Tysabri

[Lmh]

Let me start off by saying that I am so thankful for finding ActiveMSers!!
I'm currently on Tysabri but would like to discontinue because of the risks and the new diagnosis of SPMS. I'm as nervous about stopping the treatment because of the rebound.
My Neuro still wants me on something, so is suggesting Copaxone or Tecifedera. I find this confusing since I've read thAt the progressive types of MS don't respond to therapy.
Any commentary is appreciated!

[Cvfactor]

Hi Lmh,

It is true there are no DMD's for progressive ms. I think Mitoxantrone is approved for SPMS or worsening RRMS but this is a chemo drug so you may want to ask your doctor about it..

There was a Copaxone study conducted in the past for PPMS but it was stopped early. However there was a post-hoc analysis that showed men had a lower progression than woman. Here is the article:

http://www.ncbi.nlm.nih.gov/pubmed/19426995

I don't think Tec has been evaluated for SPMS.

Personally I take Copaxone and have started an add-on therapy. I don't know if this will help with SPMS but it may be worthwhile to read about it:

http://activemsers.wssnoc.net/showthread.php?t=1811

Best of luck in whatever you decide.

[Lmh]

Tysabri

Cv factor,

Thanks for the reply. Still on the Tysabri, doctors are so hesitant to take me off, even though I'm clearly progressing. Getting more nervous about PML risks since I finished my 29th dose, even though I was JC virus negative in March.
Wish I had researched more and was not as trusting in what my doctor had to say. I'm afraid to continue taking it, and afraid to stop.
Thanks again.

[myoak]

Perhaps, your doctors believe MS might progress faster w/o Tysabri. Unfortunately, there is only one way to know for sure but if you halt Tysabri and suffer permanent damage from MS progression there is no way to undo it. Truly, you face a difficult decision when the outcome is so unpredictable.

PML is caused by the JC virus; if you don’t have JC virus you don’t have much PML risk. Of course, people do convert from JCV- to JCV+ at a small rate each year as they age. That is a normal expected occurrence, as you might suppose, from getting older thus having more opportunities for exposure.

Tysabri is a tough horse to dismount and ways to do so safely are studied and debated. In a nutshell, the shorter the washout period, the better chance of MS not rebounding because the next MS DMT has a better chance to become effective before Tysabri gets so diluted with time that it no longer affords protection from MS.

One approach which is gaining traction to reduce PML risk on Tysabri is extending time between doses. This may not be an option for someone with especially active MS; individual circumstances vary greatly. But for those participating in dose extension the results have been good. No cases of PML reported in over 1,000 patient-years, so far. For some statisticians, statistical significance has been achieved and those believe extending time between doses has indeed reduced PML risk. Perhaps, it may be an option to explore in the future if you stay on Tysabri.

Lastly, no matter what phase of MS is currently diagnosed, if your neuro believes inflammation may still occasionally cause problems for you it is understandable that he would continue a DMT, thinking you may benefit and there isn’t much outside a DMT that he would prescribe, anyway. Some chance at effectiveness is better than no chance may be his thinking. And, evidently, he believes Tysabri has the best chance of benefitting you. Statistically, he is probably right; individually, it is a best guess situation. I hate making best guess decisions but often that is what we all do, doctor or patient.

I hope you achieve a level of comfort about a DMT or alternate therapy. I hope the very best for you.

[throwaway123]

Lmh,

People with SPMS can still have relapses, so it's possible that taking Tysabri (or another DMT) will decrease the likelihood of having more of them. It's not actually known whether Tysabri has an effect on SPMS. Biogen is conducting a clinical trial to evaluate this, but the results haven't been released yet. The only clinical trials in SPMS with a lot of statistical power have been conducted with other drugs.

As myoak says, your current risk of developing PML is very low. So long as you're JC negative, and get tested every year for the virus, your risk of developing PML is around 1/10000. This is similar to your annual risk of dying in a car accident. It's not negligible, but it's not something that you radically alter your life for either.

If you're comfortable with answering -- how long have you had MS for? Were you taking other DMTs before Tysabri?

[Lmh]

Tysabri

Throwaway123,

I was diagnosed with RRMS seven years ago, but now realize my very first symptoms that were sensory in nature happened five years earlier. My first DMT was Beta interferon, which I faithfully injected for several years, before the doctors made the push for Tysabri.
I'll have to see the results of the next JC virus test, and then make my pros and cons list....
In the mean time I am extending the time between doses. Thanks for the post!