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| One dose, taken 4 times a day |
These are called MESTINON, & if you have been reading my blog you will see that I speak of them quite often. Me taking one was part of my original diagnosis; as my doctor told me if it helped me to swallow & talk properly then that would help prove it was Myasthenia Gravis (the blood tests they took had to be sent away to be tested in order to prove I had MG & it would take a couple of weeks to get results). Back then they had to crush it with a little water, & it took me 3 hours to swallow 5ml. But there was a marked improvement & I managed to eat my first dinner in well over a month.
Now I can feel my body telling me when it is time to take it, & if I miss a dose or take one much later than I should; I can definitely feel it. Usually my talking will be the first thing to go down & I will start feeling very weak. My usual times are 6am, 11am, 5pm & bedtime. My husband has got so used to me taking my meds that if I am slurring a bit more than usual, he will ask if I have taken my last dose at the right time! Sometimes it frustrates me as I get very embarrassed when people can notice my bad talking, but I know it comes from a place of love & it is only because he knows me so well that he even notices there is something wrong.
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| One months supply of Mestinon |
The tablets come in 60mg (the orange sugar-coated one pictured) & 10mg (little white ones) that dissolve the moment they hit your tongue! I am so used to taking them now, as I have had to take them right since day one. The dose has varied throughout different times of my life - I think my lowest dose was 60mg 3 times a day & I am on the highest dose currently. The thing about this medicine is it is an exact science - too much or too little causes the same effect. Often my doctor & I will try lowering the medicine to see if that will make me better, only to realise I actually need to take more in order to see me through my bad patch.
I carry my little pill jar with me everywhere I go. I have spare tucked away in my medicine drawer in case the pharmacy doesn't have stock when I go to fill my script. And yes, that does happen. Because there are so few people that suffer from Myasthenia Gravis (especially in Pietermaritzburg - my hometown), the pharmacies do not keep a lot of stock on hand. They have to do a special order in for their scripts they know they have & the one month I went there to get some & there was none! I had no medicine for 3 days & ended up having to stay at home for those days as I could not even get out of bed. Now they are a lot better at ensuring they have stock, as my husband gave them hell!
I cannot ever make last minute plans to stay with a friend as I need to have my medicine unless I want to suffer the consequences. I usually only carry enough tablets for that day so I can see at a glance if I have missed a dose (sometimes when things get a little hectic at work this can happen). I don't want to carry too much medicine around as well just in case my bag gets stolen... I missed a dose this last Sunday accidentally & I felt awful. I thought maybe I had been pushing too hard & was battling to swallow, talk, walk up the stairs at my mum's house & even my smile was all droopy - then when I went to take my 5pm dose I saw there were still 3 doses left in my container! What a banana... But it reminded me how vital it is to take my medicine timeously & that I cannot survive without it.
So how does Mestinon work anyways? Mestinon is a pretty clever little pill... It helps to prevent the breakdown of the acetylcholine in the body, so that then your muscles can function optimally. I would hate to know what happened before it was invented, & perhaps this is why there were so many deaths recorded in the early years.
Some of the side effects include nausea, vomiting, diarrhea, abdominal cramps, increased saliva/mucus, decreased pupil size, increased urination, & increased sweating. And yes, I have had them all. If I bend over to kiss my husband goodnight, I often drool on him too (sorry babe - I don't do it on purpose I promise)! Nausea, diarrhea & cramps are a daily occurrence; but I would take these any day over my muscles weakness. You have to have the bad to appreciate the good - to quote a saying I found the other day "you can't have a rainbow without a little rain".
For once though I would love to see side effects such as "warning: may cause extreme sexiness over prolonged use of this medication", or even "there are no side effects, this will just make you all better!".
They have now brought it out in a syrup form which I think is amazing! I am not sure if we have it in SA, but it is a brilliant complex. When I am battling to swallow it can take me a good while to actually get the tablets down, whereas if it was in syrup form it would make things a lot easier as it could go down without choking or the tablets getting stuck.
Every week I will try write a blog on a different form of treatment - I have written at length about Plasmapheresis whilst I was having it, & will try blog about different things I have experienced. Not all have helped, but some have literally saved my life.
Happy new year to all of you! May 2015 be your year of happiness, love, good health & miracles. Sending so much love always, & thank you for reading this blog. I really hope it helps give an insight into living with this disease!
