Help with anemia

[Jerrymohler]

I have Myelofibrosis with hemolytic anemia. Haven’t started Jakafi. Spleen is starting to enlarge. Any ideas of how to control the anemia while taking Jakafi?

[Boriqua]

Jerry Hey buddy I have Myelofibrosis since 2015, I was on Jakafi for several years my spleen went down I gained weight and I felt great. I would give it a shot. good luck, take care.

[tracey13 in reply to Boriqua]

My husband started jakafi in February he's gained a lot of weight too .

[Boriqua in reply to tracey13]

Tracey jakafi makes you gain that's one of the side effects, tell him to eat more vegetables and fruits, papaya is the best helps you loose weight

[tracey13 in reply to Boriqua]

He's been on a low GI diet for three weeks he craves sugary food terrible.

His moods are all over at the minute

[skipperL]

I have Myelofibrosis and am on Jakafi - I have to have monthly transfusions for the anaemia. Now because of the ferritin buildup from theses frequent procedures I shall have to use a chelating pump. However I feel so much better than before - all my unpleasant symptoms have mostly gone - I am putting on the weight I lost - in fact I may have to go on diet soon! All the best SkipperL

[Hidden]

I've been on Jakavi for nearly 2 years. Spleen reduced, platelets at normal levels for first time in 30 years and nightsweat problems gone. However anemia, as expected, got worse and I was transfusion dependent. So dose reduced and transfusions then only every 8 weeks, but ferritin levels getting far too high. Mention was made of chelating pump.

To try and avoid the pump I was put on Epoetin (EPO) injections 4 months ago - first low dosage didn't work but doubled after 8 weeks and now although I'm still anaemic I don't need transfusions and ferritin level dropping a bit.

Having to keep them in the fridge is the real problem, but this week instead of injecting three times a week I'm on same dose but twice a week. There are a variety of strengths available unlike I remember the problem with Pegasys where I had to discard quite a lot.

Having said all that I think a lot of people find the anaemia problem gets better on its own after a few months on Jakavi and hopefully you might find that the case.

[hunter5582]

I would wonder about how useful modifications to diet would be to support your body's efforts to keep you healthy. Certain foods are far richer in the heme-iron that the body more readily absorbs (e.g. clams, liver, octopus, lean red meats). There are also vegetable sources (e.g. green leafy veggies, , quinoa), but they require the additions of vitamin C (citrus juices) to help the body metabolize the iron. Your body will always absorb heme-iron more readily.

I think that a focus on a healthy diet will always help us as we struggle with the impact of the MPN on our bodies. Eating an iron-rich diet won't cure the hemolytic anemia, but it may help. There is some support out there for diet modifications for hemolytic anemia. The information is easy to find.

I currently have phlebotomy-induced anemia with ferritin levels so low that the lab can't accurately measure them. I had some trouble tolerating the iron supplements, in part due to the effect the hydroxyurea had on my gastrointestinal system. Since I have been off the HU for a while, hopefully my gut will recover enough to try the iron supplement again if I really need it. For now, trying diet alone to gradually bring my iron levels back up to a reasonable level.

I hope you find a tolerable solution to the anemia soon. All the best.

[Pte82 in reply to hunter5582]

Hunter. look into liposomal iron to overcome gastro issues

[home1970]

Suggest to the nurse if you coud take follic acid. I have been taken jakavi for the last 1 year and a half. I have good days and bad days. I think of the good days. Make the most of life.

My spleen at the moment is 19 cm.