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gilenya and cold sores


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Old 10-21-2012, 08:59 AM   #1
msgmca
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Lightbulb gilenya and cold sores

I've been on Gilenya since Feb and I'm experiencing cold sores, one after the other. I have never had a cold sore in my life prior to Gilenya> I'd like to know if anyone else on Gilenya is experiencing this and how they are treating it.

 
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Old 10-21-2012, 10:28 AM   #2
MSJayhawk
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Re: gilenya and cold sores

Welcome.

Herpes viruses are a concern for Gilenya users. Herpes viruses include chicken pox/shingles, cold sores, genital herpes. Your doctor should test you for antibodies to the three herpes viruses. If you take Valtrex you cannot take Gilenya due to adverse interactions. If you stop taking Gilenya, you are still susceptible to the Herpes Viruses for up to 2 months.

I would encourage you to visit with your doctor. I have read that others have also experienced cold sores or shingles.
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Old 10-21-2012, 12:01 PM   #3
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Re: gilenya and cold sores

actually, The info that after you stop taking Gilenya you are suscepitble to cold sores for up to 2 months, is false. Now that you have activated the cold sore (herpes) virus in your body, you will have it forever...and can have outbreaks at any time. Its very common for the first two months that you stop the Gilenya to continue to have outbreaks regularly; however you will more than likely have these for the rest of your life...

Gilenya has warnings about this right on the packaging. This is the reason I choose NOT to start using Gilenya- and the reason that many have stopped.

The virus, which 79% of us have in our bodies, can lay dormant our entire life- using a drug like Gilenya can bring it to life....and once it is alive, nothing will make it go away. Starting an antiviral such as Valtrex, can reduce the chances of outbreaks or even spreading the infection- but if you have kisses a spouse, significant other, even child, while you have an outbreak, chances are you have passed it on to them....but it is true, if you are on Valtrex you must stop the Gilenya. You cant take them together.

This is sad news for many people. Both oral and genital Herpes is a viral infection which has no cure- and unfortaunatly is very contagious- and a life long problem. Taking Valtrex daily can reduce the outbreaks- but also has its own set of problems, and its an expensive drug. One over the counter supplement, L-Lysine, has been known to help heal cold sores more quickly- can be purchased in any vitamin or health food store. You would want to take 1000 mgs of L Lysine dailiy to help heal, or 500 mgs daily to help prevent future outbreaks.

I hope this helps...and its unfortunate, that your doctor didnt talk to you about this risk before you started on Gilenya...its extremely well documented and has been on the patient information guide since it was first released.

Nikki
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Last edited by MSNik; 10-21-2012 at 12:04 PM.

 
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