holidays, Christmas, Easter, Summer holidays, just before travelling, weddings etc.
Mainly I have noticed it is women who do so. The above are times when women always are the ones who have to 'do things'.
Sitting where you are till these more stressful times are over makes me wonder WHY do we try to cope with a drop and stress at the same time.
We all know that stress when dealing with auto-immune illness can and does cause us problems. and we are not giving our body a chance by just adding to its problem and asking it to cope with extra stress and a reduction.
Once you are back to what passes for your normality then resume your reduction plan.
Me? I used to take a deep breath and stay where I was are till it was over.
I wish you all a happy, stress free holidays and then onward and upwards in 2023.
Written by
jinasc
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It's hard to admit "defeat" (multiple quotation marks! and I know it's just a temporary glitch when you have to go back up to a previous dose) and accept that the tapering plan set out at the beginning isn't necessarily going to go as expected, but thanks to all the advice and support on this forum, even the most recalcitrant (I count myself in) will come to realise that (ex-) patients' experiences are invaluable in making the best decisions possible for each of us.
I don't accept the use of the word "defeat" in dealing with an auto immune illness it is not a war it is your body struggling to deal with something it does not know how to defeat so we have to help it out, best we can.
So the replacement word is 'manage'. You know yourself better than anyone else.
Dochaz (doesn't that mean "hope" in Gaelic?). Having just been through the most torrid week and feeling as though I am back at the START of PMR (diagnosed in May 2017) as far as my symptoms are concerned, I realised today I would happily go back to the starting dose (20 mgs) in order to feel well. BUT I don't think such drastic steps will be necessary - I went back up to 8mgs this morning , on advice from this site and now (late afternoon) my very stiff shoulders, aching hands and hips are beginning to settle. I am also coming down with a cold so my body is battling a virus too.
I went back to 11 mg (the dose at which my inflammatory markers were lowest since beginning Prednisone) 2 days ago. I'm feeling much better already. I'm not sure whether to drop straight back down to 7 in another week or so, or to take slower steps from 11 to 7. I'll see how I feel once Xmas is over. We plan to have a very quiet NY.About my forum name : the Irish for hope is almost the same, "dóchas" but mine is made up from half my former profession (documentaliste in French) and half of Hazel, which I read recently in a novel is"an old woman's name" 😂. That did wonders for my morale 😉!!!
I'm really impressed you know how to find that little accent thing! Thanks for the explanation. All the best for your taper but it will be what it will be.
Totally agree , even Generals had the sense to stop waging war at Christmas . If you do not want to accept " defeat" , a common saying on forums , why set yourself up for it by trying to fight without the right ammunition..We are not fighting a war against a disease , and would love to get back to peace in our times during holidays and festivities, but our body , for some unexplained reason , seems to believe that it needs to fight a war against itself , we as a whole person are just the innocent victims living around the battlefield.
The medication , whatever type is taken , for whichever Autoimmune or autoinflammatory conditions you have , is like a weapon of appeasement or temporary peacemaker.
Pacing ourselves , or using these truce rules sensibly , during very active times is just the clever way to stop the yo-yoing and keep that Tinpot Dictator running havoc inside your body and taking back control again while we take our eye off the ball .
Tapering Suspension Makes Good Sense in Hard or Happy Times.
Great timing for your post , and I loved my Christmas card , better than this year's John Lewis advert, hugs x
Diagnosed Nov 2021. I would say you are not doing so bad.
Two flares within 18 months is not uncommon according to the guidelines.
Me? GCA. Starting dose 60mg, down to 20mg - 1st flare 6 months later back up to 50mg. Six months later down to 20mg and then 2nd flare back up to 40mg. Then 5 years later zero.
It will with a bit of luck settle down into a steady journey..............but you must treat yourself - as another patient told me like a 'Precious Princess'.
Think for some of us is the pressure put on us by (for me - Rheumatologist) to get off Prednisolone ASAP. My GP is happy to let me do things at my own pace but not so the Rheumatologist.
It’s all very well following the guidelines -but they seem to pick and choose what they adhere to -and some completely ignore the following under tapering - more’s the pity -
**However, there is no consistent evidence for an ideal steroid regimen suitable for all patients.
Therefore, the approach to treatment must be flexible and tailored to the individual as there is heterogeneity in disease course.
Some benefit from a more gradual steroid taper.
Dose adjustment may be required for disease severity, comorbidity, side effects and patient wishes.
The trouble is that the top Rheumatologists whom write the guidelines assume that their colleagues will use good sense, treat the patients as individuals, and be flexible with the taper instructions. The reality is the Rheumatologists don't, and follow the rules by rote as though their lives depend on it , rather than the poor patients they are experimenting with.In time , you do learn the way to explain in a positive, polite and practical way why you are moving down the taper more slowly , and they can't argue too hard because you can prove it is working because you haven't had so many flares and dose yoyoing between appointments.
Unfortunately, appointments are quite uncomfortable and made more stressful by the Specialist until you have the confidence and experience to argue your point , and remind them that you are both equals in your treatment , they are not the only ones in control of it.
I don't bat an eyelid now when asked what causes me the most Stress . I will happily say , " dealing with doctors and trying to get well". There is nothing that makes you feel more sick than trying to get better. Especially when you feel like you have to battle against the medical people whom are meant to be there to help you do it!
Thankfully the advice you give in your post was given to me very early in my days of pmr, and I followed it always - primarily when I was due to holiday, but also at Christmas time. Result, no flares!
I would only add, as I have said on here on more than one occasion, you need patience, patience and more patience.
Well, my wise friend, that settles it! No more reduction for me...I'm doing just fine and at 4.5mg. Am scheduled to drop to 4mg on the 20th. I think we'll see about, I see the rheumatologist on the 19th....I'll follow up with you!!💞🤶🏻
Like Jinasc says , take a Taper holiday get back on the horse after New Year when the decorations are back in the box . If you are seeing the Rheumy before Christmas it will make it even easier to do as you like , and know will work.
Jinasc how very right you are. As PMRPro would say "We are not reducing relentlessly to zero" but we act as though that is our only goal!
I was talking with my brother (who also has PMR) this morning (he lives in Wales, I am in Tasmania) and he said there was a very brief time, last year, when he managed to get to zero and stay there for a few weeks. Now he is back in Wales and madly working on a house conversion and driving himself to start work in the bitter cold every day, he can't get below 2 mgs.
The difference? For that short time he was on zero and living in a rental wih nothing much more to do than relax and go for long walks with his wife & dog everyday.
I think there are lessons to be nearnt in that and I need to be the first one to sit up and listen!!!
Hi there, thanks for your post. I've been on 7.5mg now for just over two years. I tried to taper during the summer but my body was telling me that it wasn't the right time. I live on a small complex in Cyprus, 9 of us sharing a communal pool. For almost 19 years I've been actively involved with tidying, cleaning and gardening the communal areas, including toilets and showers, as a volunteer. I was doing this when PMR struck. With the help of prednisolone, a sensible diet and a fairly quiet lifestyle, I've been able to continue BUT the stress caused by other residents unhelpful comments is not helping. So I've decided to step down from all involvement. As a result of receiving an unkind email last week my BP shot up to 206/98 and took several days to get back down to normal. Since I've made the decision I'm a lot more relaxed......
So sorry to hear what's occurred with you Pr0jection. It IS a problem when others don't understand. My friends were and are v supportive but I do think some of them do not really get it. One of my closest friends, funnily enough, developed PMR some months after me. I asked her if she realised what the pain was like when I first became ill. No, she said, I didn't but I do now. A hard lesson for her, nevertheless.
I hope you continue to feel more relaxed and enjoy the Christmas holiday.
Couldn’t agree more with your post. I have been reducing even though I know I have stressful events coming but this time decided to wait until after Christmas as it should have happened last weekend. I’be had a dreadful cold and now my asthma and back are playing up so thought “don’t do it!”. If anything I should be increasing a few days but will see how I go on my current dose (5mg). Your post has helped me to keep to my plan and reduce in the new year, thank you 🙂
Many thanks to you all. I've been trying to reduce to 5mg for the past couple of weeks doing 2 days at 6, then 1 at 5. I am getting stiffer (possibly aggravated by the pre Christmas glass or two of red wine). After reading these posts, I'll stay at 6 until life is back to normal-ish! I've panicked a bit after getting the poor bone density results but need to calm down! A question though - I function OK even with this stiffness. How much is it OK to tolerate without setting back my PMR ?Happy Christmas to you all ❤
Apologies for somewhat flippant reply. An attempt to be lighthearted! Caring for 100 year mum, heart damaged partner and autistic son doesn't produce many lighthearted moments. You were right to amend, would have been very upset if any had taken me seriously xx
So sorry to hear you have so many essential caring duties. It must make looking after yourself even harder and require even more guesswork (or self diagnosis) trying to calculate where the stress is coming from that can have such an effect on us. It must seem impossible at times. I completely get it and hope that you get a lot of help especially when you are not at your best yourself. Laughter is a great way of temporarily forgetting your own difficulties so any opportunity for laughter should be welcomed.
Wishing you and your family a great Christmas free from stress and packed with happy memories.
Hi Steve, thank you, reply much appreciated. Sometimes I wonder if I bring it on myself! Thought it might be good to join a support group, nearest one not meeting at the moment due to lack of administrator - I could do that - then common sense clicked in! NO more commitments - see what I mean? Possibly my own worst enemy!!
I suppose we want to be at our best for special occasions,ie fit,well and happy,free of medication and I’ll health! Paradoxically better to be effectively medicated and relatively well.
Exactly. being at your best doesn't mean being free of medication . More often , for people with long term chronic illnesses , not just PMR , the only way to be at your best is by using medication wisely.You wouldn't expect a person with Diabetes , Asthma or Arthritis to be drug free while taking part in festivities. In fact they'd be jolly ill if they tried. There is no difference for someone with a chronic illness like PMR while it is still active to those with life long illnesses with similar triggers .
I've stayed on 5mg Pred for the last year. Entirely my decision as I had two major surgeries scheduled (hips) quite close together and knew I could only deal with one thing at a time. At 5 mg I am stable with no PMR symptoms or adrenals. Six weeks after last op.I feel ready to start a slow taper but will wait until Christmas is over, maybe until there's signs of Spring. Feeling well, being positive, managing sensibly, are top priorities for me.
I am still struggling back at the dose i was on when my Doctor decided to experiment with me. Christmas will be easy, I've made it so, but I am juggling quite a bit at the moment with logistics for our big trip next year and several projects planned for before that.
It never occurs to me to increase to deal with stress or illness and I plod on.
Most days no I am in constant pain and find myself running out of spoons x 3 per day.
So, tomorrow I'll increase to 10mg per day until after Christmas and then head back down to 8mg in time for my Rheumy appt at the end of Jan.
I wish everyone a pain free, fatigue free, stress free and peaceful Xmas.
I reduced to 0.5mg every 2 days for a while early in the year. I thought that I was managing fairly well, although I noticed that I was taking 2 doses of paracetamol daily, in addition to my nightly cocodamol dose. I became concerned about my regular paracetamol intake, so decided to have a word with my GP in August, to ask whether pred was better than all the regular paracetamol. Her advice was to return to 1mg pred and stay there for a long while. So I did, and I felt much better without taking the paracetamol. So the autumn saw the covid and flu vaccinations which I took separately this year because of the reactions. I was rough afterwards, but I always am, and I continued the 1mg. Now Christmas, so still no taper! Maybe in the New Year.
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I am scared of what I think I have to do.
Chronic stress and tapering, stuck and scared to taper
CHRISTMAS ISN'T FOR SISSIES 
