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Is the Pred still working?!

Posted , 16 users are following.

constance.de
constance.de

Sometimes I feel the pred is not doing anything anymore (after 4 years).

For months my ESR hovered between 18 and 20, now it hovers between 30 and 35.  I am on 6mgs of Lodotra, but nothing seems to be changing.  If nothing is improving, why should I continue with it?

Has anyone any comments?

Thanks in advance.  C.

 

1 like, 27 replies

27 Replies

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  • Dave-California
    Dave-California constance.de

    Posted

    Hi Constance,

    I had a similar phase of my PMR treatment when I switched from regular Prednisone to Rayos (the US version of Lodotra).

    My rhematologist thought that the time release version of prednisone (Rayos) would assist in the taper process. I was at 11mg at this time. So I commenced with it after I had recovered from a flare. 

    Two months of the time release Rayos did nothing to help my aches and pain, that were actually worse, and blood tests indicated an increase in my ESR. So my rheumatologist recommended that I return to the regular Prednisone and take it as early in the morning as possible, which for me was between 5 and 6 AM.

    This procedure with the regular Prednisone worked well reducing my ESR significantly and continuing to use the "Eileen" slow taper, 

    I have continued with a very, very, very slow taper - about 0.5 mg reduction each 3-4 months (and longer if necessary) and all seem to be going well - reducing my ESR to between 5 and 8 - and i'm now at 4 mg of regular Prednisone.

    I realise that none of us are the same - but this is my story and I relaise that SLOW is the only answer.

    Dave

    • constance.de
      constance.de Dave-California

      Posted

      I am amazed by your comments about Lodotra.  I just thought they were a coated version of pred.😏  Not sure what to do!

      I do, of course, use the dsns method of reduction but I think I'd better just take longer between the reductions.  

    • MrsO-UK_Surrey
      MrsO-UK_Surrey constance.de

      Posted

      Constance, I don't know if this will help you to sort out what is arthritis and what is PMR in your case, but generally with PMR the pain is bilateral, so if your pain is in both arms, etc, then it could point to being that of PMR.  As far as your osteoarthritis is concerned, have your tried Rose Hip tablets?  My very trusted rheumy did some research on rose hips for arthritis several years ago and published an article on the benefits.  However, if you do consider giving them a try, do check with a pharmacist first for any known interaction between rose hips and Pred, and any other medications/supplements you may be taking.  In my case, aprt from touches of arthritis in various parts of my body, I also have intermittent pain from a slippage of my spine, so I do know how having things on top of PMR can muddy the waters.  For me, as well as reducing at a snail's pace in half mg reductions tapering to each new dose over about 7 weeks especially from the 5mg level, sticking to as many known anti-inflammatory foods as possible (especially oily fish) and avoiding those known to be pro-inflammatory, proved sufficient until PMR/GCA got fed up with invading my body!  It took more than 5 years though, so please don't give up heart after your 4 years - you will get there!

       

    • constance.de
      constance.de MrsO-UK_Surrey

      Posted

      Thanks MrsO!  Definitely bilateral in upper arms, wrists and hips. Not bilateral in left knee and ankle (although some pain in right ankle - both ankles very swollen!). Trouble is knowing whether to lower pred or not.  Have reached 5 mgs four times and then get 'stuck'.  Fingers and thumbs definitely OA.  

      I am absolutely amazed how quickly OA has spread over my body.  I suppose PMR and pred have weakened this old body.  My doctor now refers to my condition (when making referrals) as 'polyarthritis'.

      I am careful what I eat and have taken on a lot of your recommendations.  Thank you!

    • MrsO-UK_Surrey
      MrsO-UK_Surrey constance.de

      Posted

      Hi again, Constance! The bilateral pain in the areas you mention does sound very PMR-ish, and your recent higher ESR may also bear this out.  Yes, what Ouzel has said about it being normal to see a slightly higher ESR as we age is true but as you say your's remained within the normal range (0-20) for months, then why the increase - unless, of course, it is due to inflammation?  The higher doses of Pred may have been masking the OA areas.  One way to find out what is what, rather than you wondering about lowering Pred would be to slightly increase your dose for a week or so to see if at least the pain in the bilateral areas improved.

      ​With regard to your swollen ankles, Pred can case fluid retention, more in some people than in others.  Including plenty of known diuretic-type foods in the diet can help - asparagus, garlic, fennel, melon and celery to name just a few.  Although I didn't experience ankle swelling from Pred, I do from my blood pressure pills, and find it is noticeably worse if I take my eyes off the diuretic foods, and any food containing salt is an absolute no-no for me, so no ready-made or preserved meats for me if I want to preserve the slender ankles of my 20's!!!winklol

    • constance.de
      constance.de MrsO-UK_Surrey

      Posted

      Not fluid retention I'm afraid.  Ankles very sore and it's definitely bone related (odd shape and can't walk far).

      Thanks for your interest and support.

      C.💐

  • RD_Swede
    RD_Swede constance.de

    Posted

    Constance. I have had pmr and GCA but have been free from pred for many years. Unfortunately I was diagosed with hallux rigidus (stiff big toe) on one foot and later osteoarthritis and I am waiting for an operation. My foot hurts very much and after the first diagnosis I was given so-called rocker soles and they fitted a new rocker sole on three pairs of shoes (but there are also BMT shoes) If you google rocker shoes uk, you can read about them. I am not sure if they helped me so much as I got a new diagnosis osteoarthritis and I still have pain waiting for the operation. I have a pair type jogging/walking shoes that I probably should use more indoors. In Sweden we are entitled to have three pairs of shoes free of charge in our NHS. I chose wide shoes that I had. One was Ecco.

    I am curious about the .de after Constance. Does that mean that you live in Germany? 

    • constance.de
      constance.de RD_Swede

      Posted

      Hi RD!  I can sympathize with you on "big toe" issues.  I had gout many, many years ago, and every now and then I have 'crystal' attacks.  Excruciating, but they only last a day or two.  Thank goodness!  However, both big toes now hurt.  OA?!? (That could mean "old age".😏😃)

      Hope everything goes well with your operation.  I am loath to have ANY operation.

      Yes - I DO live in Germany.  I have for 44 years.  British though!

      All the best fr. Constance

    • iellen32
      iellen32 constance.de

      Posted

      Good morning from US, Constance!

      Rereadimg some posts I hope your toes are not hurting as much as time ago.

      I am feeling better since I am doing the tapering of Prednisone slower than my Rheumy recommends.

      I am grateful to these Forums for that.

      🌸

      !

  • linda17563
    linda17563 constance.de

    Posted

    Have been on pred 4 years...and still not well, my husband keeps asking the same question....what`s the point of taking that awful drug, if you still feel ill.......I don`t have the energy to keep explaining!!  Know just how you feel...in pain, and frustrated....Hope you resolve it soon.....and if you do, well.....let me know please!
    • constance.de
      constance.de linda17563

      Posted

      I've been on pred for 4 years too, and I ask myself the same question time and time again!

      Isn't it 'lovely' to feel sorry for oneself every now and again?😄. Until common sense kicks in and says 'STOP THAT'.

    • Anhaga
      Anhaga linda17563

      Posted

      Today I did one thing too many.  First time in ages, because I've been "good".  When I saw the lineup at the supermarket, I looked at the bunch of tulips, the cucumber and the kiwifruit and thought, I can live without these.  Put everything back and came home.  Now drinking tea and catching up with email, forums, etc, and so glad I didn't keep pushing on.  So glad I don't have to work, much as I miss it, glad I'm well enough to do as much as I can.  Basically, a thankful sort of day, in spite of it all.  🍀☕
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