- This topic has 5 replies, 3 voices, and was last updated 1 week ago by Price Wooldridge.
May 24, 2023 at 9:24 pm #20787Ginny BoyntonParticipant
Since I switched to Firdapse, I have been getting weaker and weaker. I was on 90 mg of Ruzurgi, and when I switched to Firdpase, I took the maximum amount of 80 mg. I was then permitted to go up to 90 mg. but I continued to get weaker. Then I had a seizure so I had to go back down to 80 mg. Not only am I having to use a lower amount of Firdapse than I did Ruzurgi, but it has a shorter half life.
I have gone from only using my walker to sit on and take photographs at sporting events and using my scooter to go distances – such as taking photographs at different places on cross country courses, to having to use my walker to get around the bathroom.
My neurologist and I have been trying to decide what to do for me to get stronger, and his most recent suggestion was Cell cept. Does anyone here have any experience with Cell Cept?
May 26, 2023 at 4:58 pm #20791
There are people on Cellcept, and I’m checking on one now, so I hope you can get a good reply.
There are also a number of LEMS patients on Rituximab, sold under the brand name Rituxan among others. It is a monoclonal antibody medication used to treat certain autoimmune diseases and types of cancer.
Patients report varying degrees of success with it too.
May 26, 2023 at 6:25 pm #20792Ginny BoyntonParticipant
Please let me know if you have more thoughts about ways to improve my strength. Has there been any more discussion about Catalyst making Ruzurgi?
When I asked in two forums about cell cept, several people said they didn’t have good experience with cell cept, but they are not doing well on Firdapse and did better on Ruzurgi.
May 28, 2023 at 6:45 am #20794AmberParticipant
Ginny, so glad you brought this up. I have been fighting to get back on ruzurgi for a long time. Since I went on firdapse, like you, I can hardly walk long distances, whereas on the ruzurgi was able to do a full day at Disney no problem. I am on the immunoglobulin treatments from Hizentra which help a lot, and I tried earlier this year Rituxan, but it did not work for me. One thing that does work for me really well is being on birth control. I’ve been on it for years because of my Lambert Eaton syndrome, and the one time I went off of it to see if it made an impact it did. If you’re willing, you could ask your doc about going on yaz to see if it helps you too. Through the Lambert Eaton board, I heard that they are offering ruzirgi in Canada and I am asking my neurologist to see if we can get it from Canada. No luck yet but I will keep everyone posted.
May 29, 2023 at 3:20 pm #20795
I see some googling comments with anecdotal experiences.
Someone I spoke with is on Imuran, Avathiopine, an immunosuppressant. You might check on that one too.
May 30, 2023 at 2:53 pm #20797Eleanore MontyParticipant
Hi there! This is Ellie. It is my hubby who has LEMS. He is currently being weaned from prednisone (thankfully) and has been off of imuran for several months. He has IVIG’s every 2 weeks. His neurologist is recommending cellcept. Wes has a siezure disorder, introduced after 2nd COVID inoculation, so they are very careful regarding drugs. He has had so much going on in his body over the last 2 1/2 years I almost hesitate to comment, so please put my thoughts in perspective.
Because Wes had throat neck cancer prior to LEMS diagnoses (another very long story). Before they make any changes, they want another opinion from Moffit Center in Tampa, since his blood results went a little wonky a while back. They seem to be settling done now. We just keep looking up. God is with us.
June 1, 2023 at 9:12 am #20798
Hi Ellie! Yes, it does sound like your husband has been through a lot and has a number of medical challenges. Long term steroid use has its known problems, but I also know totaling weaning off can be difficult. This just highlights the need to understand the trade off decisions needed to accept treatment on medications.
I’m curious why he went off Imuran? Did he have adverse reactions, or was it not effective? And keep us posted if he starts Cellcept.
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