Advice re controlling a flare, please

I would really appreciate some advice, please. I was on 15 mg of Prednisolone when first diagnosed last September. I then tapered to 12.5 mg which was controlling the pain, then Dr Hughes told me to reduce to 10 mg, which I did, but the pain came back with a vengeance so I went to see him and he told me to go back up to 12.5 mg for 2 weeks (he also gave me an injection) and then taper down to 10 mg again for 4 weeks until I see him next. I reduced to the 10 mg on Tuesday of this week as instructed but for the last couple of days have been in pain again - my muscles are burning and my joints aching. It was so bad at 4.00 am today that I didn't know what to do with myself so I got up, had something to eat and took the 10 mg - no relief from the pain. When my husband got up he found me in tears on the sofa. He suggested I take an extra 2.5 mg, which I did, but it has not helped with the pain. My questions are - if I continue to take the higher dose of 12.5 mg how long should it be before it kicks in, and also should I actually keep taking the 12.5 mg or try again to go down to 10 mg - if so after how long? Any advice much appreciated.

30 Replies

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  • Far be it for me to disagree with DrH but you are obviously one of the many who simply cannot cope with such a big reduction plus the disease seems to be so active you need a higher dose for now.

    I also do wonder about one aspect many doctors seem totally unaware of: while bioavailability (the amount the body actually gets) of pred is quoted as 70%, in fact it varies from 90% down to 50%. If you are a 50% person you are absorbing far less of the pred you take than a 90% person.

    Top experts said some years ago that in tapering pred the reduction steps should not be more than 10% of the current dose - just over 1mg by now, you are trying double that. If you need somewhere between 12.5 and 10mg you are missing it by going down so much and the dose is no longer enough to manage the inflammation so the symptoms return. If you get into a yoyo pattern it often becomes increasingly difficult to reduce, especially that much.

    This approach has been used successfully by a lot of people on the 3 UK forums over the last 4 years or so and is now being used in a clinical study by rheumatologists in Leeds - Prof Mackie works closely on PMR with DrH. She told me a few weeks ago that the feedback thus far is very positive. A similar scheme has been used by other rheumies in the NE for some years - they also comment on how successful it is.

    healthunlocked.com/pmrgcauk...

    If I were you I would ask DrH if he minds if you try it using 1mg at a time at most. But first, you have to get the pain under control again - and that MAY take 15mg this time. I hope it doesn't but after a couple of days it sounds as if you are nicely into a flare.

  • Thank you so much, PMRPro - that is very interesting about the 50% and 90%. I am going to email Jody now to ask her to tell Dr H that reducing to 10 mg has brought on a flare again so I have gone back up to 12.5 mg and then call her tomorrow to see what she/he says.

  • Oh, poor you. What a shame. Just want to add to the other comments - the reminder to treat yourself with care. If you want to help yourself get through the flare as quickly as possible with the least amount of extra pred, remember you are ill and just behave like a poorly person, a bit self indulgent but do gentle exercise and expose yourself to as little stress as you can manage. Once you are back on track you can pick up activities again, but until PMR is really gone you will always have to remember to pace yourself.

    I am the Queen of pacing nowadays!

  • Thank you, Heron. I am not good at pacing myself! Must practice.

  • Tell me about it! Unfortunately I no longer just feel my house is a tip, it IS a tip. But, hey, if you don't have your health, what do you have? That being said, the long absent sun has just peeked out so I'm going to go outdoors and enjoy it (just 3:20 pm here). :)

  • Enjoy the sunshine - dark and rainy here! Thanks again.

  • One PMR friend calls it being a Precious Princess - works for her!

    Have you read the pacing stuff?

    healthunlocked.com/pmrgcauk...

  • I shall read that now, thanks very much!

  • Good morning SusyTe.. i really sympathise with you as i am a patient of Dr Hughes and also struggling to reduce on the steroids..The pain you describe is exactly what i have been going through even down to struggling to lift a cup up to my mouth when the pain in the arms and shoulders are ripe. I reduce at half a mg at a time and i do 2days @16half mg and 1day 16mg..i am trying to get below 15mg but if i go to fast i get flare-ups to my legs..My pain is much easier on 17mg steroid but i cannot stay that high ..i don't see Dr Hughes until May so that gives me chance to reduce even slower in this horrible cold, damp weather..PMRpro has given me so much advice and Polkadotcom..and we are All different. Ive tried everyway but which way taking my pred in 2 lots at different times of the day which sometimes helps depending where my pain is and how severe it is..i get relief from some gentle BowenTherapy about every 10days to a fortnight..After 13years i struggle on but i'm still learning on the way. I will watch for any posts from you with interest..Best wishes and i hope you soon get some relief from your pain ..trish29

  • Thanks for replying, Trish. I would not wish this on anyone but sometimes it is good not to feel alone and that there are others out there who understand. I know my hubby "gets it" but precious few others, even my closest friends. But 13 years - wow?! I really feel for you - that's tough.

    Funnily enough I was just looking online for someone locally to me in Weybridge who does Bowen Therapy and found Diana Menzies-Smith - but if you can recommend someone I would be most grateful.

    Thank you for your kind words and I hope you manage to reduce the Pred and in time get rid of this illness.

    Warm wishes, Susy x

  • Hello again SusyTe.. as you live at Weybridge are you a member of the Support Group of Surrey at Chertsey that i belong to ?? YOU are Never Alone at these meetings. I live in Fetcham..Leatherhead, Surrey. In the next week there will probably be a post re the Next meeting which is Tues 14th Feb which i hope to be going to and if you were able to go as a guest we could meet up and I can give you the details of my Bowen Therapist. I nearly went to the lady you named at Weybridge but i found my other lady instead but she is at Hampton .. My lady is PMR aware ..Best wishes trish29

  • Hi Trish. I am not a member of that group at the moment. My problem would be, I think, that I work 4 days a week in the City so would not be able to get to the meetings? Would welcome the details of your lady of possible - I have been to Diana once before last year for Reiki after my hysterectomy, which seemed to turn into a metatronic healing session which was a bit "out there" for me!

  • Hi SusyTe ..you must find working hard going.. i worked for about 18months in the beginning of my illness but i retired at 60..and im 70 now ..if you want to get in touch re my Bowen Therapist send to me as Trish 29...no29 KT22 9PA.. trish

  • Yes, Trish, am finding it tough. I have taken a couple of weeks off but am due back this Thursday - not sure I will be able to manage it - if so will have to start back Monday in the hope that the increased dose of 12.5 mg has helped by then. Dr Hughes's PA called me to say to stay on that for the time being to see if I can get the pain back under control. I am going to have a meeting with HR and Occupational Health to see what suggestions they have to help me at work as I cannot give up this job at the moment. I have started planning to hopefully leave at the end of the year but it depends on our finances.

    Sorry - not quite sure what that is at the end of your message - a post code? Got brain fog today!

  • Hi SusyTe , yes its a postcode as i'm not sure how much information we are allowed to give out. I hope your pain eases soon ..trish

  • Thanks, Trish - will look into it - much appreciated. Am going to lie down with a hot pad now. Onwards and upwards.

  • Use a private message ladies - click on the blue name next to the avatar and it will take you to the person's profile page. At the top right is a box to click on for messages. You write a post just as normal - but only the named person/s can see it. You can have a group chat using it which can be fun!

  • Thank you PMRpro.. ive never private messaged before .. Ist time for everything..lol trish xx

  • Aha! Thanks, PMRPro!

  • Hello SusyTe, I can sympathise as my own pattern just about mirrors yours - diagnosed and started on 15mg in September, reduced to 12.5mg 2 weeks later, then to 10mg 2 weeks later. It was that last reduction that triggered a flare, and in December - after trying to improve things by creeping up a mg at a time - I bit the bullet and went back up to my 15mg starting dose. Got a lot of relief from that, and since the New Year have been reducing very gradually - no more than 0.5mg a time. I'm now on 13.5mg and hoping to reduce to 13 in about a week, so that will be a drop of 2mg over a 6 week period. It's frustratingly slow and I'm possibly being over-cautious, but I really do believe it will give me the best chance of avoiding a flare.

    As has been said before, we're all individual in how we react - some seem to have no problems reducing quite rapidly down to 10mg and then take it slower; for others, like me (and perhaps you) we need that more gradual adjustment even from the higher doses. I also have a constant struggle to pace myself effectively and not overdo things; but I no longer feel too much guilt at having the odd "duvet day" and I give myself a good talking to about priorities in life! I do feel for you having to work - that can't help, as you're not fully in control with the pacing. Hope you get back on an even keel soon.

  • It isn't slow if it works!!!!!!

  • Good point!!

  • I know, I know - but I'm only human and I get impatient! Also, I have a GP who tries to do things by textbook/rheumatology guidance, and thinks getting to a low dose is the goal. I've only been trying to educate her since September, so give it a chance!

  • Not simply a low dose - the lowest dose that works. You'd think they'd get that idea wouldn't you? No virtue in taking too low a dose - no benefits to balance out the downsides if you have them.

    I know I keep banging on about it but there are always new people looking at a thread who haven't heard it before.

  • Me too, Patience - I have very little patience with this! Got to learn to slow down - just so difficult.

  • Thanks, Patience. It is such a slow process! I went on a week's detox retreat the week before last and felt great, while I was on the 12.5 mg. Left there full of hope and positivity, reduced to 10 mg on the date I had set with Dr Hughes and wham! Flooded with pain again. So disappointed - I stupidly thought that the detox might help me to reduce to 10 mg this time without problem. Obviously not. So back on 12.5 mg for a month now and will ask him when I see him at the end of it if I can reduce by less than 2.5 mg next time. I hope you can manage to keep reducing as you want.

  • I won't start the "detox doesn't work" argument - that's what your liver and kidneys are for. However - what was different about that week - other than the fact you weren't at work? What was "out" of your diet?

  • Oh, I know, PMRPro - my liver and kidneys certainly do a good job! I really wanted to detox my mind as well as my body - although the latter was a plus - I did feel really good on the delicious fresh fruit and veggie juices (one every 2 hrs to keep my blood sugar stable), and home-made veggie soup in the evenings. The week away in the beautiful, peaceful Sussex countryside gave me time alone to really rest, reflect and think about what I want for the future - for me and my hubby. I had time to think about a plan for how and when to leave my demanding boss, to think about where and when we can move to gain more peace and quiet, how we can improve my elderly father's health as much as we can, how I shouldn't feel guilty if I can't "fix" everything for everyone, and so on. It gave me a complete break from my boss and a bit of a break from the issues with my father. All I did was walk some mornings, use the Chi machine (which I loved, by the way, and have bought one from the manufacturers who were having a sale), sit by the fire with a blanket over me reading, lie on my bed with a blanket over me, reading and snoozing - and that was it. I felt so good by the time I left, mentally and physically, that I thought this time around my body would handle the drop from 12.5 mg to 10 mg, no problem. So I was really disappointed and upset when the pain flared up the next day after I had left the retreat and had dropped to the 10 mg. I guess that dose is just not enough for me to cope with my "normal" life. I half wished I had dropped to the 10 mg while I was there to see if it would have worked while I was in the retreat bubble and getting so much rest. Who knows - all I know is that I am back up to 12.5 mg (second day of it) and still in pain. Jody says if it doesn't ease off by the end of the week I may have to see Dr Hughes and go back up to 15 mg. Bit depressed and trying to think about what to try next just to help a bit - I had a cranio-sacral session last week, tried a gentle yoga class and I am looking into Bowen Therapy, as you know.

    Regarding what was "out" of my diet - salmon, eggs, cottage cheese, stir-fries - those are mainly what I eat as I don't eat meat. Occasionally I have a piece of sourdough toast but that is rare. I avoid wheat and dairy mostly, apart from the cottage cheese. I eat berries, a green smoothie or eggs for breakfast, a stir-fry, soup or salad for lunch, or a salmon fillet with green veggies, and the same in the evening. I sprinkle seeds onto most things, use coconut oil, eat avocado, kale, spinach - I am a green fiend! So I think I have a pretty healthy diet - although you wouldn't think it to look at me at the moment, with fat tummy and moon face - my hips and cheekbones have disappeared.

  • Don't worry about the 15mg dose - you can manage on less when you aren't thrashing yourself ragged. We've always said that people who work need a higher dose.

    If things flared the next day it COULD be steroid withdrawal and dropping in smaller steps would deal with that and let you get to a lower dose. If symptoms return the day you drop it is far more likely to be withdrawal than a flare (unless you have a very short anti-inflammatory period) and then if you stay at the lower dose that is too low you get a double whammy.

    It'll sort out.

  • Thank you for the reassuring words, PMRPro - I really appreciate it - you and this forum are keeping me sane! :-)

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