Hi. I have PMF, and rux was making me anemic and tired. Running a personal cold chain so that I could use EPO injections to boost Hb was beyond me. Using Rux on its own ( 15 mg twice a day) needed transfusions to maintain Hb. Short trial of pegasys made me v depressed. I’m clearly susceptible to depression as a side effect.
Might be worth trying reducing the dose of momelotinib ( at present 200mg on alternate days) : its keeping my Hb at normal levels , and giving me more energy, but if the price is depression its not worth it.
Wondered if anyone else has had similar issues.
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Gipsy123
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I’m on Momelitinib but hadn’t considered whether it was affecting me mentally. I do have low days, but I think that comes with the anxiety the disease causes. I try not to worry about progression - but I do! Usually in the middle of the night.
Would your GP be interested if you mentioned it, or haematology? Some are more receptive than others. I’m not sure whether anything except a change of drug would help, and if it is helping the disease then we’re stuck!
Sorry I can’t help with the momelotonib but I did get panic attacks followed by depression from Pegasys, having never had any mental health problems before. Depression is an awful thing to deal with so you have my heartfelt sympathy. I would speak to your haematologist to try to find a way forward. Hope you can get it sorted and let us know how you get on
Just seen the local haematologist - he’s happy to prescribe momelotinib as 100mg a day, but the script needs to go through the right channels at the local hospital , so I can’t pick up the new meds till Friday😞. I’d hoped to leave with the new tablets in my hands. Pity.
Whilst I’m not completely new to this - I simply do not understand most of the abbreviations you used in your post. I am curious though, as my husband has Myelofibrosis, but I simply cannot understand what you’re talking about if you don’t use whole words.
EPO = erythropoietin, an injectable substance that has to be kept chilled, and increases the oxygen carrying capacity of the blood by raising Hb levels Used to be used illicitly by cyclists in endurance events.
Rux= ruxolitinib, the first available JAK2 inhibitor ( no need to fret about what that is: it treats but doesn’t cure PMF)
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Combining Pegasys and ruxolitinib (Jakafi) for MF: has anyone tried it?
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