Having gradually tapered down to 8mg over about 18 months I seem to be having increased symtoms. Not a flare up but pain here and there. First of all I was having problems with my hands, being stiff and painful in the morning and so I gradually increased back up to 12mg and then down again and am currently on 10mg. My shoulders are not great and are worse at night. To deal with this I split the dose, taking 3mg before going to sleep and 7mg at about 5.00am in the morning. This hasn't worked and I am wondering whether to split the dose more in favour of the evening, or whether to increase the dose again. I am also having problems with my back which my ostiopath says he thinks are do to with PMR because the pain is caused by inflamation (confirmed by MRI). I can only stand for a few minutes, athough sitting down is OK, even on a bike! So, I don't know whether to go back to quite a high dose and really try and knock these problems on the head but am worried that if I do this, whether it works or not, I then have to taper all over again, which will be a real bore, especially if it does not work.
That's right! The tapering is the key!
If there is pain though the situation is different regarding the action of the medications we take to get a reasonably good night rest.
To exchange experiences is important anyway because we learn as we do so and the Forums are great for that.
I've always split my dose evenly when I was at the 10 mg dosage; 5 mg in the a.m. and 5 mg in the p.m. You might want to try that first before going up in dosage. Or you could try 4 mg in the a.m. and 6 mg in the p.m. I think you should also stay in communication with your doctor to let him know what you are doing.
My will to help is so strong!
It makes me want to add something else.
Wish you will find a satisfying way to get some sleep at least.
Although I think it is more traditional to have the larger dose in the morning and the smaller one in the evening when splitting unevenly?
Hi Hugh,
Sorry to hear you are having pain again.
I am also having the exact back problems you have and was wonderfing if it does go when you decrease the Preds ? .. RE: ( I am also having problems with my back which my ostiopath says he thinks are do to with PMR because the pain is caused by inflamation (confirmed by MRI). I can only stand for a few minutes, athough sitting down is OK, )
I am on 35mg a day at the moment and my back is Chronic pain when it hiits me, I sit for a few minutes and it goes, then I stand again for 10 mins or walk and its back, so I sit again to help get rid of the spasms :
Is this the same as you? and did your pain go on a lower does of Preds:
Cheers
Hi, Hugh
Sorry you are hurting. Do not assume that it is PMR. Because you have PMR doesn't mean you don't have other problems simultaneously. Because pred can cause osteoporosis etc. you could have a disc problem that no one is even considering. I'd be asking my doc about this. I can only tell you that I have found that the adaptation to titrating down creates its own pain so it makes it difficult to know what is causing it. Stay on the lowest dose you can that your doc agrees with. I developed adrenal insufficiency from being on a moderate dose for 18 months and now have even bigger problems and we can't get my dose down due to adrenals not functioning. Try to get your dose down but slowly is key. I also found that frozen dark cherries really help. I have a cup each day and it allows me to feel lees pain. Hang in there.
First of all, you aren't heading relentlessly for zero - you are looking for the lowest dose that manages your symptoms at the present time. It doesn't mean you won't get lower, it just means not yet. Whatever the activity of the underlying autoimmune disorder you need enough pred for that. Maybe you have got there for now.
However - given your osteopath's comment I'd wonder if what you are experiencing is the effects of myofascial pain syndrome which is often found alongside PMR. It is caused by the same cytokines, inflammatory substances, but they are localised in trigger points which are found in pairs alongside the sine, in shoulder muscles, about rib level and in the lower back. They can cause muscle spasms that cause pain in themselves but also irritate/pinch nerves nearby and that leads to referred pain where the nerves supply. It is often improved at higher dose pred (eliminates some of the cytokine effect) but then returns as you reduce the dose. Your symptoms are very similar to what I had with it and it was sorted out using local steroid injections and a technique called needling as well as manual mobilisation of the trigger points. I, too, couldn't stand or walk for more than a few minutes and a local orthopaedic specialist identified it as wear and tear effects in the lower spine that I'd have to live with. It wasn't, it was purely muscular in origin and for the last 3 years I've had no problems at all. I'm having niggles again but nothing compared to what they used to be. If it were me I'd ask your osteopath about it and whether he does manual mobilisation or knows someone who does.
As for splitting your dose - the only way to find the best answer is to experiment with times and amounts. Everyone is different so what works for someone else may not work for you.
If you reduce in very small steps and very slowly then if your adrenals are going to function again they will eventually adjust - that's the view of the Head of Medicine at the local hospital. It also reduces the discomfort of each reduction step - and is to be found in this forum as the "Dead slow and nearly stop" approach.
You don't say what dose you are on - but if your adrenal glands aren't functioning then the "cure" is replacement therapy with a pred dose of 5-10mg (it varies from person to person). So you won't ever get your pred dose to zero for that reason alone.
One recommendation for us at a lower dose of pred(about 5mg or so) is to switch to hydrocortisone which is felt by endocrinologists to be more likely to encourage the adrenal function to restart.
Eileen,
i was on 5.5 mg prednisolone and cut to 5mg. Terrible pain and stiffness. Having trouble getting off sofa or doing anything. Cortisol is 5 from lab work so endo said I have a little bit of adrenal function. Please explain the titration u think might work, thanks.
jeannae
im so depressed with how I feel.
I would say then that your long term dose is going to be 5.5mg - 5mg is simply not quite enough to manage the inflammation. It doesn't matter how you try to reduce the dose - if you get to that magic dose and try to go lower - you'll will get symptoms again. It's as simple as that.
Thanks, Eileen. I did better at 5.5 but they wanted to lower it because I keep getting superbug uti's that are potentially life threatening. I'm between a rock and a hard place.
Thanks Eileen for (as usual) writing such full replies. My gut feeling all along is that my problem is not a usual back problem and my osteopath agrees as he says he would usually have sorted it by now. Also, I feel the pain is muscular. My next step is to see a back specialist and see what comes up. I was expecting local steroid injections but I gather these have to be done pretty carefully with expertise. Who and how were your injections done? What is needling?
From what you say, it seems I do need to increase my dose. At higher doses I was almost pain free apart from various joints like knees and hands causing problems from time to time. I will ask my ostiopath about the manual mobilisation. He is very sympathetic and determined to try and help me. He is as keen as I am to try and find out what is wrong.
I was going to suggest it might be worth trying steroid sparers (methotrexate etc) but they are also going to reduce your immune sytem so really not that different. There are small pilot studies using tocilizumab for PMR that are looking good. It's VERY expensive - but if the problem is superbug UTIs and life threatening - maybe they would justify it??? It's worth asking. Where are you? UK or the USA?
Hugh:
Huh???? Yes, JOINT steroid shots have to be done with expertise - the sort I was given for myofascial pain syndrome were intramuscular and done by the pain clinic in our local hospital ( a bit different from the UK it must be said!).
I'm less enthusiastic about a "back specialist" - they really don't seem to be very good at muscles! If he doesn't do it, can your osteopath not suggest another "complementary" practitioner who does myofascial release or something similar? Quite a few of us have benefitted from Bowen therapy so that might be worth a trial.
My ostiopath said to me today that from what he can see and feel there is nothing wrong with the mechanics of my back. This and the fact that the MRI shows inflammation makes him think it is the PMR either causing the pain or exacerbating it. There is also the possibility that it might be myofascial pain (see Eileen's reply further on in this thread). Hopefully the back specialist I am seeing soon might be able to shed some light on this.
I forgot to mention that I was using dead slow and nearly stopped method and had got down to 8mg. Because of problems with my hands I gradually went up to 12 and then started coming down again. Maybe too fast but I guess that because I had been down to 8mg i could gent down there again. I think that I am quite a drug resistant person. At the beginning of all of this, even at 25mg and higher I could hardly walk in the mornings. When I was at about 12 last April I felt pretty good - even completed a week of ski-touring in Norway! That would be impossible now.
I was stuck at 2 mg and couldn't seem to go any lower. However, I kept trying after staying on 2 mg for about 3 weeks. I am now going on 2 weeks at 1 3/4 mg. I keep praying I won't have a flare up. So far, so good. As you can see my drop was significantly low, but if that's what it takes, that's the way I will proceed. I'll stay at this dose for at least another week before tapering to 1 1/2 mg/day.
I'm in US. Thanks for the info and support.
Was your pain severe when you tapered, even though it was very slow? I don't know if I can face another day like this.