1. Community
  2. Blood & Immune System
  3. Polycythaemia Rubra Vera

Looking for those who suffer from itching associated with PV to describe it for me?

Posted , 8 users are following.

kevin81762
kevin81762

Hi everyone, I was wondering if those who suffer from PV, could maybe describe their itching for me in detail? For example; is there a rash? Are there any marks? When does it occur? When is it the worst? How long after water contact? Etc.... 

On another note, my hemaglobin has shot back up (18.5), my RBC' are up (6.14) normal is 6.00, and my hemamotcrit (.53), is still under the range provided at my local hospital (.54), it isn't far from being over... The poor nurse had a difficult time drawing my blood, and I knew right away that that was not good.. Dr did not seem to concerned though lol, go figure. I've tested negative for the predominant jak2 v617f mutation (96-97% are positive), but I'd be willing to bet my pension that I fall in that small minority who test positive for the other jak 2 exon 12 mutation, nothing else really makes sense. I don't smoke, quite 18 years ago, I don't live at a high altitude.... I have headaches at night, my joints hurt a little, not much though. I itch, and my stomach feels nauseated, and I've been sweating more, although I've always sweated in the heat. I don't feel fatigued at all though, and as far as I can tell, I don't have a ruddy complextion, tanned, but I don't look red. I guess one positive note is that my GP has finally referred me to a hematologist, its only taken him a year lol....   

0 likes, 29 replies

29 Replies

Next
  • clem19079
    clem19079 kevin81762

    Posted

    The itching is usually caused by bathing in warm water. Though in my experience it can happen anytime and is usually a warning that your blood count is climbing ( thats when the ceterizine doesn't work. Ceterizine is a hayfever drug, i usually take 2 or 3 each day, ( their harmless) there are lots of over the counter meds for nausea) .

    I hadn't been feeling well recently i have all of the symptoms which you describe. I had a pint taken off last wednesday, but dont feel any better. All you can . As for descibing an itch, i dont know how to describe it other than it feels like its under the skin and not on the surface a lot of the time, hence the small scars on my arms and legs. I hope you dont have this discease rather something that can be treated and cured. Ps thr lethargy is s result of being low in iron, its something i have to live with. If your not low in iron then maybe you dont have either pv or prv. All thr best.

    • kevin81762
      kevin81762 clem19079

      Posted

      Thanks for responding Clem... When they checked my ferritin levels (I am assuming that is my Iron) I was fine, right in the middle, 143; with 22 to 322 for an adult male. And that measure wasn't long after I donated blood, so I suspect if was actually higher. 

      Have you always had the symptoms I mentioned Clem? Do they come and go? I don't feel lethargic at all, energy level is good, just feel emoitionally taxed from the anxiety this has caused me. My itch feels like its surface, just nothing there, other than bright red marks when i rub or scratch. The itching has subsided to a degree though. 

       

    • clem19079
      clem19079 kevin81762

      Posted

      The itching could be anxiety and yes i generally feel the way i describe. If i do anything taxing i usually feel worse, that also seems to cause a spike in my blood levels. I gave my cottage a mskeover recently and that made me very ill . It was a case of work one day spend the next day in bed. Anything that didnt require noise i did during the night when i couldnt sleep. Very debilitating, not a good place to be. I realise now, if i want something that requires labour , i sm gonna have to pay folk and thats not my style never has been.
    • kevin81762
      kevin81762 clem19079

      Posted

      Thanks Clem.... Sorry for all the questions too... Have you ever experienced bone pain, in particular, the shin. I get these pains, not debilitating or anything, but there sort of sharp and tender, and they fade in and out briefly and then they're gone... Not a lot, but, I have noticed it. Don't know if its muscle related or something else... I hope to find out soon though. Where is your cottage Clem? My wife and I own one North of Kingston (Ontario of course). 

    • clem19079
      clem19079 kevin81762

      Posted

      Ireland. Yea, i suffer nerve snd bone pain, i take three different painkiller every day. As for the pain in knees , i dont know what you got but for me its arthritus in both knees. Dont mind the questions, how else do we learn .
    • kevin81762
      kevin81762 clem19079

      Posted

      Thanks Clem, you're the best... Don't know what I have yet, but I'm pretty sure its PV... I have no idea what else it could be...  I guess I should find out soon, I hope... Do you itch after water exposure, shower, swimming etc?

  • dianne70747
    dianne70747 kevin81762

    Posted

    Hi Kevin, I have had PRV for over 17 years.  Having a shower makes me itch.  My skin feels like something is crawling on me.  Sometimes I have a rash sometimes I don't.  Itching usually starts within five minutes of getting out of the shower and can last for up to 3 hours.  When I get itchy from a change in temperature like trying on clothes or just changing out of one thing to another I will have a really hot shower which has to be on the top of my head and that will stop the itch.  If I worry about things it can make me itch.  I can scratch my skin and it comes off like talcom powder and my legs will have scratch marks but once the itch stops there is no sign of scratch marks and the skin looks normal.  I take anti histamines and try to do something to take my mind off it.  It can make me feel like I am going crazy.  I jump up and down and shake my arms and that will help the itch.  It is the pits.  Regards Dianne

    • kevin81762
      kevin81762 dianne70747

      Posted

      Hi Dianne... Thanks for posting... Has your skin always itched like this, that is, from the beginning? I will gets a spot on my body that will itch, won't last long. As far as water goes, most of the time I am good after a hot shower, and if I do itch, it might be like one part on my shoulder (rarely) or maybe a part of my arm or shin area and it doesn't last more than 10 mins at the most, maybe a little longer, and its not debilitating. But it doesn't happen enough to distinguish any pattern... I can go weeks without water causing itchiness. My itch seems to be more throughout the day, but mild in terms of discomfort. Its certainly not debilitating. I will say that at the cottage, there's been a few times where I have gotten out of the lake and I itch, and its annoying, but never lasts long... Maybe that is what it will be like for me, because if there's one thing I've learned about PV, is that it effetcs everyone differently. If you don't mind me asking, when were you diagnosed. I am so worried about long term prognosis. I am only 40 years old, and wanted to live until I was 80... or older...  

  • david02304
    david02304 kevin81762

    Posted

    I itch, not just from hot water but caused by sudden change in temperature.There are no marks on the skin, I do sweat but often a cold sweat. It is confined to my torso and arms, mainly left.

    I have a quick daily shower and immediately after put a shirt on

    I control it by having clothes to hand I can take on or off, my skin can change temperature in seconds. Ranitidine if taken when I feel itching starting helps control it.

    I am UK based. I see my consultant every three months. At the moment he is happy I am controlling it.

    My various readings are only just outside normal, much improved than when I was first diagnosed.

    I have no other symptons. I am on asprin and monthly venesections. I was diagnosed 6 years ago, I have now made 80 and apart from this I am healthy. ( I do have a replacement knee which has made me feel five years younger)

  • joycem
    joycem kevin81762

    Posted

    Hi, I itch after a shower, especially if I dress straight away afterwards. (try not to have the shower too warm) I also get burning sensations on my torso and feet but this seems to have dropped off a bit now the weather is getting colder.  However, now that it's getting colder my hands are colder than ever!

  • Zapamania
    Zapamania kevin81762

    Posted

    Hi Kevin  even though your post is old I'm new to this group & have reading all posts.  I was dx with Pv 4 yrs ago.  I wasn't on any meds till October when my platelets reached 1 million.  I'm on Jakafi for 3 weeks.  My itching is only after a shower the coolest I could tolerate.  It starts as soon as I dry off.  Only on the top of my thighs and top of arms. I slather on Benadryl cream and it calms down quickly.  I've read that Zantac for the stomach helps.  I haven't tried it. Sometimes I take a half Benadryl tablet.  It's something to do with our histamines.  And Benadryl is an anti-histamine. Hope this helps.  No rash by the way.  Linda

    • kevin81762
      kevin81762 Zapamania

      Posted

      Thanks Linda.... I have been investigated for both jak2 mutations, both of which were negative, and my EPO is within the normal range almost 7 I believe. My Internest (Dr) does not believe I have PV, but my GP has referred me to a hematologist, who I see in June of next year lol... Leaving me wondering if the hematologist is at all concerned. My itching, although sometimes after a water exposure of any tempature, is on and off throughout the day and the Dermatologist says he's 100% sure that I have what he has called, dermagraphism...! Not sure what else I can do

      .. 

    • Zapamania
      Zapamania kevin81762

      Posted

      Hi Kevin hopefully you don't have Pv.  The hematologist is in June?  Isn't that too long away?  The itching after water is an indicator but I guess it could be something else.  Good luck and let me know your outcome.  Linda

    • kevin81762
      kevin81762 Zapamania

      Posted

      Well, I gather from the wait time that they don't consider me a high enough priority to warrent a sooner date. According to my Internist Dr, I don't have PV, as vertually all PV patients harbour a jak2 gene mutation, and I tested negative for both. I don't itch always itch after a warm shower. In fact, I would say it doesn't happen much at all, and if it does, its very mild. That being said, I still would like to see the hematologist, as I have a few questions. Also, my last two blood counts were well within the normal range. I will for sure, but it might be awhile before I do lol....  

    • Zapamania
      Zapamania kevin81762

      Posted

      Hi Kevin it doesn't sound like Pv cause you blood counts were in normal range.  Hopefully it isn't.  This is a miserable disease.  Linda

    • kevin81762
      kevin81762 Zapamania

      Posted

      Thanks Linda, I hope so too.... Regardless, I have a new found respect for anyone who has this disease, or any MPN for that matter. This discussion form has been incredible and the people here have been top shelf, willing to answer any questions and share their own stories... 
    • Zapamania
      Zapamania kevin81762

      Posted

      Hi Kevin are you in the US or the UK?  I didn't realize at first that this site must originate from the UK.  The people on this line are really amazing. They are so kind & helpful.  I stumbled upon it and I'm glad I did.  I hope you don't belong here but it's been nice meeting you.  I'm from New Jersey.  Please let us know what your diagnosis is.  Good luck. 😊 Linda

    • kevin81762
      kevin81762 Zapamania

      Posted

      Hi Linda... Actually, I'm in Ontario Canada, just outside of Toronto, so not to far from you...and yes, I will for sure... 

    • Zapamania
      Zapamania kevin81762

      Posted

      Hi Kevin Canada is nice.  Been there twice.  Very clean.  I'm glad you're not one of us as I said before this is a miserable unknown disease.  Please let us know when you know your dx.  Nice speaking with you.  Linda

Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.