Over the last week I have not been getting my normal amount of sleep. Thanks to a tip from Celeste, I believe I know the reason. It might be the Prednisone that I started taking a week ago. I am finding that it takes longer to fall asleep. Worse yet, I have great trouble falling back asleep if I should be awakened during the day. Normally I could fall back asleep quickly if my sleep was disturbed. I only got 4 hours of sleep today and will probably pay a price for it later tonight at work.

Remembering that I work the graveyard shift, sleeping from 6:00 or 7 a.m. to 3:00 p.m., here is my current MG drug schedule:

1. Mestinon Timespan at 4:00 a.m. and 4:00 p.m.
2. Pyridostigime at noon, 8:00 p.m. and midnight.
3. Prednisone at 4:00 a.m., noon, and 8:00 p.m.

I think the 4:00 a.m. Prednisone may be part of the problem. Also the noon Pyrdostigime might not be helpful, as I am sleeping, rested, and the most symptom free. I had been setting an alarm to take the noon dose, sleeping another 3 hours after taking it.

I wanted to get some advice before I see my neurologist on February the 3rd. I was thinking of concentrating both the Pydostigime and Prednison during my waking hours. That means that the 3 Pydostigime tablets and the 3 Prednison tablets would be taken during my 16 or 17 hour waking period. It also means that I would be taking a Pydostigime 3 hours after taking a Mestinon Timespan tablet.

I believe that I metabolize the Pyridostigime and Mestinon out of my system quickly. Before starting the Mestinon Timespan, when I was only taking the Pyridostigime, I would have the return of symptoms around 3 hours after taking it.

I was thinking of changing my schedule to the following:

1. Mestinon Timespan at 4:00 a.m. and 7:00 p.m.
2. Pyridostigime at 4:00 p.m. 7:00 p.m. and midnight.
3. Prednisone at 4:00 p.m., 7:00 p.m., and midnight.

I have 5 different 7-day pill boxes and set iPhone alarms to make this all manageable.

Any advice?

Thanks,

-Mark-

Mark -

My prescribing physician initially told me to split my Pred dose (am/pm) but 6 mos later, during my wean, my endocrinologist (he oversaw the taper process) said that was a mistake.

He said for future reference to always take Pred around 7am as it most closely mimics the body's natural cortisol production and will help prevent adrenal fatigue. Not sure if all drs support this but worth asking.

As for Pred, in general, I remember thinking, "sleep....what's that?!!?"....

Best of luck.

PS This is merely my opinion, but I would run from Prednisone. The long term side effects are not fun. In the beginning it makes you feel so much better until the side effects kick in (some of which are not reversible).

There are safer treatments if you ask me. I would encourage you to talk to your dr ab a steroid sparing agent like Imuran, Methotraxate and/or IVIG etc....

Needananswer is correct in that pred is best taken in one dose, between the hours of 6 and 8 am. I've been on pred for a lot of years, and I found that even high dose would still allow me to nap during the day (I was really sick back then) but I had trouble with nighttime sleep. My body just seemed to work itself into overdrive the closer it got to bedtime. This would be ideal for you, mpage, since you need the energy during the night.

Good luck!

I also set alarms to take meds, but I only take timespan right before I go to sleep so that it will carry me for six hours until I wake up at six am and start over. I do not take prednisone because of side effects and it didn't work for me anyway, but you do need to ask your doctor about weaning off of it and starting another drug that will possibly substitute for it. Steroids are a two edged sword. They may make you feel better, but can be very damaging long term.

I will be seeing my neurologist on February 3rd and will speak to him about my MG drug choices. I used the new schedule Thursday, and I think I had good results. I wont know about any improvement on sleep for one or two days. Although I started the day with labored speech, which got worse a few hours into my taxi-driving shift, by 10:00 p.m. my symptoms were noticeably less sever. By the end of the shift at 3:00 a.m. I was very strong. This was the first time since I was diagnose in November 2013 that I was stronger at the end of the shift than I was at the beginning. I wonder if it is too early to declare that I am cured.

Thanks to all for the valuable information above.

-Mark-

The only way to communicate with my doctors between visits is to send them faxes. Usually they have their medical assistants call back by phone. I sent my neurologist a fax with the above information, and his medical assistant responded that the change in dose timing was OK. The medical assistant also said that if I was having trouble sleeping the doctor would prescribe a sleeping pill. I told her that I do not want to start taking sleeping pills, but would speak to him further about other options to the Prednisone when I see him on February the 3rd.

Note: My doctors should be well aware of my sleeping schedule. In addition to informing them of my reversed schedule during appointments, the fax I sent about having trouble sleeping clearly stated my sleeping habits. Yet they called two hours after I fell asleep to address this issue. I usually turn off my phone during the day, but forgot to do it this morning. When I saw the doctor's office number, I decided to answer it in case it was important. I should have just let it go to voice mail and stayed sleeping. I hope I can get back to sleep.

-Mark-

Hi Mark -

It is smart of you to ask all the right questions.

The steroid sparing immunosuppressants, in the opinion of my dr, are typically considered safer than long term, high does steroids for a variety of reasons.
One reason to consider: Since the Pred will replace the body's natural production of cortisol your adrenal glands can become "lazy" after long term use.

Here's the hiccup: when you try to taper, in some instances and depending on the dose and duration, the glands don't want to turn back on. Then you can become "steroid dependent" for life.

You may already know all this so forgive me, if so, but I didn't fully appreciate this until well into my course at which point I sought the guidance of my endo. The trick when tapering is go slow - painfully slow - so the adrenals "wake back up".

In my autoimmune travels (ie waiting rooms etc) I have met a number of patients where this was the case (some being treated for Lupus, MG, Crohns etc) and the overwhelming sentiment was that they wished their drs had properly warned them of not only this but of other side effects.

The other s/e I experienced were:

1. Bone Loss and associated stress fractures (after only a short time)
and enamel loss. My teeth thinned.
2. Refractory thrush (meaning it was VERY VERY painful in my mouth/throat and would not clear until after I was off the pred despite heavy duty antifungals)
3. Multiple skin infections
4. The fattest face in the world (I refuse to call it moon face bc the moon is beautiful and this insane swelling was not). Unlike most ppl who fully reverse, I still am dealing with it 6 months later. It is much better but still not my face.
5. Damage to my stomach lining. Long term pred can cause ulcers and other lining issues. I am just going through it now. It has been painful.
6. Joint problems

These all in their own right have diminished my QOL and yet I have heard far worse horror stories. Again, I don't mean to alarm you but I do wish someone had laid this out for me. I would still have tried the pred but I would have taken protective measures like:

1. a low sodium diet
2. Use vit d and calcium
3. Use antacids to protect my stomach etc.


I will write more later on IVIG/other treatment options. My eyes are tired and I know if anyone gets that it's this group

Last thought: IVIG is typically offered last bc it is the most $$$$.

Don't forget diabetes. That's usually the first thing to show up. I had to take insulin shots when I was on it, when I usually control my sugar with diet.
Mpage, be careful of sleeping meds. They can further weaken your muscles, especially those needed for breathing.

We often pickup prescriptions at Walgreen's and CVS pharmacies in our taxicabs and deliver them to various rest homes around the South Bay. This gave me the opportunity to speak to several different pharmacists in the past two day. All said the same. Prednisone is the least invasive of the others mentioned. They said that this is the reason that the doctors start with it.

I looked at the side effects of the others options you mentioned, and they did not give me a warm and fuzzy feeling.

I am very happy to learning about the consequences of the long-term Prednisone use that you mentioned in your post. I get the felling that I will not have much of a choice, unless there is a compelling reason to stop Prednisone. I am glade to know about these consequences, so that I can take preventive measure to mitigate the effects right from he start. I've only been on it for about 10 days.

I wonder if you can take it for awhile, and then stop or taper off for a period, and see if continual use is necessary. In December the Mestinon appeared to be enough. Is it possible to take it only when one needs it for symptoms? I am most concerned by the brittle bones and the lazy immune system.

-Mark-