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  • Mestinon 60 mg verses Mestinon XR 180 mg

    Posted by Amy on April 24, 2022 at 6:48 pm

    Hello, i am considering asking my neurologist about trying Mestinon XR during the night.  I recently was diagnosed with sleep apnea. Currently I am taking 90 mg of Mestinon 4x daily.  I would love to here from anyone who has experience with Mestinon XR.

    Norm replied 1 year, 8 months ago 19 Members · 39 Replies
  • 39 Replies
  • MikeS

    Member
    April 27, 2022 at 7:48 pm

    I take it (the 180mg XR).  I take it at the same time before bed each evening.  That’s all the mestinon I’m taking right now.  I also take 10 MG prednisone daily in the a.m.  It does give me some leg muscle cramping at night, some diarrhea in the morning and stomach cramps at any time during the day.

    • Diana L Burgess

      Member
      September 29, 2022 at 10:19 pm

      I have been on mestinon 60 mg for over a year now. I take it 3 times a day.i really don’t know if my Dr is going to make it go higher or not. Im doing ok right now.

    • Diana L Burgess

      Member
      September 29, 2022 at 10:19 pm

      I have been on mestinon 60 mg for over a year now. I take it 3 times a day.i really don’t know if my Dr is going to make it go higher or not. Im doing ok right now.

    • Diana L Burgess

      Member
      September 29, 2022 at 10:19 pm

      I have been on mestinon 60 mg for over a year now. I take it 3 times a day.i really don’t know if my Dr is going to make it go higher or not. Im doing ok right now.

    • Diana L Burgess

      Member
      September 29, 2022 at 10:19 pm

      I have been on mestinon 60 mg for over a year now. I take it 3 times a day.i really don’t know if my Dr is going to make it go higher or not. Im doing ok right now.

    • Diana L Burgess

      Member
      September 29, 2022 at 10:19 pm

      I have been on mestinon 60 mg for over a year now. I take it 3 times a day.i really don’t know if my Dr is going to make it go higher or not. Im doing ok right now.

    • Diana L Burgess

      Member
      September 29, 2022 at 10:19 pm

      I have been on mestinon 60 mg for over a year now. I take it 3 times a day.i really don’t know if my Dr is going to make it go higher or not. Im doing ok right now.

    • Diana L Burgess

      Member
      September 29, 2022 at 10:19 pm

      I have been on mestinon 60 mg for over a year now. I take it 3 times a day.i really don’t know if my Dr is going to make it go higher or not. Im doing ok right now.

  • John Gore

    Member
    April 27, 2022 at 7:57 pm

    Hi Amy,
    I too am on 90mg x 4. I was having sleep problems so started the XR, after a couple days started getting sick so stopped taking,  immediately felt better once the XR was out of my system. No problems with the 90mg.  Hope it works for you.

    John

  • Jack VanWey

    Member
    April 27, 2022 at 8:04 pm

    I am currently taking 60mg 4times a day but was taking a great deal more during my last major episode, that was when my Doctor introduced me to the 180 extended release. Because I am very active and regularly am away from home, I now use it when I am competing in Archery or going to be at a location where it would be difficult to stop what I am doing in order to take my medication. This works great for me and allows me to regulate my daily dosage.

  • Barbara A.

    Member
    April 27, 2022 at 8:11 pm

    I was originally taking 60mg of Mestinon 3 times a day. The diarrhea was ridiculous so my doctor switched me to 180 ER and things calmed down. I take it late afternoon. It works for 24 hours, and I can take an additional 30 or 60 mg in the morning if needed. Can’t wait for the nasal spray to come out.

  • John Shanks

    Member
    April 27, 2022 at 8:18 pm

    I take 60mg three tines/day and 180 XR at night. Was waking up with breathing issies before. Feeling better now I get more sleep. I hope you do as well.

    John

  • David Davidson

    Member
    April 27, 2022 at 8:54 pm

    I was taking 3  60 mg Mestinon 4 times daily. Then I switched to the  4 180mg SR Mestinon and it seem to work better. I get 180mg SR out of Canada because it is lots cheaper than in the states. My MG has backed off a lot since I started taking Soliris so I only take 1  180mg SR now and 2.5 mg of Prednisone. If you need to know where I get the 180 SR let me know.

    Hope this helps

    Dave

    • Amy

      Member
      April 27, 2022 at 11:17 pm

      Thanks Dave,  I currently am taking 360 mg daily.  90 mg 4 times a day, i am pretty sure I need to take it while I sleep at night because of my breathing.  To avoid having to get up during the night I want to try the XR tablet. My insurance does cover it but, it is a top tier drug and will cost me about $2 a pill.  Which isn’t too bad.  I have pretty decent retiree’s insurance through my former employer.  I know a couple of folks that go to Mexico for their insulin.

  • Michael Morris

    Member
    April 28, 2022 at 12:30 am

    Two things.  Mestinon cream didn’t work for me. And sleep problems I use bipap machine and it help a lot. Easy to use and adapt to

  • Norm

    Member
    April 29, 2022 at 7:34 pm

    Hi Amy,
    I just texted my neurologist about extended-release pyridostigmine (Mestinon). Waiting for a reply. I’ve been taking 150 or 180 mg every day, but have been having difficulty swallowing late in the day, and wake up late and groggy. I don’t know how well or poorly I breathe while asleep.

    • Alan Bridle

      Member
      April 29, 2022 at 9:57 pm

      I did not realize how badly I was doing with breathing at night until I got my own pulse oximeter.  My oxygen saturation was dipping below 90% at times.  Taking 6o mg regular mestinon at bed time has helped me with this and I now sleep better and longer – which helps me cope in other ways.  Checking O2 sat may be worth it for anyone with MG just to know where we are on the problem scale.

      • Norm

        Member
        April 29, 2022 at 10:04 pm

        Thanks Alan. I will get a pulse oximeter.

    • Amy

      Member
      May 1, 2022 at 3:11 am

      Hi Norm & Alan,  I was surprised by my sleep apnea test, particularily because I rarely snore.  I have had breathing problems for a couple of years, but only when I exercise or over-exert myself.  I saw a pulmonologist who had me walk the halls with an O2 meter on my finger.  My Oxygen would drop into the 80’s, the alarm would go off, but once I sat and rested my O2 would go back up to 97% or higher.  My cardiologist and the pulmonologist both were perplexed.  Then last summer my fatigue got much worse. I had started Cellcept and thought that might be causing the tiredness.  I stopped the cellcept, but still was extremely tired.  My neurologist ordered a home sleep study.  I am waiting to go into the sleep clinic to try both a cpap and a bi-pap, meanwhile I am taking 60 mg of Mestinon at Midnight and 4 am., then every 4 hours during the day from 8 am – 8 pm. i was taking 90 mg every 4 hours during the day only, nothing at night.  I hate getting up during the night, after only a week my body just automatically knows it is time to take the Mestinon.  I am also starting to feel a little more rested.  I was hoping I could maybe resolve this issue with medication instead of a machine and get the XR so I wouldn’t have to get up during the night.  I am apprehensive about wearing a mask. Amy

      ered pp

       

      and the

  • David Davidson

    Member
    April 29, 2022 at 11:27 pm

    Good morning Amy, You can buy the 180mg SR from Canada drugs online ie the website for $1.54per tablet. Its the brand name product Mestinon. Keep up the fight(for your health)😊

    • Alan Bridle

      Member
      May 1, 2022 at 3:29 pm

      Hi Amy

      I hesitate to comment because your O2 pattern sounds very different than mine,   Brisk walking raises my heart rate and my O2 sat now I am five months out from my crisis and ICU stay.   I often hit 100% sat doing moderate exercise.    I get breathless when my heart rate gets high but my O2 only dips a little.  It was dipping into the 80’s without any exertion shortly before I went into all out myasthenia crisis  (911 call to rescue squad, ambulance to ER followed by intubation and three weeks in ICU, two of those on a ventilator) .

      I can only say to take this O2 deficit very seriously until your docs sort out the cause and maybe get your own pulse oximeter so you can be aware of any changes in your O2 pattern while you are doing your normal routine(s).

      I also had bad insomnia just before my crisis. I would wake up after just a couple of hours then not get back to sleep.   A sleep study was suggested but I went into myasthenia crisis before it happened.   In the ICU they gave me Trazodone and Seroquil to help me sleep.  I have continued with that, now sleep normally and can get back to sleep if I do wake up or a bathroom break.   I will check my own O2 if that happens.  It’s never below 93% now and  I never feel breathless when I wake up.  This is on 4 x 60 mg regular Mestinon  usually around  8 am, 12 pm, 4 pm and midnight.

      I hope you will find something that works for you as getting good sleep again helps enormously.

      Good luck and best wishes

      Alan

  • Craig Moore

    Member
    April 30, 2022 at 8:55 pm

    I’m a Type II diabetic and was diagnosed with MG in December 2017.  The following medicine changes were trial and error over a total period of four years. I was taking 60mg of Mestinon 4x a day and the Mestinon XR at bedtime.  After meeting with my new Neurologist, we reduced the Mestinon to 30mg 3x a day and taking the Mestinon XR when I wakeup with my other medications.  We also reduced my Cellcept dosage from 1500mg 2x a day to 1000mg 2x a day.   These changes stopped the daily <span class=”ILfuVd”><span class=”hgKElc”>diarrhea</span></span> and I’m able to more active during the day.

  • Norm

    Member
    April 30, 2022 at 9:15 pm

    I will start the pyridostigmine ER on Monday or Tuesday.

    Apparently I am charged the same, after insurance, for 30 or for 60 pills! If the doctor prescribes 2/day, I get 60 for X dollars; if he/she prescribes 1/day, I get 30 for the same X dollars.

    Have any of you encountered the same kind of billing?

    • David Davidson

      Member
      May 5, 2022 at 12:51 pm

      I pay $1.54 per pill for 180 mg SR Mestinon (brand name) at Canada drugs online ( name of website)  Hope tis helps Dave

  • rene-mathieu

    Member
    May 4, 2022 at 2:39 pm

    Amo,

    Good morning I hope this note reaches you well.

    Please refer to the following article, I hope it helps you to understand benefits from Mestinon 180 ‘g

    https://dailymed.nlm.nih.gov/dailymed/fda/fdaDrugXsl.cfm?setid=013a6524-6eb9-4dbf-b29c-9aec2f40d2d0&type=display

  • rene-mathieu

    Member
    May 4, 2022 at 2:40 pm

    Ami,

    Good morning I hope this note reaches you well.

    Please refer to the following article, I hope it helps you to understand benefits from Mestinon 180 mg

    https://dailymed.nlm.nih.gov/dailymed/fda/fdaDrugXsl.cfm?setid=013a6524-6eb9-4dbf-b29c-9aec2f40d2d0&type=display

  • Philip Callas

    Member
    May 5, 2022 at 12:13 am

    Mestinon gave unbearable leg cramps when I used it overnight

  • Barbara E.

    Member
    May 6, 2022 at 7:39 pm

    When my doctor switched me from Pyridostigmine 60mg to the extended release 180mg formula, I was thrilled at the idea of only needing 1 dose daily. But, it didn’t work out as I expected.

    The ER 180mg formula’s expected duration is less than I thought, which is 2.5 times the original formula. The result was that I still had big gaps and eventually increased to 4 doses a day.

    I have a long history of meditation not lasting as long as expected. So, the extended release formula may work differently for you. Plus, I’m still glad that I’m taking pyridostigmine ER 180mg, since my alternative would most likely be swallowing the standard formula by the handful each day!

  • Dave Haw

    Member
    May 6, 2022 at 7:39 pm

    I’m on 180 xr after stopping pyridostigmine due to side effects, GI issues, cramps – stomach & legs. My Dr recommended xr so I am using it for 9 mos. It helps my snowflake conditions. Mestinon is said to take several months of use for your body to adjust. I can relate to those who can’t tolerate the side effects. I have a high pain tolerance and on xr I have occasional problems but my vision is more stable so i tolerate the bad. I’m off soliris but taking Mycophenolate (Cellcept) 1000mg x2 and 1 180mg xr pyridostigmine.  I’m diabetic on insulin and wear a mask for the cpap. You will adjust to the mask and it improves your sleep issues. I’ve developed recent (past year) insomnia where I wake up and can’t fall asleep. I’m grateful for all the contributors that share their issues so I can see I’m not alone with my issues. Thank you all!

    • Amy

      Member
      May 7, 2022 at 3:38 am

      Hi Dave, i believe you might be the first person to mention Solaris.  How many infusions of solaris did you have?  Did you do plex at the same time?  Did it help with any particular MG symptom?  You didnt say how long ago you took it, but I am wondering if the manufacturer is still helping patients cover the cost.  I had a younger brother on Solaris when it first became available.  It was a big deal to get it and at the time it was one of the top 10 most expensive drugs.  Sadly my brother did get Solaris, but not before he permanently damaged his heart, lungs and kidneys due to an Autoimmune disease that caused his blood to clot.  I am thinking Solaris might actually sort of reset your immune system and might be a good choice to try for folks that have multiple AI diseases.

      • Dave Haw

        Member
        May 7, 2022 at 5:42 am

        Hi Amy… I started with IVIg until my insurance denied it.  While fighting for 3 mos. When I restarted IVIg it didn’t work. I was switched to Soliris.  Before the 35 minute infusion was completed my vision improved clearing my blurred/double vision. I was on Soliris for 16 infusions, when covid19 hit my Dr didn’t want me near any healthcare facility. My vision isn’t cleared but I can live with random, occasional blurred vision for 10-25 seconds. I can close 1 eye and clear my vision.

        I did not get any assistance financially other than my insurance. The billing was $70,000-80,000. Insurance got an immediate 50% discount but was over $500,000 for 16 doses. Thankfully my insurance covered it. I had no side effects, no infusion issues. Also the last infusion didn’t wear off for 3.5 months then my vision changed. I’ve been told Alexion has a similar infusion that is supposed to be comparable at 1/10th the cost. I believe it’s Altomira. I would try it if it gets on my ins. Formulary.  Best wishes, I hope this helps.

      • David Davidson

        Member
        May 7, 2022 at 11:02 pm

        Hi Amy, In august of 2019 I started Soliris. Once a week four times, since then every 2 weeks  and still do. Never have done plex, But I do get IVIG ( 10% Immune globulin) every 2 weeks on the  opposite weeks of Soliris. The Soliris helped with all my weaknesses, swallowing, chewing, double vision, arms, breathing, neck,
        <div class=”AppleOriginalContents”>Eyelids, face muscles and hands.I still have weaknesses in jaw, arms, swallowing, double vision but not near as bad as before. I also take a 180mg SR mestinon and 2mg prednisone. Medicare is covering all but the deductible. That is the only insurance that I have. Soliris gave me my life back, now I am walking 2 miles a day, cutting firewood , yard work and stay active in other ways. Sorry to hear about your brother. Hope this helps. 😊 Dave</div>

      • Amy

        Member
        May 9, 2022 at 2:52 pm

        Hi Dave,

        I am so glad Soliris is working for you. I believe it is a very good drug.  It did stop my brothers immune system from attacking his blood cells, but he got the drug too late.  He had another rare illnes, A Typical Hemolytic Uremic Syndrome. It took a long time and two hospitals to finally come up with a treatment plan. By the time they started the infusions he had blood clots in his kidneys and lungs and eventually his heart.
        Having the right care can mean life or death when you are dealing with a snowflake disease.  Also it is impossible to get your insurance to cover a drug, let alone a very expensive drug, unless you get the exact diagnosis the FDA   has approved the drug for.  Meanwhile you wait and hope you can hang on long enough until you can get approved.

  • Dave Haw

    Member
    May 9, 2022 at 4:23 pm

    That’s so true Amy! Advocate for the treatments you need. I’ve been fortunate to have a doctor who is very proactive in helping with the insurance issues. Also don’t blindly pay hospital bills. They get deep discounts, talk to the billing folks and you maybe able to get additional discounts.

    Waiting for medications known to work off label needs to be speeded up to get those drugs onto approved formulary lists.

    Stay strong and stay safe!

  • Norm

    Member
    May 12, 2022 at 8:03 pm

    I tried pyridostigmine ER for 3 days, and it didn’t work for me. I had a bad incident of not swallowing.

    My guess as to what happened is that the extended release never reached some threshold level of pyridostigmine in my blood. I’m back to taking the regular drug 3, sometimes 4, times per day and am doing well.

  • Gary

    Member
    September 28, 2022 at 12:36 pm

    I was originally prescribed 60 mg of Mestinon 4 times daily with slight improvement with my swallowing and double vision.  Referred to 2nd neurologist who increased my dosage to 90 mg 3 times daily and 180 mg Mestinon XR at night.  Swallowing and double vision problems have completely disappeared.  I still have occasional leg cramping and facial twitching but I will tolerate it compared to the swallowing difficulties I experienced before.  As for the diarrhea I have found a solution – Metamucil.  If I take it daily my issues are resolved.

  • Carol Lawson

    Member
    September 28, 2022 at 8:01 pm

    I tried XR180, and although it gave me better morning strength, could not tolerate the headaches (which I am told is probably a sensitivity to the material used to extend the release).  I tried several times, because the physical improvement in the morning was so appreciated, but the headaches were unbearable.  Wishing you good results and toleration of the medication.

     

  • Charles Karcher

    Member
    September 28, 2022 at 8:50 pm

    My medication regimen consists of 180 Pyridostigmine ER twice a day, 1000 mg Mycophenolate per day and will receive my first maintenance dose of Ultomiris tomorrow.  I have been on Mestinon for over two years.  At first there was a moderate level of diarrhea but that eventually subsided.  I get occasional bouts of diarrhea but not very severe.  My symptoms are well controlled except having double vision with my head in certain positions.  I have been on Soliris for 2 1/2 years and hoping that Ultomiris is as effective.

  • John Shanks

    Member
    September 28, 2022 at 9:16 pm

    I currently take 60mg three times a day and 180ER at night. While it does improve my sleep, I have had two instances where the prescription was defective and did not break down in my system.  My sleep was seriously affected and had serious fatigue issues. Be aware that is a possibility. Good luck!

  • John Palatucci

    Member
    September 29, 2022 at 2:26 am

    Hello everyone, in regards to mestinon er, i take 1 before bed time along with 3 mestinon 50 daily. And it does help me through the night. O was also getting the ER from canada costing much less than through my insurance. But now I get the ER for no cost at all through The Assistance Fund. If anyone is interested, let me know and i will give you the details

  • John Palatucci

    Member
    September 29, 2022 at 2:26 am

    Hello everyone, in regards to mestinon er, i take 1 before bed time along with 3 mestinon 50 daily. And it does help me through the night. O was also getting the ER from canada costing much less than through my insurance. But now I get the ER for no cost at all through The Assistance Fund. If anyone is interested, let me know and i will give you the details

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