@Amy_Forrest

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Amy_Forrest

Gilenya?

Hi guys. I have been taking gilenya for 1 year and 4 months now and I'm wondering how people are getting on with it. I'm terrified about PML and it's sending my anxiety through roof with panic attacks and what not. I'm thinking of coming of it as MS won't kill me but PML will and I don't want to take something that could potentially kill me in the end . I know we're all stuck because we have no choice we have to take something but I'm terrified about dying. I read that people only usually last 6 month's. The most is 2 years. If they get it obviously. Anybody else worried or got anything to get myself out this hole x Thanks guys xxxz Amy xxxx

Sherrilyn_Caron

@Sherrilyn_Caron

Hi @amy_forrest. I am on Tecfidera, and PML is a worry for those who take Tecfidera too. But it's been three years that I've been on it, and it's been good for me. Try not to worry. I imagine that when you take Gilenya, it's similar to when you take Tecfidera in that you have to go and get blood tests every 3 months. The purpose of the blood tests is to make sure your lymphocytes and other markers area healthy. When I first started on Tecfidera, my lymphocytes dropped from 2.1 to 0.7, which is getting into a dangerously low level of lymphocytes and puts me at risk for PML. But over time, my lymphocytes have increased, I'm now at 1.1, which is in the normal range. I don't worry about getting PML anymore but I do carefully monitor the blood test results. If the lymphocytes or anything else is in the not-normal zone, I go see my neurologist immediately. The way I look at it, I'd rather accumulate as little disability as possible by taking the drug, than have a whole bunch of relapses (which is what was happening before I started Tecfidera) and get disabled more quickly. Everyone has a different course for MS, but since I started, I haven't had any relapses, and I'm grateful for that. I figure as long as I go for the blood tests and make sure I check the results asap (I'm able to see my own blood tests online 12 hours after I have the test) I'm good to go. Good luck on the Gilenya and try not to worry.

Amy_Forrest

@Amy_Forrest

Thank you hun. I'm in such a mess at the moment. I want to grow old and see my babies grow up and pml scares me because it cant be cured. I shall try to not think about it. I'm just struggling a bit xxx

Sherrilyn_Caron

@Sherrilyn_Caron

@amy_forrest Do you go for regular blood tests to see how Gilenya is affecting your system?

Amy_Forrest

@Amy_Forrest

Yes I go for blood tests every 3 month. I also see my ms nurse every 3 months and supposed to have mri every year. i have to see my neurologist Wednesday so hopefully he can sort me out. Xxx

Sherrilyn_Caron

@Sherrilyn_Caron

That is so great, you're doing all the right things. Try not to worry, your care team won't let your lymphocytes get so low that you get PML. You're going to be fine.

Amy_Forrest

@Amy_Forrest

So does it have to be a certain slowness to activate it?. I'm terrified of it even considering changing treatment or going without just so as i don't get it.... thank you so much for your help xx

Sherrilyn_Caron

@Sherrilyn_Caron

From what I understand, if your lymphocytes are low, you are at risk of developing PML. That would be somewhere in the 0.5 or lower category according to my neurologist. If your lymphocytes are at or near the normal range, you're not going to get PML.

Amy_Forrest

@Amy_Forrest

Ah right I get ya. Hopefully that's true xxx

Sarah_Harrelson

@Sarah_Harrelson

Hello @amy_forrest, I've been on Gilenya for about 5 years now and love it. I've only had a few minor flare-ups and no complications.

Amy_Forrest

@Amy_Forrest

Hi hun... really? It is working for me I just stress about pml. I've seen neurologist this evening and he has said it's working and I'm being kept an eye on and he wants me to go for counsiloring and to go on tablets for depresion and anxiety xxx hopedully things will get bettdr xx