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Two weeks on 25mg prednisone now on 20mg and still paining

Posted , 9 users are following.

r.d.s26296
r.d.s26296

I been taking prednisone 25mg for 2weeks. My Rheumatologist now reduced me to 20 mg for two weeks. 

My pains are back again and my CProtein blood test has jumped from 2:3 to 4:6. I am pretty worried.  

0 likes, 19 replies

19 Replies

  • BettyE
    BettyE r.d.s26296

    Posted

    The more you read the posts on here the more you will realise that  there is no set reduction path that suits everyone and the fact that your pain has returned looks as though two weeks on 25 was not enough.

    I presume that your GP did the CRP test? What did s/he say about the raised level? It seems rather unusual to ask you to reduce given your experience.

    I started on 30 which gave almost instant relief. I was kept there for 4 weeks then down to 25 for 2 weeks. I was then able to get down to 10mgs. in under a month with no return of pain. But the 10 proved to be a step too far so back to 12.5 but pain still there so increased to 13 for four weeks. After that I reduced 1mg. a month before pain returned at 4mg. Back to 5 for ten weeks then reduced at 0.5 a month and told to reduce by even smaller amounts ( had to use a pill cutter ). At 1.75 pain returned so back to 3 for 2 weeks. After that was able to get to zero reducing 0.25 at a time. It took three years altogether.

    My GP managed me and asked me to keep a diary. This seemed to work for me. I did not see a rheumatologist.

    Don't put up with the pain and, if necessary, ask for another opinion.

    • r.d.s26296
      r.d.s26296 BettyE

      Posted

      Thank you Betty your help is appreciated very much.  I only received the blood test results yesterday and have to return next week to the rheumatologist...

      Two years ago I passed a MOHs surgery op for fibro sarcoma. I'm still having bi annual check ups with my oncologist. Problem is the op was above my right breast next to the collar bone and just before my arm pit. Most of the pains I have are in that area and forearms. 

      I was concerned about the rise in the C proteins as two weeks ago it was much lower. 

    • BettyE
      BettyE r.d.s26296

      Posted

      PMR is bad enough but when the waters are muddied, so to speak, by other possibilities it's even more difficult. You don't actually say that you were given a definite PMR diagnosis. Is that the case?

      When my pain returned at one of the low doses my GP wondered whether it was, in fact, caused by PMR or maybe it was my long standing OA showing itself again, having been kept quiet until then by the pred. So he said take paracetamol and if that eases the pain we'll know it's not PMR. Not only did the P. not help the pain but my liver objected violently so I do have every sympathy with your problem!

       

    • r.d.s26296
      r.d.s26296 BettyE

      Posted

      Yes it was definitely a pmr  diagnosis. 

      But the last blood tests were for RA. I'll get the results next week. 

  • diana21296
    diana21296 r.d.s26296

    Posted

    I had to remain on 30mg for 6 weeks before I could drop to 25mg.  It doesn't work for everyone to drop down too fast which is what the Drs always want us to do.

    • r.d.s26296
      r.d.s26296 diana21296

      Posted

      I still have another ten days before I return to the rheumatologist. So I'll see how I get on until then. 

      I suffer with pains everywhere when I wake in the morning. But after an hour or two it eases up. 

      Thanks so much Dian

      A and Betty for your help. I'll keep you guys informed. 

    • EileenH
      EileenH r.d.s26296

      Posted

      It is normal to have pain in the early morning - the new batch of inflammatory substances is shed in the body at about 4am - the sooner after that you take the pred, the sooner it works and the less inflammation it has to deal with.
    • r.d.s26296
      r.d.s26296 EileenH

      Posted

      All this pmr is completely new to me.  About three weeks ago I woke at 3am to use the bathroom. I couldn't move for excruciating pain in my whole body. I couldn't bend my arms, move my head or hips because the pains were so intense. 

      I live  alone and I felt a wave of panic. Eventually I managed to get up , took a couple of paracetamols and waited for a little relief. 

      A friend took me to the doctor in the morning and voila that's the story how my pmr began. 

      I shall try taking the prednisone earlier and maybe that will balance out the morning hours that the pains return. 

      Thank you all for your support, I really really appreciate it. 👍

  • Anhaga
    Anhaga r.d.s26296

    Posted

    Was your pain controlled before the reduction? If so and it returned the drop might have been too large. Ten percent of 25 is only 2.5.
    • r.d.s26296
      r.d.s26296 Anhaga

      Posted

      No I wasn't stabilized before the reduction. I think you are right, it was much too big a reduction all at once. 

      👍

  • EileenH
    EileenH r.d.s26296

    Posted

    Then your rheumy needs to leave you at 25mg for longer - and try reducing in smaller steps. Most people need at least a month on the starting dose, sometimes longer. Everyone is different.
    • r.d.s26296
      r.d.s26296 EileenH

      Posted

      Yes I give the doctor a phone call and suggest that. 
  • Michdonn
    Michdonn r.d.s26296

    Posted

    Hi rds, sorry you have joined us on our PMR journey. A year ago after a bad flare I had to go 30 mg for 6 weeks to get relief. My Rheumy and I disagree on my taper, my I have listened to my body and tapered use DSNS method, reducing much slower than she would like, but basically PMR pain free. I never reduce if I have PMR pain. I think positive, stay very active and try to keep a smile on my face. ☺️
    • r.d.s26296
      r.d.s26296 Michdonn

      Posted

      Thanks Michdonn

      I'm taking the Preds after food, I thought that that could possibly be the reason for the 3 hour delay until the preds kick in. 

      Is it safe to take on an empty stomach ?

    • Michdonn
      Michdonn r.d.s26296

      Posted

      rds, I do not know, I only take Prednisone after eating, after breakfast and after a shack before bed. That works for me. Good luck. Smiling beautiful morning here. ☺️
    • EileenH
      EileenH r.d.s26296

      Posted

      A glass of milk or a yoghurt is said to be enough. They will take at least 1 to 2 hours to work - and if it is long after 4am the more inflammation there will be to deal with. But you DO need to be as pain-free as possible before you start to reduce from the starting dose. Some people are never fully free fram pain but you need at least 3 weeks at 20-25mg to see what level of pain you can achieve and then you use that as a guide in future. If your ESR and CRP blood tests are raised they should also be back to at least near normal before starting to reduce. 
    • r.d.s26296
      r.d.s26296 EileenH

      Posted

      My CPR blood results are higher than when I first started taking Prednisone....that's what is worrying me.  I have an appointment on the 14/5/2018 with the rheumatologist so I hope by then to get some answers. I think I shall ask her to start again with the 25mg and reduce much slower. 

      Trouble is, well I have found through experience ,that most of these doctors don't like it when we get information from forums or the internet. 

      I lost my husband 5 years ago to bladder cancer which spread to his bowels. ( poor soul had to deal with two stoma 's )

      I joined a bladder cancer forum , and I know without their support and kindnesses I wouldn't have been able to cope. 

      These forums are a blessing and I really thank you all for your support and advice. 

      ??

    • Michdonn
      Michdonn r.d.s26296

      Posted

      rds, I am sorry that you have joined us on the PMR, but glad you found the forum. The experience, the knowledge and wisdom I have learned on this forum has kept me going. I have taken some of the articles and gave them to my Rheumy to change her mind on my tapering. She of some of the people who wrote the articles and now just seems to be going alone with what I want to do. It has been a learning experience for both of us. Try to stay positive and keep smiling. ☺️
    • EileenH
      EileenH r.d.s26296

      Posted

      Really it should be worrying your doctor too I'd have thought. It could suggest that whatever the inflammation source is, it may well not be one that causes PMR/GCA. CRP is a very general indicator - it is by no means specific to PMR/GCA and even in them it isn't raised for a good 20%. But if the PMR/GCA cause is more active - you need more pred.

      Your husband really did end up with a short straw didn't he. It must have been a very difficult time for you both. Cancer is never easy - when it is so complex it can be hell.

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