Beth,
The hips of an 18 year old... AWESOME!!!
I wish I had a clear answer from experience here. I, too, am on mestinon only have been worsening (new symptoms) with no crisis and feel that a small dose of prednisone might give me that extra strength I am needing to do more of the things I want to do.
I did ask my 10+ year MG cousin what some options would be and she said a good multivitamin and Vitamin B. She also told me that licorice root combined with vitamin E work as "an herbal type steroid".
I hope you can find help with these ideas or others from people who know more in this group. I also think Timespan for night will help you with your morning issues and hope you get it soon and have great results!
Have a great time on your hike! I look forward to hearing about it! Becca

Thanks, Becca. Will let you know how it goes.

I am not telling you anything you haven't already heard...treating MG is so individual. Many MG patients do very well on Mestinon alone. (Timespan is not always absorbed by all of us on a consistent basis, so it is not always helpful. Some do very well on it, others not so much.) Predisone when used to treat MG usually requires a long course of it (usually a commitment of up to two years). There is no magic way to take Mestinon. Try keeping a log and see if patterns develop and then talk with your doctor about changing the way (times and doses) that you are taking it. The heat of the summer might be affecting a lot of us...I increase my Mestinon (with Dr. okay) over the summer months and it helps. Check with your doctor before making any changes, however. Hope this helps! Marie

Thanks Marie,

You sound like my doctor, no offense intended. :-). I did't know whether people did ok on Mestinon alone over the long term That is very reassuring. I did know that timespan is erratically released, I got that much from the doc but not yet what I am to do about the difficult mornings. He has given me some latitude about dosing and I expect to need much less when heat and gardening season is over, but I am waiting to see if it is ok to increase it beyond what he knows I am taking. It is just hard to wait. I am not his sickest patient by far, but a week gets to be long time when the weeds are growing.
Thanks again,
b.
If you are my doctor, please answer my email. ;-) !!

Hi b, sorry, i don't think this will help you bc i wasn't on mestinon and mestinon time release for very long, while I was on both some of my symptoms were pretty much under control but still had some, according to my nuero, the symptoms that I still had while on both mestinons, were not MG related.
I think some of these nueros are afraid to treat us aggressively, I don't think that they know everything about MG, someone on this site said that some of these MG symptoms are not in their text books.
I know what it feels like to want to have the strength to do more but can't. I am retired competitive bodybuilder, very strong, I have never done any kind of drugs for bodybuilding or other wise. I am still in pretty well shape, I'm 49 years and too young to feel like I am 95 most days, I will be trying mestinon again soon.

My best to you,
Maria

I tried to go at it with mestinon alone, but the progession finally took me over after four months.

Both of you be careful about the progression, because mine went from ok, to pretty bad in a short time. I decided to start my cellcept at that time, and I had to have IVIG shortly after to push it back as the progression became faster.

There are people here like Wab, that have been on mestinon for 20 yrs and nothing else. This is a snowflake disease, we are all different. I wish you both peace no matter how you tackle this. I would just like to send out words of caution, because I wouldn't want anything to happen because you didn't treat the disease, and only treated the symptoms, by taking mestinon only. The disease can retreat on its own from what I have read. If you go at it with Mestinon only, you will have to hope it does that, or of course never get worse. I have read some testimony from someone stating they were on mestinon only for 6 yrs and got remission, but I don't know how severe their symptoms were and so on.

Please keep us posted.

Peace,

TJ

I'm with TJ on this. You just never know where this disease is going to take you or how it will progress.

In my own case, I was taking pyridostigmine, only, for about six months (it's all a blur now) and then the MG progressed fiercely so I went on a smallish (~20-30mg) prednisone and CellCept. The MG seemed to really blossom under this regimen. Twe years later I got off the CellCept because it simply didn't work for me.

Knowing what I do know now, I would have aggressively treated the disease from the get-go by immediately starting on prednisone and CellCept, rather than waiting.

Someone else here wrote that 7 out of 10 people's MG doesn't generalize. Lucky them. Perhaps that's why docs are so frightfully conservative about prescribing prednisone and immunosupressants. They all seem to take a wait-and-let's-see approach. I strenuously disagree. But that comes from having been visited by the grim reaper on a couple of occasions.

Beth's comment about little old ladies and osteoporosis really got me concerned over the weekend. What a dilemma! The topic preoccupied my discussions with my lady friend over the weekend after we discussed all the uses of acetycholine in neural transmission (fun discussions, huh? But with an MD and a PhD in immunochemistry and an expert in neural transmission, this stuff keeps her up at night. Not me, I'd rather sleep.). However, we both came to the same conclusion about prednisone in old ladies wrt the possibility of exacerbating osteoporosis: do it. Everything is about tradeoff and risk. Is the risk from not taking prednisone greater than the risk from osteoporosis?

I always need to stay grounded and come back to a basic truth: MG is a killer disease. I personally know a person whose young sister died directly from MG. No prednisone. No immunosupressants. There is no question that I would have died without prednisone.

While 70 percent of MG'ers will never generalize, once the other 30 percent of us start the slide downhill, the trip goes so fast and so far, it is a terrifying ride. To think that one could avoid this slide by taking presnisone and CellCept or Imuran, it infuriates me that docs are so conservative. I can understand avoiding the prednisone if symptoms are well controlled by Mestinon while waiting for the immunosupressant to kick in but to not start someone on immunosuppresant therapy while waiting to see if the patient 's MG will generalize just seems totally foolhard to me and flirting with disaster.

Thanks all,

I appreciate your concern. Thanks for talking to your friend Curt. Between you and TJ and considering It seems like I'm slipping, I'm going to definitely push to be treated more aggressively. I am still going to load up on the Mestinon and try that hike next week. It is ride, hike, ride, hike, etc. so I could stay on the bus if necessary. I can't really imagine doing that. At least the temperatures should be cooler up in the mountains.

I generalized years ago and rather like depression, you can just get tired of feeling so bad when there is no reason to feel that way. Myasthenia is a reason, but there is no reason not to be treated when there is treatment available. I sat on my back steps and looked at my vegetables and flowers and thought, if I am doing so great, why are there weeds in my beds??? I've just got to feeling good enough to know that I'm not lazy or crazy, and now I would like to feel like I am not sick!

Thanks for chiming in, I'll keep you posted,
b.

Reading my diary today Beth? We are SO on the same page at the same time right now! I was just going to post a question like this! Blessings my friend!

Beth -

I am concerned for you. You sound like a wonderful and compassionate human being. Please don't discount the emotional aspects of getting this disease. Make sure to take care of you, first, and that means your head and your heart as well as your body.

When I came down with MG six years ago, I was president of the second largest hiking club in the US and had been a voracious hiker for many years. Unfortunately, the sort of high impact hiking - extreme hiking - I loved so much was enough to put me in the hospital. I still can't do anywhere near what I used to, even though my symptoms are mostly under control. The fatigue hiking causes me is so severe that I start regressing and develop bulbar symptoms.

Get aggressive, Beth. You of all people are able to do a "cost-benefit analysis" associated with the choices.

Love and peace,
Curt

Thanks so much for your concern, Curt. The "hiking" I am doing at the conference is supposed to be "easy" and I am doing it with a bunch of "plant people" which is usually not very fast, because we stop to look at all the plants which is the purpose of the hike, not to get to some place up in the mountains. My husband is doing one of those other kinds of hikes where you get somewhere and then look at plants. Actually I am more in trepidation of the auditorium steps and the length of the days. Except for the hikes themselves, the conference doesn't leave the school campus and the morning after the hike is filled with more leisurely lectures. I can get up to the top of the auditorium in an elevator and walk down all the way to the bottom floor where there is another elevator. I am taking my hiking poles both for the hike and the auditorium steps. I don't mind looking silly. I can skip some of the conference if need be, but don't want to miss Bailey White on "The Joys and Horrors of Inheriting an old Family Garden."
Peace,
Beth