Luspatercept

[Kenan White]

Very good news and congrats! So glad you shared your experience and have just heard panel discussion with MDS docs and the general opinion is that it’s better to start Luspatercept before getting dependent on transfusions. I’ve had 3 since 2018 so think I’m going to stick with Procrit regime until numbers head south. What were you doing before Luspatercept?

[janis hamada]

Congratulations John Bradley on your success with Luspatercept– May you continue to have good results! Please do keep us posted on your progress.

[John Bradley]

Kenyan- I was watching my RBC and HMG gradually go south with no further treatment! I go to a Center of Excellence in Denver and after my latest Biopsy my doctors said we needed to try Luspatercept before trying others. Since I have liver cancer that is being treated at Mayo my doctors have to coordinate treatments-no easy task! I am lucky to have superb insurance that allows me to go anywhere in the US for any treatment. Before my Lus shots my RBC was 1.9. and my HMG WAS 6.9. My parents both lived over 100 and my doctors attribute my health to excellent genes! Everyone can laugh at that but I believe you are where you come from! Trying to juggle four major dieseases is interesting but I want to live as long as possible and help others. I am a realist however and the standard joke at Mayo is which will eventually be my swan song. When I am there we all laugh at this ghoulish talk but let’s go out smiling! I should also note that I exercise every day in my swim spa or on my bicycle. I find swimming to be the best exercise and have been 5’8 and 145 lbs for the last 30 years. Even with diabetes I eat mostly fruits and veggies and my A1C is 6.1. Meats in general are out except for chicken and fish. I do however love donuts and manage to sneak in two or three a week! After LUS runs it’s course I will prolly try Procrit. We will see. I will continue to let the Forum know my future ADVENTURES!

[Kenan White]

John! In addition to healthy living I’d say your sense of humor and optimism have been a help! Yes please do keep us informed re your progress and best of luck with all of your challenges. It’s such a rare and complicated disease and helps to hear what others are experiencing so thank you 🙏
I’m very grateful that my current protocol is working and I’ve managed to average 7.5 and 3 transfusions in 3 years – 2nd opinions at J Hopkins and Dana F conclude with local doc and like you, I’ve been living a pretty healthy lifestyle as that’s about the only thing I can control! Lucky enough to retire and honestly living a pretty fulfilling life in spite of MDS – look forward to more good news about Luspatercept-BTW are you MDS with ring sideroblasts?

[John Bradley]

Keenan-Thank you for bringing up the important fact that yes I have ring sideroblasts. All of the data shows that if you have those you are a perfect candidate for this drug. It also appears that if you can get the generic costs go from astronomical to inexpensive. With BSBS insurance LUS in the generic goes to just pennies a day! I would encourage all of our Forum friends to look at the potential of Lus. There are many articles on this drug and education is important. I have learned a great deal from Forum folk and I fully intend to continue to be educated about other people’s experience with this horrible diesease! On a lighter note As I am writing this reply I am watching my Denver Broncos and eating a jelly donut! Shame on me!

[John Bradley]

Just received my third shot. I am noticing increased dizziness but all else is about the same. It will be interesting to see what else changes with side effects if any. I have wondered as time goes by if side effects increase or if they get better? The more information we can give to others hopefully will help people with this awful disease. I will keep the Forum informed.

[cerbysam]

Medicare paid for mine without any questions. I am 76 years old and was receiving blood transfusions every 6 weeks, I was very anxious about them paying because it is submitted as $17,000 per injection. Medicare paid just over $10,000 and my supplemental insurance paid $1,600. I just wish it made me feel better and not worse.

[Mary Elizabeth Smollon]

I’m fairly new here. My hemoglobin is dropping to around 10.1 and I’m very tired. Will Luspatercept give me any energy or is it very individual?

[cerbysam]

I started Luspatercept in August. Was really not feeling well at all from the start. Legs and arms ached and I got so dizzy on standing that I had to hold on to things or fall. I had four shots and after the 4th I got so dizzy and weak one day that I went for blood tests. My hemoglobin had dropped to 6.7 so I was admitted to the emergency room for transfusions. So my hemoglobin was dropping on Luspatercept. I was due for a fifth shot a few days ago and did not take it. So disappointed but I have heard this from others that it made them sick too. I hope it works for you.

[Kenan White]

I can only share my experience which is very similar – started summer of 2022 and the side effects were worse than those felt with anemia – horrible pain, nausea and fatigue worse than when my counts were at my lowest – but feeling like I had no choices I kept up with it and tried to keep up with the good habits I’d learned re eating sleeping and exercise – still had bouts of low counts but did gradually get to a point of 6 months transfusion free – the side effects are much better but it took 6 – 8 months at least – and 16 months I still have challenges and have had transfusions but am not going to stop – I’m going to go to the highest dosage soon – good luck to you and would you share what you are doing now instead of Luspatercept?

[janis hamada]

Hello Cerby Sam and Kenan White,
I’m sorry that you were not feeling well on Luspatercept…are you being closely monitored by your MDS or MPN specialist? Sometimes it takes a while (Kenan–6 months transfusion-free is really great!). Hopefully Cerby, you will eventually see improvement or perhaps this medication is not working for you.

I have MDS/MPN crossover (double whammy) with severe anemia in the 6’s and was on Luspatercept for about 8 months last year. It did not make me ill, but also it did not work at all, which was very disappointing.

There are new therapies being developed, and am optimistic that soon there will be a medication for anemia that will help those of us with these rare diseases.

May you feel better soon! jen

[Kenan White]

So I am MDS with ring sideroblasts – are you both as well?

It’s such a perplexing and frustrating disease and we only have one choice which is to move through it but there are many reasons to be hopeful 🙏

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