Side Effects – Luspatercept/Reblozyl

[Kenan White]

Would love to get feedback on anyone’s experiences with this drug – I’ve been transfusion free for 6 months but have suffered from side effects that seem to come and go – almost as if ‘the cure is worse than the disease’! I’d love to hear of other’s experience as well as tips for dealing with them – mine range from severe fatigue to nausea to diarrhea and vertigo😬 Misery loves company so please join in!

[Jim thomson]

I been off vidaza since July 2022-i still have neropothy in my right foot -fatigue -sore throat
My doctor is mostly mute on the symptoms – but my cbc test results been mostly good

[cerbysam]

I had my second shot about a week ago and my life is miserable. I am dizzy in the morning to the point I have to sit down a lot. When I lift things my arms feel like I have lifted 80 lbs. My legs are week to. Short on breath when I try to even do simple yard work. I golf at least 3 times a week and now I am afraid to. Was a big pickleball player and I am even afraid to try it feeling like this. None of this happened with the blood transfusions. Now I am preparing for a big trip on September 19 and I sure do not want to feel like this on the trip. Talking with my Doctor after this holidays weekend and pray that we can do something to stop this.

[Scott Davey]

I have Luspatercept injections on a tri-weekly basis. I don’t have any side effects from them other than body aches once in a while. It’s worked well for me to keep my Hgb levels stable (at around 10.x) though I still have extreme fatigue and shortness of breath which goes up and down in severity.

[Sol Posner]

I started Lucpatercept more than a year ago. Initially was raising hgb to 11 and as the months went by it slowly was becoming less effective. I wasn’t really experiencing much in the way side affects in the beginning but I started getting dizzy light headed tired joint pain and chest pains and really short of breath when I would start exercising. I just thought these were part of the disease. I began to need transfusions more regularly to where the drug wasn’t really helping. Then this past Feb. there was a pause in taking it because they changed prescription provider. So a few weeks later my side affects were almost all gone. That’s when I realized it was the drug. I was getting transfusions every 4 weeks getting down to 2-3 weeks. But I sure felt better.
I decided to try again 4 weeks ago and put more time in between transfusions I got 5 weeks before I need a transfusion but the side affects are starting to return but not bad. So I decided to wait two weeks til my next injection and see how things go.
This is all my choice as there is nothing else other than stem or bone marrow therapy and I still don’t qualify. So I’m just trying to balance the drug side affects and time in between transfusions.

[Ashley Moncrief]

Thanks so much to everyone for writing in. The side effects of Reblozyl can certainly be a challenge. I spoke to someone recently who is an expert in the development of the medication. They found that it can take up to 21 weeks to see the full potential of the medication and that the side effects may improve after this point for some patients. Part of the reason for the bone pain/joint pain can actually be that the medication is causing your bone marrow to work harder to produce cells. The fatigue can be from the body doing this extra work as well. It is important to talk to your doctor about the side effects you are experiencing. Sometimes changing the dose or the administration schedule can help. When making a decision about whether or not the medication is worth continuing, make sure to consider the long-term impacts of frequent transfusions such as iron overload, potential for reaction, and time away from family. My thoughts are with you as you work with your care team to find the best treatment possible.

[cerbysam]

I received 2 units of blood on the 13th in place of the Luspatercept . Felt absolutely fabulous since then. Playing golf again, gardening and staying very active. I was so sick when taking the Luspatercept. I will see what my Doctor at Dana Farber says about starting it again. Hope we can find something else that works just as well and does not make me so sick. Thanks to all that responded to my post

[Joe Catalano]

Good look to you on the treatment and good luck to us on all of the treatments that we get. God bless !

[Kenneth Haag]

Kenan, I’ve experienced much the same side effects as you describe after starting my first two injections. What the literature calls ‘fatigue’ has become unremitting exhaustion. Before Reblozyl I was able to walk a mile or so around the local park, go to the grocery store, etc. Now I’m very unsteady on wobbly, painful legs. Out of breath walking from living room to kitchen. Have nearly fallen in shower due to light-headedness. Fewer transfusions may count as ‘improvement’, but now I haven’t got the energy or stamina even to go outside to feed the birds. I only hope this drug will eventually clear my system and allow me the Quality of Life I got from transfusions.

[Scott Davey]

I’ve been taking Reblozyl since it came out and the side effects were managable. Over the last year the exhaustion has been worse and worse. My doctor has assured me that it’s not the drug causing this, but has no other suggestions. I’ve seen other specialists but no other cause of the “fatigue” can be found. My doctor has just ok’d my going off the Reblozyl and seeing what happens.

[Tay]

@cerbysam – My husband is also experiencing the debilitating fatigue on Luspatercept and hoping for drug holiday. I was wondering if stopping and restarting drug had any benefit with side effects. Be well, and thank you for posting It’s extremely difficult to get additional information on patient experience with this drug. This forum helps but still not enough experience shared to have any real sense of themes etc.

[dlittle53]

Sudden, intermittent, unprovoked shortness of breath. Never know when its going to happen. Pulse ox reading is normal during these “attacks”.

[Amy Clark]

My husband was on it for three cycles and the fatigue was so debilitating that he stopped taking it. He was sleeping @ 16-18 hours a day, and also experienced more shortness of breath and stomach issues. The doctor at the COE said the debilitating fatigue didn’t happen very often, maybe 3% of people who took it, but then listed several patients who had the same outcome of debilitating fatigue. The doctor called it a “bad reaction.” I personally think the extreme fatigue is one of those side effects that went underreported during the clinical trial for whatever the reason, but that is just my opinion. Fatigue IS listed as a common side effect (@30%) during the trial, but this extreme or debilitating fatigue is not mentioned. We were very disappointed, of course, but are hopeful that it can help some other patients without, like you said, Kenan, the cure being worse than the disease.

• This reply was modified 3 months, 1 week ago by Amy Clark.

[Ashley Moncrief]

Hello,

Just popping in to mention dose changes. If Reblozyl does not appear to be working or side effects are a problem, you may want to talk to your doctor about dose adjustments. In the clinical trials, 69% of trial participants had to have their dose increased at least once to see the maximum benefit. In the second line setting, 2.9% of patients required a dose reduction due to side effects.

Hope this helps!

Ashley

[Katherine Fitzsimmons]

My husband had his first shot of Luspatercept one week ago. His hemoglobin was 8. Today he unfortunately tested positive for Covid this morning. Does anyone have any experience of Covid with Luspatercept? He is exhausted as you can imagine. Thanks

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