[Alan Bridle]

I think IVIG response is very personal, i.e. we all differ in most of the details.

I had no negative effects from my first in-hospital infusions (a several-day series after three weeks in an ICU with an exacerbated myasthenia crisis)

I then had a course of outpatient IVIG infusions to which I had no negative reactions at first, and also no noticeable improvements in my MG symptoms, starting with a three-week interval and soon decreasing to a an eight-week interval. My post-infusion tiredness began to increase until it became debilitating, while I could see no major effect on my MG. Between the expense and the lack of obvious benefit, my neurologist and I agreed to stop the infusions, with no noticeable effect.

From reading this forum, I have seen that others have a very different experienve with IVIG and find it beneficial, if not essential.

This seems to be very much NOT a one-size-fits-all procedure. I reckon we each need to find out if it helps or hurts us, and also whether it’s worth the (large) expense of the infusions.

[Alan Bridle]

I have now been on 60mg x 3 pyridostigmine for nearly 2 1/2 years. For the first month or so I had terrible diarrhea and I also needed to take one dose shortly BEFORE I ate anything in order to be able to swallow safely and chew. This was a very bad regime but my neuro said to tough it out and it would improve.

It did improve, without changing my medication regime. After two months I was not having any more “emergencies” and I could resume some social life using imodium as a short term preventative for hurried trips to the bathroom, as well as wearing Depends. After about a year, the timing of my pyridostigmine doses was no longer as critical and the diarrhea had gone away completely. I still get bowel urgency and pass a lot of gas but the initial very gross effects of the pyridostigmine seem to have worn off, as has the need to coordinate taking the drug with mealtimes or for wearing Depends. If I miss doses, I will still notice worsening of my ptosis and my ability to hold my head up, but I no longer see major dose-timing effects on my swallowing and chewing.

I am 82 years old and my MG was late-onset (at 79) so my neurologist says remission is unlikely, but I am symptomatically stable and my body seems to have slowly adapted to the dose of this drug. I rarely have to take imodium as a preventative any more, but I will do so if I am going to events where quick trips to the bathroom would be a problem.

So I would recommend patience, imodium, and toughing out the unpleasant early adaptation phase of pyridostigmine. The early stages were rough for me too, but I now live a fairly normal daily routine apart from residual ocular MG.

However, we are all different in our symptoms and in our response to some of these drugs so there is no one-size-fits-all answer to our problems.

Good luck with your treatment whichever route you and your neurologist agree on!

[Alan Bridle]

I was diagnosed with gMG at age 79 and went into crisis a few days later (I had had increasing symptoms for several months, undiagnosed by my doctors … until I saw an experienced neurologist but then it was too late.  I had low oxygen and breathing difficulty, ended up on a ventilator in ICU and had five sessions of plasmaphoresis  there which seemed to do did wonders for my respiratory problem.   Also had double vision, chewing weakness and some swallowing difficulty.  They got me out of the ICU and on mestinon and 60 mg prednisone which helped my vision problems, chewing weakness, neck control and swallowing issues.   Had three sessions of IVIG  while still in the hospital so they could see if I had any bad side effects,   Was discharged with orders for IVIG every three weeks.  In my case saw no bad side effects – but also no noticeable benefit – from the IVIG so we dropped it back to every six weeks and then to every eight weeks.  Last couple of IVIG infusions I got very tired for two days after the infusion and had some unusual bleeding after the last one but still no noticeable benefit.  Have now stopped IVIG and see no difference in symptoms.  Am on reduced prednisone (10 mg) but also started Imuran since about six months ago.  I am now stable, breathing well and getting good blood oxygen levels but I still have some vision and balance issues, so I walk with a cane for safety.

I think IVIG must be another issue where we are all different in our responses so we each have to work with our neurologist to figure out what helps us and do that.   There is no turnkey solution for this condition at the moment.

I wish everyone here good luck and a good neurologist who will try to find out what works for YOU!

[Alan Bridle]

I guess the answer will – like most things about MG – vary from person to person, but my goal is to get my long term prednisone dose slowly down to the lowest at which I can tolerate my MG symptoms.   It will be great if that turns out to be zero but I suspect 5 mg/day may be more realistic.  I am currently on 10 mg/day and about to go down to 7.5 mg/day.

[Alan Bridle]

every day different

[Alan Bridle]

Without night time mestinon I was waking up short of breath and with low oxygen saturation so there was a reason to take it overnight.  I tend to get muscle cramps at the end of the day that seem to be affected by my mestinon dose timing, worse in the first hours soon after I take the 60 mg pill.  But I take a sleep aid when I go to bed so I can get the benefit of the better breathing while not being woken up by cramps.  I do get the toe cramps that someone else described here but they are easier to tolerate than waking up short of breath during the night.   I reckon MG is a little different for each of us so we each have to find a coping regime that works for us.

[Alan Bridle]

Jennifer – yes Mestinon will help you with your symptoms immediately but its effects are short lived.  You will need to take other medications, probably steroids and other immuno-suppressants, to handle your symptoms long term.  Difficulty breathing or swallowing while you are eating is something to be concerned about as it can turn quickly into a crisis, as I know from personal experience.  Mestinon will help you to eat if you take it shortly before each meal but it needs to be supplemented with other medications.  Your doctor should have a plan for your longer term treatment as well.  There is no quick permanent fix for myasthenia gravis, it’s a long haul for all of us, unfortunately.   We can live with this disease but we do have to adapt and make concessions to it.   There is a lot of good information in these Forums so you have come to a good place where people can share their experiences and you will see you are not alone at all in what you are confronting.

[Alan Bridle]

I followed the tips here to not take a mestinon dose late in the day.  I have not experienced severe cramping since and it is great not to have my hands “lock up” in cramps by the time the evening meal is over.

My neurologist was open to the idea that cramps and MG could be related but I reckon this is another area where different people experience different levels of symptoms so it ‘s hard o generalize.  It’s better when docs don’t dismiss our problems just because they don’t have a textbook explanation for them or see them in everyone, but that’s just one more way in which our mileage may vary.  What I read here seems to have helped me alleviate my cramping … so … thank you!

[Alan Bridle]

Tim – I am in a similar situation.  My red blood counts were on or just below low edge of normal before I was diagnosed with gMG.   I went into an acute myasthenia crisis shortly after my diagnosis after which I went on prednisone, Cellcept and IVIG infusions.  My counts quickly dropped well below normal.  My neurologist then discontinued the Cellcept and the counts recovered a little.  It looked like Cellcept played a role in my counts.

My PCP recommended that I also increase my intake of red meat and green leafy veggies (kale, collard greens, brussels sprouts, spinach, broccoli)  to get iron into me naturally.  After about six weeks that has also improved my red counts noticeably.  I am still not all the way back to “low normal” but the more iron rich diet has also helped and my PCP says I am no longer clinically anemic.   My neurologist now has me on Imuran instead of Cellcept and that has not had the same adverse effect on my red counts.

I was not a huge fan of all the iron-rich veggies by themselves but my wife has come up with a recipe for “iron soup” which I now have every day at lunch time.  That has been enough to close the gap in my case.

I hope this helps and I wish you luck.  It’s bad enough getting tired from MG without being anemic on top of it as well.

 

 

[Alan Bridle]

I was diagnosed with MG last November but now realize I had muscular symptoms for several years before that.  Over the same period I had also experienced occasional severe hand cramps, especially  late in the day.  I had an acute myasthenia crisis soon after I was diagnosed and I was then in a neurological ICU for several weeks.  I responded well to a combination of plasmaphoresis (plex), Mestinon, prednisone and IVIG infusions and my overall progress with symptom relief has been good since I left the ICU.  However, the hand cramps recently became much more frequent and more severe.  My fingers  can “lock up” in distorted bent shapes with a lot of pain and can stay that way for several minutes.  Heat helps to release the cramps but is not always quickly available.

Does anyone else experience severe cramping with MG?  If so have you found anything  that works well to relieve it?

[Alan Bridle]

Hi Amy –

It has taken me years to understand and accept that the “signals” from tinnitus are not going away.  In fact mine has steadily worsened with time (I get “bursts” of whistling/screaming that can last for just a few seconds or for several minutes, but never – yet – for hours).  The only “cure” I have found is that when I am rested I can manage to pay no attention to the “noises off” while I focus my mind on something else.  This makes it harder for me to hear “unexpected” inputs like a question from someone in the room, and it makes me appear a little deaf to friends – despite also having hyperacusis  (over sensitivity to loud noise).  But I am aware that I have now built a sort of mental filter for my tinnitus that it takes effort for me to keep in place.   By the end of the day it can fall apart so I can have vision issues and tinnitus noises to contend with simultaneously.

At that point the best answer – for me – has become “music therapy”.  I have always enjoyed listening to certain types of music, both classical and jazz, and I tend to end my day doing that now.  Listening to music that I know and love is a way to push tinnitus noise into the background without so much effort and I do not need to open my eyes to experience the goodness that favorite music can bring.

I was also in an ICU on a ventilator for nearly two weeks in myasthenia unable to speak or move much and blinded by ptosis for a lot of that time.   That remade my notion of what is “really not living”.  Ever since that, a day that I can see the sun come up and my wife give me a smile feels more like a gift for me to try to make the most of.   There are many things I have to do differently now,  and not getting too tired to function on any given day while still rehabbing physically is a new challenge.  But life is more challenging as we get older and most of us eventually need to learn to live at a different pace.  MG makes that  just more so for us than for others.  I try harder now to make something good happen to me each day so I do not start down the road of getting exhausted just by worrying about why things are not better for me.   Music that has special meaning for me helps me to do that.  I hope you will find something that will work like that for you.

 

[Alan Bridle]

Sawyer –

Welcome to this Forum where people who are dealing with MG long term can often get a different sort of help than we get from our neurologists because we are actually experiencing MG and all of its effects.

One thing to realize is everyone’s MG is a little different, as our bodies and immune systems are all a little different, so you have to find out what’s right for you based on your own experience.

Your neurologist should be more concerned about your side-effects than he/she sounds, so if you can’t get more advice or attention from them I would (seriously) look for another neurologist in your area.  You are looking at a lifetime of MG at your age so you will need top-class help to live a something like normal life with this condition.

Your current mestinon and prednisone doses are on the low side of average while your IVIG dose seems high. I would ask why you are on such frequent IVIG which is a pretty radical approach to this problem and has its own long term side effects.   Do you feel better after the IVIG infusions?

The most common side effects from mestinon are secretions (runny nose, damp skin, loose bowels) and diarrhea rather than what you are experiencing, and your dosage is low so I would be surprised if your mestinon is the culprit.  However I am not a doctor, just someone who has had 18 months of treatment including mestinon, prednisone and IVIG (as well as imuran immunosuppressant).   Your neurologist should not be passing your symptoms off because they do not understand them.  That tells me they are not as good a neurologist as you will need to get through the many years you are facing with this condition.  Be firm about getting your questions answered and your concerns addressed, and if they are not, start looking for another neurologist NOW.

Good luck, and best wishes

Alan B

 

 

 

[Alan Bridle]

I now understand why my neurologist ordered frequent blood tests at first when I went on Imuran.  I looks like I have been luckier, and I am doing better on Imuran.  One of the hardest things about MG seems to be how everyone’s case can be so different, so a lot of trial (and error) is involved in our treatments, even with very good docs on our cases.  Good luck with your treatments going forward!

[Alan Bridle]

Thanks for the feedback, Jennie.   It seems from other comments here that there is a lot of variation from person to person – like everything else in MG –  but my blood work says I am doing better on Imuran than I did on Cellcept.  Sso I am keeping my fingers crossed about seeing improvement when it has had longer to kick in.  It is good to hear from folks like you who it has helped!

[Alan Bridle]

I am 6 months into taking Imuran and not seeing either side effects or much improvement –  so I am interested to know what symptoms you found it helped with.

[Alan Bridle]

As I am now on Imuran after Cellcept decreased my RBC too  much. I am interested to know wihch MG symptoms Imuran helped you with … all of them or just some?  So far (6 months in) I have seen few side effects (compared to what others describe here) but I also can’t yet point to any obvious  improvement,

[Alan Bridle]

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

[Alan Bridle]

Hi Barbara

My neurologist and I were trying to time the benefits of the mestinon, which was helping me to breathe better at night when lying down and also to swallow my food better and more safely during the day, as well as relieving my ptosis and the vision problems that came with that. We went with taking 4 doses of the 60 mg regular pills because that let me try adjusting the dose timing myself according to changing needs.

That worked out well for me.

I am now less dependent on the exact timing of my mestinon doses relative to meals, as my chewing and swallowing are much improved.  I still try to manage evening cramps by having a longer interval between my afternoon dose and my bed time dose than the others, so the ability to adjust the dose intervals  still helps.

We all have to find which regimen works best for us and that may depend on how we individually respond to the drugs and what side effects bother us most.   I do well with the way I take the 60mg doses at the moment so I am still happy with that approach but that does not mean it would be the better choice for someone else.

As TheresaG said, “go with what works” … for you!

Alan

 

 

[Alan Bridle]

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.

[Alan Bridle]

Mike – I have the same issue with cramping that comes if I “point my toes” in bed.   I am on 4 x 60mg Mestinon daily.  My neurologist says magnesium supplements are not a good idea for MG patients and instead just to try to avoid movements that initiate the cramping.   I am now on some sleep aids (trazodone and seroquil) that help me rest better and move around less during the night and that has helped enormously – less time tossing and turning at night was the answer for me.

[Alan Bridle]

I have also seen a clear connection between my Mestinon dose and cramping.   Before I was diagnosed with gMG I sometimes got severe hand cramps in the evening after using hand tools in the afternoon, so I had a pre-existing issue with cramping.  Since I have been on Mestinon (60 mg four times daily) this has been much worse and I can get severe hand cramps just from cutting food and gripping utensils while eating.   I used to take one Mestinon dose before dinner to help with swallowing and vision issues during the meal but now (5 months into my diagnosis and treatment) I find I do not need that relief any more to help me eat.  Last week I tried taking Mestinon differently, with what had been my dinner time dose taken in mid-afternoon instead.  My hand cramping (after my evening meal) has completely gone away.  The effect was immediate and my neurologist acknowledges the possible connection even though he says he is unsure what the exact mechanism for it may be.

[Alan Bridle]

You are very welcome.  I have found it helpful to read how others with MG cope with this condition and its many frustrations so I am happy to try to contribute here as well.

[Alan Bridle]

So many posts on this topic have put “decreased energy level” at the top of the list of issues with MG.  I expect we all have good and bad days with MG so we need to figure out which kind of day we are having and adjust.  I got physically deconditioned in the ICU during mt “acute myasthenia crisis”.  I have had balance problems, needing a walker when tired near the end of my day.  One day last week I woke up feeling good and found my balance was super so I thought “wow, something really kicked back in for me”.  I was able to walk a mile on a pretty spring day using just a cane. I felt great, hoping I had turned a permanent corner.  Next day I almost fell over in the bedroom getting my pants on, staggered all day, ended it exhausted with blurry vision (ptosis gives me different fields of view with left and right eye so my brain gives up trying to reoncile the visual fields so I “see” a blur).

I felt angry because the day before was so good but listening to some favorite music calmed me down and I could be grateful for how I enjoyed the good day.

I reckon our “decreased energy” problems mean we have to learn not to waste what energy we have and to make our good days – or good moments in normal days – count as much positive as we can.  If I feel good I now try to do something I can savor and enjoy in the moment but not in a way that risks making me too tired to cope with the rest of that day. A nurse in the ICU told me “you must learn to pace yourself differently” to deal with MG.  I now understand what she was saying!

I take 60 mg Mestinon four times a day and Prednisone 20 mg once (reducing I hope to 5 mg longer term), also 50 mg Imuran twice a day and I have IVIG every six weeks.   But now I can chew and swallow properly again I think music I enjoy can be as important to my state of mind as these drugs are to my muscles.  Music also helps to “drown out” my tinnitus and a symphony or piano recital before bed helps me sleep better.   I had bad insomnia before my MG crisis hit but now I am sleeping well everything else is  (slowly) improving.

The ICU time taught me to be grateful for many things I took for granted before.  I hope you can find how to make your good days carry you forward too as good thoughts once or twice daily can be good  medicine!

[Alan Bridle]

I  sympathize with Amy because I also have severe tinnitus on top of my gMG.  I do not however think MG can have caused my tinnitus which began some years before any of my MG symptoms appeared.

My tinnitus has always varied with my level of tiredness.  I suspect this is because my “mental filter” that my brain uses to screen out my tinnitus signal requires some mental effort that is harder to exert when I get tired.  The extra tiredness I experience with MG may have worsened my awareness of the tinnitus, so I could say MG makes my tinnitus harder to tolerate.   But I do believe it is mainly because I am now feeling more tired more often.