Looking for those who suffer from itching associated with PV to describe it for me?
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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
randy1515 kevin81762
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kevin81762 randy1515
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Hi Randy... Well, here's the thing. My hct was 53 and my Hb was 18.5 (at the hospital), however, three days later, I went for additional blood work to confirm these findings, but through another agency, and in the afternoon, instead of the morning, and wha la, my hct was 47 and my hb was 17.1—significantly different. My Dr Internist said that this is likely dehydration, and that everyones Hb is higher in the morning, albeit, the numbers will very from person to person... So I waited 2 weeks, went again, and in the mid-afternoon, and wha la, my levels were the same, hct was 47 and my Hb was 17.0, so even better. Nevertheless, I have been referred to a hematologist, but I don't go until June of next year, and was reassurred by the Hematologist's secretary, that the Hematologist has reviewed all of my blood work, which has been a lot, and does not consider me as a high priority, hense my appointment date of for June. However, I remain rather unconvinced lol... and to a degree, still worry. I thinK I am going to get some more blood work done in the next week, which will be three months from my last blood work... Praying it has stayed within the normal reference ranges ...
randy1515 kevin81762
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randy1515
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kevin81762 randy1515
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Hi Randy... Yes, I've had the jak2 v617f test twice, which accounts for 96-97% of PV patients, both times it was negative. But I think I'd like the other jak2 exon 12 test done as well, which they were supposed to do and didn't. My erythropoietin was in the normal range, almost 7, which I think is good. For someone my age, I think that level is fine, it least from the research I've gathered. I know from looking at how the experts in MPN's diagnose PV, or the steps they follow in doing so, they don't even recomend testing for the jak2 exon 12 gene if your negative for the jak2 v617f and your erythropoietin level is normal. That being said, I remain rather unconvinced—hense my future hematologist appointment... Maybe I worry too much, I don;y know lol... My itching is all over the board, but I do get itchy when I sweat or workout. Most of the times, I'm just itchy on certain parts of my body, back of my legs, arms, knees, shins, but its like spots, and a lot of the times, I get bright red scratch marks/blotches, or lines, from where I itch... The Dermatologist I have seen, twice now, says I have what is called "dermagraphism" and diagnosed me by scratching my back with a chop stick thing, and when it wheeled (flared up), he said, "yep, you're 100% dermagraphic," so I don't know... I guess I'm hoping he's right, but I'm cautiously opptimistic...
Rainbows_end kevin81762
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Hi Kevin,
i suffered with really itchy skin usually after my shower or changing clothes to go to bed and lying in a warm bed, it was always worse in winter. Before I was diagosed with PV I would often sit wrapped in a wet towel to try and calm it down, the minute you start scratching its 40 times worse. I was given Cemetidine(Tagamet) which is a antihistamine type 1 the normal antihistamines are type 2 which don't work very well. This helped me I have the Jak2 gene and was diagnosed over 3 years ago. There is no rash and nothing to see on your skin, i take hydroxycarbamide 17 tablets a week which does take its toll on you, but still here alive and kicking.
Hope this helps.😜
Zapamania Rainbows_end
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I have read that the stomach pills (Ranitidine) eg. Tagamet, Zantac along with a Claritan tablet work very well for the itching. Claritan is an anti-histamine. I've never tried it but have come across it on another site.
kevin81762 Rainbows_end
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Thanks for taking the time to respond rainbows... My itching is more or less throughout the day, but certainly when I work out and sweat, and less frequiently, after a shower, but its not an intence itch, very mild, and doesn't usually last long. My dermatologist says I have dermagraphism, which can be worse when working out, or even after a shower, but I remain unconvinced I guess...
clem19079 Zapamania
Posted