Recently diagnosed

I was diagnosed with high platelets after months of being told my blood showed imflammation>The first I knew was when I phoned about blood test results and was told I had been referred to a haematologist. I am on Hydroxcarbamide and Allopurinol. I take Clopidogrel, a blood thinner for a suspected Tia in 2018. I was terrified when a nurse phoned to say she would send me a red card incase I get a temperature and have to be rushed to hospital. I know about that having had breast cancer in 2016 and it happening then. She also said to take temperature every day. I am suffering enough anxiety without turning me into a hypochondriac. The doctor phoned today and I mentioned to her I was worrying about being rushed to hospital and she said that wont apply to this sort of chemo and I don't need to take temperature. She said she would have a word with the nurse! I cant swallow the capsules so put them in water. Does anyone else do this as my platelets have not gone down as quickly as the doctor hoped so she has upped the dose

[Swede]

Hi, sadly it seems that every doc har their own take on MPNs.I am also on the anti platelets,Clopidogrel, and 3 other medications, since diagnosed 2007. It has happened that I have seen a doctor and they had no idea what my illness is. I have noticed that it takes a good few weeks before any changes in medication can be seen in blood tests. Everything is cracy these days but we are all in the same boat....try to take it easy if you can. I had to sit myself down and have a good stern chat with myself. Telling me to behave! I was too worried and stressed. So, hope you can enjoy the Christmas and look forward to better times

[Hidden in reply to Swede]

Thankyou for your reply. Yes the world has gone crazy! Its good to know you have had it for 13 years as I was worried it was a death sentence at first. It is nice to know I am not alone. I hope you have a lovey Christmas

[souplover]

Hi, I have PV and have been on Hydroxyurea plus blood thinner for going on two years.

I think we all experience some shock when we're first diagnosed. I have experienced some fatigue, but despite that I took a challenging new (part time) job six months ago and I continue to do most of the things I enjoy most in life, including babysitting for my granddaughter, walking and biking and yoga. I'd include, getting together with family and friends but not so much because of the pandemic. The worst for me is the fatigue, but I do manage mostly to push through it.

If you find the fatigue is a serious problem, I feel like collectively we can coach you through how to handle it.

I think there's often a period in the beginning when the doctors adjust the medication until it's effective. That's normal, not cause for alarm.

It all sounds scary in the beginning, but you'll be okay. My doctor gave me words of wisdom in the beginning: Go out and live your life. (In other words, focus on living your life as fully as you can.)

[Hidden in reply to souplover]

Thankyou for your reply. At the moment I just feel spaced out..cant be bothered to do anything! Look in cupboard with good intentions to clear out but think cant be bothered!! If you have a job you are doing well..I hope I feel more lively soon! Happy Christmas and New Year

[souplover in reply to Hidden]

What I'm saying is that sometimes it helps just to get started, even when it takes a real effort. And then, once in motion, you do start to feel a bit better. It sounds Pollyanna, but that's what I've experienced.