Reducing Pred..choices...obey doctor or DSNS?

Hello Everyone,

First of all thank you for all the wise, wonderful, and witty posters, and the expert ladies on this site. Over the past months, you have all cheered me up and given me so much helpful information. Now I need to ask for your advice. I’ve had PMR/GCA since 2010, unrecognized and untreated until a visit to Emergency for pain in 2013. Then prescribed 50 mg prednisone for PMR pain/stiffness and GCA symptoms despite no finding on temporal artery biopsy. Since 2013 I have reduced, with many ups and downs, to II mg in January when I had a very bad flare. Hung on at 15mg until July when CRP went up to 32 and Rheumatologist finally put me up to 30mg but with dire warnings to reduce very quickly (30-25-20- to 15 over 4 weeks).

I think this is way too fast as temple pain increased at 20mg. Since 2013 I have had many side effects from the prednisone including the big pumpkin face and the prednisone belly (a big offence to my dwindling 70 yr. old vanity). Over the past years, apparently due to immunocompromised system due to pred, I’ve had a Cryptococcus lung nodule, sinus infections, cataracts, a colon abscess. All fixed now so I’m doing well, in my alternate reality of the PMR world.

How to proceed? I feel as if my choices are to obey docs and feel awful or reduce by DSNS and take the consequences. How long to stay on 25mg as it seems the lowest I can go? I would love to hear from anyone with a long history (years now) of taking prednisone in this kind of situation.

Thank you all again

24 Replies

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  • First of all Congratulations on surviving in your alternative world. 😊

    I'm sure the aunties will be along soon with their usual sound advice. Your docs tapering sounds a bit drastic to me but then I'm only a learner!

    All good wishes.

  • Hi CT-5012,

    Thank you for your encouragement, this list is tops in my alternate universe.

  • I think you know the answer really . I don't know why some doctors advise a rapid decrease when the patient is far more likely to flare and have to start again. You might manage those drops until you reach 20 but then I would advocate a much gentler regime like DSNS. Honestly you have suffered enough. If doctors experienced our pain for 5 minutes I think they'd change their tune. You find that with doctors who have personal experience of conditions. It is dangerous to mess about with GCA, personally I'll take Pred with all the downsides rather than risk my eyes. Blessings on whatever you do. Keep that vanity, we are a different breed, baby boomers will not be put in the corner!

  • Hi Sheffieldjane,

    You are right, deep down I do know and all this encouragement really helps. I'll remember my BB attitude and get on with it. Can we say "Power to the Pred"?

    Thanks again

  • 'Many ups and downs' this is so common a story and it is getting less common over the last ten years, but it has been a slog to get people and medics to understand that long-term use of pred is a whole different ball game. There are other people, some of them children, who can only live with longterm pred.

    Maybe this link will help.......http://www.pmr-gca-northeast.org.uk/stories.php?id=5

    I was extremely lucky all those years ago my two GPs, Nurses in the practice and my Consultant became friends and all those five years I was protected and cared for, nothing was too much trouble and with much laughter and sometimes tears on my part.

    Ragnar (Swedish) entered my life, through a Canadian website, Ragnoar was on the 'Good Ship GCA&PMR' he was Captain Bob, I was the Donkey Man. Ragnar visited the UK and came to a support group meeting, He had both PMR&GCA and had devised a slow reduction plan and it worked for him. PMRpro and I worked on this interesting idea, as we had found that yo-yoing led to problems and it seemed that this possibly could be a way forward, so Dead Slow and Nearly Stop and Tortoise and Hare were devised. Many have been sent out over the past years, always with a caveat that you discuss with your medics and then decide yourself what to do.

    Enough of history, on this site a Steroid Taper Web Application look to the right of this page in the first box follow the link and decide.

    But before you do that, follow this link and read page 4 of the Summer Newsletter 'You are Not Alone pmr-gca-northeast.org.uk/as.... The beginning of full recognition that slow and steady is the way to control the inflammation, it is not a cure, there is none yet.

    GCA is never to be messed around with, your sight is precious. Yo-yoing with both GCA and PMR does not help, a reduction of more than 10% at a time, does not help and the top medics have said this for years.

    The aim is to find a place where you are comfortable and can live a fairly comfortable life whilst on this journey none of us ever wanted to undertake, so that means slow and steady progress downwards. If a flare happens go back to where you were and if that does not work, hit it hard and fast for a few days, then slowly get back down to where you were.

    All of the above is personal, it is your decision always, you know yourself better than anyone else. Listen to your body, your medics and yourself and make that personal decision.

    Yes it is long post and I apologise for taking up so much space.

    PS: I am not a baby boomer, pre 2nd WW. Lucky enough to have benefited from the 1944 Education Act and the 1948 NHS. oh and a paid up member of the awkward squad. Hel, Viking.

  • Totally agree with you.

    PS not a baby boomer either, mid WW2 also in the awkward squad, hel Viking.

  • Dear Jinasc,

    Thank you for your reply, such an interesting history about Ragnar and your own pre war experiences. This is what I like so much about this list...the variety of life experiences and knowledge, and such willingness to help. I'll have a look at all your references and let you know how I get on. You have encouraged me so much to listen to my gut (head in the case of PMR/GCA!

  • Hello coda,

    Your rheumatologist's 4 week reduction plan seems to me like asking for trouble. I know it's supposed to be ok to take bigger drops when at higher doses (subject to the 10% guide), but this is such an individual thing and, for me, there's no choice but to listen to what my body is telling me. If there was even a hint of gca I'd be even more cautious.

    I know pred can bring with it a heap of other, unwanted, things, but thank goodness it also does what's needed in enabling us to live more normal lives again - even if now in the slow lane. It's a funny thing - I've had several conversations with my GP along the lines that, yes, the pmr has a mind of it's own and the inflammation will subside when it's ready; but, anyway I need to continue reducing the pred... Is it me, or is this as contradictory as I think it is?!

  • Yes it is. 😟

  • Thank you Patience,

    It always seems to be this push and pull about reducing .. a slow lane for sure. I feel like one of those drivers who keeps changing lanes.

  • I've been on pred for 8 years but have never needed above 15mg except when I was on Medrol which was useless and even at 20mg did next to nothing. I haven't fallen apart yet!

    If you had symptoms reemerging at 15mg - what makes him think that you will manage at 15mg now? If the disease activity has flared that means you will need more pred until the disease activity calcms down. This is PMR, not RA where they give a short course of high dose pred to remove the inflammation and then the DMARD takes over. Pred is our DMARD and if you need more for a few months you need more. No ifs or buts.

    It does sound as if 20mg almost does it - so I would try going down 1mg at a time until you find the point it doesn't. And then say, this is where I can get to.

    Have you had another opinion? And has he ever suggested adding methotrexate or leflunomide or something? It might be worth trying if they don't make you ill.

  • Dear PMRpro,

    Thank you for your sensible and encouraging reply. As always, the voice of reason. I've tried the leflunomide and methotrexate to no avail and with side effects. I'm going to go with the collective wisdom of this tribe, and my own feelings, and stick with 20 and then very slow down from there. I think I fell for the myth that PMR/GCA would only last for a year or two and so expected to be pred free by now. Very encouraged by all the life stories shared here. Wishing you the best,

  • First thing: Boomers don't obey! We gather information, then apply reason, then act!

    Second thing: GCA is nothing to fool with, because your sight is at stake!

    Third thing: Pumpkin head and Pred belly are perfect for the new fashions - just look at the cowl neck tunics and leggings for fal!

    Being an American and a New Yorker, I don't know how your health care system works, but if it were my sight at stake, I'd be in an emergency room at a hospital screaming my bloody head off, getting the necessary immediate treatment, and then getting the proper referrals for long term care.

    All my best to you...

  • Hi GG,

    Thank you for your reply. You did make me laugh and I will shop today for the latest in PredStyle fashion. I feel so encouraged by all the helpful and kind advice. My stylish best to you too.

  • All of the comments are SO helpful to the rest of us also. You got good advice. My journey has been similar ...I am 80 and was diagnosed with GCA in 2012. Thanks to PMR pro , I discovered that I was not absorbing the prednisone . It was a hard sell...no one would believe me. I did the research...and finally yesterday...the rheumatologist acknowledged that I was right. She complimented me on my tenacity. I am now on lodotra ....I am in the US and it is Rayos $$$$$ here. .hence the purchase in England via mail. It was an immediate jolt ...had to reduce dosage. I am also starting shots of Actemra every two weeks. Hoping to use dead slow method of reducing although she wanted me to cut it more quickly, thanks to this forum I will not take that advice. Got a kick out of the stylish comments...I have changed my wardrobe to cope with the mid section increase and am hoping that styles won't change till I get my waist back. One other thought...she mentioned crushing the regular pill. I have not been able to get the 2 and 1 mg lodotra ( back order) . Has anyone ever done that ??

  • Why crush the regular pill? So you absorb it better?

  • Because I need smaller than 5 milligrams to reduce. I have not been able to get smaller than 5 mg. of lodotra. I had not been absorbing the regular tablets . So....to go from to 10 to 9 is a problem. She suggested I crush them I realize I do not always make myself clear. That would be 1 lodotra ( 5mg) and four crushed regular. I just wondered if in your experience you had heard of that.and yes... the hope is I mightabsorb it . In my calling the pharmacies for lodotra someone mentioned dufusible prednisone. Liquid form. Meant for children.

  • Yes, liquid and/or soluble steroids are available and they aren't just for children - they are for anyone with problems swallowing or absorbing.

    But what exactly is the problem with managing your PMR with depot Medrol injections?

    rheumatology.org/Portals/0/...

    "Recommendation 5: (PICO 7) The panel conditionally recommends considering intramuscular (i.m.) methylprednisolone as an alternative to oral GCs. The choice between oral GCs and i.m. methylprednisolone remains at the discretion of the treating physician.

    In one clinical trial, i.m. methylprednisolone was applied at a dose of 120 mg every 3 weeks until week 9. At week 12, 100 mg were used and subsequently, injections were continued at monthly intervals and the dose was reduced by 20 mg every 12 weeks until week 48. Thereafter, the dose was reduced by 20 mg every 16 weeks until discontinuation."

  • No one has ever mentioned that. Would that be the case for GCA ...? That is my primary diagnosis and I have had two eye scares . She may have mentioned some other therapy but did not want to do it as it was not as strong

  • I know someone with GCA who was managed with injections because of really severe gastric problems.

    However - if you are going to be on Actemra that is state-of-the-art medicine and you WILL be able to reduce more quickly, you probably won't need the Dead Slow approach. Using Actemra is to enable a fast reduction of pred - it isn't ethical to only use Actemra and it hasn't been shown to work as well as pred because of that. But it does allow very speedy reductions for most people.

  • Thank you. She suggested I drop from 10 to 5 while on the Actemra . I thought that it was too big a drop. Maybe not . The crushed probably is just for my mental comfort I guess.

  • I get your concern - would she let you do 2.5mg twice? Because the adrenal problem isn't cured by the Actemra - so slower drops will be needed from 5mg for that reason. Though some doctors are very gung-ho about it.

  • Hi PMRpro,

    Not sure why I got this reply, I don't crush pills...?

  • The reply was to 30048

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