Is Anyone using Reblozyl (luspatercept) for anemia due to MPN/ Hydroxyurea?

[goodluckjoe]

Hi everyone, I've been taking Aranesp injections for 2 years for severe anemia due to myelofibrosis/ET and also side effects of hydroxy. The Aranesp stopped working, and I've been taking luspatercept injections for the last 9 weeks. It has caused systolic BP to increase 30 points, which is quite alarming. Was wondering whether anyone else has been taking this relatively new drug (just approved for MPNs in February 2020. If so, would you mind sharing any side effects from this drug?

Thank you for your time, jen

[hunter5582]

This drug is new to me, so I looked it up on ePocrates. What is interesting is that it lists hypotension as a side effect - the opposite of what you experienced. However, the manufacturer info packet notes:

"High blood pressure. High blood pressure is a common side effect of Aranesp® in people with chronic kidney disease. Your blood pressure may go up or be difficult to control with blood pressure medication while taking Aranesp®. This can happen even if you have never had high blood pressure before. Your healthcare provider should check your blood pressure often."

This is the Black Box Warning for Aranesp. I am assuming that you have reviewed this with your doc.

Increased Mortality and Serious Cardiovascular Events in CKD Pts

incr. risk of death and serious cardiovascular events when administered to target Hgb >11 g/dL; no trial has identified Hgb target level, ESA dose, or dosing strategy that does not incr. these risks; use lowest dose sufficient to decr. need for RBC transfusion

Increased Mortality and/or Tumor Progression in Cancer Pts

use only for chemo-related anemia in pts where cure not anticipated outcome; incr. mortality and/or tumor progression or recurrence risk seen in pts w/ breast, head/neck, lymphoid, cervical, and non-small cell lung CA; use lowest dose needed to avoid RBC transfusion, D/C once chemo course completed.

The 30 point spike in hypertension is very concerning. If this is a steady state, I would think that a change in your medication regimen would be in order. Perhaps there is a medication other than hydroxyurea that you would tolerate better regarding the iron deficiency. With the MF, it is a difficult thing to sort out. I hope you are working with a MPN-Specialist as what you are describing goes beyond the scope of what a regular hematologist may have the KSAs to treat optimally.

Please do let us know what you learn as we can all benefit.

[goodluckjoe in reply to hunter5582]

Thank you very much for your most thoughtful reply. I did speak with my dr. today and was advised to keep a log of BP for another week to see whether the increase is temporary. After 2 years on Aranesp, systolic BP only increased a bit (5-7 points). Diastolic BP remains OK (less than 75, mostly). It is only after the Luspatercept began 9 weeks ago, that the systolic BP increased greatly.

As Luspatercept is a relatively new drug, just approved for MPN patients a few months ago, I am curious about whether others have been taking this drug, and what they have experienced. (I feel like a guinea pig!)

My iron/ferritin/B12/folic acid, etc. parameters are within normal limits. I am JAK2 + and also have a 5q deletion mutation. Taking 500 mg Hydroxy every other day. It seems that everyone has a very individual journey with these MPNs regarding symptom burden and quality of life. I am very grateful for the knowledge provided by all of you.

Many thanks, jen

[hunter5582 in reply to goodluckjoe]

I just reread the original note and realized that it was luspatercept that you were asking about. I am sure you already know it has hypertension as a potential side effect. Drug interaction check does show potential for potentiation of this adverse effect when combined with Aransep (ePocrates)

Aranesp (darbepoetin alfa) + luspatercept (generic) Monitor/Modify Tx

darbepoetin alfa + luspatercept

monitor BP:

combo may incr. risk of HTN, thrombosis (additive effects)

It sounds like you have a doc that is staying more of the cutting edge of treatment. While mostly a good thing I think. can also see where that might make you feel like a bit of a guinea pig.

Please do let us know how things go with this. I suspect there are not many in your situation (I know exactly how that feels). We can all learn from what you learn. We really are stronger together.

[goodluckjoe in reply to hunter5582]

Hello again,

Thankfully, since Aranesp quit working for me, it has been replaced with luspatercept. According to insurance statements, one dose of Aranesp = almost $12,000 and luspatercept = $13,000 USD. My insurance company prefers the luspatercept, as it is only administered every 3 weeks; whereas Aranesp is every other week. I'm grateful that it is fully covered, because who could afford to pay for this? Not me.

So only have luspatercept for now. Watching sodium content in every food, working out every day, getting proper sleep, avoiding inflammatory substances and people (!) have helped bring the BP down 10 points this week.

Thank you for the information about ePocrates. Another excellent source of information. You are so knowledgeable, do you have a medical background?

Thank you and stay safe, jen

[hunter5582 in reply to goodluckjoe]

You are welcome. My background is in clinical psychology. Have worked for 40+ years in the MH/SA field. What it really taught me is how to do research. I have been on a rather involved health journey of late due to the ET progressing to PV, NF1 causing a brain tumor, developing paroxysmal atrial tachycardia and a few other interesting learning opportunities. My newest experience and learning opportunity is palinopsia (could have done without that one).

It sounds like you are on the right track. Diet is very important and can really help. There is WAY too much sodium in processed foods not to mention the host of other toxins in the food chain. With having a MPN, it is really important to avoid toxins and inflammatory agents (and people).

ePocrates is a really terrific website. It is a professional grade tool, but you can get a free account to access the basic services. I take no meds without at least checking there for basic information and drug interactions.

All the best on the next steps on your journey.