[Community Member]

I just traded in my low sitting sedan for a Subaru Outback. I can’t believe the standard features on it versus other cars. I rented one for a 10 day/ 1100 mile road trip this fall. Not only was the drivers seat comfortable, but the passenger seat had more power adjustments than most cars. I’m getting 29 mpg in city. There’s a hybrid version coming out mid year for about the same price if you want to hold out for it. I was impressed that it dropped my insurance rate significantly too!

[Community Member]

I get your frustrations. I’m 5 years diagnosed and still refractory after having tried multiple treatments in addition to prednisone, Mestinon and imuran being my steady companions. I don’t know about bipaps, but my CPAP has a humidifier container. I also found Ayers nasal gel, a humidifier or petroleum jelly (keeping it sterilize- no fingers or double dipping) keep my sinuses from drying out too much. I turned to clinical trials to get some relief from symptoms. The first trial was almost 2.5 years. It was the only treatment that gave me any sort of relief. My prednisone dose went from a high of 60 mg down to 17.5 mg. Now I am participating in a second trial, but it’s too soon to tell any results.

For weight gain, 20 lbs gained was my biggest weight. I did an elimination diet and reintroduced foods. I found there were several foods which I ate regularly and caused gut inflammation. I ended up remaining vegan/ gluten free for the last 3 years. I increased my water intake, cut out sodas and juices. I was able to drop 12/ 20 lbs. I also felt a lot less drained without those triggers. My GP ran a full blood panel including thyroid, parathyroid and iron. At one point, I had a vitamin D deficiency, another time slightly anemic and a startling improvement in my thyroid function. I was able to quit taking thyroid medications.

These are thing that helped me, but we are all snowflakes.🤷‍♀️

[Community Member]

This topic hit close to home for me. I was diagnosed in 2019 and was engaged to my partner for a couple of years prior to that. He seemed pretty supportive at first but didn’t really take my disease seriously until the second year when I had my first exacerbation and was hauled away in an ambulance. It was Mother’s Day of 2020, a few months into Covid. This made it real to my two boys, my fiancé and his daughter. They saw me at my worst, unable to breath, talk, hold my head up and they didn’t know what to do (of course none of them listened to me hounding them to be aware). He started pulling away physically not long after that, afraid that I would have another exacerbation. When I was told there was nothing else out there and would have to wait until new drugs were available, my fiancé was upset. “How can doctors do this to you? There has to be something!” After another 9 months without treatments, I was accepted into a drug trial 800 miles away. He agreed to move closer to both of our families. He pulled further away from me. We put the house on the market while I began the drug trial. I was flying back and forth between treatments to pack up the house, while he was supposed to be looking for a job. As we were drive the uhaul truck, he tells me “I thought you would change your mind. I never thought that you would actually move.” I never felt more unsupported than at that time. All of the unaccompanied doctors’ visits, me trying to explain what and why my body could no longer do the things that i did before came even close to that moment. Six weeks later he came to visit us at our new house. Some work commitments had held him back for a few weeks. He seemed lost that we had moved and settled in without him. He acted like a stranger to me. This went on for another 18 months of some sort of commitment at work, his daughter (now 20) needed him, his mom needed help financially. All a load of excuses. The phone calls became more erratic and turned to the occasional text. I had given up at this point, the more that I stood back from the situation, the more that I realized that this was not for sicker and in health. MG had changed too much between us. He was not the supportive partner in this journey. I started to find myself again without the stress of always worrying about if and when he would join us. There was not an us. Now I look at my life – still refractory, without a partner, almost an empty nest, disabled. Who would want a partner that struggles to get out of bad at times, naps like a toddler, no longer keeps and immaculate house, the pharmacist can pull my records without asking my name. Does having a partner really matter if my friends are as close as my family?

I am, by far, not an expert in giving advice. Clearly, I need to hear it just as much as the request asked. What has helped me is; sticking to my routines, finding places where I can bring joy to others and looking forward. Every morning, I have a clean slate to start the day. Wallowing in the would have, could have, should have sucked up close to two years of my life – just keep moving forward.

[Community Member]

I ran into the 180 mg shortage this weekend. I have it on automatic refill and didn’t realize that I was so low. I contacted my CVS on a Friday and was told that they had ordered it and believed it would be in stock on Mondays stock order. When I checked Monday, I was told that it was now back ordered. I asked if any other pharmacies in the area had it in stock, there were two pharmacies in all of North County San Diego, but I would have to verify by calling them directly. The closest one only had a 30 day supply and told me that I would have to pay “as is” since the prescription was for 90 days. At that point, I jumped for it. I already had one night of having to wake up in the middle of the night to make it through. I was not about to suffer more. Scary stuff!

[Community Member]

I’ve been on Vyvgart Hytrulo for two years now. I had UTI’s for about 3 months, but increased my water intake, removed sugar (damn prednisone sweet tooth) and started D-Mannose and have been UTI free for a year. I had one Respiratory infection and Covid during this time. I truly believe that Covid was so minor due to Vyvgart. I had a few minor skin reactions from the injection site, but it was only a color change, no burning or irritation. Vyvgart has been the only drug that I have had a positive response to. I still take prednisone, Imuran and Mestinon. After 2 years, I can really tell when I need to treat again, 4 weeks on and 3 weeks off is my sweet spot.

[Community Member]

I am in the Vyvgart Hytrulo trial and currently on my 15th cycle. The subcutaneous version has the same success rate as the IV version, just a different administration form. For those of you who are discouraged because you didn’t leave the tap dancing out the door after the first few cycles, give it time. Most of our medications take time for them to be effective and we all react differently. Each cycle has been different for me, some cycles I am dancing out the door and others I want to curl up in bed for a few days. We all have triggers and environmental influences that impact our symptoms and can change the way we respond. Bottom line, give it a chance to work, be patient and look at the big picture. Are you not feeling a zing because you had more energy and have been running around and doing all of the things? You still have MG and need to remember to rest and self care. Now you have another resource in your medicine cabinet to complement your other treatments.