I have been holding off increasing my Prednisone once again, as I made it down to 3 mgs (January 2020) from 20 mgs (started in November of 2018) but today I woke up and I am reminded of January of 2019, sore, swollen hands and ankles and stiffness and fatigue..............tonight I am thinking of taking 1/2 mg more with my dinner as I am splitting my dose to see if that helps. In the am I take 2 mgs and tonight I will be taking 1 1/2 mgs.
Does this sound like a good plan????
Go for it musiclady. I have tried such drops 3 times before they stick. At under 5mg no point being in pain for tbe sake of 0.5mg.
Even as a newbie to this forum...GCA August 5,2019, here is the way I feel. When I started I was taking 120 mg per day with occasional IVs of 1000 mg. At this point I have been on 24 mg for two weeks and I still have 'some tolerable' discomfort...but it is not constant. I feel no need to get down to zero. I know what prednisone can do because of a long history and experience with asthma and I did get avascular necrosis....but now I want to live my days to the max that I have. I want to be as comfortable as possible, Unless there is something going on with some other organ in my body ....things and fears I am unaware of...at 80(almost) and blind in one eye.....I just want to feel good...I'm not interested in 'winning' the pred battle.
I'll see what the rheumatologist has to say this coming Tuesday....and believe me....I know each case is individual and personal. A few months ago I didn't know what planet I was on and even now I can't leave any glasses on for long pressing against my left temple....so, unless the Doctor can scare the life out of me....I'm good~!
Believe me, I'm not saying what is good for me...is good for you. We all pick our battles and accept our trade-offs. I've a dear friend who lives in New Hampshire, USA, and was diagnosed with GCA 11 years ago. She had a rough time for about 3 years and then it turned around. She got down to 1 mg of of pred daily and every few months would try to get off it...no dice. She accepted and takes her 1 mg everyday and she is a lovely, active 85 year old woman. She also has RA and PMR.
I know I have to wait and see what life deals me...but right now that is the way I feel. I wish you the very best~! Good thoughts and vibes to you..🎼🎵🎶
Maybe now just isn’t the time. You’re below 5mg so hooray! Add a bit, settle and try again. Have there been any new stresses or challenges recently?
No added stresses challenges........I will be adding 1/2 mg to 3 , so I will be at 3 1/2 mgs, maybe the 1/2 mg will help ?? Not sure what difference it will make????
What was the last dose where you were fine, no return of pain? Go back a bit higher than that. If you were fine at 3.5, go to 4 for a few days, or even 5. It's safe to go up by as much as 5 mg and still drop back down in a week to where you were (or a bit higher of course). I was like you, reluctant to go up enough to deal with a flare, and ended up taking months to get things under control again. Fortunately I never had to go up very much, but I'd have been better off going up by 5 mg when I knew there was a problem then settling back down at 2 again (I'd been at 1.5), rather than ending up spending months and eventually fine at 2.5 for many more months. In the long run by delaying a sufficient increase I took quite a bit more pred than I would have otherwise.
(More than two years later now tapering again using DSNS by doing each .5 mg step twice I have got down to .5 mg and intend to keep on using this method with zero as the "new dose" should all be fine after a couple of weeks wait. It means it takes about three months to taper by .5 mg.)
If it works yes - but you may need a few days at least on a considerably higher dose to clear out the accumulated inflammation - see Heron's reply.
It is worth a try. Do you think Osteoarthritis has joined the party? Mine is pinging with pain in the damp cold weather.
Funny you'd say that I was wondering if it was something else??? How do you find out if osteoarthristis, a visit to the Rheumy??? I go back middle of February ?? I have upped my prednisone to 4 mg as of today and will try for one week.
I have had a number of X Rays. My knees are shot, I have Cervical Spondylosis in my neck and upper spine, Osteoarthritis in my lower spine and a couple of swollen fingers and stiff hands. Basically, I am a crock. However, I have only really been troubled with pain ( apart from the neck due to poor posture on the computer at work) since PMR. I suspect it makes everything more tender. Some people with similar X Ray results get no pain at all. Of course I am 4 years older and for the last two years I have been much more sedentary with no childcare duties and the joy and motivation that came with them.
My lovely Rheumatologist is very thorough. I have had X Rays, CT scans, MRI Scan and a Pet Scan. I light up at night.
There you are then. Scattering shadow right left and centre - physically and metaphorically! Go girl! 🌺
Wondered what that strange glow was Jane. Lol. X
Arthritis is a roaring beast! I can hardly move at the moment (Polyarthritis - 7 areas)😬. I'll be soooo glad when this cold damp weather is over. Roll on Spring!🌱🌿🌾🌻
Hi Musiclady
I’m not a Fan of splitting the dose but everyone is different & what works for some doesn’t for others.
However, if you are already down to 3mg splitting the dose by 2/1ratio l can’t really see how you are getting the best out of either dose.
You are at such a low dose now, l’d actually suspect you’ve over shot the best dose for you at this time. I’d be inclined to go back to 5mg in one dose in the morning for a week, see how it goes, if you improve significantly, then come back to us to discuss reducing from there.
Increasing by 0.5mg when you are in pain, stiffness & suffering fatigue isn’t going to touch the sides but see what others think.
Kind Regards
MrsN
Well I decided to up to 4 mg ?? Hope that is enough ?
Let’s hope so, if not give 5mg for a few days at least, even a week & you can drop down again if you wish.
You probably needs a bit of a boost.
Hope you feel better soon 🌷🌷🌷
As I think back I felt okay at Christmas and I was at 4 mg but I do understand your sense of going over to cover the inflammation. Thank you so much!
That’s where I am languishing (4mgs) at the moment. I was just about to go down by 0.5mgs when I was diagnosed with a painful sinus infection, headaches, a streaming eye and blocked nose. I am on Amoxicillin for 2 weeks. I had been advised to increase to 10 mgs if I got an acute infection, ( Adrenals) so I went up by 5 mgs. At first I felt so much better, then my mood got a bit evil and I began having the voracious appetite, so I stopped again, much to the relief of my OH.
Wish I could get lower than 12.5 still feel uncomfortable on that. You mention evil mood which I haven’t seen mentioned before. is it a side affect. That is me! Pity OH.
It can be a side effect of pred - but I can promise you from personal experience that it is also a side effect of PMR, especially PMR that is flaring or the inflammation is not quite under control!!!!
Constant pain is not conducive to a serene mood but this was Pred, immediate and horrible. I am back to my moaning, martyred self.
If 3mg is enough to manage the inflammation - and it is for many people towards the end of the journey - but the effect doesn't last the full 24 hours then splitting might well help that person. The splitting thing is something that is quite personal - those of us who don't need it may feel it isn't a good idea but if it helps it is another thing altogether. Like steroid sparers ...
It took me and of course my general doctor minimum 3 times to diminish prednisone.since january 2019.....everytime it went down to 2 or 3 mg... inflamation got back...it is very important to lower the prednisone very very very slowly......I hope it will work for you...
Hi. I would definitely take it. I have done that myself this past week.
I briefly tried splitting dose, taking an extra 1mg at night in the hope it would stop the burning pain in my calves at 3 every morning, it did help but the strange dreams were a nightmare so I’ve stopped , after almost 3 years I was down to 2mg but a mini flare made me go back to 5mg for 6weeks now trying 4mg for a month or so before reducing again
I had to split my dose all the way down to 2mg, which i'm trying (not always successfully) at present. soemtimes I will take another 1/2mg or even another 1mg on a tough day in the afternoon, but more often than not now I cope with just 2mg. I'm waiting for a syncathen test as I've been stuck here for a while and my new rheumatologist suggested it without any prompting from me (as wellas PMRPro). Some folk always need 3 mg or so. But I feel after 9 mths or so around the 3mg I'm getting better! So maybe my adrenals are kicking in a bit, or spluttering.
Some of us need to split the dose. One reason maybe we are fast metabolizers of prednisone maybe, This may even be genetic when they find out what genes it is! I read in my gene test that I am slow at aspirin, which means I can get away probably with only 100mg or 200mg while others need 300mg (not PMR related). Studies can't decide whether 300mg or 100mg is better as my neurosurgeon said.. and its probably as some are faster metabolizers of aspirin than others. Some of my other drug reactions were explained as well..don't think prednisone was mentioned thogh. So others who are slow metaboliers would cope with daily, and would have no idea of how those who are fastmetabolisers would feel or how they feel it wears off. Most last almost a day (normal metabolisers ) and wake up a "bit"(various degrees here and said with the usual British understatement) stiff and sore in the morning only.
PS I have no idea of what I wrote above, Its only an hypothesis, but it does fit what happens. I also cannot seem to split the 2mg..I just can't "wake up" until after 2mg gets absorbed in the morning..not to mention the hip pain.
We are all quite individual in our response to these changes, you can only try approaches and see.
Thank you, totally individual and I guess we try to see what works???
Hi Musiclady18,
I am absolutely at the same spot☹️. I was diagnosed with PMR in December 2017 and went from 20 mg to 3.5 mg now with one major flare in January 2019. I've been on 3.5 for a month and when I lower it to 3.25 I had a flare. So I took 6.5 mg for 2 days and now back on 3.5. At the moment the pain is under control. I have also always divided my dose in half evening half morning. I have 2 mg in the evening and 1.5 in the morning. So my suggestion that you take higher dose for several days and go back to your comfortable dose. Good luck!
Thank you for your words of advice! Yesterday I tried 4 mgs and will continue on, not sure that 1 mg will make a difference???
I don't know if 1 mg will help . But as you see I got flare this time when I decreased my dose only by 0.25 mg. So 1 mg definitely matters :-). But I was advised that during flare it is best to take +5 mg to your dose for 2-3 days and then go back to your comfortable dose. I worked for me last time. I do not know yet it it will work this time as I took increased dose for 2 days and went back to 3.5 mg only today. So far I feel ok. But we'll see how it will be tomorrow..
It depends - 1mg can make a massive difference - but not immeidately apparent if you have allowed inflammation to build up before going back to it. Sometimes you need a few days at perhaps 5mg above the dose where you flared and then drop back to the dose that last worked..
Hi Musiclady18,
How are you doing?
Well I have found my body is not as much in ache mode as it had been for the last couple of weeks..............my sore ankle, hands, wrists seem to be better, I am wondering if I should go up 1 more mg just to cover it all so I feel great or just stay where I am feeling okay??? After reading so many wonderful words of advice not sure if tonight I will up my pred to 3 mg and take 2 mg in the am. My understanding is to take 4 or 5 mg for 1 week I then go back to the 4 mg which is where I was feeling okay! No aches ? Thank you so much for checking back with me Inika
I fear I might have made a mistake with yo-going dose at a very early stage of treatment and would value your opinion.
Should I try the 5 mg of prednisone increase for few days
Should I go back on 1 or 2 mg prednisone due to fatigue?
3 & 1/2 years with PMR and still on 15 mg. prednisone
What studies are available to show a link between untreated PMR and the development of GCA?
