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Pred reduction without medical advice.

Posted , 4 users are following.

pat38625
pat38625

Hi everyone, I am looking for some advice or reassurance as I have not seen a Rheumy yet.  I was diagnosed with PMR 12th November 2014 and started on 20mg pred.  Seen consultant in Endocrinology on 8th January (who has referred me to Rheumy) she said to reduce pred down to 15mg.  I seen my gp the following day and told her it was too big of a reduction so I went down to 17.5 and I will be reducting this Saturday down to 15mg.  I am hoping to reduce every 6 weeks by 2.5 or less depending on how I feel.  It just feels like a long time without seeing a Rheumy so am more or less going it alone.  Thanks in advance for any replies. 

1 like, 11 replies

11 Replies

  • EileenH
    EileenH pat38625

    Posted

    You can try 2.5mg steps between 15 and 10 and it is great if it works. However, some people find that too much at one go and feel 1mg steps are better. For years it has been recommended that any reduction should be no more than 10% of the current dose - so never more than 1.5mg after 15mg and obviously reducing to 1mg by 10mg daily dose. So 1mg steps from 15mg makes sense.

    I can't even manage 1mg at a time without spreading it over a few weeks - but it isn't any slower, I still reduce at 1mg over a month.

    • pat38625
      pat38625 EileenH

      Posted

      Thanks Eileen I agree with you.  Because of this site and people like yourself I know that reducing below 10mg is a hit and miss and is individual.  So I am going down to 15mg on Saturday for 6 weeks and then reduce by 1.5 until 10mg and then see how it goes.  Maybe even get appt with Rheumy in the meantime.  He or she will work round me and I will do my own thing at the end of the day.  Oh but I am strong willed especially when it comes to my health.  Thanks again.
    • tina-uk_cwall
      tina-uk_cwall pat38625

      Posted

      Hi pat, you'll do well taking Eileen's advice. Small dose reductions, stay on that dose for a good 4-6 weeks, do not reduce further if on that dose PMR symptoms return. Reducing is scary stuff, but you will be fine I'm sure. All the best Pat. Regards, christina 
    • christine_fay
      christine_fay tina-uk_cwall

      Posted

      You will soon find out if you have reduced too much... all of your symptoms will return. My doc made me reduce far to quickly and have had a real painful yoyo year. I got so fed up with them nagging me to reduce that I gave it up all together after 1 year. I felt fine...for nearly six weeks... just some funny arm pains and hip/waist stiffness.Then one day back to square one... couldnt get out of the armchair for 3 days. Doc very retiscent to put me back on Preds but screamed blue murder at him and threatened to sue...I am now on 15 and will reduce only by 1mg every 4 weeks. You live and learn with this and NO ONE is the same. The side effects are many and it does react with other medicine. I have had the wierdest 18 months ever in my life with his. I have been able to work and travel by taking 'booster' doses in the way you do if you have an operation or a bout of very bad flue. Luckily I dont work full time but very intensively every fortnight or so.
    • tina-uk_cwall
      tina-uk_cwall christine_fay

      Posted

      Christine, I feel terrible for anyone who hasn't the support of their Dr. Who actually diagnosed you with PMR? Have you ever seen a rheumatologist? How long has it been since you were diagnosed, 18 months or more? Has any blood tests been taken and if so did they reveal inflamation? Have you printed off the Bristol PMR plan and taken it into your Dr, or better still has your surgery another dr that you can see? Christina 
    • christine_fay
      christine_fay tina-uk_cwall

      Posted

      I have seen all the doctors. I have seen Rheumatologists in the early days before diagnosis when I was so crippled up they had to diagnose something! Also my headaches and eye problems and temporal veins swelling clearly indicated GCA within 2 days of 30mg prednisolone I was perfectly normal again. I have not been refered to anyone at all since the diagnosis 18months ago. Our local surgey treats over 70s as on the way out anyway so not worth the effort... They don't seem to care that I am primary fulltime carer for a husband with advanced PP Multiple Sclerosis. My blood test do not show too much inflamation but then it wouldn't unless I come of the preds ?
    • tina-uk_cwall
      tina-uk_cwall christine_fay

      Posted

      This is just terrible. Have you tried signing onto another surgery or requesting a referral to see a rheumatologist, hopefully it won't be the one you've seen before. Also, if there was any sign of GCA then they should have referred you to a specialist. No I'm sorry I would be changing suurgerys, which is exactly what I did when I believed my original surgery was not giving me the medical service I believed i was entitled too. Since then I've had brilliant service at my new surgery. Christina 
    • pat38625
      pat38625 tina-uk_cwall

      Posted

      Thanks Christina, am only getting back to you now.  I will be reducing every 6 weeks or so depending on how I get on.  I will have to double the dose for a few days when the implantologist starts my dental work.  Other than that I will be following the slow reduction plan and Eileen's advice.
    • pat38625
      pat38625 christine_fay

      Posted

      Thanks Christine Fay, I am sorry that you have had a time of it with your dr and reducing pred.  I have a good relationship with my gp but as stated above no appointmet yet with Rheumy.  Until I see one I will be doing my own thing regarding pred.  Thanks again
  • CeeJay30
    CeeJay30 pat38625

    Posted

    Pat

    There is some great advice on these posts.  There are many, many posts that will suggest a vey slow reduction.   I went from 20 mg to about 7mg in 18 months.    But, many have said that is very fast.  I believe them and have had to raise it  to 9 mg recently.     So, the 20 to 15 sounds way, way, way to much.   Listen to EileenH and read her posts and many others.   Don't reduce too fast.  (Weeks and months).    It might be that once you get below 10 you will take a much more extended time (months, or more) to get down the next 10 percent.  Your reduction plan sounds extreme.    In the meantime, start to feel much less pain on your predinsone.   Start to feel better. I have and am feeling quite good.... You will too!!,

    • pat38625
      pat38625 CeeJay30

      Posted

      Thanks CeeJay, I will be following Eileen's slow reduction plan when I get down to 10mg.  I am reducing from 17.5 to 15mg on Saturday and will stay on that does for either 4 or 6 weeks, I haven't made a decision yet but will see how I go.  Thanks again.
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