Has anyone taken Revlimid (lenalidomide) for anemia due to MPN?
My oncologist has recommended this. The cost is approximately $15,000 to $17.000 USD per month (copay after insurance) in the US.
I would appreciate any feedback regarding efficacy of this drug, side effects, and advice on how an ordinary working person can afford this!
Many thanks, jen
Oh my word- how bad is your anaemia? Mine is 96-10. There are injections. I’m in the UK X
Thank you so much for your reply. Are you referring to epo injections? Unfortunately, they have not worked for me. Your anemia at hemoglobin 9.6 to 10 is rather mild, according to my oncologist. Mine is at 6. Hope that you are feeling well and stay safe. Please keep in touch, jen
Oh no yes you are quite right. I am mild compared to you. Yes I was referring to EPO. Oh goodness. Here in the uk you would be having blood transfusions.
I’m so glad I live in the UK.
Most importantly I do hope that you find a solution to ease your situation.
Do you have ET PV or myelofibrosis?
This is something I have never heard of so I had to look it up. Here is what I saw on a quick look.
online.epocrates.com/drugs/...
"Revlimid is also used to treat anemia (a lack of red blood cells) in patients with myelodysplastic syndrome caused by an abnormal chromosome. This disorder is also called deletion 5q MDS, because part of chromosome 5 is missing. In people with this disorder, the bone marrow does not produce enough healthy blood cells."
drugs.com/revlimid.html#:~:....
I believe you previously stated that you have ET/MF. Are you still taking HU? As you stated in a previous post, anemia can be one of the side effects of HU, It is of course also a component of MF. One thing I would be wondering is if your treatment should be shifted to another medication at this point given what you are experiencing.
The use of Revlimid for a MPN would be off-label for a MPN since it is usually used for MDS and other purposes. I doubt any of us has the knowledge to give really good advice as to whether you should consider it. There are Black Box warnings on this medication and potential side effects that would be a significant concern. I would suggest getting a second opinion from a MPN Specialist before making a decision on this, as well as to review your overall treatment plan for the MPN. mpnforum.com/list-hem./
Regarding the price, the figure you cited is the retail cost. I do not know which insurance plan you are on, but it may be a challenge to get your insurance to cover this med. As a side bar note, the cost is similar to Jakafi.
Manufacturer/Pricing .
Manufacturer: Bristol-Myers Squibb Co.
DEA/FDA: Rx
Approximate Retail Price
from goodrx.com/Revlimid
oral capsule:
2.5 mg (28 ea): $23,643.20
5 mg (28 ea): $30,109.80
10 mg (21 ea): $17,526.10
15 mg (21 ea): $15,815.00
20 mg (21 ea): $17,781.00
25 mg (21 ea): $17,238.50
I hope this helps. All the best to you moving forward.
Thank you, everyone, for your thoughtful comments and additional information. I had a second bone marrow biopsy a month ago, which showed a double-whammy of MPN and MDS with 5q deletion --causing anemia, and JAK2 + causing ET of 1.3 million.
Aranesp and Luspatercept epo injections have not worked for me; last hemoglobin was at 6. No symptoms such as splenomegaly, fatigue, etc. Actually feel fine, but have had to have several transfusions.My oncologist asked for a second opinion from a highly regarded MPN specialist here in California, USA. This specialist recommended Revlimid. Not sure about this due to possible significant side effects and prohibitive cost.
I appreciate your feedback and encouragement! Will keep you posted.
Sending good wishes for better health, jen
Now the recommendation makes more sense. Your insurance should cover this med since there is a clinical indication for the MDS diagnosis. It will still be expensive. On my policy this would be a 30% (of the $17K) copay until I reached my cap then covered 100%. Each monthly payment would also be capped, so I would never pay $5,100 at one time (which is over my annual cap anyway).
I sure hope your insurance is similar and that your formulary will cover this med if you choose to pursue it. I would think that reconsideration of your entire medication regimen would be in order. It may be that something other than HU is in order if you are still taking that.
Wishing you all the best.
toughluck, HU is a toxic drug and one of the liver's functions is to store toxins. If it is not does not have the ability to flush a toxin from the body it stores it. Over time these toxins interfere with it's other functions. Suggest looking into the subject in addition to this link. Always discuss concerns and suppplements with your health care professional.
Hi, I've just seen your post.I take lenalidamide and have done since May 2018 . Like you have MF and MDS -5q deletion.When first diagnosed I took ruxolitinib,which wasn't great for me...lots of infections and anaemia.This medication was fantastic for me and felt so well also red blood cells good until June 2020 when suddenly after being in hospital for 3 weeks in pain was diagnosed with seronegative inflammatory arthritis.This being an autoimmune illness has affected my bloods.I am on prednisolone,which now I'm now reducing slowly as the drug sulfazalasine is ok for me for arthritis.Have been having transfusions when needed and am down for one on Tuesday If blood test shows I need one.If so I will have gone 9 weeks which is great for me.I'm really hoping I get back to the level I was at 2018-2020.
At the moment however I have been battling as also have bronchiectasis.I have always been a 1/2 glass full person but lately what with the pandemic have been quite.low.
Anyway I think this medication is good if only I hadn't developed the other!
By the way my haematology doctor and rheumatology work together.
Kind regards Lynn
Hello Lynn, Thank you for your reply. I'm happy that lenalidomide has helped regarding your anemia and transfusion dependence. That's really great news! I'm a bit confused, though, as anemia is one of the the stated known side effects in the literature. This drug apparently causes a lowering of neutrophils and platelets as well. I will discuss this with my original hematologist this week.
Hope that your other issues can be resolved. We have enough to deal with with our MDS! Are you in the UK? It seems that the healthcare system there is superior to what we have here in the US. The drug copays are ridiculously high, and I have very good (and expensive)
health insurance.
Sending good wishes that you will recover quickly from your other health battles. Please let me know how you are doing.
All the best, jen
Hi Jen, I think for me it was a case of trusting my doctor,which I do.At the moment my neutrophils are good but if,and it has happened a few times,they fall below 1 I'm told to hold off the lenalidamide until they come back up.
Yes you're right I am from the UK.
Hope all goes well visiting your haematology doctor and with you financially.
Best wishes Lynn
I have post Et Mf. I live in the US and when I went on Medicare this year, only one drug plan covered my Fedratinib at about $7000/year. I called the manufacturer and they gave me a list of patient advocacy groups to call to get a grant. After many calls, I found one and it has been a godsend. Please look into it. Your anemia is very serious. Let me know how it goes.
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