Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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deleted_user 01/06/2013

Like many here, I have issues with insomnia associated with prednisone. I searched and saw that many here were using Melatonin, bought some, and didn't think twice about taking it. Then, yesterday, I woke and launched into a day that was among my worst. I had lead legs in addition to feeling unusually depressed (though understandable with lead legs and prednisone). Now, maybe it was the dairy I had in a latte (I usually have soy) or perhaps the PopTart I ate yesterday morning (clearly a "food" I have no business eating) that precipitated the badness, but here is what I found at WebMD;

Melatonin is LIKELY SAFE for most adults when taken by mouth short-term or applied to the skin. It can cause some side effects including headache, short-term feelings of depression, daytime sleepiness, dizziness, stomach cramps, and irritability. Do not drive or use machinery for four to five hours after taking melatonin.
Medications that decrease the immune system (Immunosuppressants) interacts with MELATONIN

Melatonin might increase the immune system. Taking melatonin along with medications that decrease the immune system might decrease the effectiveness of medications that decrease the immune system.
Some medications that decrease the immune system include azathioprine (Imuran), basiliximab (Simulect), cyclosporine (Neoral, Sandimmune), daclizumab (Zenapax), muromonab-CD3 (OKT3, Orthoclone OKT3), mycophenolate (CellCept), tacrolimus (FK506, Prograf), sirolimus (Rapamune), prednisone (Deltasone, Orasone), corticosteroids (glucocorticoids), and others.

Has anyone else experienced problems with melatonin?

bweeds 01/06/2013

As Bruce has said, drugs.com is a good site for looking up drug interactions with herbs and foods as well as other drugs and not a bad idea to check each time you introduce a new medicinal.

I believe Joe said he had some spectacular nightmares with melatonin. b.

deleted_user 01/06/2013

I had heard about its association with strange and lucid dreams. For certain I will read up next time, but I was so desperate for uninterrupted sleep. My son points out to stay away from screens at night so the body can produce the proper amount.

deleted_user 01/07/2013

Dont know why but a few years ago I got bulbar issues with it and something else I did write down in my journal somewhere - and that was when I wasnt taking anything else with it. And those symptoms came back after each dose so I stopped taking it.

Gud Luk on sleep issue it is SOOOOOO important, especially when the body is under stress from disease and medication.

Calmday

Chroux 01/07/2013

I was also desperate for some good sleep a while back, my Neuro prescribed Melatonin, I am glad to say that it worked great, and lucky for me, NO side effects.
Good luck with finding what works for you - good rest & sleep is so important for us.
Rgds
Christo

deleted_user 01/07/2013

Thanks, Chroux and Calmday. My sister (physician) said not to try it ever again. I might experiment. Took Benadryl for a good night sleep last night. :-)

Joe-Fodor 01/07/2013

Wow Elinora! -- I didn't know this and will never take it again! My wife had some melatonin that she got at a health food store. Because it is a supplement, it is not something that is scrupulously regulated like a regular sleep aid. I've seen reports where they've tested "melatonin" and found it contained crushed up sleeping pills!

As for the nightmares, I think the reason is that melatonin deepens your REM sleep, and whatever's boiling around in your subconscious gets a chance to come out!

I think you can get an Rx for Ambien and have it covered by insurance. I take it and have no side effects (other than sleeping). At 50 mg of prednisone, you'll need a real sleep aid. On the weekends Xanax also helps me sleep even longer, but you can't take it more than 2-3 times a week or you will get addicted. And don't ever mix Xanax with pain killers or you will end up like Heath Ledger (dead). ~Joe

deleted_user 01/07/2013

Just as a guess I would say that looking at a list and hearing others experiences about sleeping medications can give an idea, but everyones body may react differently, combinations react differently and the timing during your life or the span of a disease as well. Previously I may have been able to take 5 mg Zoplicone, now I cant take 1.25mg - less than that the pill becomes dust!

When I saw Ambien working for Joe I just wanted to add my contrasting experience with it. That was the last sleeping pill I ever took in my life and ever will take as long as I live. The delayed bulbar and respiratory problems I would get the day after Ambien were so bad I was choking on the fumes of my toothpaste never mind my own saliva! I know of another MG forum writer who had very similar experiences with sedatives. But also the act of changing medications as you know can exacerbate already existing myasthenic symptoms.

Hope you dont mind me inputting my negative experiences - TWICE!!!!

CalmdayX

deleted_user 01/07/2013

It is such a terrifying crapshoot what to take in and eat. I'm even afraid of milk products these days, since I've gotten used to soy products. Thanks for all the insight and help.

Thirteenblessings 01/07/2013

I have to add to Calamdy negative experiences with Ambien. I felt that it worked fine, but that it did add to the weakness, so I feel that for some there is a danger there. Also , the greatest danger with me having kids coming in all hours of the night, I would get woke up after I had gone to bed by one of the older kids telling me they were home.

It seemed no matter how late I waited to take it something would come up. If I was downright stupid enough to take it before my head was on it's way to the pillow I would do something stupid like buy and eliptical machine or talk to a phsycic or buy some makeup which I had no use for.

It is a sleep hypnotic and a hypnotic means you don't realize it. People have been killed in car accidents because they didn't think they were being influenced by anything. They felt perfectly fine.

I can tell you I would no sooner normally talk to a phsycic than a man in the moon. But I did, 60.00 worth. I felt pretty stupid, but it was not me. I think they should be taken off the market.

I am glad I read this, because I have had some pretty wierd dreams just of late and have tried Melatonin. I dreamed a fridge fell on my mother and crushed her when she opened it. She is not very big. LOL

deleted_user 01/07/2013

Carla, it seems you are confirming both sides (negatively). I will try to avoid Ambien and melatonin. I did taper down to 45 mg of prednisone and hope in a month to go to 40. The sleep wasn't too bad on 40.

ScottC 01/23/2017

My first onset of occular myasthenia gravis was followed a period of taking melatonin over a few weeks. My symptoms have fluctuated, but just recently had been in a period of remission. Recently, I started taking melatonin every night to help "switch off" and my symptoms deteriorated over a period of 2-3 weeks. I stopped taking melatonin when I was able to sleep a little better, and my symptoms improved slightly. However, I had melatonin again last night, and my eyelids were again quite a bit heavier. I also wonder if melatonin either has a direct effect/role to play in MG. It could also be a secondary effect where better sleep = more active immune system = worse autoimmune conditions. I caution that there are other reports around the web of autoimmune conditions being worsened by melatonin; I'll certainly be avoiding it unless *absolutely* necessary (and generally it is not!).

nukephotog 01/24/2017

I have had my mg symptoms worsen with both melatonin and ambien. I still need something to help me get to sleep and for me, a low dose of klonopin has worked with no noticeable negative impacts.

CWFK 01/24/2017

I haven't tried melatonin but I do take half of a generic sleeping pill most nights to over come the 80mg of prednisone that I take every other day. It helps and I haven't had any side effects but much needed sleep.

RonT 01/27/2017

Very interesting post about Melatonin. I have been taking 3mg of Melatonin every night for more than 10 years (long before I was diagnosed with MG). I considered it totally harmless as it is something that the body produces on its on -- just not as much when you get older. I have not seen my neuro since early December, but I think I may be in remission as I have not needed any Mestinon for more than 4 weeks (just after my last IVIG). I had been taking it every 4 hours -- day and night. I should also say that I stopped taking my statin (80mg) 4 months ago after I read a research study that indicated it could be associated with MG (University of Alabama, Birmingham). In any case, I plan to suspend the Melatonin now to see if I realize any benefit. I only take 20mg of Prednisone everyday and I never experienced difficulty sleeping. I also have Ambien and Lorezapam but I rarely use either of them. I've been afraid to use the Ambien with MG because 5mg puts me out (though without side effects) -- I just don't trust it. Thanks for sharing the information. Apparently we are all guinea pigs in this day of so many medications when no one really knows what long term use can cause or what interactions there may be.

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