I said I wasn't hung up on time I should have qualified that statement, in that I have agreed to give the decision to my doctor as far as a drug holiday goes, because he IS the doctor. I wouldn't have been happy about it but I'd have done it. I so don't like it that I agreed very quietly once and never mentioned it again in hopes that he has forgotten!

Here's hoping that everything gets back to your "normal with Tysabri" normal!

I am surprised that you have to re-enroll. It was my understanding that once enrolled, you were always in, and that you had to restart but not go through the whole paper shuffle again. Maybe it was because you went over a certain amount of time...

(why can we never ever get a straight answer from Biogen????)