I am sitting here feeling very weak and emotional, I think due to my recent and ongoing drop to 7.5mg. Iām in week 2 of a three week taper from 8mg to 7.5mg.
Butā¦.as well as the deadly fatigue, I also have some pain issues. Iām trying to sort out whether they are PMR related, or due to something else.
Two days ago, despite exhaustion, I happily dragged myself to a concert with my husband. We went by taxi so I really only had to walk a few hundred yards here and there. The church venue had comfortable seats and background heating. Butā¦.after about an hour, I felt a terrific, painful burning sensation from my right shoulder, down my arm, to my wrist and fingers. I realised too late that at home I have an armrest, here there was none. When I got home, I just about managed to pen the front door but struggled a bit turning the key (even though I have a wing adapter on it).
since then, the pain is less, but I am still very stiff, especially in wrist and shoulder. Itās hard to drink from a cup, hold a fork, butter breadā¦..as as for folding laundry etc! Just not on.
I know I have osteoarthritis, so it could be that, exacerbated by the different seating position on Wednesday at the concert. On the other hand, could I be risking a PMR flare as a result of my ongoing reduction to 7.5?
I have a physio appointment in two weeks time, and also a GP telephone appointment, but if it is a flare, it could have got out of control by thenā¦.
What do you think?Should I just wrap myself in cotton wool and sit it outā¦.or go back up to 8mgā¦.or even a bit higher for a few days? I really donāt want to endanger the progress Iāve made and I felt fine on 8mg.
Thanks in advance for any suggestions š
Nextoneplease xx
Written by
Nextoneplease
To view profiles and participate in discussions please or .
it might be wise to abandon the taper for the moment and return to 8mgā¦ that may well be enough to stop things getting worse. You will know within 5-7 days, so reappraise the situation then, unless it gets considerably worse in the meantime. If it does, then you may need to treat as a flare, but come back and report and we can advise accordingly.
If itās not PMR, have you tried painkillers - either oral or in topical form?
Painkillers help a little with pain, but not with stiffness and immobility. Iāve used ibuprofen gel, paracetamol and cocodamol.
I will do as you suggest and stay at 8mg for now, disappointing as that is. I have a car trip of 90 mins tomorrow to see a cousin whoās had a stroke (I wonāt be driving but itās all more stress) and also a bit of childcare and a planned cinema trip next week, to see Tar. Phoned my choir today about the lyrics they donāt provide, and found myself getting very emotional. Need to gently put on the brakesā¦.š¤¦āāļø
If I feel better after a week do you think I should start week one of the taper again?
I would give it longer than a weekā¦ as you say much going on at the momentā¦ so apply the brakes -gently. ā¦and yes restart from week 1 when, and only when you feel up to it.
See my reply to DL above. Yes, it has felt weird, could be a mixture of sitting awkwardly, adapting to a taper, arthritis, cold weatherā¦.and lack of emotional resilience to discomfort due to adrenals not being efficientā¦?
Agree with DL and maybe think about extending your tapering schedule to more than three weeks. Possibly, try every five weeks and see how it goes, it may work out quicker in the long run.
Have abandoned the taper for a couple of weeks and as you say, may do a longer one when I restart. Althoughā¦.if the GP/ physio/ general consensus is that itās arthritis, Iām not quite sure what Iāll doā¦
Btw have sorted out lyrics for choirā¦.emailed them to my friend in Bristol who is printing them and posting to me! The things we doā¦..šxx
I thought I was having a flare a few weeks ago and increased from 5mg to 7mg for 8 days and felt good then went back to 5mg. Then the pain started again gradually becoming worse. GP advised going to 6 or even 7 for a month and then taper very very slowly again. My instinct said 7mg and now the pain is easing. Iāve been here twice before and understand how you feel. Itās a horrendous journey we are on. Take care.
Itās so difficult to judge, isnāt it? Iām on 8mg today, feeling better and will stay on this dose for at least a couple of weeks. Itās disappointing but also we canāt really relax as you can with many other meds, because weāre constantly trying to adjust the dose. Anyway onwards and upwardsā¦
I suffer terribly from shoulder and arm pain but it is definitely made worse by sitting in a draught. Was the church draughty? I drive my family mad trying to eliminate draughts!
This is interesting. Do you know what causes your shoulder and arm pain? Iām leaning to the view that mine is mainly arthritis (what kind Iām not yet sure)ā¦.and yes, it is definitely made worse by draughts. I didnāt notice that the church was particularly draughty, but it was a very cold night and there was no one sitting to my right to keep me warm! At home the design of the sofa both has an armrest and a bit of a wingback which does keep draughts offā¦.
HiI have suffered shoulder and upper arm pain for years and always put it down to overuse from computer work, gardening,four kids etc but now that I am on pred it definitely seems to help them so I wonder if I have PMR but it's never been diagnosed, only GCA. Draughts are lethal but hard to eliminate aren't they
I,too, learned that riding in a car without comfortable armrests, will surely reward me with shoulder, elbow, and upper back pain . I now travel with a pillow to support my shoulders, arms, etc. pain lasts week to 10 days. Occasionally I will take extrac5 mg pred, to head off the worst of the pain.
Think I will definitely need to pay more attention to posture, and will also see what the physio says on 15th. Meanwhile Iāve gone back up to 8mg and my shoulder and arm seem to be settling down (only minor niggles now š¤). But, my wrist has lost some mobility and my hand too - another one for the physio methinks!
Just a quick update. It seems I do need 8mg at the moment as my pain and stiffness have gradually subsided since last week. Still have the osteo pain but since PMR has settled Iām clearer on the difference between the two.
Have had a very hectic week, in A&E for ages with daughter who was thought to have gall bladder infection (but didnāt). And I managed it šSurprised myself actually. Thank goodness Iād gone up from 7.5mg, that 0.5mg made a real difference.
Will stick at 8 for a few weeks before attempting a new, slower, taper.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.