Last reply 6 months ago
Dear Shift MS Members,

I hope everyone is doing well, cooking and shopping for Christmas…
Here is my request. I have done MRI brain and there is no new lesion everything seems as they were, however l am having symptoms constantly in the last two weeks so Dr. decided to change my DMT from Avonex to Gilenya which is the only available drug here other than Tysabri, but he left the decision to me, he wants me to change due to atrophy in the brain.

The problem is the more I read about this drug the more dangerous it gets. MS society website does not mention about BBC (skin cancer) Press (brain veins gets narrower and will ended up having hearth attack and brain damaged) eye infection and PML (this one mentioned). There are many other side effects like neusia, dizziness, tiredness… on a daily basis. Is it not tooo much to risk…

Now it is very difficult to make my mind after reading these and there is no one in the family-I am unique..! to ask?
What would you do .. change or no change…..? How much is too much to take the risk?

Thank you everyone .. Muchh appriciated
Special thank you goes to Stambbler

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6 months ago

Was on Anonex for 23 years (since it first came out, first DMT, in original trial) so that and the name has given my age away. Was changed to Tecfidera at the start of this year, was given a choice and chose the one that best suited my lifestyle and no needles after 23 years of weekly dagger drawing! Don’t have any experience of Gilenya, but there are plenty on this site who do. Go to mahifying glass in top left hand corner and all will be revealed. They have to tell you anything that COULD happen. If you read the back of aspirins properly you would never take one again, you have to weigh the balance. Good luck😍

6 months ago

@zulfihan , all the risks are known, so you will be closely monitored. 😉

6 months ago

Hello @zulfihan, all DMDs carry risks, that’s why we need to be fully appraised of the facts before we take them. But on balance, I’d say the benefits (potentially) outweigh the risks; that’s why I went for one myself (Tecfidera) I hope you find peace with whichever route you choose. There are plenty of us who have taken the leap!

6 months ago

Thanks vixen.. to be perfectly honest i am dead scared because i do not have the courage, and the energy to fight against another disease, can not even imagine it. I could hardly cope with this one. So I do not know

Thank you

6 months ago


Hi there,

Yes there are risks with many things.

I decided early 2011 to go on to Tysabri. Been on it since and it’s done me proud.

Gilenya was mentioned to me but in my case meant being on an infusion for +5 hours every 6 months.

I said no thanks.

No idea where I are but here I am closely monitored and it’s been very good to me all these years.

Good luck with whatever decision u decide to make.

6 months ago

Hello there I’ve been diagnosed 5 years now currently I am on gilenya so far it’s doing pretty good I was on rebif for two and a half years… I just simply got tired of giving myself shots 3 days a week and the next day you feel like you have the flu but the gilenya for me comes in a pill one time a day my only fear just making sure I remember that I did take it that day because you can’t take two in one day you do have to be monitored your first dose because it does drop your heart rate and blood pressure other than that I do not experience lots of side flare-ups are difficult and you can experience them because you’re under a lot of stress in your life but basically I think it’s trial and error find what works best for you if gilenya did not work for me at all I would jump to the next option I passed on the infusions because it takes too much time and I have 4 small children I don’t have a lot of 1 year now using gilenya I’ve not had any issues myself but good luck in whatever you choose remember nobody’s the same find what works best for you good luck and God bless

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