How long to stay at higher dose of prednisone after a flare?

Hello, Eileen, in the beginning I started at 20 mg. Started to reduce after a month and knowing what I know now I shouldn't have. I did way too much within that month and PMR raised its head! Doc suggested reducing to 17.5 so I did. Had pain and stiffness return even more so doc upped me to 40 mg for 2 days then 20 mg for a few days then 17.5. My system was reeling from PMR and the pred yo yo-ing. Have found out I have gobs of side effects from the prednisone and am VERY sensitive to any changes. Think 2.5 mg is too much for me to drop at one time even from 20. After I got to 15 mg I Started to drop 1 mg at a time. Stayed at 14 mg for 7 weeks then dropped to 13 mg and prior to that I probably started a flare up and wasn't sure. Anyway...it was a flare and just started over at 20 mg. Has made a huge difference but felt I needed to go up even more and upped dosage to 21 mg after 3 days at 20. Tia is my second day at 21 mg. My doc had wanted me to drop to 17.5 after 3 days at 20 then drop to 17.5 after 3 days then drop to 15 mg after 3 days! That's not what I am going to do. Will do what you suggest, Eileen, and stick at 20 mg for at least 4 weeks/and until pain and stiffness is gone. Then I think I will only drop 1 mg at a time. Thanks for helping me learn how to handle PMR appropriately. I would be so lost without this forum. Hugs to all. Linda

Yes. I think 1mg at a time is a very good idea! Hope your doctor will prescribe appropriately and not feel huffed. It is simply unfair to the human body to shoot up and down with doses - but I doubt the 21mg is making much difference from 20mg, all it is doing is giving you one more mg to reduce later.

Don't be impatient - for some people it can take a few weeks to feel as good as it's going to get. Nor can you expect 100% relief from pain - 70% at least is what you are looking for and that is for the muscle pain and the stiffness really. If you are unlucky enough to have synovitis (joints) or tendonitis/bursitis then it can take a few months for it to fade but it is still OK to start on a slow reduction. That is simply because joints and tendons don't have their own blood supply so the pred gets to them at lower levels and it takes longer for the inflammation to fade. 

If you are going to do 1mg reductions then there is probably no need to stay at 20mg for a full month, 3 weeks will probably be enough and if you do choose to use the dead slow technique of dropping the dose which spreads the amount you are dropping over a month then there is also less need to stick at each dose for a mnth to make sure it still works. Some of the pain and discomfort you felt could well have been steroid withdrawal. That's all explained in the description of the dead slow and nearly stop reduction in the replies part of this thread:

https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

Thanks so much, Eileen.  Couldn't find the dead slow and nearly stop reduction but the moderator sent me the two reduction plans devised by patients.  Would love to also have the dead slow one.  Appreciatively, Linda

If you click on that link I gave you above you get to a thread with the first post being a whole load of links to useful info. All worth reading when you have time!

Scroll down to the bottom of that list in the post and you will see the reply box. Immediately after that is my post with the heading "Reducing pred: dead slow and nearly stop"

It is almost certainly one of the two the moderator sent you - I am a patient and I devised this reduction scheme. It is now about to be used in a research project on managing PMR.

I got it.  I must be very dense!!  You are the BEST!!  Thanks ever so much!  L

Hi Eileen,

I noticed your comment in the thread above about tendonitis, which I got on the inside of my knee (after too much cycing, I suspect). This got quite bad at night. My GP suggested anti-inflamitary patches and Voltaren and I think these helped. Recently I woke up in the night with a sore big toe joint and I could not walk very easily the next night. I used voltaren and the patch on the toe and the pain went away over night. You have previously warned my about using ibroprufin but I was wondering how you felt about using anti-inflamitary creams etc on the scin, since you said that the prednisone cannot get there easily. I am slowly reducing my dose (down to 14mg a couple of days ago - a bit stiff in legs and hips in the morning). If and when I get a flare up (which I know is more or less inevitable) how much should I increase the dose? I am presuming the more I increase that means more to come down from again.

Thanks

Hugh

There are experts who feel that topical forms of NSAIDs also should not be used alongside pred. It is absorbed through the skin and gets into the blood. Some experts think it is not only the presence of pred and NSAID in the stomach that can cause gastric problems but also their presence in the blood. I'd have thought the direct gastric irritation was by far the more significant - but I'm not that sort of expert.

It isn't more or less inevitable that you deveop a flare of PMR - flares are mostly caused by reducing too fast or too far so if you reduce slowly enough then you should avoid that sort of flare. On the other hand - by reducing in 1mg steps, preferably using the "Dead slow and nearly stop" approach, you should realise very quickly that the dose is too low and allowing the symptoms to return - in which case you don't reduce any further but go back to the last dose at which you were fine without any delay. 

If you are stiff in the mornings then try either taking the dose much earlier - waking early and taking it with a sandwich or yoghourt and a drink you took to bed with you is one approach that has worked for many people. Then you settle down for another hour or two before getting up - and the pred has had time to do its job. Another option is to split the dose - pred has an antiinflammatory action that lasts for 12 to 36 hours. If you are towards the 12 hour end the effect won't last for the full 24 hours. A way of getting round that is to take about 2/3 of the total dose in the morning and the rest in the evening. Pred keeps some people awake but a small amount in the evening rarely seems to affect that - it may be as little as a couple of mg that is needed to avoid the morning stiffness. The optimum time to take pred to avoid the morning stiffness is 2am - it is then absorbed and at its peak level in the blood early enough to be there when the cytokines that cause the pain and stiffness are shed in the body at about 4.30am. Result - the pain and stiffness never develop at all. Of course, not everyone wants to wake in the middle of the night - though I do know a few people who have tried it and it worked very well for them.

Hi Eileen,

In an earlier discussion, several months ago  you suggested taking my prednisone early in the morning and then going back to sleep.  This made a significant difference, but I was a bit concerned about risks to my stomach (I wasn't taking any food) so I stopped doing that a few days ago and waited until breakfast to take my meds. However, I think that was a mistake as I have had a return to some stiffness in the mornings. Since I have had no symptoms of any stomach problems (and I have had this in the past - pre PMR and had to take a PPI, so I know what stomach problems feel like) I have gone back to my 6.00am routine. My increased stiffness may also be because I have recently dropped to 14mg. You said that I should realise very quickly if my symtoms are returning and then increase the dose again to stabalise things. What I am not sure is if I am best to stay on 14mg and have some symtoms, which are really quite tolerable and disappear reasonably quickly, or to increase the dose to say 15 or 16mg where I had pretty much no symtoms and wait on that dose for a few weeks before trying to come down again.

For me, there seems to be not particular correlation between exercise and symtoms. I had a big day on the hill recently and was fine afterwards. I guess I am very lucky in that respect.

On another matter, my doctor friend in the UK, who has given me good advice (much in line with yours) so far, told me that because of the prednisone my immune system will be quite weak and if I get an infection I should see my GP because I am likely to get more sick and than pre - PMR days. I guess there might be a greater need for antibiotics. I have noticed that I bruise and cut much more easily these days and these cuts tend to get infected easily and take a long time to heal. I've not seen much about this kind of risk on the forum, but that might be because I have just not seen this.

It has all been discussed at some point believe me - you just missed being part of it!

We always suggest taking a sandwich or yoghourt and a drink to bed with you so you have something to take with the pred if it is something that poses a problem to you - not everyone does have a problem. 

If the only pain/stiffness you have is in the early morning and then it goes away then that is more a sign that the antiinflammatory effect doesn't quite last 24 hours for you - it lasts between 12 and 36 hours depending on the person - than that the dose is allowing a flare. I was lucky - it was a generous 36 hours and I could even manage to take double pred doses on alternate days but I suspect it is easier for me to reduce to a low dose taking it daily as I do again now. Fourteen mg is still a relatively high dose so I wouldn't have thought adding 1mg should make much difference. If the return of morning stiffness becomes a real problem then it may be that splitting the dose, about 2/3 in the morning and the rest in the evening achieves better control without raising the total dose.

Infections - doctors seem more concerned about that than the patients at the sharp end! That may well be the case at high doses but many of us with PMR who are on moderate doses find we have FEWER colds etc when taking pred than we had before. If you develop pneumonia that is a different matter of course but for the normal run of the mill stuff we really haven't heard of many people having problems - and that is over 6 years on 3 different forums. Since most infections are viral there isn't some lot a doctor can do unless it is serious enough to require antivirals. If you didn't have chicken pox as a child then if you are in contact with anyone with it you do need to go to the doctor and quickly - there you do need oral antiviral medication to try to prevent you developing chicken pox. If you did have it as a child you shouldn't get it (I am not going to say WON'T, anything is possible) so then just be vigilant and watch out for symptoms of it and head to the doctor if anything appears - ER/A&E if it is the weekend, the antivirals must be given within 48 hours of symptoms appearing). The same applies to shingles - if any signs of that appear, straight to the doctor for the same reason. The antivirals shorten the period of the illness.

With your cuts/abrasions, wear protective long sleeves/trousers if appropriate. Clean such cuts and cover them with a light dressing - they shouldn't get infected if you are scrupulously hygienic about them. Is there really infection or are you mistaking the slightly prolonged healing process with granulation of the scar for infection?

Thanks for (as usual ) prompt and full reply. Morning stiffness is not really a problem at the moment. Certainly nothing like when I first  got PMR. Many of my friends suffer from morning stiffness and they don't have PMR, so it's quite hard to judge what is due to PMR and what might be normal, especially after exercise. As I've seen on this forum, one can end up blaming every little ache and pain on PMR when they may just be part of

growing older. My doctor friend in England told me that if I stopped doing

any exercise I would stiffen up like a board even if I didn't have PMR, so I must keep moving, but not overdo it. Not always an easy balance to achieve. Your comments on infections are encouraging. As you say I need to be more careful about cuts and cleaning them up afterwards. I've always a been someone who heals easily, which is fortunate given you activities such as mountain biking and climbing etc. I have 10,5, and 1mg pills so it's easy to set up dose. By splitting a 5mg pill I can next go down to 13.5 over the next month or so using your slow method. I've come up with some rather strange raised spots on one shoulder which I guess are also prednisone related - I'll ask my GP about them when I see him next. 

Keratoses maybe? Pred makes you more liable to sun damage and they are due to that. Mine have slowly disappeared again as the dose has reduced.

Hi Eilleen,

Is it best to be on a lower dose of pred and accept some stiffness or go up to a higher dose and have none? When I was on 15mg I had almost no stiffness. I have been reducing half a mg every two weeks and am now down to 13.5mg and am a bit stiff for the first few hours in the morning - nothing I can't cope with. I am wondering whether to just stick at this dose for quite a while and see if my body copes better or (reluctantly) go back up to 14 or 15. I haven't tried splitting the dose yet, which you suggested and maybe this would be a better way to do it. It seems if everyone is different, in terms of long-term dose they need to keep the disease in remission and how they react to reductions but I guess you have as good an overal idea as anyone.

Thanks

Hugh

It isn't advisable to stay too high for too long for obvious reasons. How early in the morning do you take your pred? The lower doses may not be lasting the entire 24 hours - so having that stiffness overnight would be preferable. Many take their dose in the very early morning with a drink of water/milk/a yoghourt/sandwich (delete as applicable) they took to bed with them and then settle down for another couple of hours by which time the pred has done its work. Some others found using an electric blanket before getting out of bed helped get moving, or a warm shower with some gentle stretches. Once you get moving and the blood flow increases the muscles are less stiff and it is an upward spiral.

By the way, don't misunderstand: you aren't keeping the DISEASE in remission with the pred, the autoimmune disorder is still active, the pred is managing the symptoms while you wait for the autoimmune bit to go into remission. Doctors say "drug induced remission" but it isn't really.

I would also try either staying at each dose for a month or use the "Dead slow and nearly stop" approach - it could just be your body isn't adjusting to the new dose in the time and then you change it yet again before you get there.

Hi Eileen,

I take my pred at about 6.00 in the morning. I don't set an alarm - I just seem to wake up about then, take the pred and then go back to sleep for a couple of hours. Fortunately I'm not at work at the moment, so don't have to get up before the drugs have had a couple of hours to start working. An insurance lady who would like me back at work suggested I wake up at 4.00 in the morning so that I could be ready for work earlier in the morning.

Following your advice I took 1mg last night to combat morning sickness. I know that's not very much but it seemed to work and I feel good this morning. I guess I could take more at night to see if I keeps me awake but if 1mg works I'll stick at that for a while. 

Hugh

The cheek of the woman! Hope she develops a dose of something to find out what it is like! Not usually vindictive but... 

If 1mg works - why take more?