[DocTim]

I have just completed Dose#2 Vyvgart infusion. It must be working… I have had 106 IVIG infusions since Dec 22… every 3 or 4 weeks & needed every one of them – also Cellcept & Mestinon all that time. It has been 6 weeks since my last IVIG, and anecdotally there is no way I should have the strength of speech I now have.

After the 2nd dose, my BP was up some at night & I was exhausted about 2 hrs earlier than normal sleep time. Cautiously optimistic about its success for me. Thankful for good care thru’ VA Heatlh & a great nuero.

[DocTim]

Trazadone is very affective and safe for MG patients according to my PCP & Neurologist.  Works great for me.

 

TL

[DocTim]

Stroke-like symptoms Sep 4, 2020… Sent home to recouperate.  Problems got much worse within 3 weeks, brought back in for Nuero blood work… Told I have MG on Sep 25th.  Thankful for quick diagnosis.  I know with many, it has taken months, even years.

[DocTim]

I take a bunch…
Vit D, E & C
Fish Oil
Zinc & Quercetin
& Low Dose Aspirin

All except Quercetin recommended by my pharmacist team.   Don’t know of any that particular help with MG issues, but thankful I’m staying healthy and getting through a dangerous winter flu season.

[DocTim]

• Very glad that my Rx is sent thru US mail from VA Health.  Great benefit since it would mean so many trips to the pharmacy. Most of the prescriptions are 90 days as well, which makes my Pryodistigmine & Mycophenolate packages pretty large.

[DocTim]

I pretty much echo CRAIG’S response. Very confusing situation.  I have very active MG & am on immune-suppression, but at 70yrs I am too old to hide away, lock down & let this bug get me depressed or fearful.  I have 1x Moderna – got a MG flare from it & didn’t want the 2nd.  My wife is unvaxxed & got covid last year – suffered like many at home for about 3 weeks until it passed.  Somehow it missed me or was so mixed in with my MG problems I just fought thru’ it.  Never had a positive Covid test.

All through this time I have been in public when necessary, traveled, visited family, gone to church, etc., masked when required, avoided it when possible.  I have a personal vitamin/supplement regimen I have taken through all this that I believe is helping to protect me.   I get up, go to work, exercise & try to eat right, take my pills and trust God for the rest.  I’m glad for the vaccines, I take all kinds of them for flu, etc., and I would like to have a vaccine for this bug I feel confident about – maybe after the whole truth about the virus, infections, vaccines, etc, comes out I’ll look at it again.  I too am convinced there are a lot of lies out there about origins, mask efficacy, death numbers, and so on.

This is just my story and my opinion, for what it’s worth.  I do not disparage anyone with a different take on any of this.  God bless you one and all.

 

[DocTim]

THANK YOU, Jodi, for your comments about Mycophenolate.  I am in my 9th month of use at 1500 mg/day.   I have had no adverse reactions to it, but always appreciate warnings and follow-up info.  The point about increased cancer risk is certainly worth investigating.  My neurologist really wants to avoid steroid use for me, so this is his choice.  I’d love more info/stats on the cancer risks.  I’ll look into that some more.

I am also taking Pyridostigmine (480mg/day) & have IVIG every 3 weeks.  This regimen has brought me from a very low place to maybe 75-80% former strength.

Strange disease, eh?  I really appreciate this forum and all your work and input.

[DocTim]

RICK FEDERMANN … You are so correct about the short attention span of folk. Even those who really care about me and want to help need a lot of re-education.  I sometimes resort to a frequent movie line, “it’s complicated”.

My wife asked me a few times in public at first how I was doing, do I need a break, etc..  Thankfully, we came to an understanding about that.  I’m 70 yrs, but have had & still have energy for work, golf, travel.  My MG has been managed from a very low place one year ago to a very manageable situation today.  I’m grateful for the therapies and help I’m getting from VA Health.  They do seem to get it and are extremely supportive.

This forum also has been a tremendous stress reliever for me. When others don’t understand, it’s good to talk with people on the same journey.

God bless & all the best to you.

[DocTim]

As a pastor, I’m in front of people all the time. I have good days and bad. My MG is generalized and affects my speech first of all.  I make the best of it with humor and speak as long as I can do so plainly. Folk take it well and seem to understand.

I have not had others make jokes at my expense and don’t know how I would react.  I’m sure I would not like it and would struggle with a good response. I guess I would try to assess whether they were trying to be helpful or hurtful. Some make poor jokes when they don’t know how else to respond.

I do believe that self-depricating humor works well and keeps you from feeling sorry for yourself.  I think others appreciate the honestly and the attitude.

Laughter is a great stress reliever and ice breaker. It can also disarm the  critic. Use it if you are able.

[DocTim]

Had my IV chest port put in this morning.  In IVIG clinic now. I come every 3 weeks for 2 days. Pretty sore right now from installation procedure, but expecting much smoother infusions with this port. No more IV Team vein search missions or arm pain. Hoping soon to stretch out the need for infusions and one day skip them altogether. Until then, I’m thankful for good care from Neuro & Infusion teams at VA, Indy

[DocTim]

I’ve slowed down sharing much about my MG struggles or treatment.  So few can grasp it.  I often get, ‘glad you’re getting over it’ when I have a good week. Hard to know what to say sometimes. Thankfully, I have a very loving and helpful wife who has studied this thing and knows the journey I’m on.

Everyone needs someone who gets it and will listen to the updates and concerns. This forum can serve that purpose to a good extent. Lots of good advice and encouragement here.  Thanks to all who moderate and share.

[DocTim]

Ella, thank you for sharing your story. It was very encouraging to me, since my IVIG journey is only about 9 months old. I am to have a chest port put in for my infusions this coming week. Like you, my veins got weary of the IVs, and it looks like I’ll need these infusions for some time. It seems like you spend a lot of time in the infusion clinic. I go for 2 days every 3 weeks. I’m hoping that I will improve enough to stretch that time out some.

Some have had bad experiences with IVIG, but mine is much like yours. No real issues except some fatigue for a little while after. I’m thankful for this treatment, and it has helped me get back to about 75-80% of my pre-MG diagnosis strength level.

God’s blessings for you as well, and continued strength and health.

[DocTim]

Jerry, thank you for sharing your experience with MG and with IVIG treatments. One of the interesting things about MG is how differently it affects everyone, and how differently the various treatments help or hinder. It seems that indeed no two are alike.

I’m glad you have found a regimen that works best for you. I was diagnosed with MG last September. I have learned so much since then about the disease, it’s effect on myself and others, as well as the variety of treatments. I have generalized MG as well. My issues are mostly with my speaking, chewing, swallowing, and breathing… All pretty important!

Mestinon was my initial therapy, later some IVIG was introduced, and later still I started on Mycophenolate. I have a tremendous neurologist who has guided me through my dark days to a very good spot now. My improvement since my low point last fall has been nothing short of amazing.

My flares now mostly involve my speaking strength. I’m a public speaker, and so this has been a real challenge for me. I am 11 years younger than you, so I appreciate your courage and strength and endurance.

I wish you all the best. Like you no doubt, I’ll be glad when the temperature lowers a little bit. These hot days are very hard on we who suffer with MG. Particularly, as much as I like to get outside for yard work and golf.

Be well and safe.

[DocTim]

THANK YOU STANLEY…

I am happy you found something that sustains and strengthens you in your MG journey.  I have read some about the plasma therapies but have not discussed them with my nuero’.  I am having a port put in next week – not sure if it’s a shiley port or not – but it sounds like the same thing.  I’m having it placed because my veins don’t like the frequent IVs.  I was asked early on if I wanted a port, and declined for personal reasons, but now it seems necessary.

My treatment is helping me much the way you describe your experience with plasmapheresis.  My Rx and the regular IVIG treatments have me on an upward strength trend.  I can basically decide the IVIG schedule according to how I feel.  I’m hoping to stretch it out soon to 4, even 6 weeks apart.  I’m not sure I would want to interrupt that right now.  If my situation changes, I would certainly be looking for alternatives.

I receive all my care via Veteran Health – my neurologist has been amazing in guiding me through this adventure. My Pri-care Dr always defers to him about my MG.

I’m do not know if the therapy you use is even available to me in the VA system, but if the IVIG slows my progress or causes issues, I would be asking questions about it.

Thanks again for your encouragement & best to you as well.

 

[DocTim]

Makes very good sense, Theresa.  MG and other autoimmune conditions don’t react in normal ways to infections or inoculations.  So hard to figure out what to expect and find the best way forward many times.  I’ve often wondered if my Shingles Vaccine a couple years ago activated a dormant MG in me.  It was about a year after that that MG hit me hard. May never know, but always investigating links.

[DocTim]

Interestingly, an autoimmune researcher suggested one reason…  “With rising awareness, humans have created more sterile environments around themselves, especially in developed countries. The immune system of growing children in such countries do not get exposed to enough bacteria (both, good and bad) and is thus more likely to act up.”

This may have some merit, as well as increased stress. The American Psychological Association reports that 44% of Americans have reported increased stress over the past 10 years, which we know is a big mover for MG and other maladies.

So, send the kids outside to play & chill out.  ‘wish it were so simple.

[DocTim]

Ronald…

I have generalized MG, diagnosed only a year ago.  I have been using a CPAP for apnea for 12 years.  After MG hit me hard last year, my breathing was very much affected.  I still struggle with breathing through my nostrils  The only thing that allows me to get any sleep at night is the help of my full-mask CPAP.  I don’t even take a nap without it.  Good sleep requires good air flow – the CPAP will be adjusted to your need.

My advice is to get tested and fitted for one as soon as possible.  It will not hurt you, and almost certainly will help.

Best to you. Stay well & safe

Tim L

 

 

 

 

 

 

[DocTim]

Amy… I just finished 30+ dentist visits with way too much Novocain and drilling, etc., for a palatal lift to help my MG weakness. I got stronger throughout my ordeal because of my treatment program and did not see any added weakness due to dental work. I had a bridge replacement, tooth pulled, crowns redone, and a lot of mouth stress over 9 months.

Of course, everyone has a different level of stress with dental work… always our enemy.  That might be your biggest culprit.

There are some antibiotics that dentists use that MG patients should not take.  Check with your neuro or pharmacists about those.

All the best to you.  Stay safe and well.

 

[DocTim]

Courtland…  I completely understand the mumble-mouth problem.  That is my first MG difficulty. I also speak for a living (pastor) and have to ration my words to get through a 30 minute message.  I have cut back in many areas to accommodate.

I am on a pretty aggressive therapy….  8 or 10 pyridostigmine/day, immune-suppression, and 2 day IVIG every 3 weeks.  That keeps me able to work full-time and function at home.

My triggers are heat, stress, and fatigue. I have to guard against all these.

All the best to you going forward. Glad you’re able to continue doing your job. Stay safe and well.

[DocTim]

Hello Stephanie…

Thank you for posting on here. Every story is different and interesting. I have a couple questions. First, how did prednisone affect your mental status? Secondly, why did you reduce your Mestinon? Did your symptoms fade?

I’m one year into my diagnosis and have been on Mestinon from the beginning. After some weeks and worsening symptoms, I began IVIG infusions. Later, an immune suppression Rx was added. All of these together have gotten me back to a fairly strong place 1 year later.

It is unfortunate that you cannot keep in contact with your neurologist. I am happy to have an amazing doctor who is always ready to answer a question or help me with my treatment. I believe you should do what you can to seek out a neurologist who cares about you and wants to help. That would be the first thing I would do.

In the meantime, I believe that I would take the full dose of Mestinon prescribed. There are a few downsides to Mestinon. Prednisone, on the other hand, can have some serious side effects.

Also, One of the greatest enemies of MG is stress. Having that lymphoma removed must have caused a good deal of stress. I would imagine that played a huge part in your flare-ups.

I wish you all the best… Keep posting.

[DocTim]

Lou… Thank you for your note & encouraging. I believe you are right… I certainly won’t miss the vein IVs. The IV team at Roudebush is excellent but was about to tell me they couldn’t service me anymore. The port install is healing fine.

I will likely be on a 3 or 4 week schedule for IVIG for a while.  Also, when I need to do blood draws, I try to schedule them with my IVIG visit & my Pri-care sends the orders to infusion clinic.  Saves me a stop downstairs.

My next visit is next week, Sep 29-30.  I show up when they open the doors about 7.30.  Would love to meet you & say hello.

[DocTim]

Hello Rina,

I can sympathize with you about the problems of heat. I live in central Indiana, USA, and our heat in summer is similar to yours.  I also suffer from small doses of it.  I’m glad you have a pool to relieve and refresh yourself. I retreat to the AC or shade. I work outside or golf in the mornings or late afternoon. I’m thankful to be able to work around most of my debilitating symptoms.

We are entering Fall just now, and I will be glad for the cooler temps.

All the best to you and yours. Stay well and safe.

[DocTim]

Hey Ronald…   Your regimen similar to mine, except no prednisone for me.  BTW… IVIG is a big boost for me, too.  I don’t like the chair – 2 days every 3 weeks for me, but I can really tell the difference afterward.

Sorry for confusion – by ‘cheating symptoms’, I meant that I sometimes go out in hot sun when I know better hoping for a good result (rarely get one) or I sometimes press on when symptoms appear and I should back off a little.  For me, it’s my speech that gets hit first.  My voice wears out after 30-40 minutes… and public speaking is a main function of my job (I’m a pastor)

I think we’re all learning about MG.  I’m only one year in since diagnosis – but, I had many weeks last fall to do little else than research what was happening to me, and how I can best face it.

‘Day by day with a lot of forbearance and prayer.   This forum is also a great place to learn from others.  Glad to see you on here.

[DocTim]

Ronald… what medicine therapies are you on?  How much have they helped you since diagnosis?

Sorry for all your pain and discomfort.  Sounds like every day is a real struggle.  I am blessed with mostly good days now.  My rough days come when I ‘cheat’ or ignore the triggers.

All the best to you & yours.