Hello!: Thankyou so much for the add. I was... - MPN Voice

MPN Voice

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Hello!

MarieNZ profile image

Thankyou so much for the add. I was diagnosed with PV June 2013, I'm Jak2+, currently taking daily asprin, and have been on Pegasys for about a year as the Hyrdrea wasn't working for me.

I do not know anyone else with PV so am looking forward to getting to 'know' others that have an MPN, and learning more about this illness we all share.

Thanks

Marie

10 Replies

Hi Marie - welcome! I'm also JAK2 + PV, from June 2014 - Venisections, Hydrea and Asprinwork ok for me, but be sure you are not alone. Regards Bob.

tracey13 profile image
tracey13 in reply to AirconBob

My husband is 43 years old. We found it to be so frightening when reading up on the Internet.

He's never been poorly and nothing has changed in our life.

Mind we claimed on our critical illness insurance and he was successful. You've got to claim within 3 months of diagnosis.

Tracey

Hi Marie, i was diagnosed jak2+ PV (age42) a couple of months ago. So far asprin and venesection are working for me but seeing all the posts here about other meds makes me wonder how long I will stay stable with my current treatment. Welcome to the forum, its good to have another PV friend.

Mazcd profile image
MazcdAdministrator

Hello Marie, welcome to our forum, you have come to the right place to meet people and ask questions. Best wishes, Maz

Hi Marie, I was diagnosed in january of this year as JAK2 +. I'm on Hydroxycarbamide & Warfarin due to blood clots. The Hydroxy works well for me as I only take it Mon-Fri

Hi Marie. there's loads of us! I was diagnosed PV JAK-pos in 2011. hydroxycarbamide works for me. I take aspirin and several other medications as an indirect result of my PV. Welcome to the site. From my experience there is more support on here than anywhere else to see us through our ups and downs and Maz can get answers "straight from the horse's mouth". Sorry Dr Harrison, but you know what I mean. Wishing u all that's good. X

Hi Marie, I'm also a relative newcomer. Diagnosed with PV in July this year. So far I just take Aspirin and have had 2 venesections. I may have to take Hydroxy in the new year, but I'm holding off for now. This sight is brilliant for information and support.

I was smiling to myself at the thought of the possible new powers that may be given for the security services to look at our Emails. If anyone looks at mine, they're sure going to become an expert on MPNS!

All the best,

Sandra

tracey13 profile image
tracey13 in reply to Splb3317

My husband was very frightened to take hydroxy, but after reading on here most people tolerate it well.

I can honestly say the improvement in his tiredness has worked brilliantly.

Don't be afraid to start it. If it doesn't agree with you then you can come off it.

My husband was having monthly venesections it was taking all his iron and increasing his platelets.

The thought of being on chemotherapy is scary, but it's only a small doseage.

He takes his tablet before bed.

Good luck 🍀

Thankyou everyone for the very warm welcome! Yes, its lovely and reassuring knowing there are others to share this journey with.

My husband has the same as you he has been taking asprin for two years and regular venesection however, he started taking hydroxocarbide two weeks ago and yesterday's blood results were fantastic. He feels loads better in himself. He won't need regular venesection now.

He was constantly tired before starting the medication.

Tracey

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