harrishill1

Hope this help's everyone with PCVR and Aquatic Pruritis or any Pruritis?

Straight to the Point the only way you will stop the itching after the shower ,Temp changes any Pruritis is to be treated with "Hydrea" (prescribed after tests by a Heamotologist) or Better still Ruxolitinib for the PVR this in turn after you get the Adjusting of the correct daily amount right it will go away and the Symptoms of the PCRV will make all bloods normal and the Symptoms Headches, Tiredness, Exhaustrion (Lethargy), Shortness of breath  whilst they will not all go away completly -are greatly reduced!

The itching is gone now' (although it came back last week for NO rhyme or reason very faint or mild and lasted for 2 days! I have no idea why) 

 

I had it so bad I was going insane and it was exactly 10 minutes after my Daily shower I cant take the Hydrea Tablet's - Beware after 3 weeks of Hydrea I had a Severe reaction (Pneumonia like) and 2 weeks in Hospital Plus I nearly died they could not work out what was wrong with me. I had told them about the Hydrea but because I had been on it for 3 - 4 weeks they “discounted it” Until I stopped taking it myself (and immediately improved) then they realised what the Problem was. 

 

I always carry this info in my wallet and I am getting a “Dog-tag ” to wear engraved with all my Details) 

 

There is nothing else that will stop it, ease it or make it go away! Plenty of do-gooders recommendations of drinking water, soaps, Oils Lotions, softer water.different water - all a waste of time? 

 

Drinking water does not stop PRV - Pruritis so you are losing sleep and up all night for nothing? My sons sister in-law (35 yrs) is the same' she has PRV - P and has been able to control it by taking the Hydrea tablets, but she has to keep adjusting the Doses. She only gets it getting into a bed that's too warm, or getting too hot once in bed putting a foot out from under the sheets etc.

So I hope that helps all of you I know what its like so debilitating ‘the hardest thing is facing up the fact that apart from what I have written here there is know Cure for pruritus as long as you have PVR - P you will have the Itch. Good luck to you all remember I had NO reaction to the Hydrea until 3 - 4 weeks after I started taking it Most people do not have my problems with it different strokes for Different Folks. The Ruxo is Very expensive and not properly on the health scheme here yet (Australia) because I had the reaction and became Anemic I was able to become a Tester for “Ruxolitinib” at the moment IF I had to buy it I could not” its $6000 for a 3 month Dose at 200 mills a day. Good-luck and I hope I have helped ease your misery Dasha

Hi, Dashdazzler, I am replying to yours and my own discussion. I am on Hydroxyurea. However, the first month I was on it, I was taking two per day. It lowered my blood and immune system. I caught pneumonia. While in hospital, my hematologist decided two was lowering my blood too much. He put me on one per day. The pneumonia came because my immune system was low. Now, ever since, I have felt good. I make sure I have a pneumonia shot so I won't get it again. So, I wouldn't be so quick to stop taking the Hydroxyurea. simply adjusting the dosage worked for me. Also, the Hydroxyurea has prevented most of the itching for me too.

harrishill   

Thats good to hear, That was not to be in my case, 2 Months after I had the reaction I took Hydroxyurea again and within 4 hours I had the same symptoms again, so Im definetley allergic to It Regards Dasha

It's like a vicious circle' Find a medicine for one illness but then you can't fix the Other illness because of the sideffects of the original Cheers for now  Dasha

The itching comes from inside mostly, riled up nerves from the hot water bringing the blood closer to the skin.  

Try shorter, cooler showers and something like a low dose benadryl, chlortrimaton is also helpful for itching.  If it's severe, ask for Hydroxyzine,  It treats the following: Treats anxiety, tension, nervousness, nausea, vomiting, allergies, skin rash, hives, and itching. This medicine is an antihistamine.

Also if you think your detergent is causing problems, switch to Dreft for baby clothing, or better yet a cup of baking soda and a cup of vinegar.  Cut out fabric softener completely.