- This topic has 39 replies, 24 voices, and was last updated 9 months, 3 weeks ago by Jonathan A.
May 13, 2022 at 6:51 pm #19151
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.
May 13, 2022 at 7:18 pm #19153Lisa BlutmanParticipant
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.
May 13, 2022 at 7:20 pm #19154
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
May 16, 2022 at 2:03 pm #19157
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.
May 13, 2022 at 8:06 pm #19160
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.
Again we are all different but I would use caution.
May 13, 2022 at 7:42 pm #19155CharlieParticipant
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)
– 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?
May 13, 2022 at 7:45 pm #19156
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.
May 13, 2022 at 8:02 pm #19158Marvin YudenfreundParticipant
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!
May 13, 2022 at 8:05 pm #19159
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.
May 13, 2022 at 9:15 pm #19165
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.
May 13, 2022 at 8:13 pm #19161MarcieParticipant
At most I was only able to take 15mg every three hours five times a day but eating with it even a total of 1500 calories a day put on 20lb in months. I currently take generic liquid Mestinon 6mg (a half ml of 60mg/5ml) liquid.The last time I took it a couple years ago I could only take 2mg at a time, an equivalent of one thirtieth of a tablet as any more caused side effects. I stopped taking because of cost but this time I was able to get the insurance to lower the cost from $830 for eight ounces to $20 a month with the correct information. The Mestinon caused esophagitis, gastritis and duodenitis, severe flatulence, and the fact I am so sensitive that I cannot take more than a thirtieth to a tenth of a tablet euivalent that were documented so the insurance now pays. I am unable to take immune suppressants as I had tuberculosis exposure as a nurse treated for a year that contraindicates immune suppressants and the risk/benefit of IVIG or plasmapheresis related to my symptom severity rules that out also. While your provider and you need to look at other therapies including thymectomy even without thymoma as recommended in a New England Journal of Medicine article several years ago, you may find as I did that what is considered normal Mestinon dosing is too much for you too. If you cannot get your insurance to pay try the Patient Assistance Fund of the MGA.
May 20, 2022 at 11:20 am #19217Jennifer ThompsonParticipant
Marcie, I to had similar issue with the mestinon tablets. Do you have the same side effects from the liquid?
May 13, 2022 at 8:23 pm #19162MarcieParticipant
I am extremely sensitive to Mestinon dosing. The tablets at 30mg five times a day caused esophagitis, gastritis and duodenitis among other side effects with rebound as it wore off. I took generic liquid Mestinon 2mg (equivalent one thirtieth of a tablet) with good effect several years ago but stopped because of cost.
I now take 6mg generic liquid Mestinon (equivalent of one tenth of a tablet) every three hours as any more causes the side effects you are having. I was able to get the insurance to lower the tier so I did not have to pay $830 for eight ounce bottle but only $20 a month. The MGA patient assistance fund might help you pay for it. The studies recommend thymectomy even without thymoma (read New England Journal of Medicine article from several years ago you can google) not must medical therapy.
So you see not every one need the same Mestinon doses. If I ever had a full tablet I think it might have done me in.
May 13, 2022 at 8:47 pm #19163
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.
May 13, 2022 at 9:04 pm #19164
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
May 13, 2022 at 9:57 pm #19167
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.
May 15, 2022 at 8:46 pm #19178
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.
May 16, 2022 at 2:02 pm #19166
We all need knowledgeable proactive neuro’s.
May 14, 2022 at 12:56 pm #19171MichelleParticipant
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!!
May 14, 2022 at 1:19 pm #19173Liane MartinParticipant
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!
May 14, 2022 at 2:12 pm #19174
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.
May 15, 2022 at 8:30 pm #19177
Sorry to hear that you are still having MG problems. I am in remission for 15 months, have only had the original 5 days of 5 hours of IVIG … when I was finally diagnosed after 8 months of being very, very sick. No doctor could diagnose me .. a floor nurse … recognized my symptoms and talked them into testing my ANTIBODIES… all three tests were over the roof.
I am currently on MESTINON 60 MGs three times a day and CELLCEPT at 1000 MGs twice a day. My best advise is to join 2 or 3 of the MYASTHENIA GRAVIS support groups and ZOOM with them in CALIFORNIA or any other states. I Zoom with four different groups. THEY are a GODSENT. They can tell you what is working and not working for them … in pills, solarius, Vyvgart, or IVIG. Your fellow MG attendees know ….. who locally are the GOOD as well as the UGLY and clueless (insufficiently MG educated) doctors are in your location. They and the SUPPORT GROUP MONITOR are a terrific asset to use.
Depending on you are, the UNIVERSITY of CALIF at IRVINE is doing MG trials. They contacted me by email, as well as called me by phone. They will help you with MG intelligent doctor choices. I answered all her questions .. but did not have a high enough number score on those MG illness checksheets, to still be sick enough to qualify .. as I was in remission.
I have been stable for 15 months. Use a support group and find a GOOD MG doctor. Do not ASSUME that MESTINON is what is hurting you. My Mestinon and Cellcept are keeping me fine … and MESTINON is not TOXIC to me ….. PREDNISONE IS VERY TOXIC with lots of side effects and maybe your medication issue. Use the support groups to find a GREAT MG DOCTOR nearby.
PREDNISONE causes a great weight gain, moon face, insomnia, and gave me (with the statin drugs) MEDICALLY INDUCED DIABETES II. So my blood sugar numbers (never had diabetes ever) jumped up to 350, 400 and “HIGH”. Most medications are probably dosed by a patient’s weight, so that could affect you too .. if you are getting too much for your slim frame. In the first 6 months that I was undiagnosed .. I lost 43 pounds … and continued to lose even more weight … but I am back to my original weight .. due to massive doses of weight-gaining prednisone, until it was STOPPED.
Find a good doctor to slowly taper you off nasty PREDNISONE. My new MG savy doctor got me tapered off by December 2020 and on 10-25-2021, my other new DIABETES doctor got me tapered off of SHOOTING UP myself once or twice a day with LANTUS and INSULIN SHOTS in my abs, after 5 months in five hospitals, getting shot up at least once or twice every day in the hospitals and then by me (when I finally got out).
So use the support groups (google the MG Foundation website believe it is http://www.myasthenia.org … or its counterpart http://www.myaware.org for their locations) Both websites have plenty of downloadable fact sheets of dangerous drugs, info pages, and doctor/emergency room handout papers, to give to emergency crews and emergency or 911 help. I all but DIED … ACUTE RESPIRATORY FAILURE due to ANESTHESIA OVERDOSE. THE PACU nurse called a CODE RED on me and got me breathing again … after I was put down with two sedatives … for moving too much for MRI and CAT SCAN tests Be informed and stay safe … with help from support groups … they will help you and your doctors get a safe combination of meds. LIVE LONG AND PROSPER !!
May 16, 2022 at 2:03 pm #19169LISA MICHELE HALLParticipant
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!
May 16, 2022 at 2:04 pm #19170Gulshan K DuggalParticipant
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.
May 17, 2022 at 8:42 pm #19190
Rituxan- I was on it for 3 1/2 years. My side effects were unusual so my neurologist and the oncologist who administered Rituxan (since it’s a cancer drug) denied they were caused by Rituxan. I had extremely low blood pressure after treatment, chronic dehydration (which contributed to the low blood pressure), dry eyes (2 different ophthalmologists agreed it was Rituxan – tear duct plugs, prescription drops, overnight ointment, daily nonprescription drops,etc.). Short term side effects- 3days of low grade fever, sweating and chills alternating, diarrhea, extreme headache. But overall, it did help some with MG. I dropped from 300mg Mestinon every 3 hours to 120 to 180mg every 3 hours. However, I have developed severe breathing problems no one is willing to say it’s from Rituxan but it is a side effect. I took myself off it (diagnosed 40 years ago so yes, I do think I know what is better for my body) and new neuro who has me on Hizentra. I’m a little better. I can’t have IVIg since I get aseptic meningitis every time. I had severe side effects from cellcept, tacrolimus, prednisone, imuran, and PLEX.
Good luck with the roulette wheel of drugs.
May 18, 2022 at 11:00 pm #19203Jane DeLisleParticipant
I read through the thread and unless I missed it, nobody mentioned Mestinon Timespan 180mg. It is an extended release version that is good for about 12 hours. I don’t know offhand what the equivalent dose is for the regular Mestinon. My family member who has MG has struggled with the rollercoaster effects of the regular Mestinon which has a half life of 4 hours (which would require taking it 6 times a day to avoid the worst of the rollercoaster), and found the extended release version has been very helpful. Muscle fasciculation (spasms/twitching) can be a sign of too much Mestinon at once, lowering the dosage and taking it more often helps even out the rollercoaster ride, or switching to ER. Regular and ER can even be taken together if the ER dosage isn’t exactly what is needed, the neuro can help calculate a hybrid dosage. Regular tablets can also be split to reduce dosage (ER cannot be split).
Note that Mestinon is extremely hydrophilic, meaning it sucks up water from the air like crazy. I don’t know if that makes it less effective over time, another question for the neuro (or pharmacist), I’ve seen tablets blow up to twice their size in the span of a month. So in humid climates, one may want to purchase extra little desiccant packs and add them to opened bottles, avoid opening bottles until ready to start using them (they seem to behave when the bottle remains sealed), and if possible try to avoid the 3-month subscriptions that pharma and insurance wants to push on us.
Mestinon magnifies the power of the neurotransmitter acetylcholine. While the muscles affected by MG have one type of ACTH receptor (nicotinic), the autonomic nervous system such as digestion use a slightly different ACTH receptor (muscarinic), and Mestinon can amplify both. Family member was also suffering gastroparesis and Mestinon helped greatly with that. Others who still have normal digestion and other normal ANS behavior might have side effects from the Mestinon.
As for treatment, everything I’ve read (being a caregiver) ranks a progression of treatment options:
Mestinon is a band-aid. It improves the communication signal at the neuromuscular junction to reduce weakness, but it does nothing about the auto-antibodies attacking the NMJ. (MG is an autoimmune disease.) The immune system remains out of control and the patient remains hostage to the whims of the immune system.
Prednisone is a start at controlling the immune system and the production of those auto-antibodies. It is not a good long term solution but can be very helpful while other treatment options are sorted out.
DMARDs are drugs that modify the immune system and try to reduce its production of auto-antibodies. CellCept is one, Methotrexate another, and Azathioprine another.
Biologics such as Rituxan are “smart bombs” that are designed to interfere with specific steps of auto-antibody production or attack, mileage will vary here too.
IVIg adds other people’s antibodies, I don’t think doctors are quite sure how it helps but it may have something to do with getting one’s own auto-antibodies under control. Plasmapharesis cleans antibodies out of the bloodstream, including the auto-antibodies, the fewer that remain, the less mischief they can create.
Thymectomy is the nuclear option. The thymus gland is the master programmer of the immune system. It’s supposed to program the adaptive immune system in childhood, then retire at puberty. For some (like my family member), it became faulty and did not retire, one only knows what that bloated mess was generating in the way of autoimmune cells.
I am amazed at the speed of research into MG, and somewhat disheartened that all this information is so slow to percolate down to the neuros practicing in the field.
May 20, 2022 at 3:15 pm #19218Dev keshavParticipant
I can understand what you’re going through because I was also taking 30mg mestinon as you were. In the beginning I was okay, but then my eye drooping got worse. I was afraid of having a cholinergic crisis if I took more . I then self medicated and increased my medication to 3 x 60mg daily. My cramps were really bad and swallowing difficulty just before taking my next dose. O then took a tablet cause hyascine for the cramps. It helped. But my symptoms did not get any better. I hadn’t seen a neurologist for about 2 years, but it was too much so eventually I found a neurologist who could assist me. He explained everything about MG and the treatments etc. I am now starting on a new course. Mestinon still 3 x 60 mg daily, Azathiaprine 100 mg nice daily, and prednisolone on an increasing dosage every week until I get upto 60 mg per day. I believe that this might help, and will wait to see. His explanation was that a steroid and immunosuppressant together with mestinon should help, though it will take some time for the effects of azathiaprine to be notice. He also mentioned plasma exchange etc are normally for for a quick result during a crisis. I know we are all different, but I was really afraid to change to different meds or increases. I just accepted suffering with cramps and swallowing problem. Hope you can find a solution to help you.
May 20, 2022 at 9:33 pm #19224
I was on Mestinon ER for many years. Yes you can split it in half if needed. It’s hard to regulate adding 60 mg tablets with it since the ER is variable.
i stopped using it completely when the price went to. As far as I know, there still is no generic.
May 20, 2022 at 8:04 pm #19219Pamela D England-MooreParticipant
First, I would like to say that ANY doctor prescribing a medication for which he/she doesn’t even “know why” you get your specific side-effectives of mestinon shouldn’t be prescribing it.
When I was first diagnosed with MG some 30+ years ago, I was told that the nerve “message” couldn’t stimulate my muscles because the antibody prevented the message from connecting to the muscle. By taking mestinon, more active, non-antibody interrupted places became available on my muscles that there was a better chance of the message getting through cleanly. However, the side effect was that at times, too many spots were activated which manifested in the “jerky” movements. For me, it caused my intestinal muscles to “jerk” and I had constant constipation. After about three months on mestinon, I had an MG crises and was put in the hospital for what is now called “PLEX”. My blood was removed from my body and the plasma was separated out. I was then given new plasma which was free of MG antibodies.
Soon after that, I was taken off of the mestinon and put on prednisone which eventually caused severe complications on its own. I later found out that mestinon was never intended for long-term use for MG.
I was eventually prescribed Azathioprine (Imuran). It took many years to get me to a theraputic level, but have been “crisis-free” for many years.
Again, no doctor should be prescribing medications that they have no idea what the side effects may be.
May 20, 2022 at 8:42 pm #19220NormParticipant
I have been trying to taper off of prednisone, hoping that azathoprine alone will do the job. I’ve read (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6690491/) that the recommended dosage is 2-to-3 mg/kg/day. Is that the range of azathioprine that you have come to?
May 20, 2022 at 8:44 pm #19222michailParticipant
My neurologist taught me about mestinon dosage the following: it is incorrect to set a frequency of taking mestinon, i.e. 3 times a day, 5 times a day, etc. Mestinon works pretty much starting 45 minutes after taking and ends about 3 hours after taking it. After 4 hours its effect is almost nil. So to set one’s dosage one should really try different dosages and evaluate how one feels after about 1 hour. If it is a little bit too much, I personally may get intestinal symptoms… So my maximum dosage is about 120 mg (I am fat, 115 kg).
Now as to frequency – I take it “as needed”, so during day and activities that would be around every 2.5 -3 hours, if in bed, or similar, maybe one can get away every 4 hours. Luckily, I do not need it during night.
May 21, 2022 at 1:15 pm #19229Harold SummersParticipant
I’ve had MG now for around 8 years. I have an excellent Neurologist now who specializes in MG. I’m 73 years young presently and over the years my doctor has adjusted my Mestinon as required. I think you might ask your doctor to try the generic version Pyridostigmine Bromide 180mg XR. The XR (extended release) should reduce or eliminate your jitters. I take one of these, every 8 hours, and it keeps me on an even keel. I take them, as well as a bi-monthly infusion of Soliris which I can only afford because I am on Medicare. I feel my MG is now well under control and am able to enjoy my retirement even though I have MG. I think the XR medication might be worth a try for you.
May 22, 2022 at 8:04 pm #19231Karen LynaghParticipant
My husband became very easily agitated when taking pirydostamine/mestinon. There were times I felt I could do nothing right. It ended up making his symptoms uncontrollable. HOWEVER, he was a rare myasthenia sufferer, so do not take this input as advice. The medical staff listed it as a drug that he was allergic to – a cautionary statement is all I wanted to add.
May 26, 2022 at 12:39 am #19246Robert PerrouParticipant
I have been lucky, for the last 3 years I have been taking 240mg of Mestinon with none of side effects that others have mentioned. In addition, I take 200mg of Imuran and 10mg of Prednisone. So far no side effects to speak of.
May 26, 2022 at 1:00 am #19247
Wow, I’m really impressed that you have no symptoms from either the prednisone or the Mestinon. You are really lucky. Currently I am on 5mg Prednisone and 180 mg Mestinon ER (extended release). I take the prednisone in the a.m. and the Mestinon a little while before bedtime (around 7 p.m.). The prednisone causes increased appetite (with weight gain), acne in various body sites, and some other minor issues. The Mestinon causes significant G.I. problems, especially in the morning (diarrhea, constipation, etc.), muscle cramping and twitching, and night sweats. The good news is that I’m currently (for the past 4 months) in remission for my MG issues, so the trade-off is definitely worth it. Again, you are really lucky not to have any symptoms. Good luck!
May 26, 2022 at 2:04 pm #19248Robert PerrouParticipant
Glad to hear that you are in remission! Hope I can achieve remission some day and get rid of these drugs.
May 26, 2022 at 2:54 pm #19249Jerry JohnsonParticipant
Sawyer, sorry you’re having issues. I was diagnosed a year ago and put on Mestinon. I take 120mg four times per day. It usually starts working about an hour after taking it. I also get severe stomach cramps if not taken after eating.
May 26, 2022 at 3:21 pm #19250Joe MrazParticipant
I had the same problems, however when I got up to 10 Plasmapheresis 2 to 3 days apart. I was good for 8 months without any Pyridostigmine. I just finished second round of Vyvgart which is great. Be proactive and have your doctor prescribe it immediately. A few months ago I was in crisis, checked myself in hospital in Chicago, was fed via tube for 4 days. After Vyvgart I dropped the Pyridostigmine (Mestinon). My neurologist told me to take it only if I need it. It was affective only for an hour anyway. Now I am taking only 10 mg of Prednisone and nothing else. I lost weight, tough to regain it back. Some neurologists and more proactive than other. Also it may depend what city you live in and the doctors experience. Interesting that people on this forum seek recommendation but do not mention where they live. I am only 72 years old so any inner neurological trigger starts the MG facial, throat, tongue and lips malfunctions. Hope this info helps.
May 27, 2022 at 4:57 pm #19251Andy CoyneParticipant
I’m taking 120mg 5 times a day and 15mg of prednisolone a day. I get similar side effects but they are worth putting up with to get them”relief” that mestinon gives me. It’s a weird disease and sometimes difficult to come to terms with. I think, personally that 30 mg is a very low dose and even 60mg, widely regarded as the standard dose, is low given that your also having IVIG.
May 30, 2022 at 3:55 am #19256FayParticipant
Hi I have been taking Mestinon 3 times a day for more than 7 years now and have none of the side effects you are referencing. Basically Mestinon has been a bit of a lifesaver for me.
If I don’t take it I have difficulty swallowing but otherwise ok. I get CFS with my MG anyway and have pre taking Mestinon so I know that is not causing it. I also am very skinny but I have a few extra Auto Immune’s that seem to keep me slim. Hope you find a resolution to your issue.
May 30, 2022 at 11:10 am #19257Jerry JohnsonParticipant
I just went through first round of Vyvgart. It worked great. No more symptoms. Lasted just over a month. Symptoms are starting to come back slowly. Will be starting second round in a couple weeks. Actually can’t wait. Works fast. Took two days to kick in after first trtmnt. Wonderful stuff.
June 4, 2022 at 10:06 am #19278
So far this discussion has mainly talked about MESTINON, as well as PREDNISONE that is a more dangerous side effect for me, that they were able to taper down and KILL.
I have been in remission for 15 months now. I have always taken 180 MGS (3 of 60) daily of Mestinon/Pyridostigmine Bromide and 2oo0 MGs (two 500 in am and two 500 in pm) daily of Cellcept/Mycopenolate Mofetil. I have had only my original diagnosis dosage of 5 hours for 5 days of IVIG treatment once. I have had no side effects, besides afternoon fatigue, and acute onset insomnia, since they killed my PREDNISONE. So I guess this CELLCEPT is keeping me alive. Talk to your doctors, and join and ZOOM with MG SUPPORT GROUPS. They will tell you who the GREAT MG DOCTORS are, and what info on your ZOOMs … you find works for the other ZOOM MG members, that you are meeting in your online ZOOMs. I do not know why I am in remission, but these drugs work for me … and I had three MODERNA Shots for the “PLAGUE from CHINA” .. and no ill effects. BE INFORMED TO STAY ALIVE.
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