Pressure to Reduce steroids

I was diagnosed with PMR in 2014. Have been on pred since. At present I am on 8mg per day but am not symptom free and generally feel unwell. The rheumatologist is constantly pushing me to reduce which I do then feel worse and dose goes back up - a rollercoaster for past few years. Now I am fed up. Dr wants me to start reducing again but I maintain if I am unwell on 8 what is the point? Realise difficulty of long term steroid use but what of quality of life in the present. Any thoughts? Could do with the value of your experience.

thanks

Tinwoman

17 Replies

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  • You really need to be on a dose that makes you relatively flexible and pain free before you start to reduce by the dead slow nearly stop method. Many people have got their steroid dose right down, even to zero, using this method, having failed to reduce by so called quicker methods. Do you know what dose you feel is controlling your symptoms? This should be your starting point even if it is something like 15 mgs. Let the symptoms settle and then start creeping down new dose one day( eg 14 mgs) then old dose 15 mgs for 6 days and so on until it is all new dose for the week. Never reducing more than 10% of your dose. So after 10 mgs you may want to invest in a good pill cutter and reduce in the same way by .5 of a 1 mg tablet. I hope this is clear it took me a while to get my Pred head round it and there are better explanations for DSNS reduction plans. Get your doctor on board. At present you have all the draw backs of steroid treatment and few of the benefits. Good luck, you're not alone in this struggle.

  • Thank you SheffieldJane this has confirmed that I should trust myself and resist pressure to reduce. regards

  • Hi tinwoman,

    Sorry to hear all you've been through. It is very difficult with some rheumatologists to get them to understand what pain you're in and restrictions your body is suffering. Is their rush to reduce based on your blood tests I wonder. I felt fine on my initial dose of 7.5mg but my inflammation indicators were bad and they upped the dose to 10mg. Many people on here say they've had pain but nothing has shown on tests. So much for clinical tests!

    Sheffieldjane is spot on with saying that what dose you last felt good on should be your starting point. No-one should have to put up with pain continually or suffer flare ups. I must confess that in between my six monthly appointments I managed my dosage and just (nicely) presented them with what I'd done as if there was no need for discussion and told them what I was planning to do. In some areas of life I've lost confidence but in dealing with the medical profession, I've become a quiet radical (my body, I know what pain level I'm at and I know how much medication to take).

    I hope you can get this sorted and be pain free. Take care of yourself.

  • Thank you for taking the time to reply to me. Your and replies from others have given me the boost I need.

  • That's my approach to the GP too, BirmLiz - find a reduction plan that works & tell them that's what you're going to do...!

  • Thank you. You've helped me a lot.

  • After 8 years on pred with only perhaps 18 months in that time being lower than 8mg - I don't see what your doctor is whinging about! Luckily, I have doctors whose attitude is "you need what you need" and are happy when their patient manages to get to 8mg - which is the physiological dose, the amount your body produces of its natural corticosteroid, cortisol.

    You need enough pred to make life worth living - I had 5 years of no pred and if I thought I had to go back there I'd be checking out the phone no for Dignitas because it was no life at all. I was dependent on others and constantly in pain.

  • Thanks PMRpro just needed this reassurance to go do battle about reducing before I am ready. I'd like a spell of pain free living!

  • My rheumatologist and i had a pretty good argument about my reducing. I tried to explain to her that I was doing the best I could but that my body was not willing to reduce any faster and that I could not do any more than what my body was allowing. I had to get tough with her. Fortunately when I did get tough with her she relented and now she allows me to go it at my own accord. I have been able to reduce but it is at an incredibly small crawl. And I do update her regularly as I reduce so that she knows that I am making some progress downward.

  • Hi Tinwoman,

    My wife was diagnosed with PMR almost a year ago and was started on 15mg pred, but your situation sounds very much like hers. Once the markers showed no inflammation, the rheumatologist started the tapering process, even though she was never symptom free. Within 6 months he had her down to 2.5mg, and she soon went back to ground zero of PMR. She stopped seeing the rheumy and went with her GP's advice that the quality of life at the present time was non-existent, so she had to go back to a relatively well condition. So, she has settled in at 10mg. Later this week she is going for a bone density check to see what the pred has done for that. Her weight gain is off the charts, but she is trying to manage with some exercise and less carbo. Her blood sugar is also taking a hit, but if tapering further means going back to the early PMR pain, she says forget that.

    Joe

  • Hi Joe,

    It's horrible when you get back the mobility on preds and then they whip them off you and you're back to square one. Tell your wife good luck with the bone density scan. Has she tried researching the GI diet? That is good for the blood sugar levels and also weight loss.

    All best wishes, hope she gets to eventually safely kick the steroid habit

  • Hi BirmLiz,

    I'll pass along your best wishes. Thank you. I'll tell her about the GI diet. Can you briefly describe it for me?

    Joe

  • Hi Joe,

    I'm trying a lower carb/GI lifestyle change (not diet!). The GI is basically food that releases sugar very slowly into the body so there are no spikes and your blood sugar levels stay on an even keel and you get less cravings. I think it was inspired by the diet devised for diabetics. There are many books on Amazon about it and my son has lost 5lbs in one week following it plus using mindfulness - eating more slowly, savouring each mouthful and listening to the body to see when you're full (these are suggestions from Paul McKenna's weight loss programme). I'm trying to think of my change in eating habits as a lifelong thing that will make me healthier and possibly help me loose weight as a side effect.

    Hope this helps.

  • I am on a similar diet. The 8 week blood sugar diet by Dr Michael Mosley. I have reversed my steroid induced diabetes and lost 2 stone! Bargain! It costs nothing except for the cost of the book available in mostbputlets and Tesco Sainsburys etc for around £4.

  • Congratulations on that weight loss PMRandRA! I must admit that I didn't bother doing anything about my weight until I was off steroids and they never moaned at the hospital when I was weighed. Being in remission I'm now concentrating everything on my mobility and fitness plus the excess flab. In eighteen months I'll be 60 and (fingers crossed) if I'm still in remission I plan a 1960's fancy dress party. I fully intend to go as a flower child and don't want to be as wide as I am short in a flowing kaftan! Keep up the good work and all best wishes for your tapering.

    Love and peace :)

  • I am now down to 8mg a day. My battle lasted for 2 years when I reached 10mg a day! And invariably had to increase and start again. Then I started on the go very slowly system and was taking 10,10,10,9,10,10,10,9, etc for a month then 10,10,9,10,10,9,10,10,9, then 10,9,10,9,10,9 for a month then 9,9,9 etc. Then the same with 8 . 9,9,9,8,9,9,9,8 etc. Each drop I had shoulder niggles, but bearable, so I continued. My doc was not enamoured with this method and said it would take forever, so I just said its better than never!

    So far so good then. It is essential not to drop too much in one go which is what the docs seem to want. I have started tasting adrenaline again which means my own glands are starting to work again. 👍

  • Hi PMRandRA,

    Yes I had the shoulder niggles too. It seemed to me that it was a very fine line between kick starting my body re-set and having a flare up. That's why the go slow method is so great - you can judge better (I think) exactly how slowly to reduce. I took my last steroid (fingers crossed) in December last year so it does work. Hope you carry on reducing with no snags.

    All the best

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