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I just finished up my second cycle of Vyvgart Hytrulo and experiencing the same short term effectiveness of Hytrulo.
I’m 65 and in my fourth year since my gMG diagnosis… I’ve had multiple gMG symptoms from the beginning. I’m currently on my 4th infusion type of treatments in four years still exploring for better results.
For me, Vyvgart Hytrulo is not only lasting between the full 5 week cycles but it is not meeting the seven day weekly cycles. I’ve become weak on day six of a 7 day weekly injection cycle and nearly unconscious or at least incoherent on injection day seven twice now to where I didn’t have the strength or mind set to inject myself on two occasions of my eight total Hytrulo injections during these last two cycles. On these two particular occasions, I slept for many hours after my wife ended up giving the shot and the same incident also occurred a third time in the 5th week following the first cycle which is very scary each time, so I’m obviously not looking forward to the end of my 2nd five week cycle… We’re currently staying at our summer cabin in the mountains a fair distance from any local Hospitals that have gMG specialists or we would have rushed to a hospital in each case…
In short, my neurologists doctor was honest to admit that their clinic was too busy to give me the quality of attention and treatment needed and has referred me to the Mayo Clinic in Phoenix next week and I will share what they prescribed for me as all our bodies are different coping with gMG to a degree..
Just a little History….
I tried IVIG for my first 6 months in 2022. Worked great for gMG symptoms but couldn’t cope with the severe migraines.
Then I went to Vyvgart infusions for almost 3 years and it also worked great except it would only last 40 days in a 50 cycle and most gMG symptoms returned in those last ten days. Insurance wouldn’t allow my Neurologist to reduce cycle dates.
I then changed to ULTOMIRIS for six months which didn’t feel good in my body from the beginning, it did work on some symptoms but I mostly experienced severe respiratory and muscle decline symptoms that I still haven’t recovered from plus I experienced severe mood swings from depression to rage that are finally gone since I got off and switched to Hytrulo. Knock on wood it’s over cuz I’ve never experienced severe mood swings or depression in my life…
(Again ULTOMIRIS may be a miracle drug for most gMG patients but our bodies and severity of gMG symptoms are different and unfortunately it didn’t work for me with many disappointing set backs.)
For the Last 4 months I’ve been on Vyvgart Hytrulo, it works great in short periods but for me it does not last the full seven days in a weekly cycle nor does it last the 5 week cycles. Again our bodies and severity of gMG are different..?)
I’ve been waiting for this Mayo Clinic appointment for three months now and very hopeful they can figure my body out and what it needs and I will certainly share my progress back on this forum as I move forward with their recommended treatments.
Best Regards,