New member
Posted: Mon Jul 05, 2021 8:23 pm
Hi everyone. My name is Sue and I live in Sydney. I contracted legionnaires pneumonia 3 years ago and spent 10 days in hospital. Prior to that I had been very healthy, not even having a cold or a dose of flu in 20 years. In the 18 months following the pneumonia, I was exhausted, had a constant cough, night sweats, headaches, and a band of redness across my nose and cheeks which came and went. My eyes would flare bright red for a few days and my vision kept getting blurry. I also developed painful joints, with the pain moving from one joint to another. I was blaming everything on the after affects of the pneumonia. Then I started getting very breathless and had heart palpitations and pains in my chest. My doctor sent me to a lung specialist and they put a camera down into my lungs. All clear. Then I was sent to a heart specialist. All clear. Then a rheumatologist. All clear. Then at the end of last year, my big toe flared up bright red and swollen and I developed red blotches along the side of the same foot. I was in agony with the toe and could barely walk. My doctor was away, so I went to a different doctor. After 4 antibiotics, it just got progressively worse and an ultra sound showed it was inflammation and not infection. A foot specialist decided I had a deep seated ingrown toenail and I had surgery. After the surgery, the pain went crazy and even though the surgery was healing slowly, the swelling and pain kept getting worse. I ended up in emergency just after Christmas, with suspected bone infection and amputation was discussed. An mri cleared that and they sent me home with more antibiotics and heavy pain killers, to wait for my doctor to return from leave. She then suspected a rare pain condition called CRPS. I fitted all the criteria, and the orthopaedic surgeon who did the surgery agreed with her. I was put onto Lyrica which in the beginning had some really bad side effects. After about 2 months, all pain was gone and my toe went back to normal colour and size. But my chest pains, night sweats, vision problems and red eyes for worse. 8 weeks ago my doctor did a full blood count to check that the lyrica wasn’t damaging my kidneys or liver and noticed all my blood results were off the charts. She phoned me, told me she suspected PV and asked me to have a JAK 2 test, which came back positive. I was then sent to a haematologist who organised an immediate venesection and put me on aspirin. She sent me for a BMB which confirmed I have PV and ET and no unexpected nasties were discovered. I have now been on HU for 4 weeks. I am on 500mg per day. Thankfully other than exhaustion, and very cold fingers and toes, I have not had any other side effects. I had been told that a symptom of PV is often unexplained weight loss and that one of the side effects of the HU can also be weight loss. I sadly got diddled out of those ones on both counts. 
. I have never heard of PV or ET, so am trying to educate myself. Hopefully my next visit to the haematologist will be with a list of questions to ask her, instead of sitting mutely nodding my head at everything she says. Incidentally, I am now wondering if my toe issue and red blotches are connected to my PV, which then triggered the CRPS. Thank you for letting me join this group
. I have never heard of PV or ET, so am trying to educate myself. Hopefully my next visit to the haematologist will be with a list of questions to ask her, instead of sitting mutely nodding my head at everything she says. Incidentally, I am now wondering if my toe issue and red blotches are connected to my PV, which then triggered the CRPS. Thank you for letting me join this group
but it’s good to have you join us…I’m also from Sydney…