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Effect of Mestinon in those without MG?
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TOPIC: Effect of Mestinon in those without MG?

Effect of Mestinon in those without MG? 25 Jul 2012 10:04 #1735074

  • Coco
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I'm just wondering what effect Mestinon has on people without MG? My docs can't settle on a diagnosis and the muscle weakness (especially respiratory and ptosis) is becoming distressing, so I'm considering trying the drug to see if there is any improvement.

Is it dangerous for those without MG to take Mestinon? Does it have any effect at all? Also, for those with MG, how long does it take to see a difference?

Thank you!

Re: Effect of Mestinon in those without MG? 25 Jul 2012 10:18 #1735076

  • jantoo
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Oddly enough Coco this was a question I asked a few years back. I have generalised m.g. My poor sister has M.E and as I thought her symptoms were so similar to mine asked what would happen if she took one. I think Levitas answered or someone did and said they give to soldiers in case of nerve gas attacks? But if you take mestinon where would you get it from?

Mestinon on me takes about 20/25 mins to take effect and stays in the body for about 3 hours approx...depending i suppose on body weight...i am fat! lol

Hope they sort you out quickly, trouble is it is very difficult to diagnose with some people...in retrospect i was luck in asmuch as the blood tests revealed it.

jantoo

Re: Effect of Mestinon in those without MG? 25 Jul 2012 15:21 #1735086

  • Coco
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Wow, that's interesting about the soldiers, Jantoo! Did it work for your sister?

I would ask my new neuro (yet to be found) to prescribe a short course/a dose(?) I guess... Is it a particularly harmful drug, i.e. is there a reason that they could be very reluctant to do that?

I suppose my main question is... if I take Mestinon and the drug improves my situation noticeably, is that a strong indicator that the culprit of my symptoms is MG, or can it improve muscle weakness in other conditions?

Many thanks for your help
Last Edit: 25 Jul 2012 15:22 by Coco.

Re: Effect of Mestinon in those without MG? 25 Jul 2012 15:48 #1735088

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They do sometimes prescribe Mestinon as a diagnostic tool, Coco.

I am a case in point - I don't have any known mg related antibodies in my blood and no other test was positive for omg for over 4 years (until my very recent repeat SFEMG) yet I had/have all the signs and symptoms of omg - So my neuro gave me Mestinon to see if it would work to improve my symptoms. It only lifted my droopy eyelids a little bit and did nothing for my double vision, which is not uncommon in omg, i.e. mestinon doesn't always improve things much in those whose myasthenia is seemingly confined to their eyes.

I have gathered that Mestinon can be a much better diagnostic tool in generalized myasthenia, although many myasthenics with generalized symptoms don't see much improvement in their symptoms with mestinon alone; they have to take immuno-suppressants as well as mestinon or instead of it, but some people with GMG just take mestinon on its own because it works well for them. It depends on the individual.
Last Edit: 25 Jul 2012 15:57 by dusty.

Re: Effect of Mestinon in those without MG? 25 Jul 2012 16:57 #1735091

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Just a thought

If a person only has occular MG and not generalised MG, surely it wouldn't be suitable for OMG if it would adversly affect the muscles that weren't affected by MG....if you know what I mean

Dusty...I am curious to know does it strengthen all your other muscles when you take it?

All my muscles are strengthened when I take it i.e legs arms etc.

As I said, just a thought

Andrea

Re: Effect of Mestinon in those without MG? 25 Jul 2012 17:15 #1735092

  • Coco
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Dusty - re generalised Myasthenia - if Mestinon were to improve my breathing even a touch I would be delighted. Disappointed to hear that immunosupressants are a common medication for GMG though, as I had a bad experience with Prednisone on a tiny dose (extreme, agonising pressure behind the eyes triggering a mother of a migraine). Maybe others will be different...

Just out of interest - how long do the immuno-suppressants usually take to work? Hours, or days for a cumulative effect?

Bobbjo - very good question, would be interested to hear the answer to that....

Re: Effect of Mestinon in those without MG? 25 Jul 2012 20:10 #1735098

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Hi Andrea

If a person only has occular MG and not generalised MG, surely it wouldn't be suitable for OMG if it would adversly affect the muscles that weren't affected by MG....if you know what I mean


I think you're right, especially when you think that OMG-ers often end up taking fairly large doses of Mestinon for it to make any difference at all to their symptoms, i.e. when they aren't using immuno-suppression. Under my neuro's instructions I gradually went up to 90mg five times a day...

All I noticed on that dose was that some of my leg muscles twitched, but I didn't notice any actual improvement in my muscles in any part of my body, i.e. pain or strength-wise - except for the lifting of my ptosis just a tiny bit. (But then my muscles probably aren't what can be considered to be 'normal' what with my fibromyalgia, although the pain in them could, of course, be purely due to pain amplification in the spinal fluid and in the brain.)

However, that said, in this current heatwave I am noticing that my legs feel wobbly and I generally have a feeling of weakness - a feeling that I normally get only after I've had my little daily walk and didn't seem to improve with mestinon before. I am going to take some of my mestinon tomorrow in the height of the heat when I get the 'wobbles' without exercise to see if this feeling improves - Will let you know what happens.

Dusty
Last Edit: 25 Jul 2012 20:16 by dusty.

Re: Effect of Mestinon in those without MG? 25 Jul 2012 21:31 #1735099

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Coco wrote:

...

Just out of interest - how long do the immuno-suppressants usually take to work? Hours, or days for a cumulative effect?

Bobbjo - very good question, would be interested to hear the answer to that....


Immuno-suppressants (such as Prednisolone) can take several months to start working. Pred. certainly did in my case - I initially had OMG and Mestinon had little or no effect on my double vision. I was prescribed Prednisolone which took some 3 months or so to take effect - initially it made things a lot worse, but one morning I woke up without double vision and it has never come back.

Unfortunately I had a big 'wobble' at the end of last year and started to get more generalised symptoms - the Mestinon helped relieve the tiredness in my arms, legs and mouth and a big increase in Pred has (eventually) eased most of the generalised symptoms, but I'm still not quite back to what passed as normal when a relatively low dosage of both Pred and Mestinon kept things pretty much in hand.

Rob
--

Rob
Last Edit: 25 Jul 2012 21:33 by robrait. Reason: Add 'sig'

Re: Effect of Mestinon in those without MG? 25 Jul 2012 22:33 #1735100

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Coco - This thread on another forum may interest you as they discuss the same topic, i.e. the effect of mestinon on those without MG: neurotalk.psychcentral.com/thread128983.html

Robrait has explained about steroids (prednisolone) and how long they can take to work - Can add that other types of immuno-suppressants can take a while too, e.g. azathioprine can take up to and in some cases over a year, i.e. if it kicks in at all; with some people it doesn't. If it doesn't there are other immuno-suppressants that can be possibly tried, e.g. Cellcept or methotrexate. I'm not sure how long the latter two can take to 'kick in' - I'll leave others to comment on that, except to say that with my father's late onset rheumatoid arthritis he takes methotrexate and that started to work for him after about 6 weeks but took about 6 months in total to show a profound response. With MG it may be a different time scale and, of course, responses vary in individuals.
Last Edit: 25 Jul 2012 22:35 by dusty.

Re: Effect of Mestinon in those without MG? 26 Jul 2012 03:07 #1735101

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I am into my 5th month of having methotrexate and the improvement in strength [if any is very gradual] and still volatile and having to go up and down on the prednisolone.

I try to look back to before I started it and then can see an improvement in strength, but still struggling.....but then I had my weakness for many many years before having any treatment, so not sure what my normal strength is or would be.

I had cellcept before, which didn't do the trick, followed by Azathioprine, which seemd to help quicker but had to stop because of very raised liver enzymnes.

Andrea

Re: Effect of Mestinon in those without MG? 26 Jul 2012 13:25 #1735108

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Two comments:

1. Re this topic.
Mestinon does not make our muscles any stronger.
In MG it acts only at the nerve/muscle junction, not on the muscle per se.
Its action is to inhibit acetylcholine esterase allowing the acetylcholine released to hang around a little longer in the hope of finding receptors not blocked by antibodies.
In a person who hasn’t got MG then there are no antibodies therefore no blocked receptors therefore no “apparent” gain in muscle strength.
However take too much and it will have a cholinergic effect causing weakness similar to myasthenic weakness but for exactly the opposite reason – nerve/muscle junctions become flooded with acetycholine that is not cleared away by the esterase.
And then, of course, there are the side effects, both nicotinic (such as cramps and twitching) and muscarinic (stomach cramps, diarria etc.) with which we will all be familiar.

2. Andrea (Bobbyjo).
You talk about being “ still volatile and having to go up and down on the prednisolone.”
Are you trying to wean off prednisolone? Or are you varying the pred. because of your perception that you need to do this in an attempt to get stable. I’m confused.
If the latter it might be that changing the pred. dose is the CAUSE of the instability.
I wouldn’t experiment with frequent changes in prednisolone if I were you and only vary the dose as directed by your neurologist.
It’s too slow acting to be making frequent changes.

Re: Effect of Mestinon in those without MG? 26 Jul 2012 17:02 #1735109

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Hi Levitas

Thanks for your advice and concern. Perhaps what I said is a little confusing however,I have got another very rare autoimmune disease which has progressed neurologicaly and I now have high inflammation in the brain stem and spinal cord.

My medication for this of Methotrexate and Prednisolone just happens to be the same as it would be for MG.

Whilst the inflammation continues it is causing me many difficult neurological symptoms and naturally this also has a knock on affect with the Myasthenia.....therefore getting the inflammation down is priority.

I am not experimenting with frequent changes, the changes are being administered by my Neurologist and Rheumatologist who both work on my condition[s] together, from 2 different hospitals.

I have blood tests every month to check the ESR and CRP, liver, FBC etc and this is monitored through the hospital pharmacy and relayed to my Neurologist, in case any changes are required.

I hope this now makes sense to you
Andrea

Re: Effect of Mestinon in those without MG? 26 Jul 2012 18:17 #1735110

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Andrea,
Many thanks for taking the trouble to explain.
I see now that my concerns were without foundation and relieved that you are not experimenting with the pred. dose without supervision.
With the old Forum I could have clicked on your profile and viewed whatever you had chosen to display. With this present Forum it's not so easy, so sometimes I miss what has been posted earlier.
Best wishes,
Levitas

Re: Effect of Mestinon in those without MG? 29 Jul 2012 09:25 #1735138

  • Chakra5
Bobbyjo wrote:

Dusty...I am curious to know does it strengthen all your other muscles when you take it?
Andrea


Hope you don´t mind I´m not Dusty! Have only been on Mestinon a couple of weeks. In my case (generalized and mild ocular symptoms) only the muscle areas that have been affected by the disease* appear to respond to Mestinon. The other muscles seem oblivious to it ever having passed by them! (In other words my ´good´calf muscles do not feel either stronger or weaker with varying doses of Mestinon)
Chakra5

* myasthenic symptoms
Last Edit: 29 Jul 2012 11:16 by . Reason: extra info

Re: Effect of Mestinon in those without MG? 29 Jul 2012 10:27 #1735140

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I am wondering whether in a person without GMG the flooding with acetylcholine that's not cleared away by the esterase could potentially cause damage at the nerve/muscle junctions in the long-term. (I am thinking of people like me who take Mestinon for their sero-negative and MuSK negative OMG who don't have GMG.) I have done a bit of a search on this and can't find anything on what long term effects there are, if any, of Mestinon on healthy nerve/muscle junctions to include the receptors and noted that an American support group website also concluded that it is not known what, if any, the long term effects are...

I am aware that there is a school of thought that, at least in some cases of OMG, other muscles in the body are actually myasthenic too, but the patient simply doesn't notice that they are because there isn't profound weakness in them, but Mestinon would, nevertheless, potentially be improving the functioning of those muscles too...

However, another school of thought is that in some people with just ocular symptoms (who are sero-negative and MuSK negative) other type(s) of as yet undiscovered/unidentified anti-bodies purely attack the ocular muscles, so other muscles in the body may be unaffected and are therefore probably normal in their functioning and don't need the Mestinon at all.
Last Edit: 29 Jul 2012 10:36 by dusty.

Re: Effect of Mestinon in those without MG? 29 Jul 2012 11:30 #1735141

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dusty wrote:
I am wondering whether in a person without GMG the flooding with acetylcholine that's not cleared away by the esterase could potentially cause damage at the nerve/muscle junctions in the long-term.


Dusty,
I'm no expert but in my (limited) understanding, so long as you don't overdose with Mestinon, its effect is a slight decrease in AChE for a VERY brief period. The whole process ACh activating the receptor and the excess being mopped up by AChE is over in nanoseconds.
We once had quite a discussion on whether MG anti-ACh Abs caused permanent damage to the NMJ.
You are now asking if too much ACh would have this effect. I don't know. Does anybody?

Re: Effect of Mestinon in those without MG? 29 Jul 2012 14:54 #1735144

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We once had quite a discussion on whether MG anti-ACh Abs caused permanent damage to the NMJ.


Further to that, I was very pleasantly surprised to read that Prof Vincent doesn't believe that the receptors get permanently damaged or destroyed, i.e. when she did that live web chat with many of us on the previous MGA UK forum. (There wasn't any time to ask her to elaborate on this and I haven't seen any papers authored by her about it, so would obviously like to hear how/why she came to her conclusions; anyway, it was great to hear such good news.)

You are now asking if too much ACh would have this effect. I don't know. Does anybody?


Probably no one does know. But I think it's an interesting/legitimate - albeit theoretical - question in exploring this topic.

What got me wondering about it was that some sero-negative and MuSK negative OMG-ers go on to develop sero-negative and MuSK negative GMG and whether in such cases treatment with Mestinon could be responsible for damaging the NMJ, causing (at least in part) the 'deterioration' from ocular only to overt generalization - although I do realize that there are other possible (and known) reasons for this happening... Pondered too that this could also be a reason (i.e. possible Mestinon damage) for some people's GMG (particularly sero-negative and MuSK negative GMG) being refractory - or somewhat refractory - to treatment by immuno-suppression.

...Just my musings on this topic - am not expecting a definitive answer to them.

(Please no one take it that I am suggesting that anyone give up on their Mestinon unless instructed to do so by their treating neuro - I still take it when my ptosis is bad.)
Last Edit: 29 Jul 2012 18:40 by dusty.

Re: Effect of Mestinon in those without MG? 09 Aug 2012 00:30 #1735218

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Not sure if anyone mentioned this, but when you are in the process of getting diagnosed your Neurologist should perform a Tensilon Test which is a dummy drug that only last for a few moments. If you have MG it relieves all symptoms for a brief moment and that would indicate that one, you have MG and two, you should be taking Mestinon.

I hope this helps.

Also, everyone is different and MG is a case by case disease. Sometimes doing too much internet research is not good. Find yourself a good neurologist and start your treatment. Wishing you the best

Re: Effect of Mestinon in those without MG? 09 Aug 2012 08:00 #1735220

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Well my neurologist does not believe I have MG .I have all the symptoms--I presented today with eyelid half closed and leg weakness.The breathing tests show weak diaphram muscles.Against his better judgement the neuro has decided to give me Prednisolone.2 years of the symptoms every test normal I have had enough.
Lorraine
PS I take Mestinon 3 hourly.

Re: Effect of Mestinon in those without MG? 09 Aug 2012 10:34 #1735221

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Poor Lojos I saw my Neuro last week, could barely get up out of the chair, had a extreme weakness of upper body and the poor man had to haul me out of the chair, and I am a large lady, despite him being a slender guy he obviously had muscles! During the lengthy consultation I was aware of my face freezing and he pointed out that my mouth was dropping again. He has booked me again for additional ivig.

Please God you may get sorted out very soon....

jantoo x

Re: Effect of Mestinon in those without MG? 11 Aug 2012 14:04 #1735244

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Jantoo and Lojos, I am so sorry to hear that. It is such a bad feeling to feel your body failing you. I pray to god everyday that they find a cure for us. But we cant give up and we have to be thankful everyday. There are far worse diseases out there and at least ours sometimes gives us a moment of relief even if for a day.

Re: Effect of Mestinon in those without MG? 24 Aug 2012 07:39 #1735299

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I hope it need to be sorted out earlier.
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