PV and I'm new here!

PV and I'm new here!

Hello fellow PV sufferers!  I have been diagnosed with PV two years ago. Although I haven't felt well for several years.  I like many of us find the fatique so debilitating and also have recently stopped taking HU as the side effects made me feel terrible!  i have felt so go, but today started Pegasys and although been and felt so sick feeling better now.

I gave up my job in 2007, I worked part time but I also have Complex Regional Pain Syndrome, My left leg is totally knackered after 7 DVTs and 1 PE that gave me pneumonia and pleurisy. i was hospitalised for 5 weeks. I kept getting cellulitis and leg ulcers.  I worked as a medical sectretary in a GP surgery,   Using the foot pedal to work the dictaphone caused excruciating pain, I couldn't sleep due to the pain, I was a mess! I applied for NHS pension early through ill health and eventually was awarded tier 2. I also claim some benefits.  I definately am no scrounger, I have worked all my life and now I have 2 chronic progressive illnesses so have to rely on benefits!.  I am in severe pain in my legs my veins are totally knackered and I have very poor blood flow in my leg due to the DVT damage.  It's swells up and although I manage to get around. I take regular strong medication and a cocktail of other drugs that do help.

PV added in with the CRPS one thing aggravates the other.  I try to potter in the house, but need a nap after lunch.  I find sleeping at night a problem due to bone pain, but it is improving! 

I recently attended an MPN Conference in Bath and found it helpful.  It was nice to meet other PV patients and chat and compare notes. I have started Pegasys today and have felt and been sick but feeling much better now!  My photo is a bit grim but it is of my leg ulcer and is really improving now!

6 Replies

  • Hi Lps1156

    Wow you have had a rough time, I hope you can tolerate the peg interferon as it is a remarkable drug, the side effects will get easier I have been on it for a year now, I can relate to the fatigue as it is my biggest problem sometimes my body feels like a lead weight and I just can't move. Your other experiences are my fears, good luck,


  • Easy for me to say as I'm not going through the things you have had to but so you know, people on here will always give you support where they can, we all have issues to some degree but I do wish you luck and hope things continue to get better for you, I'm sure they will, chin up!

  • Sorry to hear you have had such a rough time and hope things improve for you. Keep in touch as there are lovely people on this forum who are like friends who really understand what you are going through.  Best wishes Aime xx😺

  • Hi everybody, I'm feeling so much better today! Felt a bit sick on waking so to an anti sickness. Made a lasagne for lunch, did more tidying changing my winter jumpers for tea shirts and summer clothes in my wardrobe. I've been wanting to do this for weeks and really feel good! I've drunk as much water as I can. Let's hope this continues, my HCT is around 38.5 so that's probably helping! Last night I had quite bad pain in my spleen area as the Pegasys was attacking it! Thanks everyone!

  • I don't know about where you live but after a lovely week here winter has returned, it's freezing today, so get those jumpers out again!

    Best Wishes

    Lizzie X

  • Hello Lizzie

    I live in a hamlet called Sand which is near Wedmore in Somerset! It been lovely and sunny today but I have a patio which protects you from the cold wind! My jumpers aren't that far away should I need them!

    Love Sarah

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