Marguerite Thibeau
Forum Replies Created
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I was very excited about the idea of a subQ Vyvgart, But I’m not as comfortable with the additional drugs yet. I have MCAS and Chemical allergies so I will watch for a while. I had hoped to get the injection at a local Neurologist, saving 3 hours of driving and 2 hours in the infusion center. Also sparing my veins.
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I want to try dry brushing. My sister has lymphedema and has been trying to find a massage therapist who does Lymph drainage massage. This might help while she is waiting for appointments. Not many places do lymph massage, just some cancer centers.
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I still take full precautions, use KN95 masks inside or out. I watch the sewer water counts, plan carefully to avoid busy times. I hate that even Cancer centers o longer mask. It dries me crazy that medical workers don’t mask. My local family are very careful as we all have autoimmune issues. We have not gotten Covid, but those who weren’t careful have had it once or twice.
We started masking when the first cases began. We haven’t had any flus or colds. I will always mask, the benefits are well worth it.
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TAF told me Rituximab isn’t covered, so I got stuck with a huge bill. The hospital/doctor told me I needed it, and TAF would pay. Later someone told me Rituximab takes a long time to kick in, and I was given it while waiting a month for my Vyvgart. So I was left with $3,000.00 bill for nothing,
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I saw 5 Neuros/Neuromuscular doctors and several hospitals before settling in very happily with Dr. Amanda Guidon and her MG clinic which includes and infusion suite. She is my all time favorite doctor. And MGB my favorite hospital. They have plasmapheresis available, which is rare. Here is the MGFA list of providers:https://myasthenia.org/Physician-Referral-List/state/MA
There is a New England Facebook group : MGFA New England Support Group. Dr. Guidon spoke on the last virtual meeting.
Hope your new doctors work out for you and you get the treatment you need.
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I don’t tolerate many drugs so I’m not a fan of prednisone for me. It’s an important tool for MG, and has helped many. But those of us who didn’t do well on it are more likely to reply. My Dexa Scan showed increased bone loss, and my teeth had increased problems. I regret taking it. Women have more of a problem with bone loss. And I feel my brain function changed.
Surviving is our goal, so there is that. Here is a recent study on it. I have young family members being put on it and have real concerns, so this article didn’t help remove my worry. You’ll have to discuss options with your doctor. It’s been the standard of care and is frequently used. https://www.medicalnewstoday.com/articles/prescription-steroids-affect-brain-structure-study-finds
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I received the 2 different monoclonal antibody drugs (MAB) in March. I started to get a slight headache, then realized I wasn’t hydrated. Because I had to drive over an hour to get it, I had avoided drinking. So I drank water and the headache left. I will be getting next dose in October. I don’t tolerate vaccines. I suspect it’s the base/preservatives. I wish I could take them, especially with the new ones coming for Covid.
My doctor had said only one MAB drug could be taken, so having been on a MAB I wasn’t sure if she would prescribe another. I’m on Vyvgart and want to add a MAB for Osteoporosis and one for psoriasis, but still trying to find out if that’s OK. I’ve heard from others that are on 4-5 MABs with no problem.
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Imuran and Cellcept are 2 of the most widely used and tolerated meds. I have trouble with many meds, from cosmetics to heart meds so it’s no surprise I had trouble with these, unfortunately. They are older, well tolerated, solid drugs with a long track record. Imuran caused a bout of pancreatitis. The doctors were wheeling me out to go to surgery and I asked if Imuran caused the pain. Very dramatic, but they checked and admitted me for observation and the pain went away. So I had to switch to infusions which are much less convenient. Imuran most likely will work well for you and spare you infusions. Good luck, let us know how it goes.
Marge -
Magnesium is very necessary for healthy muscles, and easy to get through our diet without problems. Certain populations are low in magnesium as the soil in the area is low and not enough was available in food. Scotland had this problem.
“Magnesium is in charge of numerous important functions in our body. In the power plants of our cells, the mitochondria, it is involved in generating the indispensable energy needed for all of the body’s processes. Magnesium activates about 600 enzymes in our body. It makes sure that hormones like insulin are stored and released. It is involved in the production of nerve messengers like serotonin, and protects our cardiac muscle from stress. In the skeleton, it is an essential factor in bone health. Finally, in our muscles, magnesium is responsible for their usual function together with calcium.”
“A well-adjusted magnesium and calcium balance is indispensable for healthy muscle function. Whereas calcium is responsible for muscle tension, magnesium is in charge of muscle relaxation. It controls the transmission of impulses from nerves to muscles, ensures that the continued inflow of calcium is prevented and that the nerve excitability is lowered once again – which leads to the desired relaxation. For healthy adults, the German Nutrition Society recommends a daily magnesium intake of 300-400 mg depending on age and gender. If there is magnesium deficiency, there is excessive calcium in the muscle and it can no longer fully relax. This causes painful cramps.”
High dose IV Magnesium is a problem for MG patients, and most be assessed by need by doctors aware of the issue for MG patients. But most of us can look up foods rich in it, or use an appropriate supplement overseen by our doctors.
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I am currently on Vyvgart, and doing great. My doctor said that patients that have a positive reaction to Plasmapherisis tend to do well on Vyvgart. This has been true for me. I too am curious why he felt it’s not a good match.
Insurances can play a role in what Meds we can access. Some want other drugs tried before certain treatments. I had done great on Soliris for several years, then it wasn’t enough. Vyvgart wasn’t approved yet, then there were no infusion centers certified for it. I’m infusing at home and loving that it’s only 2 hours for a month, then nothing until I need another boost in a month or two. Traveling to an infusion center added 4-6 hours to the actual infusion time, so I’m feeling very spoiled.
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I’m seen at the MGB Clinic. I have had such great experiences with them. I was concerned about the idea of a clinic, I was wrong. My Doctor is always there for me, backed by a knowledgeable team. She has come to visit me in the hospital, called me to check on me. Wonderful in every way!
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Robert, lots of great points in here. It’s great when we can have a family member with us, but if not we have to advocate for our selves, with kindness and appreciation. We are consumers of medical services and they there to help us. Generally they are terrific, but mistakes are made, so be attentive and watch out for yourself. I changed hospitals twice to find a place that was better. Luckily my Neuromuscular doctor is fabulous!
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Douglas, it was from a conversation with one of my doctors as something to consider. I would love to get the vaccine, but haven’t tolerated them in decades. I had to get some for Soliris and each landed me in the hospital and weak for months. This is not related to MG, but my other auto-immune issues. If you tolerated the 1st one, then perhaps your doctor can discuss this with experts, perhaps epidemiologists and get you safe. I envy that. I have a neighbor I met when she was moving out to senior housing. She had MG! We were so surprised to find each other. She got sick with the 1st shot, and delayed a few extra weeks until she and her doctor felt she should get the second as Covid was making the rounds in her building. She did fine with the 2nd shot and has immunity, but still is cautious with Delta increasing by 60% in our area.
I hope you and your doctor can come up with a plan that works for you. We are all snowflakes within this disease and need to make decisions with experts we trust. Be safe.
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On good days I also freeze things like chili, seafood chowder, beef stew cut tiny. My son has MCAS and can’t be around when I cook, or even make toast for himself. It’s a great motivator for me. Once a month a get a fresh roast and grind it, make patties and freeze them. We can’t do store bought hamburger. Once a week I make 4-6 loaves of Milk Bread and freeze them. When I’m not tending it, I rest. It’s the only carb he can eat. He can’t eat leftovers, so any thing left gets frozen. It really motivates me to stay out of the hospital. I am grateful for everyday we have together. He has about 10 simple foods he can eat, and no spices.  Luckily he is very appreciative and good humored, the perfect roommate, even if he can’t help in anyway. He’s the first to remind me to rest, notice if I’m having trouble.
I have swallowing issues so my fav backups are a bottle of Miso in the frig. Add hot water and it’s a nourishing soup or base. I sous vide my meat so it is more tender. Sous vide soft boiled eggs take around 45-50 minutes, but stay liquid with no solids to struggle with as the whites don’t solidify like eggs cooked at higher heat, the proteins don’t tighten. I can eat them even when I’m struggling with water. My diet is limited by other health issue. My biggest cheat is occasional ice cream. Who can resist, especially in summer? If I get bowled over by humidity a spoonful or two and a rest help a lot.
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If you have speech or swallowing issues have aback up way to communicate like a notebook and pens. Tablets or devices that you can stay in touch with the world and be amused by, like ebooks or audiobooks when you eyes get tired. Most libraries have free downloads.
Sometimes I needed help getting what I needed. One hospital wanted me flat on my back, so I asked for oxygen as it reduces my “load” helping with my allergies. They said it wouldn’t help! So I asked for a Respiratory Therapist who understand and got me what I needed.
When I was in for my first MG symptoms, the doctors insisted I was having strokes, despite test to the contrary. I asked for a Neurology consult and was told it would take another 3 days. Sp I asked for a Speech Therapy Eval as I presented with slurred speech and swallowing issues and swollen soft palate that they wouldn’t consider, so the had one come quickly since I couldn’t eat. He got it in minutes, and went and told them. They proudly came in and took credit! So think outside the box and get what you need.
I needed a nasal feeding tube and was assured after 20 minutes of failing to insert that they were using the smallest one. I said no more interns trying , I wanted the most experience person in thes hospital, probably for Pediatrics and a Pedi tube. Shocked, they complied. It was done in 5 minutes. I also insisted on picking the food mixture as I wanted to know what I was getting.
As for what you need. Explain why you question, appreciate their help, enjoy the staff and be friendly and thankful. It matters. They work miracles.
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As if our MG and other autoimmune issues weren’t enough to deal with! I was told we would need to be off immune suppressants for 2 weeks before the vaccine ( for each injection). Tough to do. As I also have MCS vaccines send me into a flare and hospitalization, so I can’t risk them. I really wish I could, because I could be part of the extended family again. My granddaughter is too young for vaccination, so we protect the 2 of us.
With the new variants come a whole new level of concern. The CDC has decided to only count the Delta stats for death or hospitalizations. If someone is protected by vaccine, cases are generally milder. But with 1000 times the viral road it will spread easily, and not be counted by many tallies. Masachusetts has had 4000 cases with 79 deaths. I get my infusions in Massachusetts. Cases are up 46% last week. Beta, Gamma, Delta, Delta Plus, Lamda, Alpha, Epsilon, etc to watch out for. We are chosing to celebrate life and go back to strict precautions. The vaccines definitely cut risk to 66% percent or so with the new varieties, and cases are milder. But changes keep coming because too many aren’t taking it seriously. We must! Most MG patients can get the vaccine, do your best to research your situation as well as taking to your doctors.
I’m not going out more than I have to. Humidity is a big issue for me now, so I travel with oxygen and may have to switch to a vented (exhaust/air out only) N95 mask. Some hospitals ae going back to masks for all. Be safe, and enjoy each day. Find things to be grateful for each day, focus on the positive. If only that we are living in 2021 and not the middle ages with the Black Plague!
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Paul, you should always call your Insurance company to find out what your benefits will cover. Plans vary, where you receive treatment affects the cost. If you have Medicare A, B, D or C each section can vary, Sometimes you might need your provider to tell you what code they bill under. Vyvgart Pathways can help you get answers if calling your insurance leaves you with questions. https://www.vyvgart.com/
Good luck!
Marge
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Thank you for sharing. I have MCS as well as MG, and am very concerned as every vax has made me sicker. I’m meeting with an Infectious Disease specialist tomorrow to discuss.