MPN Voice

Let me introduce myself

Hello, we live in the small town of Madeira Park in Pender Harbour BC, I have been recently diagnosed with Primary MF Jak2 positive and am on Hydroxyurea. I had a Stent inserted in December 2015 and last October when I once again developed severe Shortness of Breath our Have had 2 transfusions, a week apart when my Hbg nose dived. I have been getting weekly blood cross checks for about 6 months now. Our internist recommended alternating dosages during the week after not so successful trial at 2000mg daily, down to 1500 Mg daily, then 1000Mg daily our Hematologist agreed to this course. We are now alternating 1500 Mg Monday Wednesday and Friday. As well our GP ran all of my meds through a software that he had. It was indicated that the APO Allopurinal I was taking for Gout was conflicting with the Hu. In to week three of this dosage, my Hgb is Low but almost normal, Platelets High but almost normal. No real fatigue, and am back to doing 8-10 hour days in our small family run Satellite and Security Alarm company with the exception of an added assistant who takes the place of my long suffering wife/caregiver who has been with me for going on 47 years now, and allows her to stay home with the books and telephone calls.

I have been using Phoenix Tears, before bed, now and this has really improved my sleep, although I have had night sweats a few times now, I am told it is part of the disease.

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Hi Willympn,

I would like to welcome you to our friendly forum.

I have ET (jak2+) and am also on hydrea and aspirin. I am pretty much asymptomatic. I am nearly 62 and still work part time.

I’m not sure about the hydrea/ allopurinol conflict that you mention. I know that there are people on this forum that take both medication. Maybe they will respond.

On another note you live in a beautiful part of the world. My son lives and works in downtown Vancouver. He sends me such stunning photos!

Mary x

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Thank you, Mary. What is the difference between ET and MF. We are still waiting for the referral to a second MPN for a second Diagnosis. Unfortunately the doctor we have chosen is a partner to our present Hematologist and our GP thinks this could be an issue?

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mpnvoice.org.uk/

Take a look on the above link. You will be able to find answers to your question.

Mary x

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Hi Willympn

I have MF and was originally given hydroxyurea plus allopurinol to prevent me getting gout. The hydroxy breaks down the excess blood cells and the breakdown products ( especially uric acid) can cause the gout. The allopurinol blocks the excess uric acid that causes the gout.

So, I’ve been taking the allopurinol ever since. No gout problems.

Glad you found this forum. The MPN Research Foundation has some good information packs. Here is the link. mpnresearchfoundation.org/M...

Keep in touch.

Rachelthepotter

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Hi Willy, welcome to the MPN family. I went on so many sites before I found this wonderful place, full of people who are experiencing what you are. I lived in BC for my years in the Okanagan Valley and miss it every day. Hope you get all the info you need and the friends you would love to have.

Jilly

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Hats off to your GP

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