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Cutting down on Pred

Posted , 12 users are following.

Susanne_M_UK
Susanne_M_UK

I saw my rheumy consultant on Thursday. He has decided to cut my Pred dose by 5mg weekly from 40mg, so 35 this week, 30 the next week etc, until I get to 20mg. Obviously, it will depend on my ESR and GRP, currently stable at 27 and 7.5.

I'm concerned that the drop is too quick, but suppose at this level, they want it down quickly.

Also been put on Alandronic Acid as of this Saturday.

Signed off for another 3 weeks. Maybe when I get down towards 20, I'll feel able to cope with part time work.

When I was monitored for PMR, my then consultant always cut down much more carefully, like 2.5 over a month.

What do you think of the quick reduction?

4 likes, 45 replies

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  • pat38625
    pat38625 Susanne_M_UK

    Posted

    Hi Susanne, I am not qualified to answer your questions as am a newbie myself, just November last.  I was told to cut from 20mg to 15mg, I saw my gp the next day and told her it was too big of a drop, so I went from 20mg to 17.5mg and am managing ok until I see a Reumy.  

    Hang on in there and someone will be along in a minute or so.  Good luck on your journey.     Pat

  • tina-uk_cwall
    tina-uk_cwall Susanne_M_UK

    Posted

    Hello Susanne, may I ask why are you on such a high dose of prednisone and how long have you been on that dose for. Christina 
  • jean39702
    jean39702 Susanne_M_UK

    Posted

    Susanne, I'm no expert either.  I can only share my own experience.  I was on 40 mg and pain free for 2 weeks and advised to drop every 2 weeks by 5 mg.  I was OK at 35 and not too bad at 30, but had a relapse at 25.  I tried inching back up without any luck and ended up back at 40.  At that point I had read enough and received advice on this and other forums to know I had to go much slower and no more than 10% reduction with each drop.  It's been 8 months and I'm looking to drop to 15 mg soon.   Be cautious and careful!
  • tina-uk_cwall
    tina-uk_cwall Susanne_M_UK

    Posted

    There you go, a reply from someone who's been there and worn the t shirt. It's not about getting to zero Asap, no matter what the drs say, it's about taking the right level of prednisone to cope with the inflamation and not the other way round. As Jean has said reduce slower to avoid flare ups. Have you had a bone density test that has revealed low density hence AA. Christina
    • vanessa66630
      vanessa66630 tina-uk_cwall

      Posted

      please help me, when you cut down on pred and do not have any pain, do you carry on reducing until you hit your pain level, or is it about tiredness, I am worried that I do not have PMR but something with similar symptoms but does not require preds, when people say flare do they mean pain or tiredness?
    • EileenH
      EileenH vanessa66630

      Posted

      The reduction is looking for the lowest dose that controls the PMR symptoms - you know what yours were and that is what you are watching out for. The pred doesn't make a lot of difference to the fatigue in PMR, except possibly in the early days at the higher doses when the "pred euphoria" may have an effect. The fatigue must be managed by pacing yourself, activity management and rest. They are really different aspects altogether.
  • janet08828
    janet08828 Susanne_M_UK

    Posted

    Hi Susanne -

    Just been through this, after taking over a year to get from 30mg down to 15 mg my rheumy suddenly had the bright idea of dropping from 15mg to 5mg  in the space of 2 months - not a good idea, it was way too fast and all of a sudden he was talking about some pretty drastic medication - instead of mtx which I am  on at the moment - he decided that this mix wasn't working for me.

    For some reason he didn't seem to think that dropping so fast was the cause of my flare - he didn't mention it anyway - it was this brilliant forum and Eileen - who gave me the gumption, through their advice and understanding of the problems - to phone up and question whether it might not be an idea to keep my meds as is with 10 mg pred instead of 5mg - give it a chance to work. So that is where I am now.

    Fingers crossed that this works.

    I would absolutely question the wisdom of dropping so much so fast.

     

  • EileenH
    EileenH Susanne_M_UK

    Posted

    If they did decide it was GCA then that reduction is far too fast and probably far too soon. The perceived wisdom has been not more than 10% of current dose. And reducing weekly doesn't allow your body time to decide if the new dose is enough to control the symptoms - by the time it has decided you have no idea which dose was the right one for now and you have to go right back to the high dose. Work published last year showed that there is evidence of GCA inflammation still being present after 6 months at high pred doses (above 20mg). 

    Have I given you this link before?

    https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

    The second last link (I think) is to the Bristol group paper about managing PMR and GCA. For GCA they use a taper of 60/50/40/30/20 mg/day with each dose maintained for a month. Then they use the same reduction as for PMR. Their protocols achieve flare rates of 1 in 5 instead of the more common 3 in 5. A GCA flare is not like RA flares where you taper fast to a lower dose - often doing that in GCA merely results in a return of the symptoms as the inflammation is not fully controlled and means a return to a higher dose. Every time you yoyo the dose it becomes more difficult to manage the next reduction and in the end you have taken more pred than if you had been more reticent about a reduction in the first place.

    Where are you? It's London isn't it?  Is Ashford Middlesex an option?

  • TERI23
    TERI23 Susanne_M_UK

    Posted

    My MD usually tells me one week also. I have had PMR for 51/2 years and can only get down to 5mg for just a couple of weeks and then have to go up to 10 or 20 again to calm things down. Its not the aches and pains that get me down it's the fatigue just have no energy and have to push to do anything so sick of this PMR and am wondering what the pred. is doing to my insides. Doctor says it lasts for 5 years but he does'nt put much stock in that statement.  
    • EileenH
      EileenH TERI23

      Posted

      Your doctor is probably causing your problems by telling you to reduce like that. You must reduce very slowly and in small steps to find the lowest dose that manages your symptoms. 

      Follow this link for further links. There is a paper mentioned in the first post by a group in Bristol England with their reduction scheme for PMR. Further on in the thread is my "dead slow and nearly stop" reduction plan with which a lot of patients have reduced from their starting dose of about 15mg to well below 10mg for a long term dose and often to below 5mg.

      If he has had you on pred for over 5 years and is making you reduce at that speed each time he is not allowing your adrenal glands any chance at all to start producing cortisol themselves again - it is a slow and rather longwinded process for the hormone feedback system to stabilise. Once you get below about 7 or 8mg your body has to produce its own to keep your systems going. The fatigue and feeling weak are typical symptoms of that. You need to reduce from 10mg far more slowly and in small steps.

      Why do doctors quote these "it lasts for..." figures? Some tell you it lasts 2 years, yours is saying 5 years. I know patients who have got off pred in 2 years, I know people who still have PMR if they reduce too far after 10 years. The literature says that about a quarter get off pred in a couple of years or less but are a higher risk of a relapse. Half take somewhere up to between 4 and 6 years and the rest take longer, sometimes never get off pred. That certainly fits the hundreds of patients we have come across on the forums and support groups.

      The one absolutely certain fact about PMR is that patients take as long to get off pred as THEY need, it cannot be forced and it cannot be speeded up. If the patient needs 1mg for life - they need 1mg for life. The underlying autoimmune disorder that causes the symptoms will go into remission when it is good and ready. Not before. Doctors who try to be hares end up with patients who struggle and feel ill. The tortoise wins the race more often than not.

  • TERI23
    TERI23 Susanne_M_UK

    Posted

    Thanks for the info. I will try to slow down the reduction. 
  • Susanne_M_UK
    Susanne_M_UK

    Posted

    Thanks for all your replies.

    As I thought, and I do feel very uncomfortable about the drastic weekly reductions. Difficult to go against rheumy's instructions at this stage, although I did say to him that I thought it was very steep. Not due to see him again until mid February, as he is away, but if ESR/CRP go up in the meantime, will talk to GP.

    Having weekly bloodtests though, so maybe it will be picked up quickly.

    Eileen, GCA is confirmed. I'm in Surrey and see rheumy locally at Epsom.

    As for the AA, have not had density test, but was advised to start on this now due to high dose of Preds. My teeth are generally good and no dental work envisaged currently.

    Christina, I was diagnosed with GCA a week before Christmas and have been on 40mg Pred since then. Have had PMR for 5 years, but it has been manageable for at least 18 months and I was only on 5mg during those last 18 months.

    Currently signed off work for another three weeks. Rheumy said to see how I go on the reduction.

    Right now, I have little faith in either rheumy or my GP, who is certainly floundering in the dark with this condition.

    • tina-uk_cwall
      tina-uk_cwall Susanne_M_UK

      Posted

      Susanne, you know that you are unhappy to taper down so quickly, that's why you're asking for reassurance. Personally, if I were you I wouldn't reduce as per your rheumatologist instructions. I would follow Eileen's advise above. Jean has told you of her mishap reducing too quickly so be warned. And as for your rheumatologist that you'll see in mid February and who will expect you to be on at least 30mgs, don't worry about what they may say, just be honest and say that I felt it would be more advantageous to take it slower in line with recommended GCA treatment protocol. But, whatever you do do, don't get stressed out, stress does you no good. All the best, christina 
    • EileenH
      EileenH Susanne_M_UK

      Posted

      I've sent you a pm with some links.

      I hope you can read them since this stupid site replaces colons with smiley faces! If not, google the name I gave you and you will get the appropriate site and information.

    • MrsO-UK_Surrey
      MrsO-UK_Surrey Susanne_M_UK

      Posted

      Hi Susanne, I notice that you are in Epsom.  I have an excellent rheumy in Chertsey who is involved in research into PMR and GCA, if you wish to have a second opinion.  However, I can't promise that he would suggest any slower a reduction than your rheumy at Epsom as, under his guidance and close monitoring of blood tests etc,  I reduced from my 40mg starting dose even faster than has been suggested for you!

      However, if you are interested, I also run a support group at a venue in Chertsey, where an average of 30 members meet every couple of months for a cuppa and a chat in support of each other, often with guest speakers from the medical profession, etc.  Please send me a PM if you are interested in further details. 

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