Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and swallowing are most frequently affected.

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THC/HUP- A : Treatments for MG?

This is interesting to me still, although smoking marijuana or anything else is not optimal for people with MG. We have heard from Norcal Dad around here that he has ingested before. I mentioned it to my Neuro. She didn't want to talk about it only stating about the smoke and lungs issues, because she knows about its action. I wonder if it helped, even though it would be temporary like Mestinon.

I know how it makes me feel when I have tried it in moderation, and my symptoms change. Everything feels good, unless I have to move around, then it becomes a challenge. Not weaker, but cloudy headed? and just heavier feeling, although not weighing me down if I realize and focus on my movements etc.

I think it has properties of acetycholine inhibition and acetycholineterase inhibition, which wouldn't make it any sort of treatment for MG. I know that MG is a peripheral nervous system condition and THC goes to the central, so that would support perhaps Alzheimers for treatment. Huperzine A also crosses the blood brain barrier, which has been said to be effective for MG.

I tried Huperzine A one night, and have never tried it again. I have heard from a few people over time that mentioned it.

Back to THC:

"Several studies have suggested that THC also has an anticholinesterase action which may implicate it as a potential treatment for Alzheimer's and Myasthenia Gravis."

http://en.wikipedia.org/wiki/Delta9-tetrahydrocannabinol

THC, along with Caffeine and Pyridostigimine listed as Acetylcholineterase inhibitors:

http://en.wikipedia.org/wiki/Acetylcholinesterase_inhibitor

A study on this:
"Steady-state kinetic analysis of THC inhibition revealed that THC competitively inhibits AChE...This level of inhibition is relatively modest"

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2562334/

I think my conclusion is that trying marijuana is not going to hurt you in moderation, and moderation is the keyword. Used with caution. Many things in moderation can be fine.

"The researchers said it's more difficult to determine if long-term, heavy marijuana use is worse for lungs - because that pattern of smoking was "relatively rare" among the study participants - but they said there was a need for caution and moderation when marijuana use is considered."

"With up to 7 joint-years of life-time exposure, we found no evidence that increasing exposure to marijuana adversely affects pulmonary function," the researchers wrote in study, published in the Jan. 10 issue of the Journal of the American Medical Association. In fact, the researchers found a slight increase in occasional marijuana smokers' lung function. That increase may be indicative of marijuana smokers taking deep breaths and holding the smoke in, the researchers said....

At more than 10 joint-years of marijuana exposure, the researchers saw a slight decline in lung function, but the researchers said that finding was not statistically significant, so could be due to chance. Cigarette smokers, who smoked a median of eight to nine cigarettes per day, saw a significant drop in lung function over the twenty year study. "

http://www.cbsnews.com/8301-504763_162-57356379-10391704/is-smoking-marijuana-bad-for-your-lungs/

Anyone have experience or have something to add about/on this?

TJ

Replies

jeanniea
jeanniea

I can not tolerate any type of smoke any where arround me. It makes my breathing tighter and worse than it already is.

I wouldn't consider smoking anything. Taking it in other forms? Not regulated or studied enough for me. My body is heavy feeling and uncoordinated enough without this. Same with brain fog- dont need help there either.

Back in the 70's.I enjoyed a joint here and there but recreationally not for medical purposes.

Not seei g it as a helpful mg treatment. Sorry.
bweeds
bweeds

Jeannie,
I'm with you, totally intolerant to smoke (so I never even had a joint), and it would seem that anything that affected your lungs, movement, and impaired your judgement is not something for someone with MG to have on board,

I certainly wouldn't want it for a treatment when there are other options known to work better. I have enough trouble just remembering to take my pills, trying to swallow them, and keeping from falling into walls while doing the MG shuffle. b.
f
jimmijane
jimmijane

During times that l have been physically exhausted,but my mind wasn't,l would have an occasional smoke,it allowed me to sleep soundly and wake like l have had a good nights sleep.For me thats what it does within minutes,sleep ,so need to worry about impaired judgement or any thing else.
bweeds
bweeds

If you want to smoke (or drink) there will always be an occasion to do so. Concerns with marijuana in addition to immediate undesireable effects, concern not only law enforecement, but its slow excretion.

There may be a place for "medicinal doses" of both, but one has to be concerned about their safety and efficacy, as with any other drug, and the potential for abuse--all drugs, not just MJ and alcohol. Family history is helpful if other members of the close family have taken the drug and had difficulties.

Most drugs natural or manufactured have dangers and we should keep our eyes open (propped if necessary) to what they are. b.
cgreens
cgreens

Possible dangers? You betcha!

Is marijuana more dangerous to ones health than Prednisone, Imuran, etc etc? NO

I would say it overall is no more dangerous than Mestinon is. Of course, mestinon is always the same and marijuana is not. There are different strains and they can have different effects, good and bad per person. Could even have chemicals or pesticides on it. For MG, I think it might be possible that happened to me. I may have smoked some with pesticide or chemical laced or something. Who knows for sure?

I quit smoking anything for well over a year until recently started smoking a little pot again. I am so happy I quit smoking cigarettes. That is something I wasn't sure I could do. Pot doesn't seem so addictive. All mind of matter it seems though.

As far as addiction goes(chemical dependency), I believe that can happen, but I don't consider marijuana as addictive as other drugs including alcohol.


I would venture to say it is safer for an Ocular only MG'er. Then they need not worry much about the things mentioned.


Legality is a the other thing, Not really legal to buy it or sell it or even possess it in many states for that matter. It is a felony in Nevada I know.

I like the idea of using it for sleep to. Perhaps instead of a timespan?

Last night, I took 60mg of mestinon @6PM, and went to bed @12:30AM, and I smoked a little before bed, and woke up after 8AM, and I took my cellcept with breakfast @9:00AM. I was feeling weak after 11AM, and smoke a little. By 11:30, I was feeling better, but not strong enough. I took 60mg Mestinon after that. I feel good right now, and I am going out to lunch.

I enjoy reading what you all are saying. I appreciate it.

Everyone have a good day.
TJ
deleted_user
deleted_user

In the UK neurologists can prescribe the active agent from cannabis (THC) in the form of a spray for application under the tounge. Generally it is used for sufferers of MS. It avoids all the dangers of smoking by being a solution in water with a little non-ionic food grade wetting agent. The neruo group I talked to said it does sometime helps some of the symptoms of MS but nobody had heard of any benefit in MG.

I don't know if its available to try in the US. The dose is carefully adjusted to avoid the chronic anxiety/pychosis inducing effects of THC so its not unsafe although the FDA might take a different view. (They tried almost decriminalising pot here a couple of years ago but the psych wards filled up with hyperanxious patients so they did a bit of a U-turn).
cgreens
cgreens

Interesting Gwyn.

"nobody had heard of any benefit in MG."

The links I posted show why it would. I think that if we could get the dosages higher and given to us as you suggest, there would definitely be a benefit to us.
deleted_user
deleted_user

I think they were talking clinicaly. The cites you refer to are wikipedia and hence to be used cautiously as they can be unreliable in their conclusions. The underlying publications were one to an old mouse study 40 years ago which could not be repeated and one on Alzhimer's disease. That one is a sound piece of work. However it forgot to mention that the effect of THC on neurons is well known. It preserves old neurons (which is why it may help in Alzhimer's) but is detremental to developing neurons (which is why it has unfortunate effects sometimes on memory - they didn't call it dope for nothing or is that back to front and they called dopes that becase they looked like they were on pot?).

The data suggests THC is an inhibitor of acetylcholinesterase but much less potent than pyridostigmine. There is no data on how it is distributed periferally to junctions so I could not estimte if it was likely to have an effect of not. The data is sufficiently interesting that if it had been obtained on another molecule it would probably have been followed up but it is just too difficult to work with prohibited substances.
cgreens
cgreens

Thanks Gwyn.
Good point in that wikipedia is making the help MG suggestion based on the study with mice as it may pertain to Alzheimers. That is why I mentioned Huperzine A, as it seems to be a treatment for Alzheimers but very little effect on MG. Although there have been people(never to be heard from again) that say Hup A helps them along with their MG. I tried it, and hated it, but it was when I was struggling.

Bottom line is that we have more effective treatments for MG, and marijuana, like Mestinon isn't really a treatment per se for MG anyway. Both would be acting like an aspirin, with mestinon being stronger acting.

Something else that I must consider is my concern of anxiety due to the intake of marijuana. If too much caffeine would be an precursor to anxiety, then marijuana would be as well.

Low dose or no dose would be the solution.
snowbeltfolkie
snowbeltfolkie

A word of caution. A sidenote, to the technical & medical aspects.
Some people: that I have known since childhood?
Became - significant local pot growers, in the '70s & '80s.

These guys - DRENCHED - their cannabis plots -
- with all kinds of ag-chemicals, to get rid of pests & plant disease.
And even back then? If you were to read - the fine print?
On the warning label - of most of these ag-chemical containers?

You would see the following warning.
''It has been determined that this product contains Known Neurotoxins. Prolonged exposure to vapors, or skin contamination with this product: has been shown to cause Neurological Poisoning. If you suspect contamination with this product, seek immediate medical help.''

Of course, this cannabis was harvested - Neurotoxins and all.
And - dried, of course. Concentrating the Neurotoxins, even more.
So unfortunately? Customers got a Nice Dose of Neurotoxins -
- right along with their THC.

On the other hand? I know people who grow their own, for personal use only, totally organic.
They've been doing that - for 35 years.
To them? An evening toke - is no different?
Than an after-work beer, or an evening glass of wine.
An after-dinner toke - really seems to agree with these people.

Then: there's the people, who become addicted to pot. Eventually developing extreme anxiety, after years of obsessive use.
I have had several friends - reach this terrible place.
The calm, laid-back hippies of yesterday - are gone.
Replaced by prematurely-old, anxiety-ridden people, suffering from emphysema.
And because they are no longer capable - of good social relations?
They have alienated all their family & friends.

I don't smoke anything, myself.
(I bet I have lousy brain-receptors, for nicotine and cannabis.)

I love my friends - who seem unharmed, by their after-dinner toke.
And I miss my old friends, who have been dropping dead from their addiction - for at least 20-years now.
- Ross
cgreens
cgreens

Ross said:

"And because they are no longer capable - of good social relations?
They have alienated all their family & friends."

I have friends like that, one in particular that I am thinking of now, and I don't want to be like that. I don't know how I developed the anxiety I do have, but I don't like the anxiety at all. Factors and possibility for MG exist through the other neurotoxins etc you mention as well.

Knowing that my anxiety has improved and my intake of all smoking was nonexistent, I can't help but wonder if marijuana played a part in all of this. I can't tell what is on the stuff I am smoking or ingesting. What did I do? Start with marijuana again! I think my experiment will die out quickly here and I will not be trying any marijuana for awhile, if at all.

I really appreciate all the input around here. You all are awesome.
jimmijane
jimmijane

l've always found this such a opinionated subject,those for/against and those who won't even go there for the legal reasons.

For my few times a year ,l don't let it worry me to much on any front ,just glad of the well being l derive from very limited use,and that my other half sees when l can benefit from such.

On a side note,l have never been a cigarette smoker,and have the occasional drink at weddings etc, and am quite happy to be a medication free mger,so l suppose people could find my stance a little odd .
deleted_user
deleted_user

I would never attempt the use of something grown for profit with no control over its being safe for human consumsion. The healthness of street drugs sure can not certifed.
Having said that. I have enjoyed one drink of brandy in the evening for years I ask my dr and she said that was ok.
I am sure that it has no medical value but I can't give up everything.
Will
deleted_user
deleted_user

Well Will,
I have aunt who is prescribed brandy by her doctor as a cardiac tonic. The UK NHS is wonderful, you can get your booze free. However, this provided problems for my aunt since her chapel does not allow its members alcohol. Her minister, in a moment of rare common sense, told her it did not count since she was having it for medical reasons and didn't like it anyway.
Gwyn
cgreens
cgreens

That's funny Gwyn!

LOL