I’m 2 years into PMR and currently trying to reduce my Prednisolone from 8.5mg to 8 mg. This is my 4th attempt to get down to 8mg the last time being September 2021. I had Covid on the 30th June, had antivirals and tested negative on the 18th July. I still had a persistent dry cough and some tiredness but after 2 months on 8.5 decided that I should try to reduce to 8mg to keep my rheumatologist happy. My previous 3 reductions of .5 mg had been successful using the DSNS method. I started my reduction on the 21 July and all seemed to be going well until day 13 when I had really bad aching in my hips and shoulders. We were away on a short break in Northumberland and I think overdid the walking (3 consecutive days of 9,500 steps). Paracetamol didn’t help relieve the pain. I’m not sure whether my problems are doing too much, a flare or a combination of both. My question is now that I’m back at home and resting should I see if the aching eases or should I increase my Prednisolone and abandon this reduction and be more sensible the next time. If I increase my dose what should I go up to and for how long? Any advice would be much appreciated thank you.
Could this be a flare?: I’m 2 years into PMR and... - PMRGCAuk
Could this be a flare?
Probably all of the above ...
If you are persistently flaring at this dose it is probably your body telling you that you have arrived at your interim destination. You aren't heading relentlessly for zero but the lowest effective dose. The rheumy isn't in charge - the PMR is, whether he likes it or not.
You are still post a serious viral illness so reduction shouldn't have been even considered never mind attempted, then you went on holiday and increased your activity level - also not a good idea during a reduction.
Not sure about increasing the pred - but certainly abandon the reduction and see how the pain develops. If the pain is inflammatory, paracetamol probably won't help - not enough antiinflammatory effect. I even struggle with ibuprofen in a similar situation. I finally seem to have found something that works - another NSAID but prescription-only here in Italy and one I'd never heard of.
Thank you for your advice. I did wonder if I was being too optimistic trying a reduction so soon after Covid. I naively thought that my PMR had perhaps gone into remission as I was feeling so much better. I’m due to have shoulder surgery on 14 September (postponed from 6 July because of Covid) so I need to get myself back on track. I shouldn’t have poked the dragon🐲!! Shall I go back to 8.5 mg now each day and see if things settle down?
I would - what have you agreed with the surgeon about pred dose?
He’s happy to do it whilst I’m on 8.5mg but told me that if I could get lower that would be preferable. If all goes well I will be in as a day patient. I’m having a nerve block as opposed to a general aesthetic and booked in as one of the first operations of the day. They will give me my pred and other medications straight after the surgery.
I am concerned about coming home the same day. I’ve been told that the numbness could take 24 hours to wear off and then to expect a lot of pain! I don’t really want this surgery but I’ve been told I have a full thickness tear which will never heal by itself. The longer I leave the surgery the more likely the tendon will atrophy (I think that’s the correct word). Post surgery I have to wear a sling for a month. I’m not sure who is most worried. Me or my husband who will be looking after me😫
I hope your husband is less handless than mine was!! I'd have starved 
He’s pretty good. He cooks and helps with the housework (not the toilets🫤) and for the 51 years we have been married he’s done all the grocery shopping (he does enjoy doing it!). I’ll just have to be careful not to mention to him that you are supposed to vacuum in the corners or I may end up wearing it! Unfortunately it’s my dominant arm that’s being operated on.
He can use a vacuum? Mine couldn't even switch the darn thing on!!! As for cooking - couldn't peel a spud never mind cook it. He could manage to reheat a steak pie and out frozen chips in the fryer or grill bacon and egg. In the UK - nothing he could cope with here ...
I guess I should be very grateful 🤗. Thanks for the support and the chat. You’ve made what started out for me as a very stressful day into something much more positive 😘
Any time - it is why we are here. And if the forum is too public - there is always a PM.
This post includes info on dealing with a flare -which it sounds very much as if it could be -
OoriginalText
Hi Tiggy, I’m a person who doesn’t tolerate pain when there is relief to be had. That being said, In response to your question, I would be inclined to bump up my Pred dose to 9 mg for a few (2-3) days, then drop to 8.5. I had Covid when I was at a low dose pred (5(?)), it pretty much derailed my plans, and 10 months later, I am at 7 mg. PMR will tell you when you are at an adequate dose of prednisone, despite your rheumy’s opinion. After 9 years with PMR, I know my disorder much better than my rheumy, and will exert my experience/need profile when she makes an unreasonable directive, such as dropping . 5 Mg, when I have an active stressor event , illness, injury, child crisis, Covid. …..We need to be our own best advocate, informed and educated by the Wise Women here on this forum. (They know who they are💜). Keep asking for advice…there are no dumb questions, and answers continue to evolve as new data continues to come available. Kind Regards, Jerri
Hi Jerri, thanks for your response and support. I’ve had a better day today having stopped the reduction and rested. I’ll see how I go over the next couple of days and if necessary up my dose to 9mg as you suggest 🤗.
Hi Tiggy, I’m feeling too wordy this afternoon, so just delete this post if it annoys you….so here goes…, it seems that one of the first concerns we develop when diagnosed with PMR, is the obsession to “get off prednisone”. I know I did, and I immediately began messing with my dose, to drop .5 mg every two weeks. What happened, is that I yo-yoed my dose, had a lot of unnecessary pain resulting from pred withdrawal, and simply did not use enough medicine to manage my illness. After 9 years, and coaching by the members of this forum (you know who you are💜🙏🏽💜), I have come to accept that PMR is a chronic illness, some get better sooner, some later,…but make no mistake…PMR will remit in its own time. I currently use 7mg., small dose, but I have been as low as 2 mg. I have come to accept what is, and I’ve quit stressing. I live a pretty good life, comfortable…. and No dastardly side effects.!,, This is my story, others will tell theirs, …in time you will tell yours. But for now, take a deep breath, listen to your body, do what you need, and try to find joy and peace in each day. Kind regards, Jerri
Hi Jerri, with regards to my PMR I feel that after 2 years I have accepted that I have a chronic illness and I may be in it for the long haul. I hate all the side effects of Pred but what I struggle with most is dealing with Pred reductions. My rheumatologist wants me to be constantly trying to get to a lower dose but my body is not playing ball. Whenever I start a reduction I can feel my anxiety levels rising. I’ve had a couple of reductions where I’ve had withdrawal symptoms after a couple of days and this I can deal with by taking paracetamol. What I struggle with is dealing with a flare. It’s that awful feeling of increased aching in my upper arms and hips. I tend to panic and haven’t yet sorted out a formula to deal with it. How much do I increase my pred and for how long? I can’t ring the rheumatology helpline as twice in the past they have told me I mustn’t increase the Pred. This has resulted in even more pain and put me back to square one. I’m sure I’ll figure out what works for me eventually but I haven’t got there yet.
Our suggestion for a flare due to over-reducing the dose is to add 5mg to the dose where the flare happened for up to a week to 10 days - if the symptoms are gone in 2 days you don't need that long obviously. Then return straight to the previous good dose. This attitude of "don't increase the dose" in response to a flare of inflammation THEY caused is one of our bugbears. I know WHY they say it - but it is totally unreasonable and shows how little they understand of the actual disorder. And why the reduction steps need to be small to reduce the likelihood of it being steroid withdrawal pain which can be identical to returning PMR pain.
Thank you. It’s been 5 days now since this flare started and I’m going to have to do something about it. I complicated issues by overdoing the walking whilst away last week. I rested yesterday and stopped the reduction and felt so much better but today the aching and stiffness are back. I’ll start the 5mg increase tomorrow.
This is usually advice, but if it is a flare then your Rheumy helpline is wrong in telling not to increase - it says in guidelines that a flare requires more Pred -
healthunlocked.com/pmrgcauk...
Thank you. I haven’t contacted the Rheumy helpline on this occasion as I know what their response will be and I want to sort myself out. Their standard response is that I stay on the current dose and have ESR and CRP blood tests to check my inflammation markers. Apart from my initial diagnosis of PMR my markers are always in the normal range even when I’m flaring. They then try to persuade me to take Methotrexate which I’ve avoided so far.
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