Gilenya and low heart rate

[TLC_31]

As a runner, my resting heart rate already was in the 40s, dipping into the 30s every now and then.

I started Gilenya on Halloween. The heart rate didn't go down right away, but after a couple days, and ever since, it's been in the 30s more often than not. A few days ago, I was even clocked as low as 24 while I slept. I'm not having issues with dizziness or light-headedness, but I am fatigued, and in the evenings I'm told I look as if my soul is leaving my body. I'm wondering if the heart rate is going to rise at all. And I'm wondering if my body is going to adapt to the lower rate.

I appreciate any input; if I'm going to abandon Gilenya and go back to Avonex, the sooner the better.

[BigA]

I saw a graph at a talk recently with heart rate and Gilenya. There was a straight line representing normal heart rate and one below it representing someone on Gilenya. Initially, the bottom line dipped and came back within a week, but there were still residual low numbers for a month.

Ask your doctor.

[TLC_31]

Ask my doctor? Thanks, but my neurologist, PCP, clinical trial manager, and girlfriend (an assistant to a cardiologist) are all already in the loop on this. But they have little first-hand experience with Gilenya, unlike people here hopefully would.

Pulse actually seems to be returning closer to normal, but now BP is an issue. I sent the data below to my PCP, who responded with "Those BP are too low. He needs to talk to or be seen by the research staff. Those BP are not OK." My girlfriend monitored me during runs Monday and Wednesday, both at moderate-to-slow pace for me (10- to 11-minute miles, although cold weather also was a factor).

November 14 evening run (3 miles)
before: 110/64 p38
pausing at halfway point: 122/74 p164
immediately after: 150/62 p100
a couple minutes later: 108/76 p80

November 15 evening (orthostatic test, did not run)
lying at rest: 104/62 p46
as I sat up: 96/64 p64
as I stood up: 90/54 p54
after 2 min: 100/72
after 2 more min: 82/58

November 16 evening run (5.2 miles)
before: 110/72 p62
immediately after: 94/36 p102 (NOT A TYPO)
a few minutes later: 104/66 p102
after a 1/3-mile cooldown walk a couple minutes later: 88/60 p104

My skin felt clammy in the cooldown walk. My girlfriend noted that I looked like I was going to pass out immediately after the run, were the substantially low BP was measured.

My girlfriend reported a cessation in breathing twice on Tuesday night. The last four nights I have awakened in the wee hours of the morning, not typical but unclear whether related to breathing, blood pressure, or non-health factors. I’ve had twinges and tightening in the chest at times upon awakening and during runs, along with other times.

[empirerecs]

hi - I'm really surprised your neuro didn't look into it for you. I asked mine about my hair loss and he checked into it but it's not symptom at this time. I called the Gilenya nurse and gave her the info as well, I would check with them reagarding the low heart rate. The nurses might give you additional information based on your situation since they are keeping track of unusual symptoms. My heart rate was low for a little while but bounced back.

my ex mother in law had an extremely low heart rate, as does my boyfriend, the doctors monitored them but never said it was not healthy, neither are extremely athletic but in good shape. I've always been under the impression that athletes maintain a low heart rate because of the aerobic exercise and that it's actually a sign that your heart is healthy. I hope your friend can find out from one of the cardiologists she works with. the only time mine was really low was in the early 90s when I was body-building and doing high impact aerobics 6 times a week - it was down in the 50s, normally in the 70s.

When I started G, I had some initial "woozy" feelings but that was also early on and didn't last.

I hope you find the answer and can continue the meds, it has really worked for me, the MRIs this week were stable and no vision/eye problems at all. When you do find out can you post it? It would be good to know. Thank you! And, really, the best of luck to you. It's really good to hear you are so active, such good news!!!!

[TLC_31]

Well, I'm going to the cardiologist on Wednesday the 23rd, and the neurologist and I decided to suspend the Gilenya at least until then (four or five days total).

In the meantime, minor sniffles Saturday turned into full-blown fever and cough, in my lungs, on Sunday, the worst I've been hit in a few years. Gilenya-weakened immune system? Off to the PCP this afternoon ...

[TLC_31]

Just to follow up … the visit to the PCP brought a diagnosis of pneumonia, and then the cardiologist visit two days later was somewhat inconclusive, partly because my lungs were messed up. But he clearly was concerned by my fatigue and my BP, and he asked me back for a treadmill test and ECG in two weeks.

In the meantime, I pushed a stroller in a 5K on Thanksgiving morning, had a slow time and felt quite lightheaded at the end, although I’d overdressed. I felt much better in a six-mile event on Saturday evening.

At my Monday visit to the neurologist, we decided that Gilenya just wasn’t suitable for me. It is disappointing, especially when I see so many others doing well on it. I’ve had good results with Avonex, however, and I will return to that medicine with shot #397 on December 23.

[TLC_31]

My ecocardiogram and treadmill test Wednesday were very positive. The plumbing of the heart is outstanding, but still some questions about its electrical system. So the cardiologist, not realizing I had already decided to stop Gilenya, appeared comforted when he learned of my decision.

Dreading the needle, it’s so tempting to restart, maybe the effects would have diminished after one more month? We'll never know, and I’ve felt so good in the last week, I have to slap myself to remember just how poorly the drug treated me.

I want to emphasize again that many Gilenya users have not reported intolerable side effects. Now that it appears that there are no long-term adverse effects for me, I’m thankful that at least I gave it a try.

[04blackcobra]

have you talked with your doctors about taking the Gilenya every other day for a while and then increasing to every day?