Continual gout attacks

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Hi I've been diagnosed with PRV for nearly a year now and I've had Venesections and now I'm on hydroxycarmide but still keep getting attacks of gout I'm on Allupinol as well any surgestions to help would be appreciated

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  • Edited

    Hi Glenn,

    The allopurinol should take care of your gout but it takes a few months to settle into the system so you may not feel

    an immediate improvement but once it becomes effective your gout attacks should subside, and after some time should become almost forgettable.   Allopurinol is for the long term.  Gout is caused by an excess of uric acid in the blood and once this has been tempered your gout will not be a problem.  This disease is hereditary.  A sensible diet is needed.  Moderation in everything really.  Offal should be avoided and anything that creates acidity too.  It is worth having a regular blood test for gout which is also associated with Polycythaemia.  Drink plenty of water.  I have lived with this condition for very many years and cannot now remember when I last experienced any attacks.  It runs in the family.  Don't leave off the dosage even if you feel OK.    A hospital consultant once described the pain associated with gout as the most intense known to medical science.  I can believe that.   Pain-killing drugs can help.   An attack normally subsides after about 5 days.   Venesections are used in the early stages of PV but this treatment will run its course when Hyroxycarbamide is then introduced as it is more effective in controlling some aspects of the blood.  The drugs mentioned are quite compatible to use together, but Hydroxy can produce unwelcome symptoms which you should discuss with your doctor or Haematologist if you notice any effects.  Good luck

    Peter.

     

    • Posted

      Hi Peter thanks for that I have been on the Allupinol for nearly 6 mouths now but with this latest attack I've come off it and gone back on to steroids for now

    • Posted

      Hi Glenn,

      The gout attacks will still come but the time between them will gradually become greater as time passes.   In the meantime there are other treatments than can control these attacks.     It may take a couple of years or so to completely rid yourself of gout attacks with allopurinol but you will notice the changes taking place.       I know many people who take Allopurinol and swear by it but it must be considered a longer term treatment.   Flare-ups may occur but rarely cause any difficulty.   I've been free for at least 40 years, and I did really suffer initially.  

      Peter.

    • Posted

      Hi Glenn,

      Forgot to mention that Allopurinol should not be commenced during a gout attack.   If you feel one arising that is OK or after it has run its course.  This medication does not offer relief for an existing attack

      but is designed to deal with the level of uric acid outside these periods but should be used always thereafter.  Colchicine is very often used to clear the pain.

      Peter.

  • Posted

    Hi glenn76104. I also have PV and gout. The trick with gout is to avoid certain foods. Also, Avoid any alcohol. It is not allowed. Look online and discover those foods to avoid. Many fruits and vegetables do not work if you have gout. One food that is ok is cherries. We shd eat very small amounts of any meat. Protiens and purines are in meat. Hope this helps. harrishill
  • Posted

    Hi, new to the forums.

    Was diagnosed with PV 7.5 years ago with a hematocrit of 68.8. Took 4 months to bring it near normal. Still can't believe I'm alive. I get phlebotomies about every 6 weeks. No drugs!

    I live at high altitude and often work even higher. In the Rocky Mountains here the air is almost always dry and moisture in it can be virtually nonexistent in the winter. Also, I learned the hard way is that at altitude you need more hemoglobin for oxygenation to function properly. So I have to try and maintain a normal hemoglobin/Hct level which for males ranges from 45 to 54 with hemoglobin above 14, directly in conflict with virtually all hematologists world-wide.

    Please tolerate the length of my post. I like to be thorough because so little is known about the disease and so much misinformation or half-truths are spread.

    For the past 3 years have been getting a feeling that the center of the balls of my feet are swollen. It would happen when my Hct would go above 53 and usually worse at the end of the day.

    In the past year my ability to do the minimum necessary in life to avoid living under a bridge has caused me to exceed that quite a few times. In the last 4 months I have had 2 debilitating attacks in my right foot lasting over a week before being able to walk partially normal. Inadvertantly I discovered that these "attacks" of gout would come on when Hct was up and my hydration low.

    My first hematologist partly helped with the why. The disease, mainly overproducing red cells tends to make abnormally sized ones, meaning smaller both from overproduction and lack of available iron.

    Through research I learned that these small cells disrupt the major organs especially when dehydrated and/or Hct high by clogging the circulation in them.

    In Liver = higher blood toxins and less breakdown of same, uric acid being just one. In pancreas = reduced insulin. In intestines slower digestion & absorbtion. In stomach less acid and digestive ability. In kidneys = reduced filtration of the blood. So kidney and liver compromises = higher toxins in the body and uric acid (main cause of gout) starts building up in lowest parts with the least circulation usually.

    Red meat and even worse deli meats increase uric acid. Alcohol puts your liver on hold until it is all processed but increases toxins by itself also. So the longer the alcohol in the blood the longer the backlog of detox and enzyme production by the liver. In gout even one drink slows the liver from doing its hundreds of jobs and allows uric acid to build for that hour in processing and 2-4 hours later while removing the alcohol toxin breakdown product acetaldehyde which is a class 1 carcinogen though naturally found in blood in minute concentrations. Beer is worst, wine next mixed sweet drinks then pure spirits. Beer is an absolute no with gout. Yes I imbibe occasionally when NOT in the gouty stage.

    Gout in my case is a side symptom and controllable by keeping hydrated first becoming harder the higher my Hct goes up.

    For any newbies to PV. Your Hematocrit is the measure of red cells by % in your bloodstream. A typical normal is around 45% males. Your Platelets and White cells comprise another 11% leaving 44% as plasma, mainly water and is the actual liquid portion of your blood minus the actual cells.

    That plasma is mainly water, glucose for energy, and waste along with minerals, enzymes, vitamins and hormones.

    In my case until I could raise the liquid in my blood both through hydration and blood draws, my gout wouldn't subside even with large quantities of tart cherry juice. It did help though and after a phlebotomy it took about 5+ days to see my gouty feet reduce to normal.

    Tart cherry is higher in the chemical that is effective on gout than sweet cherry but both work. Real cherry juice @1 quart/liter entirely in 1st day can be almost curative. Warning: lots of sugar for those of us with blood sugar problems which are also a symptom caused by PV.

    An aside vitamin C also has also helped me reduce the pain and swelling.

    Hope my experience helps you.

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