Hi I have PV been taking hydroxy for 5 years. I have terrible joint pain ,muscle pain and severe fatigue that comes and goes. My last bout lasted 6 weeks of felling like my body been filled with concrete. Can't keep my eyes open and just pain all over my body. When I contact my doctor she says it's all symptoms of my PV and to see my haematologist. When I go to the hospital she dismisses all my symptoms and says its probably my arthritis. She tells me it's nothing to do with PV. I'm at a loss as my bouts are getting more frequent and lasting longer each time and I'm just left to deal with it. I feel I'm getting no where as one passes me to the other so I gave up asking. I now just put up with it but it gets me down as I'm unable to do anything while I'm fatigued and sore.we don't have an mpn speciacialist at my hospital .Also my pain in hips is deep and feels like a toothache kind of pain. It keeps me awake.
Any help appreciated thank you
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Reikiray
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What you are describing sounds like a potential combination of PV symptoms and hydroxycarbamide adverse effects. You definitely need a second opinion from a MPN Specialist. Do whatever it takes to get MPN expert consultation. Alteration of your care plan could make a huge difference in your quality of life.
While waiting to get the MPN Specialist consult set up, you can arrange to be checked for gout. It is very easy to check your uric acid levels, which can be elevated by the hydroxycarbamide.
Note that hydroxyurea can also cause pain in the extremities, body pain, and fatigue. It can be tricky to figure out the cause of symptoms when PV can also cause some of the symptoms you experience. Sometimes timing of when the symptom began is the only clue.
It sounds like the message from your current hospital is "we do not know how to help you." There are certainly other options for treating the PV that may work better for you in managing the disease. You would benefit from a MPN Specialist guiding your care. It is worth going to a different hospital to make this happen.
Thank you for replying . My haematologist told me it's mild and completely safe they give it to babies. I got put on jakavi and I had a flare up of the aches pains and fatigue. She said she has never seen anyone go on that and not feel fantastic. I got put back on hydroxy.
If you find the hydroxy is not working for you the other option is one of the interferons, Pegasys or Besremi. Like hydroxy, Pegasys is off-label for PV, but both are in common use. Besremi does have an indication for PV. I found the interferons to be much more effective and easier to tolerate than hydroxy or venesections.
Here is a bit of useful information on hydroxycarbamide (AKA hydroxyurea).
I agree totally with what Hunter said [as I usually do!]
My first thoughts were the your symptoms could or were likely HU side-effects, because I had them too.
In truth, I also had more joint pain and bone-crushing fatigue before I was diagnosed with PV in 2022 and started treatment. It never got any better while I was on Hu, but it has been almost entirely gone since shortly after I started on interferon.
Ask to see an MPN Specialist. Ask for a Scan. Do you exercise? Daily walks and exercise help me, together with Mindfulness - it takes practice but the benefits are worth the effort...
I see..... sorry to hear this....some days can be an effort ... I agree with Spanelmad, find an MPN specialist and .... also Jointpain, ask for a B12 test... take care
I (M,PV,67)had the same issues (but no fatigue) two years ago. Have you had blood tests for arthritis? It turned out that I had an autoimmune attack that looked like Rheumatoid Arthritis (RA). But I did not present as a typical patient and all joints looked good. .There are blood markers that identify RA and similar internal joint attacks. The good news is that I went onto a few weeks of cortisone followed by Hydroxychloroquine. After a few months I was (and remain) 100% cured of the awful joint pain and stiffness.I still take the Hydroxychloroquine as well as the HydroxyUrea.
I have arthritis in my knee both hip and spine. So I think that's why my haematologist blames everything on that. But I can have pain in every joint in my body and all my muscles and fatigue. I can't concentrate on any thing either when I'm going through this my eyes hurt and fuzzy. I've had eye test and new glasses but didn't help.
Are you taking omeprezole or similar to protect your stomach? If so, you may have depleted your vitamin B12 stores which from experience can give the pains in joints you describe, hence my name! Get a blood test for B12 blood serum, if low, and low really means below around 250 get injected frequently.
Well done, make sure you get the actual numbers from your GP for your blood serum B12 level. They will only prescribe B12 tablets these days, if you are lucky. I have to inject every three days to feel OK. My wife is on hydroxycarbamide and a number of other medicines including omeprezole. I insist she takes vitamin B12 each day and when she was hospitalised she had her B12 checked and it was normal, which can be put down to the tablets, in spite of the omeprezole.Check out the pernicious anemia health unlocked, your symptoms are classic.
Hi, I am in a very similar place as you. Been on HU about 8years. The heamatologist totally dismisses symptoms and is only interested in blood numbers. Like you, I now just put up and shut up.
Hi, I definitely agree with others suggesting that you get to see an MPN specialist . Ask Maz for some pointers to hospitals accessible for you.
Also, consider trying Ruxolitinib again at some point. If you have arthritis flare ups then your previous experience with Rux might have been misleading. When several conditions are going on at the same time it's hard to disentangle cause and effect.
I have been taking Rux for 9 years and it has given me my life back.
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The joint pain is getting beyond bearable
Besremi check with RN 
ET and Joint Pain
FATIGUE - PV
