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ive been on gilenya 6 years

A MyMSTeam Member asked a question 💭
Azle, TX

anyone else my age (late 50's) have their doc say they wanna take you off Gilenya at age 60?? she said the "risk vs. benefits" swings the other way as your get older. i was dx oct 2001 10 years on avonex, a couple of years on copaxone, 2 months on tecfidera (didnt go well) and now Gilenya. my last exacerbation was 18 years ago (feb 2002)

thanks

February 18, 2020 (edited)
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A MyMSTeam Member

I think Tecfidera is suppose to lower your lymphocytes to but mine have been around 0.6 for over 6 months & my neurologist is worried about the PML risk when they are that low. That is why she decided to take me off it till they go up to 1.0 then start Aubagio.

February 19, 2020
MyMSTeam

Gilenya (Fingolimod) is a medication approved by the FDA for treating relapsing forms of multiple sclerosis (MS) in adults. Here are some key points about Gilenya based on the knowledge base:

- Purpose: Gilenya is not a cure for MS but can decrease the number of flare-ups and help delay or prevent disability
- Mechanism: Show Full Answer

Gilenya (Fingolimod) is a medication approved by the FDA for treating relapsing forms of multiple sclerosis (MS) in adults. Here are some key points about Gilenya based on the knowledge base:

- Purpose: Gilenya is not a cure for MS but can decrease the number of flare-ups and help delay or prevent disability.
- Mechanism: It works by suppressing the immune system, trapping lymphocytes (white blood cells) in the lymph nodes, preventing them from attacking the nervous system.
- Administration: Taken orally once a day, with or without food.
- Initial Monitoring: The first dose is taken in a medical facility with heart monitoring for at least six hours.
- Side Effects: Serious side effects include slow heart rate, infections, and eye problems like macular edema. Common side effects include headache, flu-like symptoms, diarrhea, back pain, cough, and abnormal liver test results.
- Precautions: Not suitable for people with certain heart problems, pregnant women, or nursing mothers.

Always follow your doctor's instructions and report any unusual symptoms.

July 26, 2024
A MyMSTeam Member

@A MyMSTeam Member its my understanding that with many of these DMT your lymphocytes are SUPPOSED to be low. gilenya keeps them in your lymph nodes so they dont circulate and breach the blood/brain barrier.

@A MyMSTeam Member my MRI have been stable since 2006. the doc said the risk vs. benfits changes as you get older.....

February 19, 2020
A MyMSTeam Member

Yes, I am 61 and have been off any DMT for 5 years or so. My MRI's had been stable at at that time for over 5 years. I am considering going on Mayzent though due to gray matter atrophy.

February 19, 2020
A MyMSTeam Member

I am 55 my doctor told me if I am stable in 5 years when I am 60 she will take me off my DMT. I am currently coming off of Tecfidera due to low lymphocytes waiting for them to go up & then start Aubagio. Why did you come off Tecfidera

February 19, 2020 (edited)

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