Last reply 5 months ago
Gilenya: the more l read the scarier it

This medication can weaken your immune system/increase the risk of infection while you are taking it and for 2 months after your last dose. You may be more likely to get a serious (possibly fatal) infection (such as bronchitis, pneumonia, herpes). Tell your doctor right away if you develop any signs of an infection such as persistent cough/sore throat, difficulty breathing, fever/chills, cold/flu symptoms, sores, or blisters. Do not start fingolimod if you already have an infection.
Fingolimod may increase the risk of skin cancer and lymphoma. Tell your doctor right away if you notice any new or changing skin growths/moles, or swollen lymph nodes.

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5 months ago

@nutshell Mate as a fellow fingolimod taker I just want to say perhaps you need to look more at the statistics rather than the general warnings. The risk of all the things you mention needs to be balanced with the the impact of relapses on the brain and spine. Infection is treatable usually and if you’re are aware you might be a little more likely to get it you are more like to get it treated early. Same for skin cancer it is one of the most common cancers 40%of all cancers but most treatable 0.1% of cancer deaths. Once you have permanent disability through letting MS play havoc with your myelin there isn’t a treatment.

Take it easy 😎

5 months ago

@zulfihan , you do need to keep these things in context. Life itself is not without risk and that’s before you bring MS and Gilenya into the equation.

At least on Gilenya, you’ll be closely monitored.

5 months ago

Dont scare me im under its knife lol
Been refusing all sorts of treatments for 14 years
But i began taking it last month
Yesterday and the day before i felt awful
But today i felt great and went to work

But constant heart discomfort and its terror to feel this way

5 months ago

In full agreement with @strictlysoca.

Been and still am a Gilenya User last 2+ years. Haven’t had a side effect worth mentioning. Importantly, it has kept me relapse fee since when I started till date. I’m able to lead a near normal life. Of course there’re certain elements that seem to not function as well as it used to pre-MS days. Those issues were before I got on to Gilenya. Every medication has to list *every* possible side effect however small the probability maybe to protect themselves … Does not mean every user will get those.

5 months ago

my skin has always been clear and i know And im unlike most of the women i feel irretitated of creams ect
I dont have pimples
Noticed a new ⚫️ On my knee ._.

I guess I better stop using my philips laser treatment also it burns even if its not painful

5 months ago

@zulfihan – as others have said: you must keep the data sheet (from which you are quoting) in context. Ask: what is the frequency of ‘X’, are there any predisposing factors to experiencing ‘X’ and so on. The data sheet will list more common and less common effects. 1/10, /100, 1/1000 etc.

Have you asked the medics that deal with this on a day to day basis? Ask them to explain the incidences of side effects and allow them to put them in context for you.

If you read an ibuprofen data-sheet you’d steer away from it on that basis alone!


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