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

Hydrocortizone not working on PMR so great after all

Posted , 10 users are following.

DebbieHurts
DebbieHurts

I'm the gal who went to the endocrinologist to see how to reduce my prednisone for the rhumatologist who thinks I don't have PMR, and was put on hydrocortizone instead of pred.  Almost a month later I had a SED rate and other stuff taken and my inflammation has gone up from the high 52 to 63.  Painwise I have been suffering a lot, though just on the cusp of being able to take it.  Talked to the rheum. and she said she still wanted to do MRI of my brain, neck, shoulder, before going back to prednisone.  What is your guys' take on this?

0 likes, 20 replies

20 Replies

Next
  • DebbieHurts
    DebbieHurts

    Posted

    I should add that I've had PMR for about 6 years, too long, so my dr says, so she fears it is something else, so I've been taking lots of tests that turn out OK.  I think it is PMR, either come back or just still here.  I had gotten down to 10 pred. but then flared and went up to 20, which was seemingly too hard for me to reduce, which gave the dr the idea my illness is something else.  Now I take no pred at all!  Just the hydrocortizone, and have gone up like that in inflammation.

  • marian56227
    marian56227 DebbieHurts

    Posted

    I have been on preds for nearly 3 years & now my wonderful Dr says all the pain I've been in isn't from PMR as the preds haven't helped it. I'm so angry. Have had so many evil side effects incl both eyes done for cataracts, which the surgeon says was caused by preds. Think now I've had fibromyalgia all along which my Osteopath said 3 yrs ago & arthritis.  But the Dr knew best - I don't think. Down to 4mg now - can't wait to get off the damn things totally.

    • EileenH
      EileenH marian56227

      Posted

      What was your starting dose and did you get any symptom relief then?
    • marian56227
      marian56227 EileenH

      Posted

      I started on 15mg, had some relief for a while, but never without pain. Over the past 3 yrs it's been a constant yo-yo, slowly reducing, then back up. But now down to 4mg & reducing 1mg per month. 

    • EileenH
      EileenH marian56227

      Posted

      If you got relief - it wasn't fibromyalgia! But you probably didn't start at the right dose - 20mg might have achieved more. And it didn't cure anything - PMR is a long term condition, anything from 2 to 6 or more years. You have to remain at the dose that still manages the symptoms. If it "isn't working" it could well be because you are being forced to reduce too much and too far.

    • DebbieHurts
      DebbieHurts EileenH

      Posted

      My starting dose was 25, I think, and it was like night and day.  I had a few weeks of pure normalness, as if I were in my 20s (I'm 64).  Unfortunately it settled to being just OK.  Since then I've gone down to 10, up to 15 then 20, and at 20 I was OK again, but very hard to reduce, so hard that the dr panicked, I think.  I gave her that article to read; hope she does and doesn't poo poo it.  I tried to find another rheum. by asking my general dr, but she said this dr was very knowledgable, to keep her.

    • EileenH
      EileenH DebbieHurts

      Posted

      Except there's knowledgable and knowledgable - PMR tends to draw the short straw with a lot of doctors!

  • Michdonn
    Michdonn DebbieHurts

    Posted

    Debbie Hurts, we have correspondenced before. I believe you never should reduce your dosage if you have any PMR pain. You should increase your dosage till you have no PMR pain. Stay on that dosage till you feel better. Listen to your body, I know the Prednisone side effects on high doses is not fun, but better than PMR pain. My Rheumy and I had battles, I always came equipped with article off the website. The Rheumy was not always pleased, but I had the information, with the help of the forum. I do not believe you have given yourself a chance. Get PMR pain free, stay on that dosage for sometime, then reduce slowly using DSNS method. Always listening to your body. Good luck on the rest of your PMR journey, try to think positive and smile. ☺️
  • DebbieHurts
    DebbieHurts

    Posted

    Eileen, Michdom and all, thanks for the encouragement that helps me so much.  I'm going to be more forceful about the Prednisone, even though she threatened to drop me if I kept at it.  I think she did that just for effect, but still what a mean thing to say from a really nice person.  I laughed at the time, thinking she was kidding. I see her again in a month.

     

    • Kdemers
      Kdemers DebbieHurts

      Posted

      Look for a new doctor.  Luckily I have 2--one for summer in NW and one for SW.  They are so different and I feel lucky not to have to fight the dr. all the time.
    • Michdonn
      Michdonn DebbieHurts

      Posted

      Debbie Hurts, when my Rheumy thread to drop, I went to my PC explained the situation to her. She looked at the articles I had and told me that if the Rheumy dropped me she would provide the Prednisone. Since then the Rheumy has slowly come around. Stick to your guns it's your body. Good luck, think positive! ??

    • Michdonn
      Michdonn Kdemers

      Posted

      You are lucky Kdemers, where I live I do not have that option. My PC is a open minded young lady who will keep me covered. Thank God! ☺️
  • Flutterbie57
    Flutterbie57 DebbieHurts

    Posted

    I don't have Dr options much either, but I did see a Student Dr  (near graduation ) this week so it was interesting to hear his almost fresh out of University take on PMR patients. He placed his hands on my shoulders, closed to my neck and gently massaged it (the upper shoulder, back, neck muscles). He said that if my PMR was not under control, then I would have felt immense pain. I didn't.  Could it be so simple ? Get someone to try it on you ?

    R u the Debbie with Fibro as well ?

    ?I am so forgetful about other people on here, so I think I will put a new post on here to get people to fill in the 'About you' section on their profile.   Ihave  Pred head, as we call it, as an excuse for my forgetfulness. I forget who is who, sometimes and look there to remind myself who has what 

    • EileenH
      EileenH Flutterbie57

      Posted

      Sorry, I think he is wrong! Your PMR as such can be under control - but myofascial pain syndrome can cause horrendous shoulder and back pain. I can be bouncing up and down stairs but when the MPS is out to play I will scream blue murder if the doctor prods the wrong bit! Post whiplash when a car drove out in front of me the GP touched ny shoulders and I nearly hit the ceiling - I hadn't been aware of it before.

    • Flutterbie57
      Flutterbie57 EileenH

      Posted

      I thought it would be too simple. As I have PMR and Fibro and I am getting more pain now, it would have been a wonderful way to figure out which problem was flaring up........if only.

      I am fairly certain that it is not the PMR flaring up causing me extra grief as I took advice from here and extra pred did not help.

      I am finally off to see a Rheumy tho

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.