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Pmr and cushiongoid

Posted , 12 users are following.

Crystalcave
Crystalcave

hi all, over the last few months I had a really bad flare so had to increase my pred to 21 mg. The flare eventually went away and I am gradually reducing again, currently on 14 mg.  I decided to split my dose and found it worked better for me.  Unfortunately I have put weight on ( my diet hasn't changed, I'm very careful) and my face feels puffy a lot of the time.  I have read a little about being cushiongoid and wondered if a anyone else has suffered from this aweful side effect of being on steroids.

0 likes, 22 replies

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  • claudia75644
    claudia75644 Crystalcave

    Posted

    Crystal, i have polymyalgia, and only take 2mg to control it....my doctor put me on the steroid, MEDROL.....see if you can take that and you may can tale the lesser mgs......

    *take

     

    • EileenH
      EileenH claudia75644

      Posted

      That isn't necessarily an answer either - everyone can react differently to each form of corticosteroid and while I had no problems with prednisolone, when I was switched to Medrol I had serious problems - it didn't work as well for me so I needed a higher dose and I put on a massive amount of weight and became truly Cushingoid. The number of mgs is immaterial - even if the number is smaller, the effect is the same whether it is the desired on or the undesired one.
  • Elijo
    Elijo Crystalcave

    Posted

    Yes, my face has filled out, so have the wrinkles, and I do not look so bad.  I have so many other annoiying side effects that this does not bother me: thin skin with frequent bruises, cuts taking long time to heal, blurry vision, some weight gain although I watch my diet carefully, plus many others, but I CAN fully function, have no more real pain, and that is the trade off.  I'm on 30 mg. of pred until March 30. Tomorrow I go for a deep tissue massage of my back which is a little achy.  My advice is don't worry about the full face, just hope you feel functional!
    • ptolemy
      ptolemy Elijo

      Posted

      Elijo, do you have trouble with deep tissue massage? I find they effect my PMR, so now avoid them.
    • Elijo
      Elijo ptolemy

      Posted

      No, I love deep tissue massage, the only kind that really satisfies me.  I had a Swedish massage a couple weeks ago, and it didn't really do anything for me.  My husband sayis I'm a masochist, but I need what I need!
    • reggie92967
      reggie92967 Elijo

      Posted

      Hi, I agree with everything you say here. I just went up to 40mg. the other day because 15, 17.5, 21mgs., not working well. My doc. this week said let's try to knock this fire back down to a smoldering & titrate down slowly once we're back to a smolder. Now on 40mg he is having me get SED rate & check in with him weekly. I feel he is really montoring & working hard to get me feeling, (wonderful), like I did at the start, (July, 1, 2015), of & 1rst few months on the 15, 17.5mg. of prednisone. He explains the PMR & symptoms so well & shows so much concern & desire to have me feeling better again. I'm lucky to have such great healthcare professionals.
    • EileenH
      EileenH ptolemy

      Posted

      Like Elijo I love it too - I sometimes feel a bit bruised in places next day but overall it is a positive feeling. I suspect it depends on how much they work on trigger points of a myofascial pain type - they are concentrations of the same cytokines that are systemic in PMR. Once they are released it can feel like a flare.

      Must ring up for a massage - Bowen tomorrow, massage next week I think biggrin

    • Elijo
      Elijo EileenH

      Posted

      I had my deep tissue massage yesterday for an hour, concentrating mainly on my back, neck area.  The deeper the better.  Felt so good.  I'm not really sure if the PMR makes my back muscles more achy or not.  The therapist di ask why my muscles are so tight?  I had always been more of a tenses person in the past, did not know even how to relax, and although I've changed, I'm sure I'm still on the tense side.  I have two more gift massages left.    By the way, my bruises and cuts come mainly on my forearms and lower legs; they can be a mess.  I have one large padded bandade over 3 cuts.  When I pulled the tape off of one of them a few days ago, the skin came off with it, and blood.  What a mess!
    • claudia75644
      claudia75644 Elijo

      Posted

      i can relate to all the blood....so sorry....I am on xarelto and can hardly move past anything without brushing against it, and therefore   I have purple bruises with the blood behind them, that is VERY UNSIGHTLY, but the places are very tender to the touch....good luck with yours...

       

    • EileenH
      EileenH claudia75644

      Posted

      If you are bruising that much then I think you should ask your doctor about it. There have been cases where the bleeding time has risen very high even though the unique claim for xarelto is it doen't need monitoring. Pred makes you more prone to bleeding anyway because the capillaries become quite fragile - if you are on something to increase the bleeding time you can develop nasty bruising as you seem to be.

      I was offered it - I said I'd wait until they had an antidote! Don't think I fancy having all those bruises in the summer - to hot here to wear sleeves.

    • EileenH
      EileenH claudia75644

      Posted

      If you are bruising that much then I think you should ask your doctor about it. There have been cases where the bleeding time has risen very high even though the unique claim for xarelto is it doen't need monitoring. Pred makes you more prone to bleeding anyway because the capillaries become quite fragile - if you are on something to increase the bleeding time you can develop nasty bruising as you seem to be.

      I was offered it - I said I'd wait until they had an antidote! Don't think I fancy having all those bruises in the summer - too hot here to wear sleeves and long trousers!

  • shawn99
    shawn99 Crystalcave

    Posted

    Hi there,

    Everyone needs a different amount of Prednisone to manage their PMR. 

    People that say to try smaller amounts based on their own experiences can be mistaken as it applies to you. Only you know how much Pred is needed based on the pain you are in. I have been on 10mgs for almost three years and struggle to reduce, even at a very slow pace.

    One thing that helped me with the fluid retention (fat face) and muscle relaxation is using an infrared sauna daily. I now go in twice a day for shorter time periods and it really helps. 

    Diet of course is important and reducing your carbohydrates will likely help with the weight loss.

    Good luck,

    Shawn

  • gillian_25383
    gillian_25383 Crystalcave

    Posted

    Always get the moon face but last time had to come off because of ginormous weight gain,lots of blood bruises and steroid hump.My dear brother said I was turning into a Brahma bull.Since off all the cushingoid symptoms have gone and the weight is slowly coming off (now on methotrexate injections)
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