• Posted by Richard Marquard on July 10, 2023 at 9:13 am

    Hello and excited to learn, share and get thru this!  Please read my profile as it explains where I am in the journey.  Diagnosed 5 months ago, i am fortunate to not be as bad as so many I am reading about in the forums.  Prayers and encouragement to all.  Am trying to figure out how to get to “ remission”. I hear all about new normals , but, it seems like the first goal is remission and the last step is the cure.  Since no cure yet, is remission no symptoms completely?  While in remission do you still take the drugs? Some have said that they have flairs that take them out of remission once there. Am aware all of us are different, but, could some share their story of how they got to remission and stayed there? We are all at war with MG and my strategy is to fight on the battlefield with the drugs and also fight at the negotiation table with eastern med.  I am stalled now( on a plateau, sort of) and trying to move forward expeditiously.  Seems like a lot of “try this” approaches even from my neuro. Perhaps that is the path once we stop getting worse and stabilize( new normal?) Thank you for any comments or emails

    richard

    Dev keshav replied 8 months, 3 weeks ago 23 Members · 28 Replies
  • 28 Replies
  • Delia Hernandez

    Member
    July 10, 2023 at 9:43 am

    You have a great attitude towards this. Keep it up, sweetheart.

  • Cheekster

    Member
    July 12, 2023 at 9:43 am

    I ordered Redbull last night from Amazon and got it just now. The taurine is helpful for some reason, then I looked it up and taurine has neuromuscular benefits. Helps to zap the communication awake unlike what caffeine does. I didn’t want to order monster Energy because it has twice the caffeine.

  • Ronald

    Member
    July 12, 2023 at 10:09 am

    My neurologist says you are in remission when you no longer need mestinon

    sounds simple I feel that I am almost there as some days I can get through on 2-3 mestinon 60 mg however i take two myfortic 500 mg per day and 5 mg preg so getting to remission must include no meds first then no mestinon

    i do take vit D 200 mg ubiquinol astaxanthan and I feel this helps

  • Richard Marquard

    Member
    July 12, 2023 at 10:21 am

    Thank you so much for this info re mestinon.  Can you fall out of remission and then take mestinon again temporarily and quickly get back into remission?  I think somewhere in the forums they call this a flair?

  • James Starkey

    Member
    July 12, 2023 at 3:24 pm

    Hi, Richard.

    I always thought of remission as a black or white condition: you are either in remission, without symptoms, or you are not. MGFA defines the term as:

    • Remission: symptoms disappear completely for some time even without treatment

    Implied in the above MGFA definition is the fact that any remission may be temporary. I have seen elsewhere that “remission” is used to describe a spectrum of conditions. Apparently one can have “complete remission” in which there are no symptoms (and, I believe, the antibodies are also gone). Pharmaceutical remission is, to my understanding, a condition in which medications effectively eliminate symptoms, but the MG antibodies are still present in the bloodstream. I have also see other gradations of remission in which some symptoms remain but are controlled well enough that they do not cause significant impact on one’s daily life. I do not know how common these variations may be. Complete remission is rare, but it does happen.

    Sorry I could not be more helpful.

  • Richard Marquard

    Member
    July 12, 2023 at 4:17 pm

    Thank you.  I went off pyridostigmine yesterday and remain on prednisone but reducing slowly.  I have slight dyastheria but no one really notices as I catch it.  Still major fatigue but thinking it is caused by drugs the two mentioned drugs, hyperthyroidism, or something else… blood labs just taken.  Muscles are weak , but, now in physical therapy to rebuild.  Stress is a trigger but manageable.
    lots of “buts” , but, going to try it as neuro doc thinks it will be ok and so do I.  I guess I can take pyridostigmine again if something happens (like the flairs I have read about) so carry it with me.

    I will keep you posted.  I wonder if there are exercises for the tongue in cheek muscles as they seem to be weak still.

    thank you , again.

     

    • Dev keshav

      Member
      November 1, 2023 at 2:25 pm

      Hello Richard, thank you for sharing your experiences. I also stopped taking mestinon, and have been in a state of anxiety since then. I keep wondering if I have made a mistake and will suffer from all the symptoms I have had in the past. I stopped because I was having cramps in practically every part of the body. I could have a cramp from just moving about. It was too much. I also had stomach problems, and could break out into a sweat regularly. Once I stopped mestinon, these symptoms went away. But I think that fear is the worst part of myasthenia gravis. I recall the times I struggled to swallow, breathe, or see because my eyes would not open.. I am still taking azathioprine, in spite of feeling that I’m in remission. I cannot ask any doctors for advice. They don’t understand. I actually feel comforted by your experience. It’s like I’m not the only one going through a similar situation. Thank you.

  • Bill Johnson

    Member
    July 12, 2023 at 5:10 pm

    Hello, Richard:

    As with some of the other responses, I think the term “remission” is complicated (and probably hard to achieve with MG).  However, I am writing to give you some hope as I believe I am in a pharmacological remission – I have had no appreciable symptoms for four (4) years.  I feel blessed.  However, I have been on rituximab 1,000 mg. IV infusions every 6 months.  Unfortunately, the rituximab causes significant immunosuppression: B-cell depletion and antibody depletion.  Consequently, I have to be careful making sure that I avoid situations where I could be exposed to a significant infection, and it is work with all the labs & appointments monitoring my immune system.   I am hoping they eventually come out with a more selective drug that isn’t so immunocompromising.  Nonetheless, I currently believe the trade-off is worth it.

    Regardless, the goal you and your provider should strive for is an optimal balance: the least amount of symptoms using the least amount of drugs.  I also suggest you get a second opinion from another provider (familiar with MG) on your treatment plan — two heads are better than one.  That’s how I got to where I am now (symptom free).

    Godspeed to you in your journey with MG.    — Bill

  • Thomas Lee Clark

    Member
    July 12, 2023 at 9:01 pm

    Any time for me when the symptoms lessen I felt like I was “In Remission”. Never out of the woods. When I get extremely tired driving into headlights I still get flares of double vision. After the thymo I was and have remained symptom free, yet, I watch and my primary encourages me to do so. I was recently put on a drug for bladder control that stated not if you have MG I searched and stopped with no seeming harm. This is a wild disease and I am thankful my symptoms are really gone. The return fear is not. Every time I choke I have a little snap back.

  • Robert Zidle

    Member
    July 13, 2023 at 9:08 am

    Hi Richard:

    Sounds like you’re on your way to remission.  I recently had a relapse after almost 2 years in a state of remission in which the only physical symptom was lower body weakness (noticeable but not interfering with a normal life.)  I believe the exacerbation was caused by two factors: a lot of stress due to my wife’s medical situation and my back surgery, but more likely, due to cutting back on my meds too quickly. I had been weaned off steroids during the year prior to reaching remission and started reducing the mycophenolate down from 2000mg/day.  Slurring speech, double vision, muscular weakness (including breathing difficulty) were significantly worse than at the onset of the disease.  I certainly have a new respect for what this disease is capable of. I underwent a series of plasma pheresis treatments to quickly improve my breathing strength, and then renewed the regimen of steroids, increased mycophenolate and pyridostigmine (as needed.)  Gratefully, my only remaining symptoms are significant torso and lower body weakness. Even though I haven’t needed pyridostigmine for several weeks, I don’t feel I will be in remission until I have regained more back strength.  I am 80 and was first diagnosed with MG in March, 2018. I appreciate the opportunity to offer my perspective on remission.

    Best regards, Bob Z.

  • John

    Member
    July 14, 2023 at 2:41 pm

    I thought I was doing ok until about one month ago and well onto what some might call remission. Down to 90mgs of Mestinon 3 times a day. 10-15 mg of the Preds and 1000mg of Cellcept twice a day. I’m just very tired recently and have little strength. But what bothers me most are my eyes. I can control the double vision somewhat by moving my eyes at an angle but have been diagnosed with Central Serous Chorioretinopathy, basically a build up of fluid in the eyes, and I notice that the vision is deteriorating. When driving though I still have to place a piece of tape in one lens.

    So my eye guy blames it on the steroids and albeit have gradually honed down from 80mg a day from Jan when first diagnosed and my Neurologist says that I can take the mestinon when I need to, but I have got to the stage where I don’t know if the pills help or not?

    Changes daily as well. At present, just quite weak and tired. But the eyes do concern me but seeing my Opto-Neurologist next week and will see how much worse the eyes have got and take it from there as there is treatment for this as in laser procedures but dont know how risky this could be?

    The good news is that they were worried re my high WBC count, but it has gone down to 12 when it was over 20.

    Lastly, trying to give up vaping after giving up smoking for 50 years cold turkey and finding this difficult, but also wondering if this is doing further damage to my condition. I though should be grateful as do not have any previous eating, swallowing talking or breathing problems as in Jan/Feb of this year.

    Best to all.
    p.s. Had my second lot of Vyvgart infusions. Didn’t feel the last monthly session made any difference,(could actually have made it worse, but I don’t know) and just noticed that they admit to administering a dose of Chemotherapy therein. What’s that all about?

  • Robert Davidson

    Member
    July 14, 2023 at 3:26 pm

    I was diagnosed with MG about 16 months ago.  Fortunately, when the Nurse Practioner at my doctor saw me, she immediately ordered an ambulance to take me to the hospital.  The Neurologist on call was a specialist on MG (and ALS).  After 9 weeks in the hospital receiving multiple treatments, I was released and now for the last 8 months have been told I’m in remission.  I’m on 2.5 mg of Prednisone (considered a maintenance dose), 50 mg of Imuran 3 x per day, 60 mg of Mestinon 4 x per day, and 1 mg of Glcopyrrolate 3 x per day. Plus IVIG every 5 weeks.  He wants to wean me down to an IVIG every 12 weeks which will take about 2 years, and eventually discontinue the Prednisone, as the Imuran should have taken over the treatment. Apparently the Imuran can take well over a year to be fully effective. Except for the 4 hours for the IVIG, my life is essentially back to normal. I see the Neurologist every 3 months.

  • Bli shame

    Member
    July 14, 2023 at 4:53 pm

    I think James put it succinctly. Remission in myasthenia gravis is not an absolute term or definition. Suffice it to say “remission“ to most people means reasonable muscle strength, and no bulbar symptoms and a fairly “normal“ life for whatever age and activity level the patient is in.
    regarding going off Mestinon and staying on steroids is some thing that I don’t understand-  the long-term effects of steroids is not good.  there are no bad long-term effects of mestinon. The idea is to reduce the steroids and not worry so much about mestinon. 

    • MikeS

      Member
      July 16, 2023 at 10:06 pm

      I agree with Bli shame. I’m only on Prednisone and Mestinon. I have exclusively bulbar symptoms when I get flare-ups. As each flare-up starts I pump up the Prednisone, leave it at that level for as long as symptoms persist. Symptoms abate gradually until they disappear. At that point I start reducing Prednisone by 5mg per month. So far the lowest level I’ve reached before symptoms return is 15mg. You have to go slowly on the reductions of Prednisone, as it takes weeks for the body to adjust, otherwise you’ll throw yourself back into a flare-up too soon. I’m currently navigating my latest symptom-free period and have Prednisone down to 20mg, with hopes of getting lower than 15 mg before symptoms return (if they do, and they probably will, but fingers crossed that I can get completely off Prednisone at least for a while).
      Mestinon is a totally different story, as it doesn’t suppress the immune system (like Prednisone) but rather acetylcholinesterase for a few hours with each dose. So I look at Mestinon like I look at aspirin or most over-the-counter drugs: it’s short-acting and wears off after a few hours. (There’s also a time-release version but even that doesn’t last an entire day.) Since I take it every 6 hours I time my meals for those times the drug effect is at its peak (around 1-3 hours after taking) because of the swallowing issues with bulbar MG. Once all my MG symptoms clear up I start reducing (just like with Prednisone) the dose of Mestinon usually about once a week, and only one of the four daily doses at a time. So, for example, if I start at 60mg four times a day, when I start reducing I’ll pick one of the doses and drop it to 30mg and then the following week I’ll drop a second dose to 30mg and so on, until all four daily doses are at 30mg after four weeks. I’m waiting to see, after consulting with my Neurologist, if I should go from 30mg to 15 mg or to 0mg for each of the four daily doses.
      So it’s like experimenting to see what works best so that I can be better prepared for future flare-ups.

  • John

    Member
    July 14, 2023 at 7:34 pm

    The idea is to reduce the steroids and not worry so much about mestinon.

    Reduce yes, but wouldn’t the best idea eventually be to actually totally come off the steroids and how would one know when this would be?

    • James Starkey

      Member
      July 15, 2023 at 11:28 am

      The ultimate goal my neurologist & I set once I had to begin steroid use was for us eventually to titrate me completely off Prednisone, if possible. Some folks with MG are never able to get off prednisone completely, but I did under close observation by my neurologist. Prednisone and steroids in general are “nasty” medications with multiple side effects, some serious. I recommend developing a plan with your neurologist to reduce and eliminate steroids altogether if possible. I agree with Bli’s comment that Mestinon (Pyridostigmine) has very few side effects and is considered one of the safest MG medications. But that is definitely a topic of discussion with your neurologist. I only mention these things to emphasize that steroids are a two-edged sword: They can be crucial in stabilizing MG, but long term use is quite a risky matter.

    • Jodi Enders

      Moderator
      July 20, 2023 at 10:00 pm

      Central Serous Chorioretinopathy or smoking could trigger the double vision you continue to experience. Generally, Acetylcholinesterase inhibitors, or Mestinon, are usually a first line of defense treatment for MG. Sort of a temporary fix for when other treatments take a while to take effect or when symptoms only sometimes appear that are typically controlled by different types of treatment and you need some extra help. If you constantly have double vision, consider increasing the mestinon or Cellcept, as steroids have many long-term side effects. A maximum of a few years on the lowest dose possible is ideal with steroids. Still, different individuals’ bodies sometimes don’t corporate with tapering.

      Steroids is prescribed if muscle weakness does not improve after taking acetylcholinesterase inhibitors, Mestinon.

      Suppose you experience no noticeable improvement when you take Mestinon, which should be fast or within 30 minutes. In that case, you should discuss stopping it with your doctor.

      Do you know which MG antibody you have or if you are seronegative? This can potentially make a difference in the effectiveness of treatments.

      – Jodi, Team Member

       

      • John

        Member
        July 21, 2023 at 1:41 am

        HI Jodi,

        I found this, but don’t quite know what it means….

        Acetylcholine Rec Binding CQ 1.50(H)

        Acetylcholine Rec Blocking Ab CQ 29(H)

        Acetylcholine Rec modulating ab CA 35(H)

        Striated muscle Ab CQ positive

        Striated muscle Ab titer1:160

         

        Thx.

         

         

      • Charin

        Member
        July 21, 2023 at 2:16 pm

        Hi

        about 5 years after my thymectomy I was told I was in remission – I went from 12-14 mestinon a day to 3-6 pills a day. I no longer slur my words. But I can tell from my body when I need a pill or 2. Also the meds are lasting much longer than 3-4 hours. Hang in, it often gets better after time. I realize I’m only of the lucky ones I was on high does of prednisone until I starting breaking bones then I was switched to another med.
        now I just take mestinon.

        my Dr says it can come back but hopefully I’m in this spot for good- it’s been 3-4 years already

  • Carlos A Galindo

    Member
    July 18, 2023 at 8:46 am

    Hey Richard,

    My Myasthenia Gravis initial symptoms started back in April of 1999, found out all about it by July and had my Thymectomy in August. I was only taking Mestinon every 6 hours. By the end of the year in December, I decided to stop taking the Mestinon to see how I felt and noticed I had gone into remission. It felt really great and had about 97 to 98% of my normal body muscle functions back from what I felt was down to about 30%. This lasted for 15 years and unfortunately the MG symptoms returned in 2015 and I have not been able to shake them off. Now, I take Mestinon 60mg / 3 hours and 180 mg slow release at night. I also take 5mg of Prednisone, 1000mg Cellcept/day, and get Vyvgart infusions every 2 weeks. I am no longer in remission, but this medication regiment allows me to function at about 90%, and only issue is the up and downs between infusions. I wish you much luck in your search for your recovery goals, I’m sure you will find a sweet spot, at least if not a full on remission state.

  • Barbara E.

    Member
    July 19, 2023 at 3:54 pm

    Hi Richard.

    First, I think many confuse remission with symptoms under medical control. In my case, MG started in 1990s with mostly drooping eyelids and fatigue. Over years, it worsened and I was about to start IVIg treatment when I suddenly loss all control of my limbs. So IVIg treatment started after massive steroids in hospital. On the 3rd day of treatment, my eyes opened and limb muscle control started returning.

    I still took Mestonin (pyridostigmine) over the next several months and noticed what appeared to be returning symptoms. When tested, the results showed that I was no longer producing the AChR antibody and meds were causing symptoms. The doctor said there was no way to know how long it would last.

    For the next 13 years, I was in remission and needed no medication/treatment. It was wonderful and even allowed me to care for my husband during his last years. But, about 3 years ago, my eyelids started drooping again and I knew it was back. This time, test results showed that I was seronegative. (Go figure!) Since then, I’ve worked with my doctor to try to medically control my symptoms and live as full a life as I can. Maybe, I’ll be lucky enough to achieve remission again. Who know!

    Good luck and hang in there!

    Barbara

  • Pamela

    Member
    July 21, 2023 at 2:31 pm

    I’m really confused now re: remission. I have had gMG for 13 years but have not tested positive for it, (seronegative) yet I tested positive with EMG and fine needle test. A few months ago I stopped having my constant muscle weakness and experimented with not using Mestinon and didn’t notice a difference. I went to my neurologist and he did the EMG and nerve conduction tests and I tested negative. He said I don’t have MG. Wow, okay! Then during a stressful event my weakness returned and Mestinon again was effective and helped me through the weakness. So was the Neurologist correct or perhaps it was a remission? I was so terribly weak several times in the past 13 years that I couldn’t work, had IVIG and then felt so much better afterwards. I’m confused about this as I never considered a remission period, just felt like I might be a mental case. Reading this all about remission has my head spinning but wondering if anyone else has experienced anything similar?? Thanks, Pam.

  • Lou DeYenno

    Member
    July 21, 2023 at 2:52 pm

    Hi

    I was diagnosed with MG 3+ years ago and was considered in pharmaceutical remission till labor day 2022…since then I’ve had 1 crisis and now in a flare for 4 months. I’m currently taking Prednisone, Mestinone, ultomiris and getting boosters of IvIG and a booster of ultomiris. My neurologist is miffed that my MG is being very stubborn! Each day is a roller coaster ride with swallowing, chewing and tiredness around each curve! I’m in the 8th week of the Ultomiris 12 to 26 week efficacy trial waiting for it to grab hold! Thus situation is tiresome but I have a great support system!

  • Sharon Haw

    Member
    July 21, 2023 at 3:34 pm

    While a cure may not be on the horizon, there is hope on the treatment front. I’d be over the moon if I could kick immune suppressant medication to the curb but not if the cost is MG instability. I’m on mycophenylate mofetil. The first year of treatment was aggressive with low dose prednisone & Mestinon, and unfortunately the latter elevated liver enzymes so I was switched to mycophenylate mofetil after weaning off prednisone. All of these meds eliminated my symptoms. After 3 yrs symptom free on mycophenylate alone, and a couple of 2 week trials off it to boost my immune system for immunizations, my neurologist gave me the green light to reduce the dose in half to see if I was in remission. A month later I couldn’t open a water bottle and I would see double when I looked up. My neurologist warned me returning to stability might not be as simple as returning to my previous dose, and he was right. It took 6 months back on full dose to resolve symptoms completely. Luckily I had been watching for the tiniest symptom. I would love to be off immune suppressant medication someday because it restricts socializing especially in our long winters here but for now, I’m thankful to be stable and feeling normal again.

  • Rick Knight

    Member
    July 24, 2023 at 9:15 am

    Hi Richard

    My neurologist encourages me to not look at my journey as a chase after remission, but more of a quest to find a place of control over my symptoms, using medication, lifestyle changes, diet, rest, etc. I believe this kind of control is attainable, but the most challenging thing for me is the self-discipline involved. Life habits are hard to change when one is uncomfortable because of MG.

    Remission, as others have written here, seems to mean something permanent, or at least semi-permanent. My doctor warns against that thinking. If I become symptom-free, I cannot relax my thinking in terms of how I take care of myself.

    Auto-immune diseases, as I am learning, are very complex and insidious. My plan is to continue paying close attention to my body and symptoms, and learning all I can each day. This is war, after all, and we can win!

  • John

    Member
    July 25, 2023 at 8:25 am
  • Patsy Bobb

    Member
    July 29, 2023 at 2:35 pm

    I was diagnosed with MG in the early 90s. I can remember being in remission once about 6 years ago.  No medications by only about a year. Then I had to start back all my usual medication. Now I began hypertension. It’s really scary my doc put me on blood pressure medication. It has helped lowering it and my pulse rate. It’s just the side effects and my chest occasionally get a little tight. Has anyone developed hypertension what medication do you take? Does it help? Please someone let me know if you have developed hypertension.

  • GREG M CLARKE

    Member
    October 31, 2023 at 5:26 am

    Remission is not my goal, however you define it. I was diagnosed 14 months ago. I’m 75 and taking CellCept. I’ve weaned down to to 7.5mg of Prednisone per day, and still on 60mg/day of Mestinon. I’ve had steady progress but I focus on enjoying what I can still do. (This includes avoiding things I don’t like to do.) I’ve learned to budget my activity (spoons). I’m working on the 20lbs I gained taking Prednisone.

    I’ll settle for progress. I aired up the tires on my bicycle that has been idle for a year. We’ll see what happens.

    Another thought. If I achieved remission, would I always be looking over my shoulder wondering if and when it might all come back?

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