Just about to get a transfusion to see if it helps the fatigue.

[Rachelthepotter]

Hi

Tried to post earlier but not sure it worked so this might be a repeat. I'm MF Jak2 + and ive been on ruxolitinib for nearly 3 months. Fatigue has been getting worse so Im having a blood transfusion. Thank you to the people on this site who shared their own experiences. It helped me make my own decision. It seemed worth a try.

[JediReject]

Hi Rachel , , I'm sure you'll get a boost from the transfusion. It is a tad tedious as others have said , being about 2-2 half hrs per bag and you usually get one or two units. When I had MF the Ruxo helped my fatigue and i didnt need transfusion. . . but we are all different. Of course Rux can also mess with your counts but your Hem will be keeping a careful watch there.

I do hope you feel the benefit and take a good or if you have one your Kindle. .

Cheers Chris

[Rachelthepotter in reply to JediReject]

Thanks, Chris. I noticed that you could say "when I had MF", because since your bone marrow transplant you don't have it any more. Roll on the day when there will be treatments that can cure MF for all of us.

Hope all goes well with you.

[socrates_8]

Hi Rachel...

Just wishing that you find some much needed relief.

I am also on Ruxo' 25mg bd, and I too do have some rather bad days of late w/ extreme fatigue & nausea...

...Hence, I shall be really interested to learn how you get on w/ this treatment.

If it is a positive for you, I might have to investigate the same option for myself, perhaps at some later date...

In any event, best wishes Rachel...

Steve

(Sydney)

[Rachelthepotter in reply to socrates_8]

Thanks, Steve. It has helped me, and seems well worth the hassle. The only down is that I gather that you can't have them indefinitely as you get iron overload(?). But I 'll cross that bridge when I get there.

[socrates_8 in reply to Rachelthepotter]

Hey Rachel...

Happy to hear that you have derived some benefit from what sounds like a long day's event... (Reading Chris's comments above).

However, all that is really important, is that you have found some much-needed relief from your fatigue. Well done and thank you for the feed-back. I shall have to quiz my medical team to see what their response might be etc...

Best wishes Rachel.

Steve

[Mazcd Partner MPNVoice]

Hi Rachel, hope it makes you feel better. Best wishes, Maz x