Generic Name: eculizumab
Brand Name: Soliris intravenous
Drug Reviews Drug and Medication User Reviews
I get tired day of infusion. I have pain in bilateral wrist n shoulders a little. I’ve been on it 3 months and I like it.
Solaris helped significantly when nothing else did. I tried mestinon, prednisone, azathioprine, cell cept, and cyclosporine alone and those did next to nothing. My Thymectomy did not improve my symptoms. I had been taking IVIG for years and it makes me 50 % better. I was taking Cyclosporine and monthly IVIG for a year and that helped (mostly the IVIG helped) but I still had significant symptoms. A few months after i added Solaris to this regimen, my symptoms are 95% gone! It is an infusion so I get some infusion symptoms the day of the infusion (headache, fatigue, brain fog), but no other side effects.
I have been taking the infusions for about 5 months. I do have more energy than before. This past week I did develop a blood clot in my lung and am awaiting a call from my Dr to see if I continue or stop the treatments.
The medication causes a side effect of thick mucus production. It has been impossible to rid the mucus. I was advised to take both benadryl and mucinex at night. However, the mucus is still thick and present. I have to sleep with many pillows propped us so I do not choke on the mucus.
After a very close encounter with death last summer, I have been taking Soliris every two weeks since. I have been able to arrange a local provider for the infusions, and have reduced the time spent from the entire day to about three hours. My golf game has improved and I got my first hole in one this fall. I have not experienced any side effects from the drug yet.
Don't like the fact that it doesn't always arrive on time .Hate the fact i take one of my days off to go for treatment.Yes only 35 infusion yet between the driving time , treatment, labs, etc. It's an all day thing for us.Leave at 11;45 a.m. arrive home at 4:30 or later