EDWARD CLAGHORN

I was getting two days of IVIG monthly. They were becoming less and less effective. Vivgart is a significant improvement overall. So far only three of us at the clinic have been approved for vivgart. I believe that there will be many more.

<p style=”text-align: center;”>Just finished my second cycle of vivgart infusions. Being treated at the hospital. Much better than home infusions. Takes about three hours from start to finish. Better results than IVIG but different. Less positive results with vision. After 4-5 weeks positive effects declined.</p>

We always require a mask or I vacate the work area and someone else deals with the tradesperson. Afterwards we open windows and clean all surfaces. We are polite and explain my health risks. No problems yet. Often they are wearing the mask when they show up. They do not want us to make them sick either.

I tested positive two days after returning from two weeks of work in Europe. Out of nowhere I felt like a truck had backed over me. I did take paxlovid and felt better within hours. Tired and sore for about a week or two then back to normal mg life again.

IVIG monthly for three years. Now getting vivgart, 4 weeks on and four weeks off. No infections. Staff at hospital are super careful and trained.

My Dr. has always talked about patients who went into remission. My case has seem a slow steady decline in health as well as declining results from IVIG. I will switch to vyvgart in October and hope for improved results as well as remission.

Dreaming is free

Thankfully my IVIG infusions and drug costs have been mostly covered by Medicare. When the hospitals were closed and I had to use a home infusion company, the IVIGs were NOT covered by Medicare, The fact that the hospitals were all closed to infusion patients did not change their position – they do not cover home infusions.

By the way, the home…[Read more]

I am waiting for an approval for vivgart. The IVIGS 2-days a month have been less and less effective. Swallowing food is a big problem now  How long does it take to get approved?

Thank you for that clarification. Right now I am going through the process of getting set up with the home infusion company and making sure that my insurance covers the cost. I used this home care company during the pandemic and they were less than perfect.

Hello to all,

I have just been told that I will start getting Vyvgart. 1X/wk for 4 wks then a 2 month gap that weekly again. Recently the 2-day IVIG/mo + mestinon + prednisone are giving me diminished results. Main problem is swallowing food and sinus issues.

1. Does this mean I stop the IVIG treatments? How about the other drugs?

Hopeful…[Read more]

Every day different

I am still able to exercise regularly and cycle 3-4 times a week in the warm weather. I have found that after a long bike ride my legs and arms are sore and I get cramps in my legs and hands later in the day.  I have to pay attention to the weather as the heat affects me more than before, even with proper hydration.  In the cold weather it takes m…[Read more]

Agee with all – low pressure systems are the worst. Often I feel a heavy feeling in my head – as if I have a sinus problem. I feel the extreme cold the most but have to pay more attention to hydration on my bike rides. I cannot ride anymore on very hot – 90F days. Now every day is an adventure – feeling good or bad is never a trend, it is a daily check in.

My specialist has made all the decisions automatically with few explanations. When I had a bad reaction to my Covid jabs he made adjustments quickly – doubling the prednisone and adding CellCept. No explanation given but it took care of the problem. I am ok with this except that I have had to figure out my symptoms on my own. Especially my swollen…[Read more]

My timeline was months long and as I reflect on it, I probably had the beginnings of MG years before and just did not recognize the symptoms. All along, my complaint was mostly sinus problems which no one attributed to MG. In the end I was diagnosed by a great Doc who did it over the phone while talking to my surgeon. Tests two days later…[Read more]

I received my third Pfizer shot 14 days ago and my reaction to it was much milder than after the first two. I timed it exactly between my monthly 2-day infusions. I am still on Cellcept and an increased dose of prednisone since the first reaction to the vaccine shots. Hoping that this is a good sign and I hope to drop back on the extra meds.

Thank you Leora – Very helpful and appreciated.

I did have an adverse reaction from the two Pfizer jabs. My eyesight blurred and then I had double vision for a bit. The Dr. changed my meds and I did a 4 day IVIG instead of the normal 2 day. It took a few weeks to get things back to normal. I am still taking increased amount of prednisone as well as the CellCept. My third jab is set up for next…[Read more]

Will do. I was told that the CellCept would eventually replace the prednisone and the Mestinon. I would look forward to that.