I only use timespan at night because of the cost. Evenwith my drug plan, the cost is 129$ per month for timespan.

There is no generic of Mestinon Timespan. That is part of your problem.

I once tried to get regular mestinon instead of generic because the name brand mestinon timespan was so effective for me I figured name brand mestinon would be as well. I think they wanted $90 or more for the regular mestinon, and that would be 9X or more what I pay for the generic, so I did not purchase the special order.

I have responded to your message just now about your questions/concerns on this.

Hope it helps.

TJ

I forgot to mention that I also save some money if Mail ordered.

CarolinaMoon many manufacturers offer cost saving programs. Not sure though if Mestinon Timespan has a similar plan, but it may be worth checking into.

I take Timespan without problems but recently I find I need to take my first dose of 60mg Mestinon soon after waking.

Best of luck.
Larissa

I too tried Timespan and paid a lot more for it--thinking it would be better at night as it would last all night and I wouldn't wake up so weak each morning. However, it didn't seem to work very smoothly--got too much at times and lots of extra leg cramping --seemed somewhat uneven in the release. I quit using them, preferring the predictable onset and offset of the 60 mg generic pyridostigmine.

I ended up splitting my 60s sometimes so I could take 90 at a time as 1 pill was too little and 2 too much. There are some inexpensive pill cutters that work fine. I also sometimes took a half pill every hour rather than one or two at a time at bigger intervals. It is a nuisance, but does work

At night, I have the added advantage of being an older man--and nature provides us with automatic wakeup calls at least once or twice each night at regular intervals that are convenient to take a pill if needed ;-)

I take regular 60 mg mestinon throughout the day and timespan at night. I have let myself run out of mestinon timespan and had to set alarm to wake up during the night. I could definitely tell that I felt worse the next morning with the 60 mg than timespan.

My copay is over 10x as much for timespan than regular but worth it.

Olliepop

All I can add is what I was told by my doctor...the general Neuro that I started with had put me on the Timespan...once my dose was right...then I started seeing an expert doctor who only deals with MG and is in the city and is in the latest research for MG and all that....He said "we don't use that anymore" so he took me off the timespan. The doctors at Mayo also agreed that the timespan was not a good choice. Now, we all know that MG is different for everyone, and maybe the timespan would work....but for me and my medical team (UIC, Northwestern, Mayo Clinic and a Doctor from Italy) they all agree that Timespan should not be taken. My "small town" neurologist said..."Okay, I don't deal with MG very often so, I will let the experts take over...."

I am not saying that it doesn't work....I am just relaying what my doctors have put in place for me....and right now, we all are trying to find the best plan for the best chance of low/no symptoms, low/no side effects...etc.

Just my two cents...
Darci from Chicago

Oh and my insurance won't cover the REGULAR Mestinon...because my doctors do not want me on Generic....so I pay $300 a month for the regular Mestinon....Now, with my insurance plan, since there is no generic for the Timespan....I only would pay $10 a month....but the doctors don't want me on that.

Darci, that is so interesting what your doctors have said about Timespan.. It works well for me, not sure why-- maybe because I'm at rest, and I don't have to set the alarm every 4 hours.. We don't have MG experts in Florida (that I know of).. Knowing that everyone is different, can you share what type of meds they like to recommend? I have a new (my second neuro ) appt next week, and any current info/research would be so helpful.. Thanks!

My neuromuscular specialists also do not like the Timespan, although I did try it. I found it true that it released erratically at night and I woke up with horrible leg cramps Iike Russ. i remember Curt saying it was just the regular wrapped in parrafin and he made his own at one time!

I certainly did not find it released slowly. i think if you take the regular Mestinon on a full stomach, you will get a much slower release during the day. But I seem to get only about 3 1/2 hours that way with 60 mg, can get a bit more if the dose is increased. b.

Based on my experience, Timespan should basically only be prescribed use for people at night that have trouble swallowing in the morning, and only until treatment starts to help this type of situation. I have taken it morning, afternoon and night and I have taken two pills at once before also(wow). It was effective most of the time for me regardless. I used to take soooooo much mestinon. Basically more than I have seen reported by anyone. I've drastically reduced my intake over the last year. I consider myself very knowledgeable about mestinon.

That being said, mestinon and timespan is very effective for me and serves me well if/when I choose to use it. I rarely use it anymore and have vast amounts of it sitting in my cupboard.

As said, timespan can have an erratic release, and should not be taken on an empty stomach in my opinion. It can vary from time to time. Some of it has to do with how much air it is exposed to prior to taking it. That carnuba wax or whatever and the pill itself gets eaten up easily by air contact over time and could affect it release some.

Also in my opinion what is going on with Darci is not necessary and is not fair or completely valid.

I also feel that whether or not you take generic or regular mestinon with food depends on how fast you need it to act and on ones condition. If you do take it after you eat, it will be better on your stomach and bowel movements. It truly is something that each of us must find that "sweet spot" for to figure out how it best serves us, and that includes the use of timespan. I truly cannot believe how much mestinon I took at one point. I did it to avoid prednisone and that was my goal.

cgreens, not sure what is not necessary,fair or valid with my response...but okay. I just was reporting what my doctors feel and have told me. They said they see better resposes to regular mestinon taken more often because the timespan can be erratic in the dosage release. They suggest the name brand regular Mestinon due to the FDA not being as strict with mg amounts in generic drugs. The doctors told me that for name brand there is a 10% range and with generic it is a 20% range....this is what I found online... "The FDA requires that any approved drug be effective within a 20% range of the original patented or brand name drug. This means that the effectiveness may be 20% greater or 20% less effective than the brand name so that two generic drugs could contain as much as a 40% difference from each other. Therefore, a drug may be legally chemically equivalent but not at the same time clinically equivalent."...also "the active ingredients - the things that make the brand-name drug work in the first place - are also found in the generic version. What might be different are the generic drug's inactive ingredients - things that might affect how quickly a drug is released".

Icrad,
It isn't your response per se. You are reciting what your doctors are telling you. That's fine.
I agree in that the name brand mestinon would be stronger. I wish I could have it for the price I pay for generic. As I stated, I wanted to use it also, but it was 9X more expensive. That you can testify to. However, since the generic is effective and works fine for anyone that reacts well to mestinon, I don't see the validation in you having to pay so much to get the help from the name brand. It isn't cost effective. You mention the inactive ingredients affecting release time. If so, it isn't much to validate you having to pay the difference. Also, this would vary from manufacturer.

For your group of doctors to say we don't use timespan anymore, is not valid. Mestinon Timespan is clearly still used...I mentioned my opinion as to when I believe it is most beneficial(for sleeping). It certainly was in my case. I had to have it to sleep to awake and be able to swallow. If you can't get that morning mestinon down sometimes, you could end up in the hospital.. Many people will testify to the same.

Just an opinion. Nothing against you.

Please understand that. I appreciate what you bring to this group. It is always good to hear different perspectives. Thank you for being here with us.

Best wishes for peace,
TJ

In addition:
For what it is worth, my neuro is not fond of Mestinon Timespan at all. However, she does believe it can be helpful for the reason I mention. If I took one now, during the day, I would feel like I was in remission because it can be so strong and that can be due to its erratic release. I may feel the same if I had regular mestinon also. I don't know, I have never had it. The generic is plenty effective.

She didn't like it when I took Timespan at other times, but since it was effective and I was happy, she didn't stir the pot.

Darci and cgreens- so interesting..this is more discussion than we would ever get from our dr's!
One thought I had on timespan-- I have a very slow metabolism, so it takes awhile to get in my system, but then I think it stays there. With the 90mg I take every 4 hrs during the day, well, again with a slow metabolism, it doesn't seem as effective. It takes an hour to work, but doesn't last as long.. Maybe be ause i am more active? Have either of you done 120 to mix it up during the day, say in the evening,when my muscles are most tired? Really value your opinions.
(I'm Carole, by the way)..