myelofibrosis

[glyndale]

hello has anyone had mf for a long time and do some symptoms improve when you start treatment.

[champ30]

What treatment are you going to take? When were you diagnosed?

Regards Lynn

[glyndale in reply to champ30]

just diagnosed not sure re treatment

[Otterfield in reply to glyndale]

That was an impressively quick diagnosis - it's just three days ago that you posted that you were concerned that you might have MF.

You need a conversation with your haematologist (ideally an MPN specialist) as you will need to know the grade of fibrosis and other details so that you and your doctor can agree on the most suitable treatment.

Best wishes, Jennie

[glyndale in reply to Otterfield]

oh sorry i actually havent been officially diagnosed as,yet,i speak to my consultant this week,but the symptoms i have point to mf,im a bit confused.

[Otterfield in reply to glyndale]

What symptoms do you have?

When I progressed to MF I suffered from extreme weight loss and increased fatigue. It was complicated by some possibly unrelated symptoms such as badly swollen legs and a persistent cough.

I hope you don’t have MF, but don't despair if you do. People with MF can live well with the right treatment.

[glyndale in reply to Otterfield]

oh thank you my main symptom is fatigue ,spleen slightly enlarged, and slight low hb.

[asacker]

I lost a lot of weight when I progressed to MF. Plus the pruritus came back with avengance. I was put on Jakavi or ruxolitinib. It has been a lifesaver for me. I have been on it for about 5 years and I feel well and with no itching. I know that some people have had MF for many more years than me so try not to worry until you need to!

[glyndale in reply to asacker]

Thank you for your reply,this site is very helpful unlike google,which suggests a poor outcome.

[Hidden]

Hi, I started having symptons in November 2020, flu like symptoms, aching joints, went to GP. Referred to Heomatogy. Had a bone marrow test and was diagnosed with MF in January 2021. I also Googled and was so worried. Started Pegysis in January 2021. One injection of 45mg a week. I found if I increase the dose I get more side effects. I am seen every 3 months and am currently stable. Doctor is happy to stay on this dose until my next appointment in November.

[glyndale in reply to Hidden]

Thank you for your reply i am not googling it any more,just sticking to sites like this.glad your remaining stable .