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    • #19151
      Sawyer
      Participant

      Hello, I am new to this forum and recently joined because I am struggling with my MG right now. For some background, I am 23 years old and have had MG for going on three years now. I am on 10mg of prednisone and a high dose of IVIG monthly. As of a few months ago I started struggling with talking and eating again, and now I feel I am almost back to where I started before I was diagnosed and began treatment. However, it seems like my MG is now affecting more the back of my mouth instead of the front, if that makes sense (if anyone would understand it’s other people with MG)

      I’m very skinny (130 pounds and 5’10), so I’ve started taking my mestinon regularly at 30mg three times a day to help me eat and swallow better, but I get weird side effects. For example, it seems to make me jittery, nervous, and I get muscle fasciculation (spasms/twitching)

      I’m only taking 30mg three times a day, and my neurologist says I can take up to 60mg three times a day, but I’m afraid to because of these weird side effects. However, I am also really struggling to manage my MG symptoms with my current treatment. Has anyone else had these side effects? My neurologist doesn’t seem to be too concerned with them or know why I get these side effects, but it is very odd to me.

      • This topic was modified 3 days, 22 hours ago by Sawyer.
    • #19153
      Lisa Blutman
      Participant

      My neurologist had me drink a small amount of quinine water when i had the muscle fasciculations.  I take 60 mg od mestnon 4 times per day along with 1000 mg of celcept twice per day.  I am no longer having any issues and am stable.

      • #19154
        Sawyer
        Participant

        Thank you for your response. I’ve never heard about that before but I will look into that. I’m glad to hear you’re doing well

        • #19157
          TheresaG
          Participant

          Sawyer, are you seeing a neuromuscular specialist that specializes in MG.
          First the dose you are taking if mestinon is quite low.
          Bear in mind you can play with this Med to make it work for you.
          It can be 30 mg one dose and perhaps every other 60 mg.
          It is essentially out of your system in 4 hours so you want to make sure you take it during the times of day y.ou need it most.
          I generally don’t rake it after 7 pm as my day is done, but if I need to read or go somewhere I’ll take one. I don’t need it to sleep. AND I have never had a crisis.
          We are ALL different in symptoms and how meds work for us.
          Are you ACHR positive?
          Have you had your thymus checked?
          Many go into remission with removal.

          May I suggest you read read read.
          check out MGFA for good info and log into all the old conferences for education. Get smarter than your neuro.
          We are a rare group so it is so important you are seeing a neuro who specializes in MG. Can’t say it enough.

          As you are young you want to get it right from the get go as you likely will need to deal with this for many years. Though you could get lucky.

          From my experience IVIG stopped working for me and caused more bad than good.

          The new drug VyVgart has some great results. I just finished first cycle.
          So. Ugh easier than IVIG, see if your neuro can see if you are candidate.

          You also can contact them directly for assistance.

          There are a lot of new drugs that may be option for you as IVIG over the long haul will take a toll on you and your veins.

          VyVgart, Solaris, Rituxin are all ones you may want to discuss with your doctor.
          That is my experience.

          I’ve also found that meds like prednisone, mestinon can affect us differently at different times for a multitude of reasons. Water intake, electrolytes, food.
          Prednisone also changes our bodies internally and externally. It has long term effects you don’t want. That said you can’t stop it but there are nutrients that it strips and you need to replace.
          Unfortunately the neuro’s don’t help with this much so that is why their goal should be to get you on a treatment that gets you stable and you can reduce it.

          I’ll say again, you are young and have much life ahead of you so make it your goal to find the BEST neuromuscular neurologist you can.

          The jittery might be MG, prednisone, or if you’re not eating well effects from that.
          Potassium replacement is important with prednisone.

          Best of luck.

      • #19160
        TheresaG
        Participant

        Be sure to look up quinine affects for MG.
        It is actually contraindicated.
        I googled quinine and myasthenia Gravis and there is a lot of information contraindicating it.
        FYI

        Again we are all different but I would use caution.

    • #19155
      Charlie
      Participant

      Hey there! Sorry you’re having those issues, side effects are really frustrating. I only take mestinon as needed, which for me isn’t very often since it doesn’t help me that much (bummer) and I have massive side effects, including:

      – dizziness (so much so that I’m almost non-functional)
      – nausea
      – muscle twitching

      So I feel you with some of those side effects. My neurologist was also unconcerned with the side effects, but yeah I get how they can be scary. Maybe ask to speak to a pharmacist for more input?

    • #19156
      Jennie Morris
      Participant

      It can mean that you’re taking too much but it happens to me if I take it more than 15 minutes before eating. I use Tums to counter the effects on my stomach which helps with twitching. Any non-sugary food helps too. Does it go away after eating?  That will help determine if you have taken too much or just a side effect of taking on an empty stomach.

    • #19158
      Marvin Yudenfreund
      Participant

      Hey Sawyer, your description seems to indicate that you might need an academically oriented neurological team that is aware of the newest and most effective MG treatments.  High levels of Prednisone for long periods is not the best treatment option.  If you’ve been reading MG News, you may have seen new drugs introduced by Argenx and others.  I was treated successfully with Rituximab.  I take 60 mg Melatonin 3x/ day.  My side effects include runny nose, diarrhea, frequent urination.  My neurologist prescribed 1 mg glycopyrrolate 1/d, and it has really helped.  Good luck!

       

      • #19159
        Sawyer
        Participant

        Hi, I appreciate that suggestion. I’m not sure how to go about that route since I have Kaiser, but I would love to try some sort of new treatment options. I was put on Cell Cept 5 months ago and have seen no improvement, so I it looks like I will have to start Rituximab.

        Can I ask how you did on the Rituximab? It’s not a drug I look forward to, but if it helps my MG then I see no other option.

        Thanks

        • #19165
          TheresaG
          Participant

          Keep in mind cellcept can take I think up to a year to be effective.
          I have not been on it but ithers here that San attest to how long.

    • #19163
      TheresaG
      Participant

      Hey Sawyer, sorry to hear you are on Kaiser!
      It makes your care a bit more difficult but it can be done.
      Take your requests to your current neuro, ask if they will help you to get more current care, do your homework and take documentation showing how the newer treatments are more affective and less hard in the body. You are only 23. Long haul.
      Sometimes giving them the ammunition is what it can take.
      There are some facilities with great doctors, others not so great as everywhere but at the end of the day, they are in it for profits.
      So you must be the knowledgeable patient.
      If they won’t, don’t can’t do any more,
      Ask if they should or could refer you to a neuromuscular MG specialist. Assuming they are not.
      You also should look in the NIH for any trials going on in your area for the new proven drugs. That can get you in free.

      Read your Kaiser rules.
      There are situations where if they do Not have a neuromuscular specialist you file a formal request to see one to consult your case.
      If you are not receiving the treatment appropriate for you, they must refer you out.
      Are you in CA?
      No or So?

      I can’t type it all here but if you want to talk privately, friend me and I can give you some pointers.
      Also look In here there are Kaiser people here that may be receiving appropriate care and you may be in the area where they have a good neuro.
      Just some thoughts.
      Theresa

      • #19164
        Mike
        Participant

        I have Kaiser, Southern California.  My Neurologist so far has been considerate and helpful, but her experience w/ MG seems quite limited.  Does anyone have/know a So Cal Kaiser MD who is experienced in MG treatment?  If so, please tell me their name so I can look them up.  Thank you!  Mike

        • #19167
          Sawyer
          Participant

          I’m in the same scenario. I live in Southern CA and like my neurogoloist, but unfortunately he doesn’t seem as experienced with MG patients.

        • #19178
          Jonathan A
          Participant

          Find and ZOOM with  local California MG support groups, who have ZOOM meetings monthly.  They will have a list of the most MG trust worthy doctors near by.  The support group moderator keeps a list for her members of the nearby  GOOD and the UGLY (nonMG savy doctors).  I belong to four groups and ZOOM with them regularly.

          See also University of California at IRVINE.  They are an MG research clinic trial testing medical center.  They would know people who KNOW…..   I clicked a link for MG patients on a MG website, sent in my medical history, and they called me back to answer questions about my condition and what my MG score on illness would be.

        • #19166
          TheresaG
          Participant

          We all need knowledgeable proactive neuro’s.

    • #19171
      Michelle
      Participant

      My neurologist had me on 240 mg mestinon up to 4 times a day. Eventually I suffered with extreme side effects as the mestinon was toxic . My neurologist just didn’t have the knowledge or experience.

      I have since found a neuromuscular disease specialist that knows so much more!

      i would suggest that you look at teaching hospitals to find one. My insurance did not cover it until after an appeal because the dr is the only one in my state.

      We have to be our own best advocates!!

    • #19173
      Liane Martin
      Participant

      Mestinon definitely causes twitching and gastric issues, but if you take electrolytes and eat while taking it, your body can adjust pretty quickly, at least for mist of us. Some never can. Prednisone cause the shakiness, not Mestinon. IVIG Gave me tons of side effects, and made me terribly sick, but I stuck to it, as it seemed to be helping about 2 weeks a month. Now it seems that my low dosage of Prednisone is the only thing helping. Mestinon helps with swallowing, that is about it, but I notice, if I don’t take my full dosage, 90 mg 4x a day…I cannot swallow. I just got all my antibodies retested for the 3 rd time in 1 1/2 years since I have been diagnosed, and have a positive AChR modulating antibody finally, so no longer Seronegative. That gives more options, so my dr is going to try Ultamiris first…we will see, I hope it works!

    • #19174
      Mike
      Participant

      I’m on 180mg ER mestinon which I take right before bedtime (as instructed). The side effects have continued to mostly be GI cramping, bloating, mild nausea and mild diarrhea.  To stimulate my appetite (i.e. supress the nausea) I use cannabis, otherwise I would lose weight.

    • #19169
      LISA MICHELE HALL
      Participant

      Hello: I am responding to the Mestinon side effects. I feel more restless and I also start to sweat and get panicky. I do not like the feeling I am trying my best to tolerate it. I was started at 60mg 3x/day and had to drop down to 30mg 2 or 3 times a day. I am seronegative and unfortunately there is less treatment for my type. I also receive IVIG 4 times per month. I am not seeing a lot of improvement in my muscle weakness which is mostly my legs and arms and also causes me GREAT PAIN! My neurologist does not acknowledge the pain or panicky feelings; I am very frustrated with the lack of empathy. I am trying to stay positive…not easy. I am praying for something better. As far as the swallowing the only thing I have noticed is it takes me longer to swallow a large bolus of food, it sometimes feels stuck and I just take more time between bites. I also am under weight 5ft 5 and holding at 100#. I have no appetite. I have heard that neck exercises to strengthen the neck muscles help. I drink protein shakes to increase my weight. I have heard that Mestinon affects the gut. I hope the mestinon is helping you, if it is maybe you could ask your MD for something for anxiety? God Bless You and NEVER GIVE UP!

    • #19170
      Gulshan K Duggal
      Participant

      I am a Mg peatient for the last about more than 3 years .On the on set of the Mg ,I went into crisis and remained in ICU for around three weeks.Also remained on ventilator for about four days.I was administered IVG through IV 30 ml per day for five days countinously. Discharged after 1 month and started with mestinon 60 mg 6 times a day along with predinislone 10 mg once a day.The dosage of the drugs were reduced gradually and now I am on Mestinon 60 mg twice a day and azathioprine 50 mg twice a day. My symptoms are under control now.I also feel same side effects like you. Some time very mild , and some much more than mild which makes me uncomfortable at that time.but this last for a shot time .I feel we as MG peatients have to accept the side effect and try to bear it,as we can not stop taking medicines.

      All the best to all and keep the spirits high and positive.

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