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Reaching lowest dose of Prednisone

Posted , 47 users are following.

gloster
gloster

I was diagnosed last November with PMR and started on 20Mg of Prednisone. It relieved the pain

immediately, and I have slowly been reducing the dose. I was on 8.5 mg on 3/30/14 and started using Eileen H's slow reduction method. I was in the midst of the reduction schedule and took 7.5 on 4/23. The next morning I was in agony. I took an 8.5 dose that day and wasn't completely better when I went to bed. However, this morning I woke with only mild stiffness that disappeared with an 8.5 dose. My question is how common is it to have a flare-up or does it indicate that 7.5 is too low for me. I really was hoping to get off of the prednisone. Any comments would be appreciated.

7 likes, 138 replies

138 Replies

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  • Jaydy
    Jaydy gloster

    Posted

    My doctor reduced my dosage by 2 1/2 mg fortnightly but I quickly deteriorated so she concluded that this was too drastic a reducttion. I am now on 12 1/2  for 28 days to be followed (if all is well) by 10mg for 28 days ,then a blood test and a check-up with the doctor. Some days I have more pain than others and am often exhausted. I have concluded that it is unwise to be too active when feeling exhausted because it just makes matters worse.I think that everyone is different - what works for one does not work for another. I also think from experience that other medication can have an affect when taken alongside prednesilone. I have on doctor's suggestion discontinued my statins temporarily which has relieved some pain. Also the necessary calcium supplements have caused chest pains so have resorted to drinking quantities of milk. This is personal to me and I only mention it as an illustration of the fact that we are individuals and are affected in different ways.In my opinion Speed of dosage reduction can only be decided according to the individual's reactions in consultation with the medic. Hope this helps a bit.
  • sophiesu20099
    sophiesu20099 gloster

    Posted

    As I've gone from 45 down to 7.5 alternately to .5. I can see when I tried so hard to wean myself faster, the pain, lung condition, and insomnia was much worse.Also try to take early in the day, with lots of water, seems side effects not so strong....for now advised to remain on lower dose. I'm not looking for trouble, can't function when I can't breathe a- be gentle with yourself, treat yourself as your best best friend....don't jump off too fast...give it time.
  • MaggiGrace
    MaggiGrace gloster

    Posted

    I am 59yo female. I was diagnosed with PMR about two weeks ago.  It started in January in my left shoulder and rapidly progressed to both shoulders and my hips.  Kept thinking I had a "bug".  Extreme fatigue set in.  Saw a rheumatologist who suspected PMR and ran tests.  MY sed rate was only about 37 so not extremely high. Other RA and other tests were all in normal range.  

    Weds night March 5, I was in excruciating pain in both shoulders and hips.  Got in to see rheumatologist first thing Thursday and she injected my left shoulder and my now suddenly swollen right knee with cortisone.   The pain and stiffness relief was dramatic (99% relief) within 24 hours.  She explained that the result was certainly even more suspect of PMR.  She thought I would have relief from the injections for approx 5-6 weeks.  

    It's been two weeks, and my pain and stiffness symptoms are returning, though only about 50% as severe so far.  I am (gently) walking 3 miles each morning and gently stretching, also getting massage a couple of times a week (which helps me feel better but is sooo expensive).  

    The doc gave me a prescription for oral prednisone and wanted me to start it right away.  I have resisted due to being given oral pred in my late 20's for severe allergies, and it had terrible awful side effects (severe depression, agitated, couldn't stop crying, etc).

     

    I'm terrified of taking the 20mg dosage she has initially prescribed.  These are 5mg tabs and I want to start taking just a 5mg tab each morning to see if it gives me any relief at all.  

    Has anyone out here experienced PMR relief from such a low dose ?

    Thanks for listening.  I'm a bit of a train wreck right now as I am a normally healthy and happy individual and I do not want to live with such awful pain.  My heart goes out to each of you.  

     

    • paula63201
      paula63201 MaggiGrace

      Posted

      Hi Maggie,

      Sorry to hear of your diagnosis, but welcome to the 'club.'

      I too was a very strong and healthy person before PMR. I rowed for hours and had a ton of energy and strength. Had first symptoms after having a ruptured Baker's Cyst behind my knee, flu like symptoms, months of misdiagnosis, etc. by bad theumy and inept other doctors. Finally got a good rheumatlogist.

      I think the standard starting dose for PMR is at least 15 mgs. My symptoms disappeared on 20 mg of Prednisone (I was diagnosed Dec 6 2013) which was my initial dose. I stayed on it for 3 weeks and then reduced to 15 mg and them 3 weeks later to 12.5. Since then i have been reducing gradually. and am now down to 6.5 mgs with no pain. Had a couple of increases of Prednisone along the way, due to other infections, but was able to reduce immediately after). Getting ready to go to 6 mgs.

      I felt highly charged on 20 mg, but my body adjust. I took them 10 mg in the am and 10 mg pm. I also took 300 mg Gabapentin at night, which helped me to sleep. At 15 mg, I took them all in the morning and the Gabapentin at night ass before.

      Hope this helps.

      Paula

       

    • MaggiGrace
      MaggiGrace paula63201

      Posted

      Thanks Paula...

      I finally "gave in" today because I couldn't handle the pain/stiffness that was returning.  I was miserable.  

      I took a 5mg pred tab about 1600 and it is now 2030 and I am amazed at the relief.  I still have the long-term cortisone shots in my system, so I think the 5mg is a boost for what is already there.  I don't think my doc would be happy with me not following her direction, but I know myself well, and I don't ever want to feel so despondent like I did in my 20's from the Pred.

      Thanks for your kind response.  This is not a malady I would wish on anyone.  

    • EileenH
      EileenH MaggiGrace

      Posted

      You need to get the existing inflammation under control first so you may not benefit from 5mg which means you have no benefit to outweigh any downsides. I am now on under 5mg - but only after starting at a higher dose and reducing very slowly to find the right dose.

      I suspect if you had severe allergies you were given a much higher dose and the higher dose the worse the side effects. That is part of the reason for starting with 15-20mg for PMR, to reduce the risk of side effects. 

      I doubt 5mg will do much, 10mg might - but as you say at present you still have the remnants of the injections so it is possible the 5mg will work at present. It may be it continues to work in which case hallelujah! But don't be afraid to go a bit higher if the symptoms come back. If you don't want to fess up to your doctor you can buy a pill cutter and then you could try 7.5mg before 10mg. I do know of patients who have worked upwards and 10mg was enough.

      And remember - you are much older now, you may react very differently to the pred now your other hormones are in a very different place from in your 20s. Your body also gets used to it after a few weeks - a bit different from a shorter course of high dose pred.

    • MaggiGrace
      MaggiGrace EileenH

      Posted

      Thank you Eileen.  You make some very good points.  

      It is 0700 here and I just took the one 5mg tab.  I agree with you that it is working well likely because of the long term injection residual still in my system.  I have decided to try the 5mg each morning for the next week - 10 days, chart my relief from it, and then make an appt with my doc to discuss the outcome.  At this point, I tam thinking also that since I was in the fairly early stages of this monstrous malady when diagnosed, perhaps that is making a difference as to why I am responding to the low dosage as well.  

      I have an appt scheduled with a accupincturist on Tuesday.  I have never tried this type of therapy, but am willing to explore other options for treating the pain and discomfort this brings. 

      Will keep the board posted so as to encourage and inform others.  It is always helpful to know we are not alone when dealing with something like this.  

    • dan38655
      dan38655 MaggiGrace

      Posted

      If you can afford the accupuncture, it likely will do no harm, but I would listen to EileenH about getting into a proper therapeutic range of 10+mg of the pred.

      10mg probably won't cut it, but if you get a good reduction of symptoms and can sustain and taper off slowly(!), you might be done with it in as little as a year or so (probably longer though).

    • EileenH
      EileenH dan38655

      Posted

      Dan - I don't know if you had noticed but it is over 3 months since MaggiGrace posted this discussion. Many of the threads are quite old - but it does tell you on a post how long it is since it was put up.
  • iellen32
    iellen32 gloster

    Posted

    Hello, gloster, my message was gone before finishing, sorry!

    As I said you are the first person I am contacting immediately reading the discussion on Prednisone and registering.

    It was helpful for sure!

    Thank you so much.

  • iellen32
    iellen32 gloster

    Posted

    I see based on my experience having Temporal Arteritis ( GCA) that when the tapering of the Pred goes too fast our system lets we know immediately

    I notice all patients have an episode to tell on this matter.

    After three years now I am following my own advice to avoid flare ups.

    • EileenH
      EileenH iellen32

      Posted

      Something we have tried to preach on the forums for the last 6 years - rush, rush gets you nowhere.

      It has been acknowledged by top experts for years that the main reasons for a flare are reducing too far or too fast. Slowly and with small steps.

      The tortoise beat the hare  it's the same here.

    • jacqui35798
      jacqui35798 iellen32

      Posted

      What were your symptoms to Temporal Arteritis.  My vision is getting so bad (no cataracts, etc.) I keep thinking my dose of 3 mg is too low (still a lot of pain but I want off the steroids), and then I fear GCA.

      So, can one get GCA on a low dose of pred with PMR?

    • Anhaga
      Anhaga jacqui35798

      Posted

      Iellen may reply, but I don't think she's been on the site for some months.  If you make a new post asking your question there will be a number of people who will see it and be able to reply.

      It is possible to develop GCA when on low dose pred although not commonly as far as I know.  I think pred side effects are the lesser of two evils if sight loss is likely.

  • iellen32
    iellen32 gloster

    Posted

    Here again to say your experience is similar to mine because one year ago I was able to take low doses of Pred - 3-/2 mg and suddenly the inflammation came back.

    Besides the result of the tests we must follow our symptoms but the docs do not think that way .

    In general they tell us to go down 1 mg/ month!!!

    Stay well!

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