a little good news

[Grizly]

Hi guys

I have primary MF Cal-r positive. My blood cells have been gradually going south.

My red blood cells has been low as 88 and my platelets were 47 but this was after I caught Covid. My haematologist decided to try me on Epo injections which I self administer ( as a retired nurse giving hundreds of injections to other patients a bit of karma lol) the good news is my red blood cells are now 108 and my platelets have picked up a bit, haven’t been in the hundreds since March last year. My fatigue has improved and I feel a bit brighter in mood. Not sure how long it will last but for now as they say every ‘little helps’.

keep positive pawb

[Mazcd Partner MPNVoice]

hi Grizly, great news, so glad you are feeling brighter. Best wishes, Maz x

[hunter5582]

That is good news. Glad to hear that you are feeling better. It is hopeful that there are new drugs in the pipeline like momelotinib that may help with MF cases like yours. Wishing you all the best moving forward,

[Grizly in reply to hunter5582]

I have the Cal-r would that mean that momelotinib would not be as effective for me? I will take this up with my haematologist in my next telephone consultation

[hunter5582]

The indication for the new JAK inhibitor momelotinib is for MF with anemia. I have not seen any data on differences in efficacy based on the driver mutation. That is a great question to ask a MPN Specialist. Please let us know what you learn.

[nightshadow]

So glad to hear things are going well. Hope it continues!

[Wyebird]

great news I do hope it continues.

[the_black_pig]

Hi GrizzlyGood to know you are feeling better.

I have Primary MF Calr the same as you, had it for 8 years now. Was on Hydroxy until Dec last year, my platelets were high (800) and not coming down and the Hydroxy was making me quite ill. So my Consultant started me on Ruxolitinib and for last couple of months things were good, platelets came right down to 250 and I was feeling better.

However over last couple of weeks my red blood count crashed to 78 and I felt really light headed, (even fainted once). Consultant said this anaemia is quite common with Rux and it should come back up. I have just had 2 units of blood to bring count back up. My first transfusion, a long and boring process!

Will now see what happens over next couple of weeks. Sorry for long post. Hopefully the anemia will improve as I do not want to be reliant on transfusions. Not heard of EPO injections but will mention it to my Consultant.

[Grizly in reply to the_black_pig]

Epo is the shortened name for Epoetin Alfa I believe it’s a man made enzyme that your body produces naturally from the adrenal gland it tells your body to make more red blood cells. But I’m no expert lol

[Cja1956]

Glad to hear you’re feeling a bit better. I also have mf, but with the jak 2 mutation. I’ve had EPO injections in the past and they are definitely helpful. Good luck to you moving forward.

[George1976]

Terrific news Grizly. Good news is always great to hear about.

What else are you taking besides epo injections?

[Grizly in reply to George1976]

not taking anything else but I sometimes take Tranexamic Acid for bleeding gums.

[Ticotopia]

That is good news. Glad to hear that you are feeling stronger.

[Exeter21]

Brilliant makes everything feel good once body responds 👍

[Grizly]

Thank you everyone for all your kind words and support.