effects

[kp27kathleen]

Has anyone ever had the hemo reduce the hydroxy when platelets are 415? I feel so bad on this drug? Skin cancers, hair loss, extreme tiredness,depression and others. Thanks

[Aime]

Hi Kathleen, sorry can’t answer your question as I have PV not ET but just wanted you to know I’m thinking of you and understand how some of your symptoms feel. Sending a load of E hugs and healthier wishes.

Kind regards Aime xx😺😺

[Eadaoin]

My platelets have been 580-650 mostly for the past 20 years with ET and have only been on a blood thinner to protect from strokes. Am 75 and on ‘watch and wait’. Am under a leading Hospital for developing research into MPNs and am confident in my care there. Hope you get some relief from all the side effects.

[kp27kathleen in reply to Eadaoin]

I will go to see my hemo next week. I am 82 and otherwise in great health. Just hardly seems worth messing up my good life with Hydroxy. I also have very swollen ankles and I'm not at all overweight. Thanks so much for your reply

[Eadaoin in reply to kp27kathleen]

Good luck. I hope you get a helpful response. There have been amazing advances in understanding these blood conditions and how to treat them since I was diagnosed in 1998. Maybe the news does not travel very fast. 😀

[mhos61 in reply to Eadaoin]

Eadaoin,

Are you jak2+ MPL or Calr?

[Meatloaf9 in reply to Eadaoin]

May I ask what hospital you attend?

[Eadaoin in reply to Meatloaf9]

Fortunately I am under Guy’s/St Thomas’ Hospital in London. The Haematology Department is at Guy’s. I can’t speak too highly of the care, attention and support we receive along with the confidence that comes from knowing that the doctors are linked to national and international research programmes.

[Hidden in reply to Eadaoin]

Your reply is so good to read. I have had ET for 3 years 66yrs old and I am only on aspirin too. Platelet around low 600s. I am on the watch and wait sanario too! Lovely to see you are 75 and still on the same treatment. Lyn

[Meatloaf9 in reply to Hidden]

I am 68 with platelets around 460-550 over the last several years only diagnosed this year. I recently saw a mpn specialist who recommended only aspirin at this time and said if he did place me on HU it would be one 500mg pill every 3 days.

[Petsch in reply to Meatloaf9]

Where r u from

[Petsch in reply to Eadaoin]

Where r u from

[Petsch in reply to Eadaoin]

Where r u from

[Meatloaf9 in reply to Petsch]

I am from WV, saw a Dr at Cleveland Clinic

[fee13]

In New Zealand they tend to wait until platelets are a little lower than 300 and then reduce the dose. I would however speak to your doctor or haematologist about your swollen ankles as they will help identify what's causing them.

[kp27kathleen in reply to fee13]

Thanks

[kp27kathleen]

I live in Arizona.

[bmboulanger]

What is your daily dosage? I am 65, with ET, JAK-2 positive with underlying symptoms of PV. I take one 325 mg aspirin per day, Hydroxy does is 500 mg per day. My dose was raised to daily to try to bring my HCT to 45 or lower so I wouldn't need periodic phlebotomies (vivisections), as well as keeping my platelets in an acceptable range. At appointment yesterday, my HCT is holding at 45, platelets are steady at 390. I take my dose in the early evening, and though I have a short, wakeful period in the early night from it, the side effects are less noticeable than if I take it during the day. I also take many other supplements (can be seen in my profile), and believe that they have helped me as well. To those suffering with swollen ankles, 3 months ago I began taking Dandelion Root twice daily and magnesium. My ankles have stopped swelling and I feel much less bloated, too!