Getting transfusion dependent

[Rachelthepotter]

Hi. I have myelofibrosis which was diagnosed abt six years ago, and I’ve been on ruxolitinib 15 mg twice a day pretty much since diagnosis. I originally took EPO injections, but when I switched hospitals, they didn’t have the same formulation and I stopped And trying to manage chilled EPO injections was a bit of a nightmare in itself. EPO kept my blood counts up, but even though the haemoglobin levels were fairly normal, I still felt pretty rubbish.

I now need a unit of blood per month or so to keep my energy levels tolerable. I live on my own, and have a lot to cope with. I really do need to be able to be active. Having regular transfusions takes a chunk out of my life - any news yet of drugs for PMF that might be available in England that don’t cause anaemia? Other counts OK.

PS have just been diagnosed with type two diabetes, and the endocrinologist is recommending that I take metformin. However, there is evidence now that Metformin creates anaemia even in folk without MPNs. Can’t win. Am seeing haematologist in 2 weeks for discussion of options.

[EPguy]

There is a jak inhibitor on the way that should be helpful on transfusion independence. From the company that makes it:

"48-week data from MOMENTUM phase III clinical trial show momelotinib maintained total symptom response, transfusion independence and splenic response in the majority of patients who responded to treatment during first 24 weeks"

gsk.com/en-gb/media/press-r...

It's under review at US FDA but the only way to get it right now would be in a trial. And UK is usually later than FDA. Something to look fwd to at least.

[Rachelthepotter in reply to EPguy]

Thanks - sounds positive.

[Hidden]

Morning, I was diagnosed with MF two years ago. I have been having Interferon injections once a week. Best wishes.

[Wyebird]

really really sorry to hear of your dependency on transfusions. I do hope a new drug can help. What are your heamoglobin levels before transfusions ?

[Rachelthepotter in reply to Wyebird]

I feel grim when I get below 110 I get weepy and v fatigued

[Wyebird in reply to Rachelthepotter]

.

You have MF that is horrendous

I have ET and am always anaemic.

By accident I had a craving for honey and yogurt or on toast.

Result my haemoglobin went up.

Then overloaded on honey I stopped

Levels went down

I’ve repeated this a few times and results have always been the same although my nurse puts it down to going onto peg.

This is anecdotal.

As long as I take the honey I’m able to cope with haemoglobin level of around 105. Haha I’ve also realised it has to be two teaspoons.

I do hope you find an answer to make life more tolerable for you.

Sending love, hugs and flowers💝💝💐💐

[Hopetohelp]

I hope you get the answers you need. Someone on here a long time ago mentioned that a specialist had prescribed metformin to help with the mpn. Haven’t heard anything since that post but maybe they will see this and reply as to how they are getting on. Good luck

[champ30]

Hi Rachel, I too am transfusion dependent atm 1 bag of blood every 9 days aprox. I have taken the step of asking my haematology doctors about contacting Dr.Claire Harrison at Guys to make sure they are on the same page with regard to medication.At present on hydroxicarbimide to help lower platelets.I know I'm a difficult patient as have Bronchiectasis with many infections in 2022 and also Inflammatory arthritis.As you know Rachel originally on ruxolitinib then lenalidamide as have MF/MDS crossover.My doctors work well together in prescribing meds that will not lower immunity.At the moment I am waiting results of BMB and then hopefully my haematology consultant will liase with Dr Claire Harrison.

I have asked about momelotnib and know it's not approved yet.

Regards Lynn.

[Rachelthepotter in reply to champ30]

Thanks, Lynn. its all been a bit of a struggle. Do you get ferritin build up with a unit of blood every 9 days?

[champ30 in reply to Rachelthepotter]

Yes Rachel I do and now take deferasirox 1 360 mg tablet daily....my levels are still at 2000 but at least they 're not rising.Before tablets were available on nhs I injected a liquid which worked slowly through the night....not pleasant experience having to do this nightly.I'm seeing my haematology doctor today so I shall hopefully know more as to my bone marrow biopsy and if he's conversed with Dr.Claire Harrison.

[Gipsy123 in reply to champ30]

thanks, Lynn: let me know what teh answer is, if you can.

[champ30 in reply to Gipsy123]

With regard to ferratin levels my doctor is looking at the possibility of increasing my medication to reduce levels further.My bone marrow biopsy wasn't too successful as far as the hospital was concerned but before I have another biopsy, he is waiting for results from Oxford to see if their specimen was ok.

I will let this group know when I have results.

Regards Lynn

[katiewalsh]

Hi. I just wanted to say I’m sorry you’re having these medical problems & hope things improve in your life. Katie

[Rachelthepotter]

Thanks, Katie.