Anyone on Lemtrada? Being suggested to mje after 18 mons on Ocrevus with no results.
Lemtrada?: Anyone on Lemtrada? Being... - My MSAA Community
Lemtrada?
Written by
scouty
To view profiles and participate in discussions please or .
Read more about...
14 Replies
•
Are you saying you keep having relapses? Are you sure you want to switch to a drug with a side effect "Death"? It had been suggested to me before Ocrevus came out. Lemtrada seems to be very unsafe.
Thank you. Sounding from your response I need to do some more research.
Where did you find that info?
dianekjs was pretty detailed in her responses. My neuro says Ocrevus is the only MS DMT to slow down the progression of disability. You should give it time. Do not go the Lemtrada route if you can help it. What about your nutrition and exercise?
Lemtrada is much much higher risk than Ocrevus, it has FDA black box warnings and is increasingly used only as a last resort. When you say you’ve had no results on Ocrevus, can you elaborate? Have you developed new lesions? Not everyone will have improvement in symptoms, the main objective is to slow down progression.
I’m past the days of relapses. Moved on. Will have MRI later this month. No new symptoms. Just slowly getting worse, weaker, progression, etc.
I hear you, but new lesions can form without experiencing relapses. I guess the question is whether you would be declining even more if not on Ocrevus, which of course you will never know for sure. However, it does have the best statistics of any DMD for slowing progression so hopefully it is doing some good behind the scenes. I'm sorry that you're getting worse, it is very difficult, I know.
I don't have answers for you except to encourage you to research as best you can and have a frank discussion with your doctor. Any medication will have an enormous list of side effects and potential problems, but certainly not everyone will experience every or any of them. We are all individual and react differently.
I'm confident that you will make an informed choice about what's best for you. I hope you'll let us know your thoughts and what you decide. We're with you, no matter what you choose.
I am on Lemtrada (2 sets of infusions completed about 2 years ago). No issues (including the only time I've seen "Death" listed as a possible side effect - plus many other possibilities) during or after. My Neurologist seems happy with the subsequent MRI results and hasn't told me of any new MS issues. My MS continues to be stable.
Ocrevus hasn't done much for me. I feel like I'm going downhill. MRI scheduled in a couple of weeks.
I was given Lemtrada 2016 and 2017, with monthly blood and urine tests for 4 years. The side effects are very concerning, causing numerous cancers. Lemtrada did not help me at all. The same problem with the meds that have been on the market. However, Lemtrada did cause two cancers and a possible third. The cysts on my thyroid are being watched now. The melanoma has been removed and I am checked every 3 months. Oncology removed the cancerous tumor and my enlarged spleen (major surgery). Caught in time. So this is what Lemtrada has done for my ms of 19 years. Simply caused additional problems. Lemtrada likes to attack the thyroid and I am being watched very carefully. The outcome of my thyroid issues is pending. I am now being prepared to start treatment with a brand new med approved by the FDA for treatment of progressive ms when nothing else works. The brand name is Mayzent and the generic name is Siponimod. I hope this medication will slow down the progression of my ms and side effects will leave me alone. That would be nice. Every day is a new day to be grateful.
I have heard of it & had 1 Dr. who thought I should try it if the Tysabri stopped working. It didn't stop working I became positive for the JC virus for a few years we decided to try Ocrevus which seems to be working PRAISE GOD!!
