NEW MS PILL GILENYA

[Betsy888]

I WANT TO TRY THIS NEW MED BUT WAS TOLD I NEED TO STOP THE MED I AM ON FOR 3 MONTHS BEFORE I CAN START IT. IS THIS A FACT THAT I HAVE TO STOP IT?

[cosake]

I was just at a workshop on emerging MS therapies last night and the answer that we got to that question was that it was required during the clinical trials to test efficacy. It sounded like it was not necessary unless you were participating in a trial, but I could be incorrect on that.

I'm sure you'll have some other replies to this.

[Cindarelly]

I have no idea, My neuro wants me to start it. She said she had not received any training on it yet and was not ready to start prescribing yet.
I am fine with that as I am not jumping to be the first to get on board.
I have thought of calling the drug company and asking to be sent a lot of info? Seeing if they send info?
So forth etc etc I don't want to get ahead of my neuro or push though.
But some day I will

[Redwings]

Hi Betsy888:
The official prescribing information for Gilenya doesn't specify that any other medication be stopped or for how long. It does specify that "GILENYA has not been administered concomitantly with antineoplastic, immunosuppressive or immune modulating therapies used for treatment of MS. Concomitant use of GILENYA with any of these therapies would be expected to increase the risk of immunosuppression." Also, "Antineoplastic, immunosuppressive or immune modulating therapies are expected to increase the risk of immunosuppression. Use caution when switching patients from long-acting therapies with immune effects such as natalizumab or mitoxantrone."

It's a fact that concomitant exposure to two meds with similar actions could raise your risk of contracting an infection that could kill you. But it's not a fact that you have to stop your med for three months.

Considering the risk of infection due to immunosuppression, it's sensible that this "caution when switching" from any medication in those classes could include a wash-out period. When there are no test data to indicate what that should be, then good medical principles have to be used to determine an appropriate time period. That's likely where the three-month figure came from.

[Scooter24]

Went to Nuero on wed and we discussed this new drug, he does not feel good about prescribing it for a while, I'm on TY and he suggested if I was interested to wait until I take a ty vacation in 2 years and take a look at it then. I agree as I am not comfortable with possible side effects.

[bubbadan]

scooter24, I'm with you, I'm not willing to jump on the band wagon as of yet to try the drug and my Neuro has that same idea to wait a while and see how things are working out.

[Scooter24]

Actually I am more interested in a new med that the makers of ampyra are working on that "may" actually reverse demylation, it is getting ready to go into 1st stage clinical testing, now that one I would be willing to participate in the test program.

[kmallory1]

My neuro said that Tysabri can be detected in the blood 6 months after stopping infusions. I stopped Tysabri a few months ago after testing positive for antibodies to the JC virus.

He's going to "evaluate" the situation with Gilenya at my next appointment. I am anticipating a fairly long washout period.

[shalimar]

I called Novartis to ask them a few questions and told them i am on Ty and the are saying u have to be off it for 6 months b/4 starting their pills.

[BrendaG]

It sounded promisinig until I found out the cost. So unless a person has really good insurance, have the money or have coverage this pill is unaffordable.

[Scooter24]

Brendag- call the mfg and ask for copay assistance, my sis works for the company and she has told me they do have a program, they want the drug sold and if they have to give up on some profit it still benefits them when it is sold. I havefound that almost every drug that I or my wife use that costs over a 100 a month there is some help avail.

[REG53]

Does anyone know how Gilenya compares to Tysabri?

[Dorrien77]

Dorrien77

Have ppms doctor is trying to get me in trial for ppms. It has been a long journey. First told in 2002 that I had ms. Then in 2006 told I didn't have ms. Had MRI on 10/11/2010 told it was probably ppms