Hello. I have just joined after reading the excellent book by Kate Gilbert about PMR and GCA. After several months of assuming I had aches, pains and stiffness due to work and family stress and too much heavy gardening, I was diagnosed as having PMR in Nov 2019 and prescribed 15mg Prednisolone daily. (My mother had PMR in her sixities too). All symptoms disappeared within 24 hours. I followed the tapering advice from GP and got down to 7mg with hardly any sign of symptoms (just the odd ache on the first and second day after dropping a level). From 7mg (in May 2020) to 5mg which I am on now, has not been symptom free and once, on the advice of my GP I went back up from 6mg to 7mg for about 3 weeks. None of the symptoms have been acute, and have almost ( if not totally) disappeared by the end of the morning or early afternoon. Now on 5mg I have increased morning aches and stiffness which are concerning but not debilitating. I can live with them as I know the afternoon will be much better. But I continue to wonder if this is the right thing to do. Finally, one thing does bother me having read about the symptoms of GCA from Kate Gilbert's book - I have some scalp tenderness on the crown of my head when it is touched or when my hair is combed. Some days more than others. I have in fact had this in the past many years ago and it disappeared.
PMR and learning about it!: Hello. I have just... - PMRGCAuk
PMR and learning about it!
I think it is possibly fair enough as long as the symptoms are not getting worse - but if they are that is a sign the inflammation is increasing and eventually you will get back to where you were originally and needing more pred to get things under control again which is often harder second time around.
The earlier you take that dose in the morning the less work it has to do - the morning stiffness is the result of the new batch of inflammatory substances being shed in the body at about 4-4.30am. Maybe worth a try?
Thank you for your swift and informative response. Very interesting about the 4-4.30 comment. I also have to tell myself that a lifelong habit of only resorting to medication if it is really necessary is possibly not the best approach for me with PMR but to accept that I may need to monitor carefully how the symptoms are going and consider going up. Since the Covid outbreak all my GP consultations have been by phone and during one recent call it was suggested by the GP that I consider alternating days if necessary.
Oh dear - alternate day dosing is mentioned in the medical literature as NOT being helpful in PMR and definintely a no-no in GCA! That is because the inflammation is stoked up daily and the anti-inflammatory effect of pred lasts 12-36 hours. It is a rare patient who can manage 48 hours between doses without the symptoms returning and so you get into a mini-yoyo effect which is never a good idea. The use of pred in PMR is very differnt from its use elsewhere - ideal would be a way of having a constant low level of pred present which can be tapered smoothly, the smaller the reduction steps you can achieve the better.
I am so glad I joined here as all this is so helpful and supportive. (I think the way I wrote it misled you before, the GP meant alternate days such as 7mg one day 6mg the next. But I have not done that.) Beginning to think I came down too fast after 7mg. It went like this. 8mg for 1 month was fine. Then 7mg for 1 month but had some mild aches and stiffness. Then 6mg but they increased a bit more so after 10 days went back up to 7mg as agreed by GP. After 2 weeks tried 6mg again and it was better so carried on for 1 month with aches and stiffness gradually diminishing Then dropped to 5mg. Thinking I should not have gone down to 5mg
We mostly feel that at this level 1mg at a time is a bit much - the basic rule is no more than 10% of the current dose and that is way above that at 6mg. Or if you do 1mg at a time one of the slowed tapers is useful:
healthunlocked.com/pmrgcauk...
Thank you. Lots of new information and food for thought here and a new perspective for me on tapering. I will look at all those.
After reading on here and thinking this through I sent a message to my GP yesterday and told him that I had increased from 5mg to 6mg two days ago but also said that since dropping from 7mg I felt I had gone down too fast. I feel the increase to 6mg has been a slight improvement in the 2 days but I think going back up to 7mg (as Dorset Lady suggested I consider in her post) is what I would like to do. If I do that what should I expect? A week or so where my body adjusts and aches and stiffness lessen gradually? Or a more immediate improvement? Learning how to monitor what is ok to tolerate or not is my next learning curve! Thank you
P.S. Dorset Lady told me it would be better to start a new post next time so all can view, which I will do in future
One thing many experts in PMR/GCA suggest is to add 5mg to the dose where you flared for a few days and then go back to the dose you want to work from. In your case you'd take 10mg for up to a week and then drop straight back to 7mg. That extra dollop should be enough to sort it out quickly and then you can get back to your normal tapering.
There is no answer to your question - everyone is different and it depends on how much above the dose you are looking for you are: the lowest dose that manages the inflamamtion. Just adding 1mg will take longer than adding 5mg for a few days.
Well that is very encouraging. That a short term higher dose could give relief but at the same time it is in your sights to reduce it back not long after. Thank you for giving me that option to consider. It makes things seem more manageable.
Hi and welcome,
You have reduced quite quickly - but now your body is telling you that you have gone below what you actually need.
I would inclined to go back to 7mg, get things under control and then reduce by 0.5mg a time and maybe using a slower plan such as this - others are available - just look under pinned post.
healthunlocked.com/pmrgcauk...
Yiu are also around the dose where your adrenals need to think about working again, so that sometimes causes extra issues. A slower taoer will help both the PMR and the adrenal glands.
Sometime we do advise splitting dose to get through the morning, but initially I would try the increase and see if that helps.
As for scalp tenderness that CAN be a sign of GCA, but some with PMR do get it at times - does it improve on higher doses? Think it might be worth discussing with GP/Rheumy..... do you have any sight disturbances or pain in jaw when eating.?
Thank you very much for your extensive and informative reply. I will look at those slower plans. As I said in my reply above, I have a lifelong habit of only resorting to medication if it is really necessary so perhaps this is not helping me here!
In reply to your question, no I have not noticed any sight disturbances or pain in jaw when eating, and not had any severe headaches which I read about as well.
There are links to all the options here:
Know where you are coming from re medication - but there are times when it is required - and at the correct dose.
I thought some feedback would be useful. I have read all the recommended tapering plans and realise I would feel a lot happier with one of those. I have also thought a lot about the various replies to my initial post yesterday and have decided to contact my GP today to update him with my latest position and how I feel in myself that I have come down too fast from 7mg. Plus will mention the tender scalp. Thanks once again for the support. It has made me focus and take action!
I was not sure how to add to my feedback reply so I have added another reply here for a further query. I left a message for my GP and told him that I had increased from 5mg to 6mg two days ago but also said that since dropping from 7mg I felt I had gone down too fast. I feel the increase to 6mg has been a slight improvement in the 2 days but I think going back up to 7mg as you suggested is what I would like to do. If I do that what should I expect? A week or so where my body adjusts and aches and stiffness lessen gradually? Or a more immediate improvement? Learning how to monitor what is ok to tolerate or not is my next learning curve! Thank you
It really depends how quickly the increased dose gets to work on any inflammation that has built up again - you might notice a difference straight away, if you were just borderline. However, it might take a few days - sorry can’t be specific, but as the 6mg has proved to give some relief you should take that as a positive.
You can always edit your original post - but that relies on people re-reading it.
If you want to raise another point or give feedback to everyone, the best option is probably to raise another post - mentioning previous one - that way members get notified of a new post whereas they don’t get notified of an edited one. And obviously I only got notification of your reply to me - although some of us do return to posts later the same day or another day to ‘catch up’.
Thank you for both replies on health and posting. As you can guess I am concerned as I lacked a fuller understanding as I went along and that I went too low and have given myself a real set back. I am hoping that because the symptoms re-revealed are nowhere near as bad as at the beginning I can move forwards again on the correct dosage. But as I have read here a lot, it is what it is and I have to go from here.
7mg seems to be a common sticking point : this time around I’m doing the DSNS method successfully ( nearly at 6mg). Good luck.x
Thank you for that. Day 1 on here and I have learnt so much! People have been so helpful and supportive.
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