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Notes on failed taper from 4.0mg to 3.5mg

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nick67069
nick67069

I want to share my notes on how I manage this failed reduction in dose. 

I have PMR almost 2 years now. In mid August I started my taper from 4.0 mg to 3.5mg using DSNS method.  By mid September I have completed the taper, but things were not good. I decided to go back to my previous dose - 4.0 mg. Here is why:

- After a week or so into transition, I  started to feel tired and had less energy then usual.

- In the second week of taper my right knee started hurting and withing few days I had to have a knee brace during my walks.

- About the same time I noticed that my recovery time after biking was much longer .

-Towards the last week of transition, my leg muscles and shoulders were hurting like I had done some heavy lifting, and I can feel muscles "burning", usually indicates overworked muscle.

-Last 2 weeks my neck hurt so bad I could not turn my head on one side ( right).

All of these symptoms were telling me that I may be too low (or too early) with my attempt to reduce pred. So I decided to increase the dose...

I took 2 days 5mg and then went back to 4mg. After just 2 days I did not need knee brace any more.  Leg muscle and shoulder pain went away within a week or so... My neck is just becoming normal and it has been almost 2 weeks since I increased the dose.

I just had visit with rheumatologists today and he confirmed that my inflammation was up at 0.5 ( here normal CRP range scale is between 0- 0.3). He agreed with me about the dose.  When I mentioned that I will try to reduce again before next checkup (in 90 days), he suggested that I stay at 4mg.  Am I lucky or not to have understanding rheumatologist who does  not push for senseless reduction in pred?!

 

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  • RD_Swede
    RD_Swede nick67069

    Posted

    You can cut ordinary pills but not those who are coated.

    I stayed on 5 mg due to fatigue and then it was easy to continue to 0. I also avoided flareups. 5 mg is a very low dose so I did not mind waiting. I was at 0 after 3 ½ years and have been free from pmr and gca for almost 9 years

    • Silver49
      Silver49 RD_Swede

      Posted

      This is so encouraging. Thank you. The only flare I had to date was reducing from 12.5 to 10. I went back up to 12.5 and then 11 which worked for me. I'm hoping I'm getting there but not rushing.

    • RD_Swede
      RD_Swede

      Posted

      It should have been I stayed on 5 mg one year due to fatigue as I felt I could take it easy on that low dose.
  • may66088
    may66088 nick67069

    Posted

    I find that alternating the dose....4mg one day 3.5 the next for two weeks and then try 3,5 for 4 weeks before going down any more.  You can always extend these times if necessary.
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