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not much pain but always tired.

Posted , 6 users are following.

vanessa66630
vanessa66630

hi, have been on lodotra for about 4 months now and think I have had pmg for at least 2 years before being diagnosed, most of pain has gone but still feel tired most of time, would be happy to stay in bed but obviously dont, is this normal? started on 15mg now down to 9 mg, has made me gain a lot of weight but has done nothing to make me hungry, find this very hard as my appetite has been poor for the last 2 years does anyone else feel like this?

1 like, 12 replies

12 Replies

  • tina-uk_cwall
    tina-uk_cwall vanessa66630

    Posted

    Hi Vanessa, sorry you are feeling unwell. Fatigue is a common complaint of PMR and why not our bodies are being put through tremendous strains what with all the inflamation, stiffness, pain and then drugs. Also weight gain is a side effect of steriods. I don't think that I feel any more hungerier than I use to yet I have put on abit of weight! I believe that what you are feeling is quite normal. Christina
  • constance.de
    constance.de vanessa66630

    Posted

    Believe it or not, I think you are one of the "lucky" ones.  (You won't believe it at the moment though!).  

    I have had PMR for 3 1/2 years, have always been in pain and am always tired.  Doctor does accept I'm atypical. I am sure you will be able to cope soon.  The experts will advise.

  • EileenH
    EileenH vanessa66630

    Posted

    The pred has no effect on the underlying autoimmune disorder that causes the symptoms we call PMR - so the fatigue that that causes remains. In that sense, yes it is "normal", perhaps "usual" would be a better word.

    The fatigue is something you have to learn to manage, the pred manages the pain and stiffness. Rest and pacing yourself is the way to manage the fatigue. You have to be careful not to overdo things when you do feel well enough to do them and for some people an afternoon nap actually gives them far more useful time in the day when they feel less exhausted. Getting out into the fresh air also seems to help many , even if they don't do much, a half hour stroll can make a lot of difference. 

    Have you had your vit D level checked? If that is low it can leave you feeling very tired and that is common in all autoimmune disorders.

    Can't really help over the weight gain - I've steadily LOST weight since starting Lodotra as I think I have told you, though I eat next to no carbs which does make a big difference. Maybe you need to overhaul what you DO eat. Fluid retention is also associated with pred and eating carbs.

  • charlie44644
    charlie44644 vanessa66630

    Posted

    A lot of talk today about osteoporosis. Don't forget to get into a program of vit D3 1000 units a day and calcium 1200mg per day. Don't forget to walk abit and give your bones the incentive to keep the calcium. Give your body the building blocks for better bones. Don't sit around doing nothing.

    Charlie 44644

    • EileenH
      EileenH charlie44644

      Posted

      Yes - the recommended amounts in the UK are 800 IU vit D and 1200mg calcium - come as Adcal or Calceos for example, available on prescription and you take 2 tablets a day, at different times for best absorption (bodies don't like to deal with too much calcium at a time).

      I take extra vit D during the winter - the 800 IU may be more than the RDA but the UK is a long way north so you aren't getting the bulk via skin production except when you are in the sun at midday without sunscreen between May and September. Even here in Italy about 80% of the local population is thought to be deficient!

    • EileenH
      EileenH charlie44644

      Posted

      In order for sunlight to trigger the production of vit D in the skin the sun's rays must strike the skin at above a particular angle. The latitude where this angle is achieved all year at midday is round about Turin, in northern Italy. Further north than that, for some of the year, during winter, the sun is too low in the sky to achieve that angle which means even if you are out in the sun it cannot trigger the production of vit D in the skin. In the UK, which is far further north than Turin, no vit D can be made in skin between about October and May. I live just slightly further north than Turin - and even so, according to a study done here a few years ago most people are vit D deficient. If we are vit D deficient in an area where we are out in the sun a lot all year round - albeit not necessarily at 11am-3pm in summer since it is simply too hot, there isn't a lot of chance in the UK where it has been drilled into people to use factor heaven-knows-what, shirts and hats!
    • charlie44644
      charlie44644 EileenH

      Posted

      I am in Connecticut and I think our latitude crosses the southern part of Italy. I never think of us having that type of weather, especially this time of year. I take D3 year round as I have been covering up for the past 35 years after spending my youth basking in the sun. With appropriate sun I think you only need 20-30 minutes of modest skin exposure to produce the needed D3. Just had my D3 checked and it was mid range normal.

      Thanks for the info.

      Charlie 44644

       

    • EileenH
      EileenH charlie44644

      Posted

      Yes, Connecticut is about 42N and Turin 45N, and no - I never think of New England and Italy being similar latitudes either! Though our temperatures are similar - except when you get your very cold spells. One fairly definitive study about vit D deficiency was carried out in Boston Mass as somewhere where really there shouldn't be a problem. A large proportion of young people were identified as deficient.

      Yes, you are also right about how much sun you need, really not a lot but you need an area similar in size to arms, shoulders and face exposed to the sun without anything in the way! And that includes sunscreen - even Factor 8 reduces the amount of vit D made by over 90%. Then, at 70 your skin makes barely a quarter as much vit D as at age 20, plus you tend to wear more clothes than 20 year olds!

  • teenyjeeny
    teenyjeeny vanessa66630

    Posted

    Yes I am so tired all the time cannot get up before 10.30 am then back for sleep 1.pm for couple hours then bed at 9pm then up at 3am then bck to sleep 5am seems to be my way of coping now adays. I have put on 3stone in weight but like you not hungry hardly eat
  • teenyjeeny
    teenyjeeny vanessa66630

    Posted

    not heard of Lodotra as I am on Prednisoline
    • EileenH
      EileenH teenyjeeny

      Posted

      Lodotra is just one brand of prednisone which you take at night and it releases at 2am while you are asleep. It's just like the difference between aspirin and Anadin aspirin, one is the drug substance name and the other is the brand name. Same stuff, different price usually.
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