Breathless

[BloodZero]

Recently my hydroxy dose was increased to 1500mg / 2000mg on alternating days. I dont know if this is a coincidence or related but im getting strangely out of breath when i exert myself. I suddenly start yawning and feel light headed. Feel like lying down. Im no stanger to exertion and exercise regularly but this experience is new to me. Has happened a few times.Any advice on whats happening. I can see my Dr till December.

[socrates_8]

Hey Blood Zero...

Might be worth asking if there's an alternative Med's that you can take... That sounds like a very high dose to me...

Best wishes

Steve

(Sydney)

PS. Have contact details for MPN Specialist in NSW if you'd like them etc...

[BloodZero in reply to socrates_8]

Yes please.

[socrates_8 in reply to BloodZero]

Hey again BZ...

I've just re-Posted on your Private Message (PM)

You know how to reach me if you require any further 'Info'

Best

Steve

(Sydney)

[JustKeepSw1mming]

Hi BloodZero,

I would talk to your hematologist/MPN specialist.

I was severely out of breath with the slightest of efforts on 1000mg/ day on Hydrea. My dose was reduced to 500 and it really helped, although I still get breathless from time to time and suffer just after meals. My specialist wanted me to take extra doses on the weekends. I tried, but the side effects were so severe, I couldn't cope with them.

When I first started getting these symptoms, my hematologist sent me to do an RMI scan to exclude fibrosis in my lungs and to a cardiologist to check for heart issues. Thankfully, in my case it seems to be just a side effect. I will be asking my hematologist again if there is an alternative, having tried interferon though, I am not very hopeful at the moment.

Please be careful and get your doctor to check you and discuss your treatment options.

All the best.

Mary

[BloodZero]

Spoke to Haematologists today. She doesn't think its related to the hydroxy and wants me to continue the dosage.

[jointpain]

When ever my wife's dose was altered, the hematology consultant would give a reason and get more frequent FBC blood tests, often once a week, though when hospitalised earlier this year due to platelets dropping to 4, every day. This was when hydroxycarbamide and my wife's body were not getting on, one week her platelets could be 1000 the next 19. She has now ceased hydroxycarbamide and ceased Anagrelide and just on Jakafi, and that dose has dropped by 25% since she started a few weeks ago. I'd suggest getting more frequent blood tests.

[Mirror368]

i hope you are able to get a consult with an MPN specialist. This seems an unusual situation.

[Cja1956]

When I was on hydroxy I experienced terrible shortness of breath. Sometimes, I couldn’t walk more than 10 steps without having to sit down. I was diagnosed with COPD, even though I never smoked, sleep apnea, and pneumonia. Since the doctors took me off of it in June 2023, and put me on jakafi, I feel like a new person. Even my pulmonologist was amazed. You really should see if there is anything else you can take.

[Luvbirds]

Until last week, I was on the same dose of hydroxyurea as you are on. I worked up to that dose over a period of about 3 years, and stayed at that level for about 9 months. I too noticed more fatigue and feelings of breathlessness during the slightest exertion. At the same time my WBC and RBC curved in the low to critically low categories. Recently both hemoglobin and hematocrit are low, so I have anemia. Doctor advised to immediately stop taking HU. I am awaiting results from a BMB to figure out if disease progression or if it is mostly related to HU.