Myasthenia Gravis News Forums Forums Welcome Lounge Pyridostigmine 180 SR shortage

  • Pyridostigmine 180 SR shortage

    Posted by Patricia Lyons on May 31, 2024 at 7:21 pm

    I am still not able to get his after these several weeks. N Cal Kaiser was supposed to have it by 5/20 but now has no ETA estimate. Anyone else having any luck.

    Thanks

    Pat

    paul spychalski replied 1 day, 6 hours ago 19 Members · 26 Replies
  • 26 Replies
  • Leigh

    Member
    May 31, 2024 at 7:40 pm

    Took me a month to get mine (90 day supply) from cvs mail order. Received about 10days ago. Luckily I had plenty on hand so I didn’t have to go more than a week without it but my body did not like only taking 60mg. I was a mess! Very weak! More side effects! Now I am terrified of it being on short supply again! Hope you get some soon!

    I take 180mg twice a day & 60mg three times a day. I have been taking it that way for 7+yrs & it works well for me.

    • paul spychalski

      Member
      June 6, 2024 at 10:25 am

      What side effects do you get with that?

      • raven

        Member
        June 6, 2024 at 10:36 am

        For me, personally, and since I’ve been on it for a very long time and only take it at bed time, my only side effect is sweating during the night. It is time-released throughout the night so it does keep me stable in the morning. I then start taking the 60mg pills. Other people may have other side effects, I don’t know how they respond.

  • raven

    Member
    June 5, 2024 at 1:26 pm

    I’ve been on my mail-order waitlist since April and another pharmacy waitlist since May and still nothing. I even called today and no ETA. I told them that I contacted the manufacturer Alvogen and they told me that the “release date would be June 3rd.” So I can only hope that shipments will be arriving soon. I live in Florida and this heat is killing me. I take the 180mg at bedtime and what a difference without it. I hope you get (and everyone else) some soon!!

    Raven

  • James Fabry

    Member
    June 5, 2024 at 2:06 pm

    Customer Login – HealthWarehouse.com I get a 90 day supply of 180mg ER for $390.

  • Charles Karcher

    Member
    June 5, 2024 at 2:14 pm

    This should be merged with the established thread “Mestinon Shortage”

  • Keith Wilson

    Member
    June 5, 2024 at 2:38 pm

    Try Pricepropharmacy online

  • CAPacheco

    Member
    June 5, 2024 at 3:01 pm

    I ran into the same issue. Unfortunately I take 4 of the 180mg ER tabs daily and they had to substitute a 3 month supply of 60mg tabs instead. So that is 3 tabs each dose … 12 per day. Not fun, especially because I often have trouble with swallowing due to my MG. But I have to be on it. I tried the liquid Pyridostigmine but my insurance company would not approve it for more than 1 month. Besides, it was unpleasant tasting. But we carry on.

    😉

  • Mama

    Member
    June 5, 2024 at 10:20 pm

    I only have been prescribed the 60 and so far have not had any problem getting that one.

  • Robert B.

    Member
    June 7, 2024 at 2:16 pm

    Can you not take the 60 mg tablets until the other is back in stock? I’ve had MG for ten years and never taken anything but the 60 mg tablets, which I take four times per day.

    • paul spychalski

      Member
      June 27, 2024 at 2:19 pm

      Do you have problems with Bloating, gas and Diarrehea? If so, what helps that?

      • spacecadet

        Member
        June 28, 2024 at 5:52 pm

        I did, but then came across an article that stated Mestinon has a coating of lactose. So I started taking Lactaid along with the Mestinon, and no more diarrhea and very little gas and bloating. I happen to be moderately lactose intolerant, and no one asked me about that.

  • Robert Davidson

    Member
    June 7, 2024 at 2:18 pm

    I’m guessing the problem is Kaiser. I’m not a Kaiser patient. My mail order pharmacy is CVS Caremark which is connected to Blue Shield, my insurance company. I’ve have not had, and do not have, problems getting my prescription refilled when is comes due. I’m on auto-fill, so I don’t have to contact them. They send me an email/text when it’s time to refill.

  • MikeS

    Member
    June 7, 2024 at 2:19 pm

    Hi, everyone. I just want to make sure that everyone reading this forum who is affected by the shortage knows NOT to substitute by taking three 60 mg tabs of mestinon (pyridostigmine) at one time. This is a legitimate risk and you could possibly end up on a ventilator (in the ICU) as a consequence, if not have a less harmful but still-serious reaction. Please, instead, consider talking to your doctor first about how to best space apart the three doses effectively. I know you MG vets know all about this, but maybe someone new at this doesn’t. Thanks for listening!

    • CAPacheco

      Member
      June 7, 2024 at 3:35 pm

      Actually, I am currently taking 3 of the 60 mgs tabs each dose (I take 4 doses daily) because the pharmacy didn’t have the 180 mg ER tabs. I’ve been on them for a few weeks now and all has been fine. Now you have me concerned. I’ll ask my neuro.

  • Jonathan A

    Member
    June 7, 2024 at 2:42 pm

    I am still on 60 MGs three times a day. I don’t seem to have any side effects … several of my other 14 meds have side effects. It took me 8 months to be diagnosed with MG. My problem in Phoenix is that every doctor I met is MG CLUELESS, and can not diagnose their way out of a paper bag. I was finally diagnosed by a third floor hospital nurse at the second of five 2020 hospitals. She had known a couple MG patients … so she knew her shit … and did not call me TANGENTIAL or a DIFFICULT HISTORIAN, in their write-up reports, when I tried to discuss all my MG symptoms with “doctors” ????

    I have had no problem getting my med so far … can order or auto refill on website. I use FRYS GROCERY PHARMACIES … it is called KROGER’s in other states.

  • James Fabry

    Member
    June 7, 2024 at 2:58 pm

    Try Healthwarehouse.com. I have always been able to get my 180mg – 90 day supply. It is $390 for a 90 day supply. New shipment coming to me June 17th.

    • David S

      Member
      June 7, 2024 at 3:47 pm

      I get all my meds from the VA – Thanx all.

      No shortage.

      • David S

        Member
        June 28, 2024 at 2:12 pm

        I guess I spoke too soon.

        VA can’t fill my 180s and now are saying that there is a shortage of 60s.

        They are sending me an additional 180 – 60s to supplement the lack of 180s. That will hold me for another 30 days.

      • paul spychalski

        Member
        July 12, 2024 at 8:09 pm

        I too am a Vet and get my meds w/them. The Mestinon didn’t work, they finally gave me Pyridostigmine and that does work.

  • Eleanor

    Member
    June 9, 2024 at 9:14 am

    I just got mine Friday from Walmart. My regular pharmacy transferred my prescription to them. It took 24 hours to get. I’m in S.C. no other pharmacy could get it.

  • Skp

    Member
    June 29, 2024 at 10:30 am

    I Live in Sioux Falls SD. Since January Express Scripts have not been able to provide the Pyrostigmine pills that I need. So I searched locally. Hy Vee Grocery/Pharmacy is the approved provider with Express scripts. At first they could get them, then the second time I needed them, it was hard for them to get some, they could only get 1/2 a prescription. Cost Co was supposed to have them but then couldn’t get them. Wahlgreens same thing.

    I just was able to pick up my full prescription this past week at Hy Vee again though. Thankfully..

    • David S

      Member
      June 30, 2024 at 11:10 am

      Got a call from the VA Friday afternoon,

      They just got 60s and 180s and will be sending directly.

  • Virginia Webb

    Member
    July 5, 2024 at 10:07 am

    Just wanted to check in. I am in PA (Chester County) and get my Pyridogstigmine

    60s in 3 month quantities at my local Giant (Supermarket) Pharmacy. No issues with shortages

    and recently and I even noticed a price reduction. I take them 3x per day for my milder

    case of MG. From Virginia Webb

  • Harold Summers

    Member
    July 7, 2024 at 7:51 am

    My Walmart Neiborhood Pharmacy has had no trouble obtaining my supply. Last week I received a 3 month’s supply, which in my case equals 9 bottles.

  • Charles Karcher

    Member
    July 10, 2024 at 2:22 pm

    Picked up a 90 day supply today. Was able to obtain from the first pharmacy I contacted. Apparently the supply issues for this drug have begun to ease.

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