Hi dears members,
I was diagnosed one year ago with PV, taking Hydroxy and asperin and since a few weeks my finger joints hurt, especially during the night when I wake up and in the morning.....has anybody experienced that?
Thank you so much.
love0826
Yes, I have exactly the same thing I've been taking hydroxycarbamide for 9 years and it's only happened in the last year or so, but may be associated with a change from ET to PV, who knows?
Thank you so much for your answer. Yes, what do we know. Even if I am taking the same med, same amount, my blood is getting better and then a little worse again, and then better, just by itself. I find the more I stress and let sadness take over, the more physical evidence I find. Because sadness is something that sets in when you learn your blood is not good, right? It is the juice of life. And then, may be the sadness was there already before PV. Like you say, who knows?
Kind regards
Hi -
I have that same thing, plus my hands are generally weaker than they were. The pain goes away in a little while after I get up, but when I wake up at night, it's pretty uncomfortable. I hadn't thought of it as being associated with they hydroxy -- figured it was another aspect of aging -- but once I thought about it, it started around the same time I started hydroxy -- about a year ago. Interesting.
Kim
This past winter I had pain in my fingers, hands, feet & toes. Sometimes it was preceded by pressure on the area but most times nothing preceded it. The strange thing is that that happened while I was living in my Florida house & when I returned to Wisconsin in May it stopped. Wisconsin is usually cooler with lower humidity but it occurred in Florida even in cooler weather. It’s possible it hasn’t happened in Wisconsin because I was sick for 8 weeks and not doing as much on my feet or with my hands. But my pain was all day long. I’m on Hydroxyurea & have ET (they “think) & Jak2+. I’d be interested in finding out if anyone else besides me had it all day. Thanks. Katie
I had the same thing while taking hydroxy for ET JAK2+ (3 years), stiff and sore especially at night time and morning. This has almost disappeared now I have started interferon (7 months).
Hi I have very stiff and sore fingers/hands, feet and knees. Its at its worst in morning and evenings ie after periods of inactivity but there is always a general feeling of achiness and def weakness all the time. It's really bad if I've been overdoing things as well. I have ET diagnosed on Sept 16. I only started on Hydroxy in Feb of this year and as these symptoms have been going on for 3 years I can't blame Hydroxy. I have had an unconfirmed diagnoses of Osteoarthritis, waiting on rheumatologist confirming next month.
I have been told all along since ET diagnoses that my joint pains are unrelated to my mpn. Interesting to read other posts who find there is a connection.
Best wishes
Mandy
Hi Love0826. I was diagnosed with ET JAK2 Positive around 8 weeks ago. I have had the same symptoms for years now were i wake up and my hands and calfs are in cramp well before being diagnosed. My finger joints have always ached all day also for years and more so if i grip something heavy to pick up my hands are numb and the pains in the joints is terrible for days before they start to settle a little but the pain is still there. I had these symptoms along with most of the other symptoms you can expect with ET since before 2008 when i went to my GP. I was diagnosed with high blood pressure and put on medication for that but the symptoms continued. They then gave me injections for Carpul tunnel syndrome which never worked. They then sent me for electric shock treatment then told me they could not find anything wrong with me. I was back at my GP several times again over the years with the same symptoms and all they did was change my blood pressure medication but again the symptoms continued. I think the GP just put it down to the blood pressure in the end even though that was now controlled so i just let it go as i was getting nowhere with complaining about it. I ended up having a mini stroke around 10 weeks ago and then they found i had ET which explains the symptoms i have continuously complained about. I dont think the hydroxy is the cause of my symptoms as i am more or less the same taking it only more fatigued now which will be the hydroxy.
I am sorry to hear about your complications. All the best, be strong and keep finding some beauty every day.
There is no pain in my fingers but they have swollen a bit....is there any swelling in ur case??
Dear vipulm12, yes sometimes there is a little swelling, but not all the time. I guess I only brought the finger thing up, because I am exercising and doing Yoga and the aching is new. Compared to what other people go through, I feel already silly to mention it. Kind regards.
Yes! It seems that over the course of sleeping, I have my index finger that swells..cannot bend it and cannot touch it for it hurts. Then the rest of my fingers get very sore. I was told carpel tunnel as well, but your fingers do not swell with that. Dueling course of day, swelling goes away and just leaves aching. Going to hematologist Monday for chk up and labs. Need to see if I can take more iron for energy levels come and go..
Take care everyone!
Sheryl
Ya same thing happens with me too.only index finger hurts a little when I sleep.btw my energy level is okay....not even little bit change....may b bcoz venesection hv not yet started and iam just on aspirin....
yes, I wake up with achy fingers, knees back, well just about everywhere really. What I do find helpful with my hands is that I knit or crochet non stop. I am in the middle of crocheting a victorian christening shawl which will be 5' across and on top of that a vintage christening dress, bonnet and bootie set made of the finest cotton ever. Doing this keeps my fingers nimble and minimizes the aching, just wish I could do something with the rest of my body!
Your answer jillydabrat brought tears to my eyes, because it is so beautiful how you were describing your shawl. Yes, it helps to move the fingers and body. I exercise and do Yoga every day. Warm regards.
Diet diet diet! We are what we eat. Cut out sugar, prosessed foods, etc. Eat natural organic if possible grass feed meat or ocean harvested fish etc. Lots of leafy greens are anti inflammation. They won't hurt you and may prove to be beneficial. My Hemo told me from day one to avoid medication for as long as possible as all medications are slow poisons. Unfortunately 9 years on any drug is not going to be good so try and undo the bad things by doing the really good things. Moderate exercise and good food.
And by the way chin up. I have just lost 2 friends in the last 7 days. One 26 years old and one 47 years old. Both natural causes but not detected or forseen. Chins up!
We are still alive and going forward. Be greatful for what we have, not we have lost!
Regards
Guy
Yes, Guy, that is the only way to go forward. I agree. Focus on what we have, not what we have lost. Kind regards.
Oh, Guy, I feel I can ask you that. Do you believe in healing? I mean healing through ones own mind, believe and change? Not healing through medication. I was wondering, if anybody here has thought about that.....perhaps I should ask the question to all. I am very much into that, studying the topic and seeing sometimes miracles happen......
Hi there - I've just joined the group and YES, I do! My diagnosis 12 yrs ago set me on a journey of discovery into the connection between mind, body, spirit and emotions. The power of the mind is enormous, especially if the body is supported with positive emotions and good nutrition. Miracles do happen.........
Thank you so much SR-67, for your beautiful answer!
Yes I do believe that our own minds hold the key. We need medicine and to eat the right twigs etc as well but our own belief and state of mind are critical. If do not believe it will happen it never will.
Regards
Guy
Fingers shriveling on palm side
Any one know anything about curcumin supplements?
Fingers sore...PV or arthritis?
pain and numbness in finger tips 
Would any one being treated for an MPN at the Churchill Hospital, Oxford like get in touch?
