My Gp is referring me to Oxford. Only because basically I forced him to as Im getting no treatment here.

Rach

Hi Rach,

I really hope you get some answers at oxford, will be crossing fingers and toes for you
take care
Kate

I started on mestinon 3 weeks ago and was doing great on 30mg every 3 hours. After 5 days, I had to increase to 60mg every 4 hours. Worked great until about the third day when I had to take a 90mg in mid-afternoon before I could get results to improve. But, then onlly needed 30mg for rest of the evening. I am quickly learning that the dosage may need to be constantly monitored as to daily activity levels-stress, physical etc. Once I got over the 1st two week adjustment, I can tell when my body needs "more oil/gas" to get going again. LOL Best of luck.

Wow that sounds odd to take the largest dose before bed. That would keep me up or at least sure not let me sleep long or well. But then I know some folks dont have it affect them like I do.

Annie59

To PMCPMC and rach .....yes this makes sense. The lung doc at Mayo said with breathing this involved you should be in a wheelchair meaning the rest of my body is not as advanced as it. This is one of the toughest pieces for me getting diagnosed tho I was diagnosed with probable from a MG crisis hospitalization. It was classic. But luck of the draw the hospital was out of Tensilon and I was seroneg so the diagnosis was withdrawn based on the Mayo neuro. BUT the mestinon fixed my breathing during that MG crisis and worked at 60mg every 6 hours for a year. Now I have to take less. Tolerance change. So I am in the place of only getting out to doctor appointments and missing my grandkids so so so so so badly.....

My breathing causes me the most problems at night, so I definitely need to take the meds at night, if not increase them due to a return of breathing issues. Last night, I had the worse time breathing and sleeping, because I could not allow pressure on my lungs.

Oh Poetist I sure wasnt implying that before bed was medically a bad idea for the disease. I used to take a bed time dose myself. I jjust had to time it just before a got to bed. If I wait an hour or so I wont beable to fall asleep nomatter what. Some nites if breathing is bad from alot of talking I just have to live with staying awake till it wears off enough.

I have interacted with some MG folks that do have it stimulate them enough to take ativan and the like. I myself have another condition that I think makes me vulnerable to it acting somewhat like coffee to me.

My breathing has been worse since Monday when I had a way too long talk on the phone first thing in the morn. I had to increase my mestinon. But today I know I just have to rest and not talk at all to try to rrecover enough. Having to work so hard to breath is so so hard. It is scary. I have some say that the time release mestinon doesnt bother them as much at nite yet helps breathing. I have not tried it as it is based on 60mg which currently I cant take.

Annie59

No harm no fowl.

Hi - the way I understand things - mestinon is simply helping the nerves connect messages to the muscles. It does not affect the course of the disease. In other words, the "cures" of MG are the treatments where one gets a thymectomy, is put on prednisone, IV plasmapheris or IvIG. These treatments are the typical methods of trying to halt the MG attack of antibodies against the nerves/muscles. Ask your neuro about your treatment.

Tresa, There was a study specific to MG and a few others that were not which said that Mestinon may in fact suppress the humoral immune system which makes antibodies.

Mestinon is a cholinesterase inhibitor. It inhibits acetylcholinesterase, the enzyme in our bodies whose job it is to mop up acetylcholine on a regular basis. It's a checks and balances situation. What Mestinon does is keep it from eating up what acetylcholine we do have so that we can use more of it for an extended period of time.

I thought that clarification might help.

There are many MGers who take either regular Mestinon or Timespan at night. We can't afford not to.

I'm concerned about this revving up of the system you refer to, Annie(59). Could it be an allergic response to bromide and not the Mestinon itself? Mestinon is not known to have that kind of response in the body.

Annie