1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

More appetite after going back to a higher dose of Pred

Posted , 9 users are following.

iellen32
iellen32

Because a flare up when taking Pred 9MG started increasing the dose of Pred until no more pain to chew - even salad, neck pain and pain when yaning....Little by little I am now taking 21 MG and feel comfortable back again.

i will be very careful on the tapering of the Pred. I wil wait some weeks to start going down on the Pred.

Learned the lesson - I can't go down I MG / week as my rheumy recommended.

Every flare up is an unfortunate delay on the decreasing of the steroid - It does not pay.

Now I have more appetite than at the onset of my GCA when I was taking Pred 60mg.

i did not gain weight - so far, so good .

What has been your experience on  this matter?

 

0 likes, 17 replies

17 Replies

Next
  • LayneTX
    LayneTX iellen32

    Posted

    Hi Iellen,

    goodness, no responses yet? I haven't received any emails from this forum in a few days. Not sure who our moderator is now. Surely our forum is not this quiet. I look forward to reading...

    But I am curious do you have certain cravings or just hungry? Thirsty maybe? Sometimes thirst makes us want to eat. Do you feel extra anxious? 

    • iellen32
      iellen32 LayneTX

      Posted

      Yes, I am wondering what's happening! The Forums are so quiet!

      Hope the Moderator is doing well,

      I feel hunger not craving , probably because I eat too light, I cut the sodium and sweets.

      My breakfast is a bowl is salad with wedged of navel orange and slightly toasted almonds.

      I eat salmon - frozen now because we are out of the season. Almost never red meat. Broiled chicken, yes.

      Green tea +grated fresh ginger.

      Hopefully I do not have anxiety.

      Because a flare up I had to increase the amount of Pred little by little until it was ok - now 21 MG. It disturbs my sleeping time as well.

      it was 9MG last month.

      With patience I will get back to the point I was before....

      Thank you so much for your reply.

      🌺

    • LayneTX
      LayneTX iellen32

      Posted

      It's so hard to get healthy fats in our diet. I'm lucky we have great avacados. Seems almonds often don't satisfy me, though I love them and eat a lot of them! And walnuts.

      Do you do dairy? I'm not supposed to, but lately I've added some back such as Greek yogurt, plain, and some butter. Not the non fat stuff, ugh. 

      I admit, when I'm feeling really hungry I go for a steak! I do love red meat. Oh well... wink 

      good luck sweet gal, I hope the hunger subsides. Sorry you had to go up on your Pred. Darn it. 

       

    • iellen32
      iellen32 LayneTX

      Posted

      Thank you sooooo much for hour reply.

      I love Haass avocados, those small and dark ones- delish!!!!

      Sometimes I go for a steak too , knowing read meat - what I love is not the ideal good for inflammation.

      OMG!

      I like sweet potatoes - 6 minutes in the Mucrowave , then smashed with a turn of Olive Oil, s little butter and then s protein - a broiled piece of chicken , salmon, or just black beans.

      The important now is to carefully adjust the Pred, never jump too fast to a lower dose, etc, etc

      We will chat on and on as we keep being active writing replies to the Forums which are so helpful .

      Cheers,

      🍽 🌺

  • Lee-Colorado
    Lee-Colorado iellen32

    Posted

    When you taper, how much do you reduce your pred at each step? The recomendation is only 10% at any step. When I went from 20mg to 10mg I did it in 0.5mg steps. Each week I dropped 0.5mg. It was relative pain free and at the 15mg and 10mg levels a CRP test was performed. I dropped to 0mg Sunday and I will have a CRP done next week. It has taken a long time and at this last step I am starting to feel tendon pain which I currently attribute to old age. The CRP test will tell the tail.
  • stella-dk
    stella-dk iellen32

    Posted

    I´m so glad you told us of your GCA flare, and that you landed on 21 mg. I´m also having a GCA flare at the moment and I vent from 12 to 15 and to 17,5 mg and it still didn´t work.  Then I thought of you and your 21 mg.  - I then took 20 mg and it seems to be much better. I just hope in the next days it will prove to be enough.

    My appetite has always been high, but newer made me put on weight. Now on pred is a different matter.  At the moment my appetite vary. Some days I just eat a little and some days much more.

    take care.

    Stella

    • iellen32
      iellen32 stella-dk

      Posted

      Hi Stella- you have such a beautiful name, originally from Latin and it means Star.

      I love to exchange experiences with you as I do with other participants of this Forums.

      The increasing of the appetite did not happen at the very beginning , three years ago when this ordeal,I mean , my GCA and the Pred 60 MG started.

      It does not happen everyday, everytime though and I am not gaining weight. Probably the fact I cook everything without sal and my desserts are berries, Hass avocados, cantaloupes with some Greek yogurt.

      Diurectc food makes my kidneys to work so it may help too.

      I exercise too daily and avoid immobility, I stand up on and on when watching TV.

      All this factors together help me to burn calories.

      Stay well, Stella⭐️

    • iellen32
      iellen32

      Posted

      About the increasing of your Pred we are doing right according to we learn through the Forums when we have a flare up.

      From this point on we go carefully, carefully adjusting as we know.

      Wish you all the best,

      🌺

    • stella-dk
      stella-dk iellen32

      Posted

      Hi iellen

      Thank you for your nice anwer. You are such good girl, I can´t keep up.  Eating so healthy and standing up watching tv. I just keep away from sugar, alcohol, gluten and white flour. I think positive and laugh a lot. But I dont exercise enough. Feel too fatigue at the moment.

      I also wish you the best.

       

  • stella-dk
    stella-dk iellen32

    Posted

    BTW although I´m impressed with all the things you do to keep yourself healthy, I don´t want to beat myself up for not doing the same. I also have PMR and can´t get my muscles to do so much. And I have a heavy digestive problem. I´ve had pancreatitis an gastric ulcer before, and the pred I now have to take does not

     help.

    I can´t digest fructose, so most fruit is out of the question.

    It also seem strange  that you get a flare with all the good things you do. It makes you wonder where flares come from. It is probably like the PMR/GCA  - many things that can trigger it. My guess is that viruses is part of these things. Or maybe you tapered too fast ? what do you think ?

    I wonder if anyone have seen a direct connection between something that happend in your life, and your flare ? Or is it always a total mystery ? I have to admit I analyze and analyze after a flare.

  • Silver49
    Silver49 iellen32

    Posted

    I'm sorry to hear you are having a flare. It is so hard tapering and then having to increase. I don't know what has happened to the forum but I have only just received your post which I note is 4 days old. As Layne said I, also, have had no emails for a few days and they seem to be a few days old when I do receive them. I thought it was my server but I'm receiving other mail so I don't think it can be. I hope you are able to taper without a flare...slowly does it. I am still tapering to 9 but nearly there and to date no problems but I am pacing myself as I had a very busy and tiring week last week. Our grandchildren were staying and unusually they had various health issues which meant late nights and up in the early hours. All now resolved. Best wishes for tapering.
    • EileenH
      EileenH Silver49

      Posted

      Me too - have just found about 4 or 5 threads I hadn't had notifications for. I'd had them for replies to existing threads though.

      However everyone - if you log on anyway and go to the top right corner of any page you will see a bit with your name, points count, messages and so on. In bright red it says "You have new notifications" - click on that and it will bring them up so you can see what has been posted in any thread you are participating in. Clicking on each brings up the post. Or, if you scroll right to the bottom and it says "See all notifications" - and if you click on that it brings them all up on a new page - where you can do the same and there is also an option to mark them all as read if you want to.

      That notification seems to have been working...

  • dan38655
    dan38655 iellen32

    Posted

    Fatigue and appetite loss went together whenever I was pushing my dosage too low.

    This tended to then resolve quickly when I upped my pred dosage a bit.

    While a flare of symptoms becomes like a short-term setback when you have to then increase your dosage, I am not aware of this causing a longer-term setback in terms of one's dosage schedule.  I think that the ups and downs, so to speak, tend to average out over the course of PMR.

    The temporary setback(s) can be sustained however if a particular joint "flare" gets into the more "damaging" range of intensity, as occurred for a period of months in my own left thumb joint. And doing pain-inducing work tasks can similarly cause or aggravate a localized flare in joint tissues that sticks around for what seems like too long.

    I think it is useful to test one's "lower limit" of dosing periodically, while being very responsive to the need for any temporary (and sufficient) "bump" in dosage and resting of joints.

    I quickly learned just how quick and how sufficiently large that such adjustments needed to be made.

    Just a mg or two at the right time of day has always been quite noticeable.

    And for those periods when we may find ourselves on the more "comfortable" side of sufficient dosage, this might be the only time that we can try introducing slow-motion exercises that expand our range of motion while giving our metabolism a periodic lift. My overall point being that one should closely monitor in real time how our bodies are responding to adjustments to our dosage and activities, right down to even the time of day.

    • Tastyron
      Tastyron dan38655

      Posted

      Your point about slow motion exercise is a good one. Have you tried Tai Chi? The basis of this exercise is that all the movements are better for strengthening muscles because they are performed slowly and balanced. 

      My appetite is all over the place, I go from eating pretty well and then "The Hunger" gets its little hooks into me and it becomes a serious willpower battle. I weigh myself once a week on Monday morning after losing lots of weight pre diagnosis. I steadily put on 15lbs since Christmas, last week I put 3 lbs on. Trouble is my muscle mass is so low at the moment that most of those lbs are fat. Got to find Mr Willpower, got a job for him.

    • EileenH
      EileenH Tastyron

      Posted

      Tryy eating low cars - because it is the carbs that trigger the "hot hunger pangs" as the Germans put it! Look at when you have your cravings - they are probably after meals with carbs.

      Carbs trigger production of insulin, insulin drops the BS level to a level that is too low and you crave more carbs. But there is insulin left over and that leads to fat being deposited "for later". Cut the carbs, there is less insulin doing its dirty work.

       

Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.