Has Your Doctor Considered Mestinon?

pbush · 01-02-2012, 05:40 PM

I have no clue as to what percentage of the ALS population might benefit. But within a few months of diagnosis, my husband's neurologist (not from the ALS Clinic) prescribed Mestinon (the generic version), which is a drug for myasthenia gravis. He quoted a mentor of his as suggesting: why not try it?

Subsequently, my husband's progression slowed significantly. I only mention this because I believe all the attention now is on the development of new drugs that might be years away. Perhaps there are existing drugs that might be beneficial now for a subgroup of ALS patients, such as my husband.

The generic version of Mestinon is very inexpensive. Is it worth asking your neurologist about it? The doctor at the ALS clinic was very interested in the fact that my husband is taking the drug. He had nothing negative to say about it.

For your information: the generic version is pyridostigmine. The drug comes in 60 mg tablets. My husband takes 1/2 tablet, three times a day.

I have had many debates with myself about bringing this up. I don't want to cause a tempest in a teapot. I just want to share.

Happy New Year,
V, Caregiver

TedH5 · 01-02-2012, 06:01 PM

Thank you for sharing. I am not questioning you or the results. My question is how did the Dr. determine that his progression slowed? I am curious as to whether there were certain tests or measurements that the Dr. has been using to track your husbands progression.

I am very happy for you and your husband and hope that it continues to help!

Stay strong and keep the faith!

pbush · 01-02-2012, 06:35 PM

Hi, TedH5,

There has been no specific testing by either the ALS Clinic doctor or the individual neurologist. Or even the pulmonolgist. They simply say he is strong and that he is "stable" after they do their arm and leg and breathing evaluations. The pulmonologist has now pushed out his appointments to 3 months. His neurology appointments are at 2 month intervals.

From my own observations, the day after he began the drug, the fasciculations in his hands disappeared. He has steadily gained weight and plays a mean game of dominoes.

As you must realize, I do not mean to imply that he is "getting better." Only that he is not going downhill fast, as he did in the first months. Something has clearly changed since his diagnosis in March 2010.

Thanks for your comments!

V, Caregiver

TedH5 · 01-02-2012, 06:39 PM

I knew you were not implying improvement just slowed progression which is definitely a reason to celebrate. Does the Neuro at the ALS clinic know he is on that medication?

I am very happy for you and your husband and hope it continues to slow his progression! What a wonderful gift!

patricia1 · 01-02-2012, 06:40 PM

Quote:

Originally Posted by pbush

I have no clue as to what percentage of the ALS population might benefit. But within a few months of diagnosis, my husband's neurologist (not from the ALS Clinic) prescribed Mestinon (the generic version), which is a drug for myasthenia gravis. He quoted a mentor of his as suggesting: why not try it?

Subsequently, my husband's progression slowed significantly. I only mention this because I believe all the attention now is on the development of new drugs that might be years away. Perhaps there are existing drugs that might be beneficial now for a subgroup of ALS patients, such as my husband.

The generic version of Mestinon is very inexpensive. Is it worth asking your neurologist about it? The doctor at the ALS clinic was very interested in the fact that my husband is taking the drug. He had nothing negative to say about it.

For your information: the generic version is pyridostigmine. The drug comes in 60 mg tablets. My husband takes 1/2 tablet, three times a day.

I have had many debates with myself about bringing this up. I don't want to cause a tempest in a teapot. I just want to share.

Happy New Year,
V, Caregiver

Yes my first diagnosed was MG l stopped when l didt see a difference right away.like the doctor said l would if l had MG.
I am progessing slowly too.So who knows .But its worth it to ask

Pat

pbush · 01-02-2012, 06:50 PM

Ted: Yes the ALS Clinic doctor knows he is on the drug and was very interested to learn that. As I indicated, he made no negative remark about it--just seemed surprised.

My personal doctor (an internist) tells me that the study of neurology is still in the dark ages. So much is still unknown.

Sometimes the biggest medical discoveries are blunders or accidents. Well, I am happy that a young neurologist decided to put his toe in the water for my husband. For an ALS patient, a plateau can be a wonderful thing!

V, Caregiver

seaside · 01-02-2012, 07:19 PM

Well V, at the very least it would be rude of you not to share with the community the name of this 'whipersnapper' of a neurologist who has begun to blaze his own trail. Just give me a name and a telephone number because I want to live too. Your tempest in a teapot is a brew bubbling over with questionable merit. Just a name and a number.

TedH5 · 01-02-2012, 07:23 PM

Quote:

Originally Posted by pbush

Ted: Yes the ALS Clinic doctor knows he is on the drug and was very interested to learn that. As I indicated, he made no negative remark about it--just seemed surprised.

My personal doctor (an internist) tells me that the study of neurology is still in the dark ages. So much is still unknown.

Sometimes the biggest medical discoveries are blunders or accidents. Well, I am happy that a young neurologist decided to put his toe in the water for my husband. For an ALS patient, a plateau can be a wonderful thing!

V, Caregiver

I agree and that is why I asked if the Neuro at the Clinic knew. Obviously sharing info is vital to learning! I am so happy for you and your husband! Please keep us updated!

pbush · 01-02-2012, 07:28 PM

Hi, Joe:

Ouch!

V, Caregiver

seaside · 01-02-2012, 08:00 PM

Dr. Ouch of which hospital?

rose · 01-02-2012, 09:44 PM

I tried it. Not to throw a damper on the party, but it made me feel worse. There have been a few forum members in the past who were on it for a while. There are only a couple I can think of by name, (other than Patricia) BethU tried it. I don't know how long she was on it, but it was not compatible with her heart meds. Ronelle also took it, but stopped when it began to make her feel worse.

The Patients Like Me forum has a few PALS who list it as a med...

pbush · 01-03-2012, 07:11 AM

Thanks for the responses. It seems there are very few who have used the drug.

My husband began using Rilutek within 60 days of diagnosis. A few months later he began using the Mestinon. So he has been taking the Rilutek/Mestinon "cocktail" for well over a year. During that time he has had liver testing at 3 month intervals, showing no sign of toxicity. Additionally, he has never had any discomfort or side effects from either drug.

The key factor will always be "who can tolerate what." Anyway, that's our story with the Mestinon. Food for thought.

V, Caregiver

seaside · 01-03-2012, 07:20 AM

Thank you rose, I'll search out some names. I'm going to clinic on Monday and bringing up this subject with the words 'I read on the internet' doesn't have the weight of 'Dr. X from Tuscon has patients taking Mestinon'.

rose · 01-03-2012, 09:24 AM

V, it is wonderful that your husband is able to tolerate both drugs without side effects.

Anyone who is interested in trying Mestinon could most likely have their regular neurologist prescribe it for them. It is a common drug, and there is a generic available, so it is not costly to take (as opposed to Rilutek)

We have a forum member who was originally diagnosed with ALS by a prominent Houston neurologist (Dr Appel) A neurologist more local to where she lived wanted to try her on the Mestinon after her diagnosis by Dr Appel, and the results with Mestinon were dramatic for her. This is what led to her diagnosis being changed from ALS to MG, or at least myasthenic syndrome.

If you want to read more about her experiences, do a search by her user name (Shatzie) She has several very helpful posts on this subject, not only in threads she started, but as replies in threads by others.