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Hypermetabolism

Posted , 4 users are following.

nandrews
nandrews

I learnt something new about PRV, for me at least, when visiting a routine clinic appointment recently. I was wondering if some symptoms that I hadn't previously connected were caused by PRV. The symptoms were extreme sleepiness at unreasonable times, such as within couple of hours of waking up. Also some slight disorientation and confusion at times when I felt I should be clear headed. The doctor I spoke with said that the hieghtened activity in my bone marrow would be causing an increased metabolic rate.

So, he said, it would be like I was going for a run or doing some strenuous exercise! It helps to explain away the symptoms I was worried about. He suggsted it could also cause wieght loss, which sadly doesn't affect me, though I could do with losing some!

I found some medical references online which supported this suggestion saying "Hypermetabolism can cause low-grade fevers and weight loss and suggests progression to spent-phase polycythemia". I get the fevers though I would regard them as low -grade. I'll have to find out what the last part means.

Nigel

0 likes, 16 replies

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  • harrishill1
    harrishill1 nandrews

    Posted

    Hi, nandrews. Yes, getting overheated easily, and sweating is one of the symptoms of PV and also PRV. I do hate my head sweating whenever I exercise or clean my home. It means I wash my hair, and have to put products in and curl it, lots of work. Sometimews, though when we get cooler weather, I don't sweat as much. I am patiently waiting for winter. Harrishill
  • monneywese
    monneywese nandrews

    Posted

    Yes, Nigel, I have these exact symptoms, and it is very annoying - that is, unless I want to phone family in UK - then being up in the middle of the night helps:0!

    I do wonder what the spent phase means - I sure do feel mighty spent!

    Marilyn

  • janet37924
    janet37924 nandrews

    Posted

    Hello again.

    I do feel a lot hotter than I used to.

    And sleepy and a bit "spaced out"

    Reassuring to know I'm not on my own.

    Janet

    • nandrews
      nandrews janet37924

      Posted

      Well that's how these kind of sites can benefit by sharing ideas and symptoms so that maybe we can feel easier knowing it is not just us alone.

      Tho' I am told I have had PRV for about 22 years it's only in the last 4 or 5 years that things have caught up with me more.

      I am unemployed, due to the symptoms and so if I get sleepy then I can just go to sleep. Or if I am feverish then I can cry off the few duties that I have.

      I would be interested if anyone else suffers fevers. In the most extreme they are very dibilitating. Tho' they start with a 'hyper' feeling (being very alert) along with increasingly bad shakes and tightness in the stomach. I quickly retire to bed with a litre bottle of a glucose energy drink and take a strong analgesic (co-proxamol). But after about an hour or so the fever takes hold and I become weak and hardly able to rasie myself even to go to the toilet! Usually the high temperature brings on vomiting or at least wretching. After about 6 or 7 hours the worst of the fever passes and I am left very exhausted.

      It usually takes me about 3 days to get back to normal strength.

      Sorry for going on about this, for those that don't suffer. But for me this is the worst thing about my PRV symptoms and it would be great at least to find soemone who suffers in a similar way.

      Nigel

  • harrishill1
    harrishill1 nandrews

    Posted

    Hi nandrews, I wonder if you see your hematologist once every couple of months? Have you discussed these symproms with him? maybe he could adjust your meds or something? I am at the stage where I get too hot, especially since I live in california where it's hot. I notice the heat bothers me more than my daughter etc. I am still feeling pretty well after 4 yrs diagnosis. However, like right now, I am sitting in my room with the fan on, and my forehead is sweaty. I will have a cool shower around 8pm cause that cools me down for a while. Usually I can sleep well, with the fan on, and windows open at night. I walk for 40 mins to an hour in the AM. If I walk early, I don't sweat too much, but if I clean the kitchen and do a few chores, I drip sweat from the head. Like you, I think I am getting hot more than I did last year. Let me know how things go with you.

    harrishill 

    • nandrews
      nandrews harrishill1

      Posted

      Thanks for your concern.

      Sorry you also have problems, thoiugh yours  sound more continuous.

      When you say you get hot do you take your temperature? Initially I took my temps, when the fever cause was 'unknown' and often they would be above 100 F. I get times when I feel hot and I also like to have a fan going, especially on hot days. But for me that maybe for other reasons.

      You do well in getting the regular exercise that you do. I should learn a lesson from that.

      Nigel

       

    • nandrews
      nandrews harrishill1

      Posted

      and just to add.

      I do bring the subject up on occasion with the hematologist, as I did just last week. But I think they just regard it as an unfortunate but one of the inevitable effects of PRV.

      It was at that same appointment that this consultant mentioned hypermetabolism as another effect.

      Nigel

  • harrishill1
    harrishill1 nandrews

    Posted

    Hi nandrews, I really wonder if it could be your meds causing the vomiting and stomach clenching. I know, we can't all tolerate the same meds. Hydroxyurea works well for me. But sometimes we are taking some other meds for arthritis, etc. I think sometimes other meds can interact with our meds for PV in a bad way. That's why I don't take arthritis meds. I have rheumatoid, but don't want to take the meds cause they are immune suppressants, and blood thinners, and I know Hydroxyurea also does that. I don't take my temp, but I know it must go up after my walk, and when I clean the kitchen or go to the gym after, my head drips sweat. I cool down when I shower, though. I reward myself with reading quietly in my room. I usually feel good, so I hate to think you have vomiting and stomach clenching. Really examine what meds you are taking, even over the counter, or even vitamins. Cholesterol lowering drugs can be bad too. Maybe discuss it with your GP. Gout camew ith my disease, and I can'teat  certain foods, also can't eat late at night. Can't even drink a sweet drink before bed, or I will almost vomit in my sleep. I eat early a few hrs before bed. Hope that helps you.

    harrishill

    • nandrews
      nandrews harrishill1

      Posted

      Thanks for your detailed suggestions.

      I'm afraid I am inclined to look to my GP and consultants to advise me if there are problems with the medications they prescribe. Aside from those, I don't take any other meds and vitamins and sleep aids are the only other pils. Tho' I am sure they don't know everything.

      The fevers I have had almost since day one. That is, right after I had my first liver transplant (which was a result of undetected PRV causing a blood clot in the major vein from the liver). So the fevers have been under the eyes of those medicos since then and indeed they have tried to diagnose them on various occasions.

      Curiously, tho' the PRV was known from when I needed the transplant. For a number of yeard I was told the fevers were due to other reasons. It was only about 7 years ago, when it was mentioned to me in a 'matter of fact' way that it was the obvious cause of the fevers! Perhaps I should have dug deeper as to why the earlier wrong diagnoses, but one doesn't like to cause waves when you are looking to people to care for you.

      I should qualify that the worst fevers only hit me about every two or three months. Between times I get much milder syptoms or indeed nothng at all. I haven't, in all the years, been able to link any one thing as a trigger for a bad fever. But I count myself lucky that I am not more badly affected.

      Thanks

      Nigel

  • harrishill1
    harrishill1 nandrews

    Posted

    Hi again, nandrews. I didn't know your worst fevers come only every few months. I take Hydroxyurea, and I know it can lower the immune system. When I first started taking it, I was on 2 per day. It lowered my immune system and I got pneumonia. While in hospital, my hematologist told me to take only one per day. Since then, I haven't become ill, even though he eventually had to raise my meds to two a day exceptf or 2 days per week. MY blood is staying at a normal level right now. I always get my flu shots and also shots to prevent pneumonia.  I would hate to get a real fever and not know why. I just get overheated when I clean a lot, or exercise a lot which I do every morning. I cool down after a shower, but I feelth e heat more than my family does.

    harrishill

    • nandrews
      nandrews harrishill1

      Posted

      Sorry if I gave the impression my fevers happen more often. They occur on average once in 2 months, but when they occur is random. I have had occasions when one fever has been followed by another within 2 or 3 days, which is quite hard to cope with. Indeed if always they occured with that frequency I truley believe they would kill me, they are so debilitating!

      Nigel

  • harrishill1
    harrishill1 nandrews

    Posted

    Hi, nandrews, I see, it really makes me wonder since you get a fever every couple of months, if it is because you catch something. I mean, I don't know which drug you're on, but I know Hydroxyurea can cause a lowered immune system. I seem to get a sinus infection sometimes. It took me a while to realize what it was. It then developed into an allergy. I try to always wash my hands after being shopping or working out at the gym. I hate getting a sinus infection. We have to be very careful not to get pneumonia too.

    Harrishill

    • nandrews
      nandrews harrishill1

      Posted

      Thanks for your concern. For clarity the fevers occur on average once in two months, but they can occur at any time.

      Since my first liver transplant, when they started, I have looked at many possible causes for the fevers and indeed the doctors have investigated too. Once, about 12 years ago, even doing an internal investigation without result. Only about 8 years ago was I told that I have PRV, though I have been on hydroxyurea since after the first transplant. So it must have been diagnosed since then. I am on immunosuppression for the transplant.

      I too try to keep things hygenic tho' not obsessively so.

      Thanks

      Nigel

  • harrishill1
    harrishill1 nandrews

    Posted

    Okay, now i'm finally getting it. The immunosupressant drugs could cause a lot of problems. How long do you have to be on them? Will your doctor change the dosage at a certain point?

    harrishill

    • nandrews
      nandrews harrishill1

      Posted

      I have been on immunosupression since the first transplant (22 years ago) and will be for life as my body will always see the donor liver as strange. I have been on 3 such medications, intially the well known cyclosporin, then tacrolimus and finally sirolimus which was introuduced due to declining kidney function under the second regime. I should at this point say how grateful I am for the medical facilities (in the UK) and also to the donors and families for their generosity which has enabled me to live, and to live reasonably well.

      Even though the third transplant was done with urgency, due to the rejection of the second. Nevertheless the results from tests have always be very good. So I do not expect my consultant to adjust any medication, at least in the near future.

      Gratefully

      Nigel

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