Finally approved, now too stressed and scared to start

[chipmunk5150]

So, I've been battling with insurance companies trying to get approval to begin G since October, when I d/c Copaxone. I have been on nothing since then, and have had some minor problems.

This week has been a complete and total nightmare. Probably the most stressful of my life. Yesterday my doc's office left me a voice mail letting me know that approval had finally come. Now I don't know what to do.

I had practically given up the chance to start G, and pretty much accepted that I was going to be on nothing and just see how things went. This week has left me completely drained and unable to sleep. New reports of delayed arrhythmia/side effects in G users have me scared.

I don't want to do this. Don't want to do anything. I'm so tired and nervous that I just want to close my eyes and not deal with anything anymore. But, I know that is unreasonable....so, I sit here trying to force myself to make the call to set up my first dose monitoring.

Maybe I'll just wait till next week. Maybe I'll feel better then.

[slowdog]

You sound the same way I felt about Gilenya that they will need to monitor me for 6 hours what hang out in the docs office for 6 hrs why is my heart going to stop believe me I was scared but mainly I did not want to be monitored for 6 hrs not a big deal and I am fine with it and after 6months now I feel a lot better still have fatigue but what else is new I have MS good luck

[michiganmsbiker]

Congrats on getting the approval. My wife has been on Gilenya for about 18 months now and is doing pretty good. The 6 hour monitoring thing is very scary. Ours went fairly well though. As long as you've had good check ups from all the specialists they send you to prior, you should be ok for the initial dose. The heart rate drop is pretty freaky though. It took about a week of being on it before hers actually stayed at a normal rate after taking it. Now it's like taking any other med for her. I hope you can get some peace of mind. Best wishes. Nick

[cosake]

Sounds like what I went through. Took from October until a few weeks ago to get everything approved and setup.

Passed all of my pre-screens with flying colors.

Started G last Tuesday - no drop in heart rate, everything perfectly normal. (I am 40 yrs. old)

This past Saturday night I started getting some heart palpitations so went to hospital. Ran EKG, blood, Xray and heart monitoring and everything OK. A little scary, but I've had no problems since them. I suspect an interaction with caffeine - I only have it about twice a week and that was the only time I've had it since I have been on Gilenya. I'm now about 10 days into G.

So far, I have had no other side effects and it is quick and easy to take.

I can understand your hesitation, but the "scary" stories out there will always be more prevalent than the stories of those who have had success and no problems. Nobody talks about the "good" stories, so it makes the "scary" ones seem even more scary than they actually are.

Be sure that you have had all of your pre-screenings and that you have been up-front with your doctor about all other meds you take and conditions you have that might interact.

Good luck with your decision.

[Music lover]

starting Gilenya

I just started Gilenya yesterday. I was in the office for the six hours of monitoring and I was stable the entire time. My first BP and pulse were the same every two hours down to the very last. I'm always dizzy so that isn't really a factor. I know it's only been two days, but I'm feeling pretty confident about things. The nurse hasn't had complaints that I've been reading about here. I'm waiting for it to really kick in and perhaps undo some MS effects. I saw the lady on the news a month back and it works wonders for her.

I was on Rebif for several years and am looking forward to not "shooting" myself 3x/wk. No more red marks for me.

I also had a battle with insurance. The fact that mine is through the state (WI) didn't really help either. A lot of back and forth and calling Gilenya and talking with my own personal agent (?) helped a lot. She was great in dealing with these things. I also was approved for assistance through their program - GilenyaGo. I have $0 copay. I have a set dollar amount for a year's worth of medication. Can't ask for better than that.

Give it another try. All you need on your first day is a phone with a charged battery, a laptop, a good book, anything to get rid of the boredom. Bring a lunch. It's just sitting around and waiting for them to take you back for another check on the BP. Simple.

Good luck!

So, I've been battling with insurance companies trying to get approval to begin G since October, when I d/c Copaxone. I have been on nothing since then, and have had some minor problems.

This week has been a complete and total nightmare. Probably the most stressful of my life. Yesterday my doc's office left me a voice mail letting me know that approval had finally come. Now I don't know what to do.

I had practically given up the chance to start G, and pretty much accepted that I was going to be on nothing and just see how things went. This week has left me completely drained and unable to sleep. New reports of delayed arrhythmia/side effects in G users have me scared.

I don't want to do this. Don't want to do anything. I'm so tired and nervous that I just want to close my eyes and not deal with anything anymore. But, I know that is unreasonable....so, I sit here trying to force myself to make the call to set up my first dose monitoring.

Maybe I'll just wait till next week. Maybe I'll feel better then.

[Janet1318]

Starting Gilenya

I have been on Gilenya since 2008. At my initial dose my heart rate dropped immediately and I became weak and tired but I was in the trial study and it is possible that I was initially given the higher dose (this dose was not fda approved). It took about a week or so before I felt "normal". I did have some issues with taking the med in the am so we switched it within the first few days to taking the pill at night which has worked out much better. There are side effects but when comparing to our other choices they aren't so bad. Just make sure to keep up with your follow up appointments and log any changes you notice. It is important to have your bloodwork done, ekg,eye exam, and I would recommend having your lung function evaluated before taking the meds. In regards to one persons post about caffeine, I drink more than my far share of soda and it hasn't had an effect. On a very positive note, my wheelchair has been collecting dust since July 2010

[Moosette]

I am so sorry that things have been so stressful chipmunk....you are definitely not alone with feeling this way though...new drugs are always a little unnerving to go on, especially with possible Gilenya related deaths in the news lately.

It took forever for me to finally decide to go on Gilenya, and I, like you decided to go on nothing for a little while before trying it. I actually felt pretty good (I didn't realize until after going off of Betaseron just how much it had affected me negatively) I only decided to go ahead and go on Gilenya after yet another MRI came back with new and enhancing lesions.

The 6 hr. monitoring went fine, my heart rate dropped to about 55 bpm and stayed in the high 50's-mid 60's for about a week after. I usually average about 80 bpm so it was a drop but nothing to get too concerned about.

I have now been on Gilenya for almost a year and am feeling really good now that I take my pill at night before bed. Obviously everyone is unique and what works for one person may not work for another but it is very encouraging to read how many people are having huge success with Gilenya.

Best of luck to you and will hope that whatever route you go with all of this that it works out incredibly for you!



**Post broken into paragraphs by Moderator for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print.**

[Music lover]

results after 4 days

Hi,

As posted previously, I had normal results at the doctor's office for my first dose.

This afternoon I rather suddenly realized that I hadn't been fighting all day to keep my eyes open. Everyday I would practically have to hold them open when I shouldn't have even been tired. This is great! I am waiting to see anymore great results come from this new pill. Not missing those shots at all!

[chipmunk5150]

Thanks, all

I appreciate all your comments. I have scheduled my first dose and observation for March 6th. I'm still nervous, and chose to wait because i am smack in the middle of a 3 week sh*t storm.

Thanks again for all your support. I'll update you on how it goes.

[Music lover]

update

I have been on Gilenya almost a full month now. I feel great. Along with not fighting tired eyes, I don't ache so much anymore. I noticed this a couple days later. It just suddenly feels different.

I'm thinking this is going to be a good deal. I'm glad I was able to get into this. NO MORE SHOTS!!!! So glad.

[rgngsmom]

Wow. Sooo many of these posts sound so familiar! I was approved for G. in the fall, but went into panic mode and didn't follow through. After further discussions with my neuro doc, I was approved again, and I had my first dose today. My heart rate is usually around 80, and I dropped to 53. My blood pressure dropped a little, but never anywhere scary.

How did your first dose go Chipmunk? I hope it went as well for you - or better even - than mine did for me! :-)

[chipmunk5150]

Finally got started

I had to delay my original start date due to illness. So, Monday (3/12) was G-Day.

Day 1 was pretty uneventful. My heart rate did drop, but only once below 60bpm. It maintained around 65 through most of the trial.

This week has progressively been worse with fatigue. My heart rate seems to be staying in the mid-60's to low-70's, but I can just barely keep my eyes open, making work very interesting.

Other than the fatigue, which is not a symptom that has affected me this badly before Gilenya, I seem to be doing ok. No nausea or other symptoms....just completely exhausted. A part of me wishes I had taken the entire week off, another says "what's the point", it will most likely be the same next week.

"Push through". That is what I am always told. About everything MS related. Numbness? Loss of limb control? Optic Neuritis? Heat Sensitivity? Now....Fatigue? Just push through.

Does anybody else find this somewhat annoying and easier said than done? Gonna go try to talk the boss into letting me off early.....again.

[Okieto]

Just passed one year mark on Gilenya!

I've been on Gilenya for one year as of March 9! Have not experienced any of the side effects and all of the routine tests-blood work, ophthalmologist, etc., have come back at acceptable levels. The only thing we have changed is the time of day that I take it; changed from morning to before bed as it was possible it was giving me daytime sleepiness.

My first dose last year went fine-heart rate did drop some, but it stabilized and I was able to go home. And it was nice to just sit and not have to think about anything for 6 hours.

Have been on DMDs since 1998 first taking Copaxone, then switching to Rebif to go from injecting every day to 3x/weekas I was being non-compliant on the Copaxone. Developed neutralizing antibodies to the Rebif after a year and 1/2 (had a relapse) so went back on Copaxone. Stayed on that another 4 years ago until another relapse and thankfully Gilenya had been approved so I could start the process to take it.

The injections weren't terrible but it IS nice to be able to travel and not have to worry about taking my meds through security. I'm glad I made the decision to start taking Gilenya!!

[Cardee]

I took my first pill last Wednesday. Though I was worried before and the first hours (in hospital to get my heart checked) I did not feel anything. No side effects either.

I am still tired but my neuro said it may take a couple of months to go away (or not). I just have to be patient, I guess. I am quite relieved to take Gylenia so well!
I hope it will be the same for many others.
Take care

[cosake]

I have been on Gilenya for 6 weeks now. The first week I did get fatigued, which is not a regular symptom for me. After the first week it has not returned. I have had no other side effects except an episode of heart palpitations. Waiting to hear on a 24-hr. heart monitoring that I had done, but everything else looks good.

I take my dose in the evening just before bed so that I don't forget to take it. I don't have a regular morning routine so it is easier that way.