how long do the side effects stay?

[amandarianne28]

I'm new to Gilenya (1 1/2 months into it) and I'm looking for help from anyone who has been on it for longer than 3 months.

Some background on me is; I was diagnosed Primary Progressive MS 8 1/2 years ago the day after I turned 23. As I go to an Indian Health Services Hospital where my medication/appointments are paid for without traditional Insurance and as my Neurologist is a bit nontraditional he has gone to bat for me with the head of the clinic and medicine companies and gotten me approved for DMD's almost on a "If it helps her it can help your company" basis. We tried Betaseron 1b and Copaxone for 5 years with no halting of progression and then I used Tysabri for 2 1/2 years which actually was a miracle drug for me and in that time I didn't develop one lesion or have one major flare requiring steroids. In January I tested JC positive for the first time and was taken off the Tysabri and put on Gilenya as a last chance DMD leading to my current problems.

I have been light sensitive for 8 years since a ON episode but since the Gilenya there are some days I am literally wearing sunglasses indoors and using candles in my bathroom instead of the lights because its too much in a small space. I have a history of Migraines but with the light sensitivity added into the headaches I get after my G dose its unbearable some days and I can't leave my bed. My appetite is none existent and I'm forcing myself to eat/snack. My hands have gone numb and with my diet now effecting my weight my wedding/engagement rings which are soldered together fell off one day and I didn't even feel it or notice until hours later. Thankfully it was at my home and found but I now rarely wear it for fear it will happen again. I'm also fatigued like I've never been before and the Provigil I was prescribed does nothing to help and I'm sleeping around 12 hrs a day which doesn't seem to be enough lately but I have 3 children 12, 10, 8 and a husband who works like 50-60 hours a week with Tuesday off each week so I don't have the luxury of sleeping much on weekends and its affected my moods and tolerance for small problems at home.

I asked my Neurologist how long these side effects will last and he told me I am the first person seen at my hospital on it and he doesn't know but from what the Manufacturer said they should disappear after a month in theory- or 2 weeks ago. I live in Alaska where there is a rather small population of MS and no specialists to see so all I really have for information is this site and the Medicine fact sheets which are not helpful at all. If anyone has any helpful advice or even suggestions I'd very much appreciate it. Right now I'm alone and in the dark and all I know is I cannot keep this up much longer or I will have to go off it and then I will have no DMD's available to me thru my pharmacy/hospital.

[Merridy]

2yrs here

I've been on Gilenya for almost two years now. I made the switch after 9 years on Rebif. I have had next to no side effects other than a little extra hair loss in the beginning. I've just read about eye sensitivity from other on it. I was diagnosed with dry eyes, but I am curious if it might not be meds related.

I can honestly say it was the best thing for me to do as I don't have the emotional dread anymore that I used to get on "needle night". I just had a MRI and there were no new lesions in the past 3 years.

I hope you are feeling better soon. ((Hugs))

[onlyairfare]

I've been on Gilenya for 5 months and after a little bradycardia the first couple weeks, I've had no side effects.

So yes, I'd be concerned maybe something else was going on causing the fatigue and vision problems. Maybe you would want to check with your primary care doc as well as the neuro?

I used to live in western Washington State and I noticed that it was not rare for Alaska residents to travel to Seattle for specialty care that was not available at home in Alaska. I wonder if it would be an option for you to obtain specialty consultation in Seattle? Personally I never found an MS neuro in Seattle that I liked but I recall that there are some posters here who had MS specialists they liked in Seattle.

I hope you feel better soon!

[amandarianne28]

1 month 3 weeks later

The fatigue is still unreal for me and my eyes are still ridiculously light sensitive. My neuro says "Its a new medicine and we are still learning a lot about it so we will keep an eye on it and see what we can find out." This does not make me feel better as in the same message he told me BG12 wasn't approved yet but a quick FDA search shows it was approved March 27, 2013 and I have no training so this lessens my confidence in my care here.

I want to be sent to a specialist but there is no way the hospital will pay for or refer me to anyone outside their payroll if they feel my care is adequate. Unfortunately they do although from my above statement you can see my neuro doesn't really meet the standard of "keeping up to date on treatment options and knowledgeable about MS in general" in patient care. Starting to think there is no hope he will listen to me when I have a valid complaint and in the last 5 years I haven't even had one appointment outside of the yearly exams so Im not irrational or a hypochondriac there all the time with phantom symptoms.

[sarawarden]

amandarianne28 - You need to look for a new doctor. I hate to say it and i know that it may not help becasue of where you are located but you need to be proactive. This website and your doctor should not be your only forms of advise for ms. I have seen a lot of doctors over the years and it is hard to deal with the costs and the constant frustration of the doctor not fitting your needs. but it is your health and if your doctor and his medical staff are not helping you then you should reach out and see if there is someone else that may be able to help you, possibly in a near by or easy to access city. This is just my opinion and you do not have to take it for more then that but if you are having the issues you describe and your doctor is just responding with "looking in to it" then while he is looking you should be too. There is nothing wrong with seeing what options are out there or just calling a doctor and getting a second opinion. The oter option is to call the MS society or possibly the drug company can assist you with finding the support you need.

Hope that everything works out.