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Sometimes I think I am going crazy.

Posted , 3 users are following.

dianne70747
dianne70747

Living with the side effects of PRV is very difficult.  Having a shower cause extreme itching.  I take a Telfast fast acting antihistimine but they do not always work.  My itching can last up to 3 hours.  It is like a burning intense agrevation.  Five minutes after I have dried myself, my skin looks terribly dry and if I rub my arms the skin flakes off like dandruff.  Once I have settled down my skin does not look dry anymore.  While I have the itching, burning feeling my body feels like my blood is boiling and thumping through my body.  When I have stopped itching my head feels strange like I have a dull pressure type headache.  I have had PRV for many years now and have been taking Hydrea and asprin.  I have a venesection every 3 to 6 months.  My itching is also triggered if I change my clothes, get bitten by insects or get into cold sheets and changes in temperature.  When I get cold and start itching if I have a very hot shower with the water on the top of my head that relieves the itching.  I have tried acupuncture but after about five treatments I started to get strange headaches similar to the pressure headache I mentioned earlier.

Drinking iced water and shaking or jumping on the spot also relieves the itch but hard to keep up for a long period of time. I find as I get older it is harder to cope with this complaint.

0 likes, 8 replies

8 Replies

  • harrishill1
    harrishill1 dianne70747

    Posted

    Hi Dianne, I  get itchy too. After my shower before bed. However, I noticed once, my bras were causing extreme soreness like an itch. I realized I had ti wash them with less soap. That solved the problem immediately. Maybe some anti-itch lotions would help. I may try that.

    Harrishill

  • nandrews
    nandrews dianne70747

    Posted

    Sorry to hear of your problems.

    I don't have those myself, so this doesn't represent much help.

    Maybe you need to look to change something you regularly do (if you can't identify anything which you do before you get itchy). Maybe look to your diet and try changing everything for a day (or two) and see if that stops or changes the symptoms. Maybe look to using a different soap/body wash, washing powder.

    Have you tried any topical (external) creams/lotions etc. to reduce the effects?

    I remember when very young, I suffered itching (unconnected to PRV) and my mother used calomine lotion.

    It sounds most frustrating but I am sure there must be either a cure or something to at least ease the symptoms.

    Keep in touch.

    Nigel

    • dianne70747
      dianne70747 nandrews

      Posted

      I have tried many different things over the years but nothing seems to work.  I no longer wash with any type of soap or body wash.  I use chemical free shampoo.  I wash with sensative detergent.  I have tried ultra violet treatment, acupuncture, natropathy.  I changed my diet for two years without any changes to my skin. 

      I have tried creams which seem to trap the itch and  make it worse.  Applying Isocol or vinegar with a cotton ball is about the only thing that gives some releif but not always. I avoid spices as they heat the blood and can cause the itching.

      Dianne

       

  • nandrews
    nandrews dianne70747

    Posted

    It does sound like you have been and are still going thru' the mill. I can't imagine how uncomfortable and distressing it must be.

    This question may seem way too obvious, but have you sought medical advice? You haven't mentioned it as such. It maybe that these treatments you have been trying are suggested by a doctor or dermatologist. But if not I would have thought it was a strong case for seeking their advice. But more so I would have thought a case that a specialist would take a great interest in and want to find the solution to. Afterall you have found some ways to reduce the discomfort effect and so that at least is something a researcher could follow to find a more permenant solution.

    Nigel

    • dianne70747
      dianne70747 nandrews

      Posted

      Nigel

      I have spoken to my Gp and havtried various antihistamines.  Had UV treatment.  I have tried acupuncture.  I have been to two different naturopaths.  Most people think they can help and if asked if they have treated people with similar conditions they say yes.  After a few visits it becomes clear that they have never had anyone with anything like I have.  The first naturopath put slides of my blood under his microscrope and said my platelets looked strange.  Two days later I had a heart attack.  I had a 90 percent blockage of my left coronary artery and had a stent implant.  I have tried various lotions and creams with no results.  About 4 or more years ago I was able to purchase a product called Mozzie Free.  It was a thiamine based liquid that I took each day and when I got itchy during the day or night I took an extra dose and it was great.  It was taken off the market.  I have tried taking vitamin B1 but it doesn't have the same effect. My hematoligist said he has tried to get me into a research program but no one is looking at the problem of itching.  I live in hope that one day things will change.  I make the most of days that I don't itch.

      Dianne

  • nandrews
    nandrews dianne70747

    Posted

    Well you have been through it - even more than I gathered from your previous postings. So no wonder at the title you gave to this thread!

    I do hope that you do find an interested individual or group that would take on your case. It sounds both somewhat unique and a project that a researcher could really get to grips with. As I say you have some clues in ways that have helped you or partly so in the past. So it's by no means a lost cause and just what an aspiring medical student might take up for mutual benefit.

    I'm sorry I can't offer any more than that, but I wish you well and hope your itch free times outweigh the rest.

    Nigel

     

  • harrishill1
    harrishill1 dianne70747

    Posted

    Hi, I have PV and also itch. There is an oatmeal soap available in stores such as sprouts. Also, Nivea lotion is good. Some sprays also help, and sprays are easier to use on your own back. Also, try washing your clothing in a milder soap.

    Harrishill 

    • dianne70747
      dianne70747 harrishill1

      Posted

      Hi, I have tried every different type of soap, lotion,  body wash but nothing works. I have tried washing with sorbolene but it does not work. I don't wash my skin with anything.  I use chemical free shampoo.  I wash  with sensative detergent and rinse with vinegar.  Tonight I got into bed and my left leg started itching, now both my legs are itching, the back of my left hand is swollen, the veins in my right hand are swollen and standing out.  I have taken an antihistamine and I am drinking iced water.  It is 30 minutes since I started itching. Now I wait for it to stop and the swelling to go down. This is what a change in temperature can do.

      Dianne

       

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