my throat is still pretty bad. I don't think I can take any higher dose than what I am on now. Tonight I got a muscle cramp in my stomach, it was pretty scary.
Myasthenia Gravis - Does anyone have throat issues? My doctor has adjusted my med. (mestinon) but?
- Posted:
- 4 Feb 2010 by msc1122
- Topics:
- mestinon, myasthenia gravis
Details:
Responses (2)
4 Feb 2010
Muscle cramps are a normal side effect with mestinon. When you say your throat is still pretty bad, do you mean trouble swallowing? If you are having trouble breathing, call you doctor immediately.
It sounds like you are taking the max recommended dosage of mestinon and still having trouble. It is time for your doctor to add to your medications and reduce the mestinon.
I am not a doctor, just a fellow MG. I have had it for over a year. I had trouble swallowing at one point, too. I also have had cramps, but they were in my legs and hands. My medications are holding everything at bay and have been for months. I do have some side effects, but I no longer have any cramping.
8 Jun 2010
I had big throat problems. At points I could barely swallow and had to stop eating as my muscles got too child and I was choking. I couldn't move my tongue rond my mouth properly and had to use my fingers to help! I am now post-op thymoma and pretty much symptom free. And I did have it for two years before anyone knew what was wrong. My advice would be ask your doctor if he can prescribe something to stop the cramps. I was prescribed loperamide and that worked when I took one or two for every 60 mg tab of mestinon. If I took too much mestinon my muscles started twitching which was unpleasant. I am not a doctor so obviously talk to yours as this is just my own experience.
SiCroy
9 Jun 2010
tired not child, obviously. easy mistake
mediatrix
9 Jun 2010
My husband could not swallow even water for sometime. But now he can. He takes a long time to chew and swallow his food. It takes him an hour to an hour and half to finish his meal. He eats rice and fish and chicken and veggies. Meat is difficult for him to chew.
He tells me his tongue feels thick and that is the signal that he has a slur.
My husband was diagnosed in November 2009 and had his thymectomy in
February 2010. The tumor was benign although it was invasive.. No radiation recommended.
He takes the same medicines ..mestinon 60mgs 3 x a day, cellcept 2x500mg, in the morning and again before bedtime, 1x 20 mg nexium
Before cellcept he was given imuran. It did not work for him
His shoulder muscles get tired easily. So he uses a battery operated toothbrush. Rather than simply wash his face, he takes a shower.It is easier to shower one's face than to wash.
Shampooing is also a tiring task for him .
I wonder which medicine works on the muscle.
.
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Thank you for the info. I will check with in my doctor this morning. My doctor had me on 60 mg alternating with 45 mg, 4 x a day. I wake up feeling as if someone is choking me and it gets worse as the day progresses. Last night I took a 5th dose of 30 mg and when I woke up 4 hours later I took 60 mg, I started my day as usual. I went to the gym and my throat felt pretty well. However, I took it really slow at the gym. I also went to physical therapy for my neck and shoulders today and at 8 I took 45mg, so far my throat is still pretty well. I'm hoping it stays well all day. May I call on you again if I have ? I have been living with mg for years but didn't know I had mg until 12/31/09.
May I ask, what medications are you currently on?
Yes, you may ask me questions in the future. I am currently taking Predisone (alternating 5 mg and 2.5 mg once per day), Cellcept (2 gms/day - 1 gm in the morning and 1 gm in the evening) and Mestinon (60 mg, three times daily). I've been on Prednisone since about March 09. I started out at 30 mg per day (10 mg three times). I did not start cellcept until august. I found out I had MG Dec 2008. I was seeing double and could not control both eyes at the same time. In roughly Fedruary 09 is when I had a little trouble swallowing. I also had difficutlies holding my head up when I was tired. Several times, I had to lean my head against the wall behind me to keep my head up.
With my current medications, I sometimes forget to take some of my medications and end up skipping some one day with no ill effects. The reason I forget to take them is because I don't have any of the telltale symptoms.
Expand this post...
When I was just on Mestinon, I found that I needed to "front load" the doses. I took one at breakfast, one mid morning (9 am) and my third dose after lunch (12:30). The last dose I took right after dinner (6:30 PM).
I am amazed that you could go for years and not know. I could not have waited that long. I would probably be dead. Cheery thought.
I am glad you are doing well. It's good to read that you have found the right medicine and it is working for you. This gives me a lot of hope.
I am pretty amazed as well. Many times over the past years I went to Doctors with various complaints but they conviced me that my fatigueness, aches and pains were due to me bodybuilding (natural competitive bodybuilder). I didn't waste my time going back to Doctors, I learned to listen to my body and give in to it. I also made it a habit to see my physical therapist.
8 years ago I stopped weight lifting, I continued doing cardio and still dealing with my fatigue, aches and pains. 2 years ago my schedual didn't allow me to continue cardio. My aches and pains were becoming more severe, I attributed all that, to me being under tremendous tress and really beleived it.
Expand this post...
This past year I had problems walking and traveling. I thought to myself, that I needed to do what I had done in the past to feel better. July 2009 I went back to the gym. I also started to eat the foods I used to eat as a bodybuilder and within 1 month of training, stretching etc., my legs felt better and I could walk again. Then I stopped working out, in order to test my legs and sure enough within 3 weeks I had problems walking again. As soon I started working out my legs felt better.
September my throat started to bother me and it effected everything I did. If it wasn't for my throat I would have just continued working out, eating resting and dealing with everything else as I have all my life.
I put all my symptoms together and knew something was seriously wrong with me and so I started again with Doctors but this time I was persistent with every doctor I saw.
I have been to 7 Doctors since September. I have had all kinds of tests, MRI'S, CAT scans, nerve tests and all kinds of blood work etc..It has been very exausting going to all these Dr's. and frustrating to my family.
I made sure to get all my medical records from all these previous Doctors and kept moving to different Doctors with my medical records.
The Doctor I am seeing now didn't think I had MG. His exact words were "YOU DON'T HAVE MG BUT MY JOB IS TO RULE IT OUT" and so, he schedualed an apponitment for a single fiber EMG.
On 12/31/09 he did this test. He was very very surprise to see it was positive. His exact words to me were "how long have you been feeling like this?
I saw my Doctor today. The first thing he said to me was, "I really didn't think you had MG". I told him he had me convinced I didn't have it.
Anyway, He added an anti-spasm med. for my stomach spasms and also a time release mestinon for the night time. I found my throat to feel normal again with the higher doses of mestinon every 4 hours during the day and night. I am looking forward to not feeling my throat anymore.
I now know that the way I felt, upon waking up in the past (beat up) was not normal but I had nothing to compare it to until now. I am still amazed myself.
My spouse has MG. He was taking 60mg mestinon 4 x a day. (7 - 11 - 3 -7 No mestinon after 7 pm.) When he started having difficulty in chewing and swallowing, his doctor advised him to check the possibility of taking it every 3 hours. It was greata for 1 day and then worst thereafter. The doctor asked him to switch to 5 hour intervals. It worked He feels much better now. He has left discomfort in chewing and swallowing and his salivation does not bother him that much. The doctor reminded us about over dosage, under dosage and prescribed medicine to be taken as needed as concerns we should remember.
In researching this drug it gives medications to take to reduce thes effects. I have been seen by many doctors in the ER and not one has treaated the symptons of over dose of Mestinon/Pyridostigimide.I will go back and get the names of what is to be taken.