I was so excited when an oral medication became available! I took the tests to determine if I was a good candidate for Gilenya. The only medication I was taking regulated my occasional runaway heart which I have had since I was young. Nothing showed up on the EKG to cause any concern so my appointment was scheduled.
From the start of the observation period I felt very comfortable. Cushy lounge chair, TV, a bag of goodies and relax for 6 hours. After several blood pressure checks, one of the techs said my heart rate was a little slow, but no problem. The next time they checked my heart rate slowed a little more. I was still ok but they decided to check with my neurologist. Well I was getting a little bored so I decided to do some stretches. When the tech returned my heart rate had increased so they gave me the Gilenya. I never told the tech about exercising. I didn't think anything about it!
I was released to return home and felt great. I continued to take the Gilenya and was cleared to take the increased dosage. For several months I was fine and then I noticed I was tiring a little more than I normally did. My follow-up with my Neurologist went well. MS and fatigue are normal. As the months went by I noticed that I tired easily and was so weak when I went outside that I would sometimes have to lay down without warning. I continued to exercise at the gym and sometimes stepped off the treadmill before stopping I took belly dancing classes! Crazy I don't think enough oxygen was going to my brain but never put together how I was feeling with side affects of medication.
My husband was worried. We started to monitor my heart rate which was very erratic and my blood pressure was too high. I was referred to a cardiologist. Test results showed nothing.
I started having problems with my eyes. When I read sometimes part of the word blacked out then it would clear. I was diagnosed with macular edema. Apparently this is a more unusual but serious side affect and my Neurologist took me off Gilenya. I stopped taking the heart medication after consulting with doctors about my erratic heart rate. It took me about eight weeks for my heart rate to return to normal and the macular edema to resolve itself.
Not long ago I read on another website where someone with
MS recommended exercising to increase your heart rate during the Gileya observation period. I DON'T RECOMMEND DOING THIS!
From the start of the observation period I felt very comfortable. Cushy lounge chair, TV, a bag of goodies and relax for 6 hours. After several blood pressure checks, one of the techs said my heart rate was a little slow, but no problem. The next time they checked my heart rate slowed a little more. I was still ok but they decided to check with my neurologist. Well I was getting a little bored so I decided to do some stretches. When the tech returned my heart rate had increased so they gave me the Gilenya. I never told the tech about exercising. I didn't think anything about it!
I was released to return home and felt great. I continued to take the Gilenya and was cleared to take the increased dosage. For several months I was fine and then I noticed I was tiring a little more than I normally did. My follow-up with my Neurologist went well. MS and fatigue are normal. As the months went by I noticed that I tired easily and was so weak when I went outside that I would sometimes have to lay down without warning. I continued to exercise at the gym and sometimes stepped off the treadmill before stopping I took belly dancing classes! Crazy I don't think enough oxygen was going to my brain but never put together how I was feeling with side affects of medication.
My husband was worried. We started to monitor my heart rate which was very erratic and my blood pressure was too high. I was referred to a cardiologist. Test results showed nothing.
I started having problems with my eyes. When I read sometimes part of the word blacked out then it would clear. I was diagnosed with macular edema. Apparently this is a more unusual but serious side affect and my Neurologist took me off Gilenya. I stopped taking the heart medication after consulting with doctors about my erratic heart rate. It took me about eight weeks for my heart rate to return to normal and the macular edema to resolve itself.
Not long ago I read on another website where someone with
MS recommended exercising to increase your heart rate during the Gileya observation period. I DON'T RECOMMEND DOING THIS!
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