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Does more Predisone mean more relief?

Posted , 7 users are following.

tina4444
tina4444

I am 46 years old and was diagnosed with PMR about 6 weeks ago. I really thought I was feeling better. My Doctor started me at 10mg of Predisone and I felt a drastic difference right away. He had me try to go down to 7.5 mg, but I could feel a difference in my pain level within 12 hours. I went back up to the 10mg in my very next dose. When I went to see him last week, I was prepared for him to have me try again. However when I showed him my swollen and ache fingers and then told him that I was  having the same trouble with my feet, he bumped me up to 20mg. I expected to to feel even more relief then I had before, but since I have been taking the 20 mg my arms, legs fingers and hands seem to ache more. Is this normal?

0 likes, 12 replies

12 Replies

  • MrsO-UK_Surrey
    MrsO-UK_Surrey tina4444

    Posted

    Tina, if your diagnosis of PMR is correct, then your Dr needs to read up on the correct treatment.  Google the BSR Guidelines for the Management of PMR, print off a copy and take it to your Dr.  In the UK, the usual starting dose is 15mg of Prednisolone - 20mg in a few case, especially for someone above normal weight.

     We constantly read about patients being diagnosed with PMR, started on too low a dose and reducing too soon or too steeply, not giving the steroids chance to get complete control over the inflammation.  Unfortunately, in such cases, we also find that through yo-yoing the dose they then have difficulties reducing the second time around after the dose has been increased.

    If you are someone who had raised ESR and CRP blood test markers at the outset then, apart from your symptoms, these should be repeated before any reduction, and the reduction postponed if there has been no improvement.

    If you continue to feel no improvement on the 20mg dose, then the diagnosis should be queried and further tests carried - for instance on your thyroid/hormone levels/Vit D levels - a deficiency in the latter can lead to pain in similar areas to those of PMR.  We have also come across people diagnosed initially with PMR but who have eventually had the diagnosis changed to that of Rheumatoid arthritis.

    However, from the symptoms you describe and the initial response to the 10mg starting dose, it does simply sound as though your body is confused due to the yo-yo effect of the treatment and it is taking longer to respond and settle on the new dose.

     

    • tina4444
      tina4444 MrsO-UK_Surrey

      Posted

      Thank you for your response. The doctor that I am seeing is a Neuromuscular Specialist. As my symptoms have progressed over the past year I was referred to him where he ruled out possible MS and other muscular diseases. I do have a rased ESR and CRP and since I responded to the intial doses he felt he was on right track. I am so scarred that he was wrong and once again no one knows what is wrong with me. As you know, my pain is real, but difficult to explain to others who think I look fine.  Is it possible that my current aches and pains can be due to a combination of the change in the Pred and the fact I have gone non-stop for the past few days. Maybe I am just overduing it.
    • escot
      escot tina4444

      Posted

      Dear  Tina,

      I too went to see a Neuro Specialist, and she told me that I had PMR and I started on 20mg last July of Preds. Mine is a long story,but in Feb of this year I went to my local Rhuemi clinic, and was told by the Rheumi that he did not agree with the diagnosis of the Neuro specialist and he thought that I have Fibromyalgia, as people who have PMR he told me, do not get pain.!!!!!!,he said once people are on Steroids, they will be on them for life, but at the same tome he wanted me to reduce them 1mg per month, he added that during the time of reduction that I am going to have excrucuating pain and I will not be a happy bunny. When I asked him as to what he could suggest for that pain , his answer was"I dont do pain! find yourself a pain clinic! I was not only shocked to hear what this Rheumi said, but I can sypathise with you over the pain,and yes I too find it very difficult toexplain to others about the pain.. I to responded to the Preds within a few hours of stating them last July, and for a few months, I was like a new person, lots of energy/Happy Bunny, and now, I am in almost constant pain, worse when I lay down, or first thing in the morning,Worse when I get tired,worse when there is stress around, and there is stress around at the moment, my husband has recently been diagnosed with Prostate cancer, he is having treatment,and doing quite well with,and by the end of the year he should be clear. whilst with me, I feel that that I should not be to concerned as to my problems .but it is hard to do anything when you are in constant pain...and you have a Rhuemi putting doubts in your mind as to what he thinks is wrong and he has told me that he is the"Exoert"

    • MrsO-UK_Surrey
      MrsO-UK_Surrey tina4444

      Posted

      Tina

      " Is it possible that my current aches and pains can be due to a combination of the change in the Pred and the fact I have gone non-stop for the past few days. Maybe I am just overduing it."

      PMR loves stress, whether physical or emotional, and "overdoing it" is stress on the body.  We have to learn to love ourselves if we want to give the steroids every chance to get complete control over the inflammation that causes the pain - they are not curing PMR, unfortunately nothing does at present, they are just damping down the inflammation until PMR decides to go into remission.  Try giving yourself lots of TLC for a few days and see if you then feel an improvement.  I do hope so.

    • MrsO-UK_Surrey
      MrsO-UK_Surrey escot

      Posted

      Escot, good luck with your hubby - mine is doing very well after 7 weeks of daily radiotherapy and two years of hormone therapy, plus a pacemaker more recently.  All the best to you, too.
    • denise76179
      denise76179 tina4444

      Posted

      Yep overdoing it will mostly cause a flare up - light duties only and lots of rest

      Good luck

    • escot
      escot MrsO-UK_Surrey

      Posted

      Dear Mrs O,

      Thank you for  info. Yes he seems to be coping well, 5 weeks into Hormone inplant,Sept 4 weeks(daily)Radiotheraphy followed by another 3 months implant.

      I am still having problems re my reduction of Preds, I have pain all day long,some partsof the day the pains are more intense. I expect you have read all about my visits to Rheumi etc. I am now on6mg of Preds, and the pain killers I am on,CoCodamol, and Paracetamol, the point is I cannot take anything stronger as  I have a Hiatus Hernia and I also Have COPD

      I do find that stress, rushing to get things done, and housework sets the pain off more, the pain is now affecting my wrists and hands and my feet,,the soles of my feet feel like they are burning, and I get stabbing pains in my shoulders and upper arms...as my husband says!!! I am falling to bits...what people see on the outside, they cant understand what is going on in the inside

  • denise76179
    denise76179 tina4444

    Posted

    Hi Tina

    I did not experience pain in fingers or feet only the muscles of ams and thighs with a little in the shoulder joint probably from excessive use in the work I have done..  My Dr started me on 15mg as a standard and I had instant relief.  After 3 weeks my Dr tried to reduce by 2.5 mg however it was too soon and I had to go back up to 15 mg for another 3 weeks.  I have reduced to 12.5mg for 2 weeks then to 10mg for 2 weeks and have food and bad days for pain though bearable.  From this forum I have found from now on I'll have to reduce by no more than 10% at a time which I won't start until I'm sure I'm pain free,  Ask your Dr to refer you to a rheumatologist specialist for a confirmation of diagonisis as yours sounds different to my experience.

  • Dinah54
    Dinah54 tina4444

    Posted

    Hi Tina

    Did your doctor rule out other possibilities before diagnosing PMR? When your symptoms are atypical - and from my limited experience I would say yours are, then you should be referred to a rheumatologist  to investigate other potential diagnoses. And this should really be done before the steroids have had a chance to cloud the issue.

    After nearly two years my doctors are doubting the diagnosis but because I have been on prednisolone for so long - now on 5mg from a 15 mg starting point - they can't rule out some form of inflammatory arthritis because the steroids mask the picture so they can't do the necessary scans.

    The problem is of course that it's the GP who sees you at the acute stage and diagnoses you in all faith. But if you then don't get an appt with the rheumatologist for 3 months it's a bit too late. In hindsight I wish I'd asked for a private diagnostic consultation right at the beginning before I got too steroid dependent. Having said that, though, I don't know how I'd have coped without the 15mg steroids....

    Best of luck. You'll find this forum invaluable

  • blodwyn
    blodwyn tina4444

    Posted

    Hi Tina,How was your diagnosis of PMR made? 10mg seems like a very low initial dose for PMR.I think you should have been tested for ESR, CRP, and Reumatoid Arthritis levels and if there was an indication of possible PMR and definately not Reumatoid  Arthritis, you should have been given Pred of at least 15mgs,then re-tested a week or 2 later to check if your levels and the pain had reduced.

    I would take MrsO's advice.

    By the way, just a thought,my daughter has some of your symptoms and she has Fibromyalgia and suffers from chronic fatigue.She and I were both lucky to have switched on GPs.Unfortunately not all are so fortunate.

    Hope you get an answer soon.

    Hope you get some answers soon.  

  • tina4444
    tina4444

    Posted

    Thanks everyone for your responses. My doctor is a highly regarded neuromuscular specialist and seems to know his stuff. He had done a number of tests including ones to rule out MS, thyroid issues, vitiman difficiencies and ESR and CRP. In addition to additional tests that other doctors done, (including several MRIs) he was able to rule out quite a bit. I believe due to my intial response to the predisone and the elevated blood work (ESR and CRP) he diagnosed me with PMR. Last week he increased my Pred in attempt to get my finger swelling down, which seems to have worked, but my over all stiffness and ache feeling does not seem better. With that said, since I increased the meds last week, I have had 2 days of running around followed my 3 different dinner parties (for 3 nights in a row.). I am thinking my increase in feeling uncomfortable is due to my overly busy schedule and it is just a coincidence that I increased the Pred. Does that sound like a possibility? i am going to take it easy for the next couple of days and see if there is any relief.
  • blodwyn
    blodwyn tina4444

    Posted

    Hi Tina,Yes you probably overdid it.

    I have found that PMR stops you in your tracks and I now never know if I'm going to be able to do everything I planned to do and have to put things off for another day.Of course this is not always possible with social situations.

    I moved house 10 months ago and would normally be settled by now but find I'm now having to employ tradesmen to do things I would normally have tackled myself, but I have to accept this situation now.

    I would say,try to rest whenever you can.

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