[Frank]

I’m so sorry that you are having such a horrible reaction to this mostly helpful drug. I’m getting ready to begin my adventure with it within the next 2-6 weeks. I’ll pay special attention to anything that could be a side effect and let you know. I generally do pretty well because I stay on a plant-based diet that is also worked to be a low-inflammation diet. You may want to google “foods that cause bloating” so that you can see if any of your “regular foods” may need to be restricted just before and after your infusions. I’ve been amazed at some of the changes in my body and emotions that occur after modifying the types of food I take in. Take care and healing energy to you!

[Frank]

I’m sorry I missed your question about the diet I follow. I eat plant-based and I think that allows me to tolerate the impact of my MG better. But that may be just me. But even if I wasn’t plant-based I’d follow a low-inflammation diet for several reasons. 1) an expert in aging told me that “an inflamed stomach is an inflamed brain and inflamed body.” Looking up the impact of an inflamed brain I found that symptoms of that include: cognitive issues (which resolved when I went on this diet), depression (which also improved greatly when I went on this eating routine), as well as the accompanying gastric issues. When I was getting started, I was constantly conferring with Dr. Google with questions like 1) what foods are good for a low-inflammation diet, 2) what foods should I avoid on a low-inflammation diet, and 3) questions about specific foods like: “Is watermelon inflammatory” or “are black beans inflammatory.” I was caught off guard with answers several times that were opposite from what I expected. For example, a good amount of citrus fruit is actually safe to eat on a low-inflammation diet.

As far as Vyvgart, I had my 3rd infusion 3 days ago and so far I’ve had no negative side-effects. I am lucky that I generally respond quickly to medications and after the first infusion I was feeling a bit better. Now after 3, I feel like I have more energy both mentally and physically. I think it is really helping me. I’m sorry you are having or had such a negative experience with it.

I hope you have a great weekend and find the perfect meds or life-style that makes this disease easier to live with.

Love and Light,
Frank

[Frank]

I was in an 18 week study in which we were testing manual and automatic delivery methods for delivery of the rosanolixizumab. I found the treatment very helpful. I had much more energy physically and mentally and generally felt better.

However, it totally tanked my immune numbers. At one point my IGg level was in the 90s; normal is 565 to 1700. We had to skip an infusion and when my IGg came up we started again. We did that a couple times.

I thought the drug provided a great treatment, except for the immune ramifications. So if you try it, make sure that you have regular check ups on your immune numbers. We checked mine every week.

Good luck! Love and Light,

Frank

[Frank]

Hi, My mom was diagnosed with MG when she was about 72 (I was diagnosed at 70, 2 years ago). She died about 2-3 years later from the disease. I have seen that many of the meds and treatments now available were also available in the early late 80s and early 90s before she died. So, I’m thinking that she had a neurologist who had no idea of how to treat her disease. I’m glad that I have a fabulous neurologist at the University of Kentucky which is a research and training hospital.

Other than mom, I don’t know of other family members with MG, but my grandmother had rheumatoid arthritis which is an autoimmune condition. MG DOES seem to show up more frequently in families than you’d think a “rare disease” would that wasn’t genetic.

[Frank]

Dear Jonathan,

I’m sooooo sorry that in addition to dealing with MG you are having sleep issues.

My neurologist who IS an MG specialist has me on melatonin to help me sleep and has no problem with it. She took me off other drugs I used for sleep because they were contraindicated for people with MG. I’ve not had any problems with it at all.

I also take trazodone for sleep. It is labeled primarily as an-antidepressant, but is commonly used as a sleep aid. My neurologist is fine with it and upped me to 150mg before bedtime. It helps, but if I don’t take it, I don’t sleep much at all.

Sadly, I think your issues are your Cellcept. A dear friend has lupus and has been on Cellcept for years. Unless she takes zolpidem (Ambien) she can not go to sleep. Even in she’s totally exhausted she won’t sleep without Ambien. Sadly Ambient is NOT a drug for people with MG because it can reduce lung strength (or something like that). Another of my go to supplements–valerian root–doesn’t work because it is a muscle relaxer and that is NOT something for people with MG to take. The same goes for the prescription muscle relaxer tisanidine which helped me.

I’m sorry to be of no help and all I can suggest is to keep researching. Maybe some research centered on side effects of cellcept could help. None of my friends doctors are surprised she has sleep issues because of the drug, but no-one has suggestions other than ambien.

Best of luck!
Frank

[Frank]

Hi, Nichola!
I’m one of the lucky ones that has drugs start working pretty quickly. I’d say the prednisone probably started within the day, the second day at the latest. My experience has always been that prednisone works pretty quickly, but maybe that’s just for me. I was lucky and only gained 10 pounds on prednisone over 9 months and now that I’ve been cutting back I have about 7 of those pounds back off.

I did just notice last evening, after I’d begun cutting back my mestanon from every 4 hours to every 5+ hour (cutting one dose out per day)  that I started having my high eyelid start drooping. So, I’ve gone back to every 4 hours and my eye is no longer drooping, or if it is, it’s just a tiny bit.

For me Mestanon is “my” drug and prednisone is more of a rescue drug for when I’m having problems.

I hope this helps and I wish you luck.

Love and Light,

Frank

 

[Frank]

Hi

I started with OMG with double vision and right eye diplopia. 90 mg of mestanon 6 times a day took care of it. 1.5 years later I’m on 60 mg 3-4 times a day and it’s never come back. I did move into GMG though. Because of a mg flare I went on 20 mg prednisone once a day. I’m down to 1 mg a day and next week to 0 mg.

Never had double vision come back. I have a great neuro at a university research hospital.

In reading this and other threads saying mestanon doesn’t help diplopia, it seems to me a lot of neuros are not prescribing either a high enough dose or aren’t prescribing enough doses per day. You can take 120mg 6 times a day and be fine.

Well that’s my experience. Best of luck!

Love and Light
Frank

[Frank]

I’ve been told ambien and other sleep aids are dangerous for MG Patients, so that’s not available to me. I take 150mg of Trazadone at bedtime and that helps. Kentucky is not a state that has medical marijuana so, though that helps with sleep, it’s not easily available.

But what I found that helps me a lot is hemp derived Delta 8 THC. That is legal in KY and most other states as long as it has less than .3% THC. You can get it in tinctures, vape tubes, gummies and other edibles as well as infused hemp flowers. I have a dry herb vaporizer that I use to vape Delta 8 flowers when I go to bed and I’ve been sleeping much better than I have been.

Thanks for this discussion.

Frank

[Frank]

Hi!
This is an interesting discussion and it sure does look like it is hereditary! My mother died of MG at 75 after being diagnosed at about 72. Her neuro didn’t know much about MG I can see in looking back at it. He just treated her prednisone even though Mestanon and other therapies were available at that time. She spent 12 weeks on a respirator and died a few months after she was taken off it. She did a “Do Not Resuscitate” so she wouldn’t have to do that again.

I was diagnosed just over a year and a half ago when I was 72. I have a great neurologist and a doing fairly well at this time. I haven’t had any crisis. No one else in my family that I know of has had MG or any other auto immune diseases (well, other than my wife who has lupus, but since we aren’t brother sister or otherwise related, that doesn’t count!! ;->

[Frank]

Hi, I went from 10mg of prednisone to 9 in mid-February. Took 9mg for 2 weeks, then 8 for two weeks, then 7mg, then 6 and 5, but with 4mg I was slurring quit regularly and went back to 5mg. Any time I try to go to 4mg I slur even if I do it between two days at 5 mg.

It’s frustrating! I’ve been on prednisone for about 9 months and have only gained 10 pounds (175 to 185) but have had to really work not to gain more. I’d love to get off prednisone so I’m not fighting weight gain all the time.

Good luck in all your weaning adventures!

Frank

[Frank]

Hi

I started with ocular and moved to generalized MG within 6-7 months. When I started my neurologist who specializes in MG put me on 60 mg mestanon 6 times a day. When that didn’t help she upped me to 90mg 6 times a day and that helped.

also when I have a day that’s going to be extra physical I can take 120 mg for that day.

prednisone IS a miracle drug, but for me it’s long and hard to wean off of it. I’ve been trying to wean off 10mg a day for several 3-4 months. Couldn’t get below 5mg without issues popping up. Now we’re try a new system and if it works I’ll be off prednisone sometime in July. I gain weight on prednisone and there are other issues with it so it really shouldn’t be the first drug to fall back on when the mestanon can easily be increased in dosage and number of doses per day.

best of luck to you!

Love and Light

Frank

[Frank]

I was on my way to a wedding and noticed I suddenly had double vision. This had happened once before and went away quickly. But this continued for the rest of the day and I decided if it didn’t go away after a good night’s sleep I’d get it checked out. On Sunday morning I woke up with double vision and headed off to the emergency room.

They wondered if I was having a stroke and did lots of tests and discovered I hadn’t had one. The did the ice test on my eyes and gave me an injection of Pyridostigmine and neither of those indicated I had MG. So after over 24 hours in ER they sent me home and told me to  see my PCP.

He had blood tests done and it turned out that I had a lot of antiACH receptors antibodies. So, then the journey began with my docs. Luckily I have a fabulous neurologist that specializes in MG and things have been OK since then. My life is totally different and I can’t do many, many of the things I enjoyed doing previously. But I’ve to had any crisis or any bulbar symptoms other than some slurring of words when I did tooo  much.

Since my mom died of MG in 1995, I was pretty worried about my diagnosis but my neurologist said treatment options are very different than they were nearly 30 years ago and that what my mom went through just doesn’t happen any more.

Thanks for asking!

Frank

[Frank]

Dear Robert,

Thank you for sharing your story. I’m sooo sorry you have had such a hard time with your myasthenia. Your NEVER GIVE UP attitude is a good reminder for all of us. Thank you!!

Love and Blessings,
Frank

 

[Frank]

Hello,

As others have said there are scholarly articles that say that autoimmune conditions, of which MG is one, affect the gut biome. They don’t say that gut biome can cause MG, though some believe that.

So, probiotics cannot hurt and can help keep your stomach healthy with the various medications and/or supplements that are taken. I get mine on amazon and am very happy with them. I use one that is for women because the main difference between the standard and the one for women is additions to help prevent urinary tract infections (which I have had in the past and have found very unpleasant). Dr. Formulated Raw Probiotics for Women 100 Billion CFUs with Prebiotics, Digestive Enzymes, Approved Women’s Probiotic for Adults, Shelf Stable Probiotic Supplement Capsules The labels calls for two per day, but I only use one per day and they last two months for about $25.

My neurologist was pleased that I take them, so I keep on taking them. Good luck with your journey. At 71, I have spent a lot of time using alternative remedies, supplements, and other modalities with my traditional medicine route and have found it very helpful. Please, please don’t fall for the nay sayers that claim that alternative remedies/medicine is quackery or don’t work. . . the science and experience just don’t support that position.

Take care, Frank

[Frank]

Hello,

Please ignore those who say that homeopathy is quackery or just water. Homeopathy has been in use for a very long time and has been used very successfully. My recommendation would be not to rely ONLY on homeopathy, but to use it with traditional medicine. Do a little research about how homeopathy works and what its history is. What happened in the US is the AMA which for years revoked doctor’s licenses for referring people to alternative providers like chiropractors and practitioners if homeopathy. That has changed. So, use a bit due diligence and then enjoy what homeopathy can do to help.

Love and Light,
Frank

[Frank]

Dear Barbara, I’m so sorry you are having to deal with this, especially alone.

Bottom line: communicate, communicate with your neurologist.

What works for me is having a wonderful neurologist and being as proactive as I can be. I’m in the same age range and we really weren’t (or at least I wasn’t) raised to be self-educated or proactive concerning our/my health. That has changed for me with my diagnosis. I did a lot of research about MG its and my symptoms and learned to talk to and ask questions to my neurologist (who is fabulous). If your neuro isn’t willing to communicate with you, answer your questions/concerns, and help you reach the health level you want, please insist on a new one. I am very lucky with mine as I live in Lexington KY and the University of KY has a teaching/research hospital and she is very knowledgeable about MG and a very caring and open doctor.

Check to see if there is a health portal (that’s what UK calls it) that you can connect to online and check your test results, appointment notes, and send messages to your health care team. IF so, please use it.

Last year my neuro asked me if I was happy with the status of my condition and said she wanted to work with me so that I was at a level of health I was happy with. WOW! I have been letting her know when I’m having issues and am not happy with my condition and she is always responsive and willing to tweak my meds and work with me.

Fatigue is a big issue for me. I have to guess about hat will be too much for me because the fatigue/tiredness usually doesn’t hit me for hours or even the next day. So, it’s a learn-by-experience thing. I’m guessing that being by yourself you have to do much more than I have to get by with my two family members living with me who have picked most of my physical work.

Let your doc know what’s going on, let them know you are not happy with your condition and ask what you can do to get relief. There are other drugs available and perhaps just increasing some of your dosages may help.

Lots of loving concern and healing energy to you!

Frank