I am in a medication predicament (would have placed this in medications but not many

[22cyclist]

responses. I tested JCV + with a titer of 3.5, the upwards they tested was up to 1.5. My neurologist wants to take me off, but understand me wanting to stay on. I have been on Copazone-had 4 evacerbations in 1 year, so was taken off of that and told no more interferons, no pills at the time so I went to Tysabri. My JCV was negative for over 28 infusions and at number 39 they decided to test me. I was very disappointed.

I have been offered Lemtrada and Mitoxantrone as chemo for my MS.
The Lemtrada problem is that it is so young in testing that they haven't had any cases of PML pop up like in Tecfidera. Mitoxantrone has been used for a while, can only be used for three years due to its risk of congestive heart failure.

I am saddened by our new choices. All they have to offer is another path to PML? And they are not really as affective either. Another pill she mentioned by name has a black box warning too for PML now. Can't remember its name.

I am about to just say keep your fancy medications I will go it on my own.

I JUST WANT TO FEEL BETTER!!!!!!!!!!!!!! If Chemo can give me that in terms of my MS, trade off feel crappy from chemo, then OK, maybe that.

What do you guys think??

[Thinkimjob]

I don't know. My physical state is that bad I'd kind of take take cyanide, BUT no, there's Lemstrada. I'll give that a stab, in May.

I think life was easier when we truly trusted in God and an afterlife.

[Thinkimjob]

These drugs are more like playing Russian roulette (okay only one bullet in the gun, five blanks) than choices. I'll be Lemtradaing in May.
The alternatives are what is happening to me now, which is not good, at all, or a strange, supposedly dignified demise in a Nordic chalet.

[palmtree]

Lisa,

You've been through so much. To have to face going off Tysabri is another giant hurdle. I wonder if they would let you stay on Tysabri until you can get a Lemtrada infusion arranged.

The Tysabri washout doesn't sound like a good idea to me if it means dramatic MS progression from the rebound effect.

[KatieAgain]

Lisa-I could tell you a lot, but it would all be 3rd hand information.

But I will say this an Oncologist knows more about Rituxan, Lemtrada and Mitroxantrone than any of us combined on this board or your Neuro. They are also the PML Experts. I am exceptionally lucky to have a Cancer Center administer my Tysabri, be cause I get to see the Oncologist every month and we talk about all this stuff.

It would be worth your time and money to consult with an Oncologist at the University to discuss all these options. Well worth it. And with the facts, you can then make an informed decision.

[tspaulding]

[QUOTE=Thinkimjob;1473490]I don't know. My physical state is that bad I'd kind of take take cyanide, BUT no, there's Lemstrada. I'll give that a stab, in May.

I think life was easier when we truly trusted in God and an afterlife.[/QUOT


I read that Tecfidera has a warning about PML. I do not know about the other pills for ms, was told no known cases.

I wish u luck, TS dx 1995 RRMS

[pennstater]

Lisa,

I can't add much, but wanted to wish you luck. My titer is fine, but keep getting sick on Tysabri. Last Two times, wound up with flares after sickness. Have appt in April with neuro and will be discussing. If I change, will let you know meds and discussion .

Good luck.

[22cyclist]

Thank you all for your thoughtful responses. I have a second opinion set up at Duke for next week. Just to see what they think. An oncologist is a great idea though. I will check into that.

Take care everybody.
Lisa

[poppydarling]

Ugh -- I'm sorry. It sucks! I'm on Gilenya right now and think it has put me into another major flare like when I went off Tysabri *but while I'm still on the drug.* I feel like I'd like to take my chances now, as I actually feel much better in many ways not dumping this poison down my throat. But they get you with the fear of what may happen.

I was on Rituxan and felt very good on it. Too bad it didn't do much for my flare ups. I wish you well, and some peace about these decisions. They are not easy.

[Kimba22]

Hi Lisa,

You've already been through so much lately and I'm really sorry you have to make this choice. It's scary no matter how you look at it. I hope your visit at Duke helps you make a more informed decision, along with an appointment with an oncologist.

Does your MS Specialist have a plan to hopefully minimize your chances of the rebound effect if you stopped Tysabri? Like steroids? ( there's that risk of PML again ) I guess if that happens, it's around the 4 months mark. The last thing you need is another flare. I did read some stuff saying Lemtrada helped prevent the rebound effect. But, I totally understand what you are saying about that drug ...

A past MS Specialist considered putting me on Mitoxantrone (even had the LVEF test done, which was well into the normal range). But then he decided against it because of the cardiac effects (plus the fact I already had a pacemaker) and the lifetime limit (because this is a progressive, lifelong disease). There have also been cases of bone marrow failure from the drug. I know you have both a pacemaker and have had bone marrow failure. So, getting another opinion or two about this drug with your history is a really good idea.

If I were ever to convert to JCV+ ( regardless of the titer), my MS Specialist told me he's taking me off Tysabri. End of discussion. A treatment he had me on in the past (before my pacemaker was replaced with a MRI compatible one) was Cytoxan, which gives me another risk factor for PML. He's also not a fan of Mitoxantrone because of the cardiac risks.

The JCV blood test wasn't available yet when I went on Cytoxan, and I was just too scared to go on Tysabri without being able to have MRIs (instead, my MS Specialist would have checked my spinal fluid for any evidence of JCV antibodies at least twice a year ...and would've followed it with a brain biopsy if it came back positive).

I could be sick as a dog for several days afterward my Cytoxan treatment, and twice, was hardly sick at all. There was no real explanation for that, because the dosage never changed. I won't kid you, getting sick wasn't fun, but it did help me remain stable during the 6 months I was on it. I think I would've been game for more treatments had it kept me stable for awhile after it was stopped. (Unfortunately, that didn't hold true for me, so my MS Specialist said he wouldn't prescribe it again ...

You are in a tough spot, and I feel so bad for you. Best of luck with your decision.