ocrvus or kesimpta doc gave option any advice
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Welcome, @striblingpaul. I'm tagging other members who live with multiple sclerosis, like @sanny @beltonite410 @christinebuchar @shack76 @babette @chris462 @helenlodahl @kip170 @kco @dsheahan1951 to see if they have experience with either Ocrevus or Kesimpta.
According to a clinical trial comparing Kesimpta (ofatumumab) to Ocrevus for the treatment of relapsing forms of multiple sclerosis (RMS) in adults, the main difference is cost and how the drug is administered. Read more here:
– Novartis' Kesimpta to compete with Roche's Ocrevus in MS: https://www.clinicaltrialsarena.com/comment/aan-2021-novartis-kesimpta-trial/
"The safety and efficacy data of Ocrevus is, overall, comparable with that of Kesimpta. The main differentiation between the two drugs is the delivery system and the annual cost of therapy, which is $65,000 for Ocrevus compared to $83,000 for Kesimpta in the US."
Kesimpta is self-injected under the skin once monthly. Ocrevus is given as an intravenous infusion every six months.
Paul, do the factors of cost and the convenience of self-administration help you make your choice?
I’ve been on Ocrevus for 3 now. MS is doing well
I have 2 concerns:
1. The infusion only lasts about 4 1/2 months.
2. Every time I’ve had an infusion I have hair loss. Each time it has gotten to
more and more. My last infusion was the last week in June. 3 weeks later
when I shampooed my hair I had a fist full of hair. Now more than a
month later and it’s still coming out in clumps. My hair is now very thin and
bald spots on the top of my head and back of my head.
I need to find a new MS treatment but I’m worried about more hair
My Dr. Isn’t getting back to me and I don’t see him until the end of
November so I’m investigating on my own.
Can you tell me more about Kesimpta.
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My name is Ruth not Paul.
I already know about the cost of the 2 drugs. I'm concerned about the side effects of Kesimpta.
I've lost so much hair while on Ocrevus I'm looking another treatment option.
Just saw the Brain and Nervous System support group would that be more helpful for me. I was directed to your group from the Kesimpta site I was looking at.
Thank you for your reply,
I’ve been on Kesimpta almost 4 years. I feel like it worked during years 1-2 but I still experience many ups and downs. This could be because I have fibromyalgia and MS and not solely MS. No hair loss.
I was diagnosed with MS in 2018. I was put on Tecfidera at that time. Then I was switched to Vumerity I am still on it. I have progressed from RRMS to SPMS. I heard this is a common thing to happen.
Has anyone else had this happen?
What did you do?
I'm doing the Ocrevus infusion every 6 months and my doc is suggesting I switch to Kesimpta. She's expecting me to research it and tell her what I want to do. I just don't see how that decision is left up to me to both research and determine if I want to switch. For me, if I have decide I'd stick with the Ocrevus. I did the daily subcutaneous injection with one of the earlier medications used for M.S. and though I didn't mind doing it then, my hand dexteraty isn't so good.
However I do take issue with your cost comparisons. The last time I got the infusion I had to pay a 20% co-pay, and they billed my infusion center over $100,000.00 and that was for one infusion. Previously the Genetec Foundation was giving me the Ocrevus at NO cost. I'm straightening that out now but it's a real hassle. But my point here, is to compare the cost. If I had to pay over $2,000 for each infusion I don't know what I'd do.
My friend is 39 and just diagnosed with MS. Is stem cell therapy helpful? She is already on wheelchair. Is there anything natural to take to prevent progression? Thanks. Any cure? Anything to help her? She is just too young.
Sometimes some drug companies have a coupon for $15. You cannot get the coupon if you have Medicare. But, if you have other insurances, call manufacturer of your drug and see if they offer the coupon.
@jord. You are a great friend to your friend! Right now, you can just be there for her. Listen to her, let her cry, whatever she needs. Do you live near her? Giving rides would be very important. As for medications, let her doctor make those decisions with her input. Read all the rest of this discussion (and others that you will find here) and you will learn how others cope. You can even suggest that she join group and see that she is not alone.
I, too, was diagnosed with an autoimmune disease that, at first, looked like MS. A brain biopsy showed that it was another disease not MS. The one thing I really wish is that I had a friend whom I could talk to. Most people don’t want to talk about my disease because it makes them uncomfortable. But, you could be that confidant for your friend! Give her as much support as she will allow.
Think you could do that?
Thanks. She just got married in Oct and she is one month pregnant. Drs are trying several medications on her. She is trying to be positive. She is on cortisone now. All of a sudden, one day she got sick, and could not walk.
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