hello ,what do you think about weaning off pred at 1 mg every two weeks..
I started off with 10 mgs for one month no pain it was a miracle…
G.P advised to reduce by 1 mg for two weeks and so far I have reached 7 mgs last night I felt that familiar stiffening and pain and was fidgety all night…I still only took 7 mgs this morning though.
Do you think that I am reducing too quickly? …. I have PMR at the moment ,but also suffer with fibromyalgia. Thanks .
Hello, the doctor can only make a suggestion for reducing. They can’t say what the activity level of your autoimmune disease is. If you go too fast, that inflammation will break through and you’ll get pain again. To be on 7mg is pretty swift compared to most and I’m not surprised if your inflammation is building up again. The miracle happened at 10mg because the dose was high enough to combat your inflammation. Don’t ignore pain and stiffness growing because that’s a sign your dose is too low and you either need to go back up a bit or slow your reduction a lot. Drops of 0.5mg will help you determine more accurately what your lowest minimum dose is. 2 weeks is the bare minimum for reducing because it can take at least that long for the inflammation to build up.
Thanks snazzy D. It looks as though I need to really understand this pred more and the way it works for me, I have a lot of side effects too… will probally go back to GP, but sounds like he is giving me the wrong advice.
Which side effects? Some are avoidable.
Headaches,diarrhoea,bad stomach pains and very irritated..
Did these start with Pred or have they crept in? If so, when? What other meds are you taking?
Yes started with pred ,but these were mentioned side effects on the leaflet. I have pain where my gall bladder used to be and head and jaw pain. Will phone my GP today ..in fact now!
Did the GP start any other medications at the same time as the pred? Many automatically hand out PPIs (stomach protection), calcium and vitD amongst others. PPIs in particular can cause those symptoms. And when you start them at the same time as pred - pred tends to get the blame!
I have Aortic stenosis and Chronic Afib so on a few different meds for that.I do have omeprazole which I take because of the pred.All in all I am fed up with my chronic conditions so depressing..
So did you start the omeprazole at the same time as the pred? If so - it may well be the problem rather than the pred, especially in the context of the diarrhoea.
I have given up thinking about the chronic problems to be honest because yes, it is a bit of a pain, and if it just means taking some tablets, that is fine. I had an ablation for the paroxysmal a/fib in early January - hasn't stopped it altogether but it is different and a lot better. I'd have another done if they offer it ...
Can you say a bit more about the jaw pain? Is it one side?
I agree with PMRPro, Pred isn’t always the culprit and it isn’t always wise just to blame it for everything. This is the trouble with side effect lists; the general ones like diarrhoea can be caused by lots of other things. PPI’s gave me a lot of gastrointestinal issues. If you are taking nothing, you could be getting gastric inflammation.
Can you describe your jaw pain? I wouldn’t be pointing my finger at Pred here as my first move. Have a look at Temporomandibular Joint dysfunction (can cause headaches & got this when my muscles were weak), Sternokleidomastoid muscle issues (can mimic GCA) and GCA itself and others.
My jaw pain is like a grinding pain comes and goes also my ears feel like they are aching at the same time.. would that be pmr?
Could not speak to anyone at the doctors surgery today either…To phone again tomorrow.
Sorry, more questions because this is important. Does it hurt when you chew and stop when the chewing stops? Can you open your mouth wide pain? Any crunchy noises when you chew? Do your ears hurt only when the jaw hurts or all the time? Are you a tooth grinder or clencher? What sort of headaches are you getting?
Is jaw affected only when you are chewing? See this test -
sydney.edu.au/news-opinion/...
Ears can be affected in GCA.
Maybe look at these re TMD-
I experienced these minus the headaches.
Re stomach problems you could try taking the tablets in and with yogurt - perhaps a few teaspoons and then dunk each tablet in a spoonful. Perhaps avoid liquid for a while so the yogurt can do its work. There are also links on the forum to coated pred which you could follow up. Some people manage without omeprazole using this method. May also help with other tablets (unless there are any prohibitions about avoiding milk products.
I must admit to not needing omeprazole until taking the pred ..only taking it occasionally when having heartburn..Will try the yoghurt…
Stomach problems can creep up on you silently so perhaps a more consistent protection plan needs to be tried. Yoghurt works for some, a really full stomach for others and some need a daily anti acid med.
hello ,what do you think about weaning off pred at 1 mg every two weeks..
Absolutely bananas.….and not recommended for PMR .
Two weeks is not long enough to know the current dose is enough to control your PMR before you reduce to lower dose… do that too many times and you risk flaring, which sounds as if is happening.
The other problem is you have difficulty in ascertaining whether 8mg was enough, if so you could go back to that… but it might have been 9mg or even as high as 10mg.
You could try 8mg initially to see if that sorts things. But usual advise for dealing with a flare is contained in this link -
healthunlocked.com/pmrgcauk...
You might also like to look at this for info -
healthunlocked.com/pmrgcauk...
I will read up on it for more info! Thanks
I would say it is far too fast. Below 10mg the recommendation is for not more than 1mg PER MONTH. It can take a few weeks for the inflammation to build up again if the dose is even slightly too low and if you are shooting on down the doses you suddenly get symptoms again and haven't a clue where it all went wrong. When you flare, it may be harder to get things under control again so by far the best approach is to do it slowly and pounce on any signs of a flare quickly before it becomes entrenched.
You aren't heading relentlessly to zero - you are looking for the lowest effective dose and that will be higher early on in the illness than it will be later. This soon, you are doing brilliantly to be (almost) down to 7mg. Don't spoil it!
I will keep To 7 mgs for a few days and see how I go. Thanks for your help.
Personally I would go for 0.5mg every four weeks, but you may be made of stronger stuff than I am!
For weeks I thought that it was my fibromyalgia…In September I had a flu jab and three days later the stiffness and pain crept all over my body,every muscle and joint..I struggled to walk,wash ,bend,do hair ,lift even the kettle..
I just carried on taking tramadol…Saw GP Jan 4th or thereabouts, one dose of 10 mgs and it was like a miracle.
I agree, I could hardly get out of bed or get dressed and after my first dose of steroids it was like magic.
My experience may be a bit closer to what you've been experiencing than some others, who were started off with slower tapers. I started at 15 mg and was on that for a month. Then my doctor told me to taper by 1 mg a week, BUT to stop tapering if I felt return of symptoms. This started when I went to 9 mg. I'd been taking pred for two months at that point. I stayed a 9 mg for longer than a week, but it was getting somewhat worse, not better. Doctor hadn't told me if I could increase my dose in this instance, and I knew nothing. In fact I thought I'd taper off in three months and be cured! However I went online in the middle of a sleepless night and asked the question of the universe. The reply came from a PMR community (not this one, which I found later) where I learned I could go back to the dose where I'd last been well. So, back to 10, stayed there about three weeks, and then started a slow taper (Dead Slow Nearly Stop as it happens). I went to my doctor and got her blessing, although I intended to taper at the slower pace anyway. This worked for me. When I got to 7 mg I started tapering by half a mg at a time, although there were some additional tweaks I made which I won't go into here. By the end of the first year I was at 3 mg. Mind you, it took another year to get to 1.5 mg, and that turned out to be too low, but I can honestly say that for several years I was at around 2 mg, with occasional efforts to taper lower, one unsuccessful flirtation with zero, one major flare where I had to go up to 10 briefly. Now I've had no pred for (checks notes) 12 days, and am hoping for the best. On the other hand, both my former doctor who diagnosed PMR and my current one have been happy to let me taper at my own pace and considered that once I was at 3 there was no concern over effects of longterm pred.
As PMRpro says, "It isn't slow if it works."
Yep, listen to the advice of these knowledgeable women. They know what they’re talking about and it will save you a lot of agony. All the best!
Hi - 10mgs is a very low starting dose and as others have said the regime your doctor suggests seems plain wrong. Starting dose needs to be enough to absolutley knock the inflamation on the head- then very slow reduction. Alternative is what you're doing which is likely to lead to a succession of flares and in the long run you'll be taking higher amount of pred.
Hello Paulus65……..maybe I should have mentioned my GP wanted me to start on 15 mgs and me being anxious about taking that amount decided to have 10 mgs to see how I felt and pain disappeared.So I just stuck to 10 mgs I did inform my GP and he was okay about. Sorry should have said.
What I think he isn't taking into consideration is that you have already "reduced" the dose by 5mg or 33%. You are already a lot closer to your objective.
I was first diagnosed in May 2021 and put on 15mg daily prednisolone. Instant relief! My GP tried to reduce me at the same rate as you and I suffered all manner of problems from anxiety to nausea to weight loss and general GI issues which to be honest have never really resolved.
I then went to rheumatologist who changed the regime and I had to reduce Img every 2 MONTHS. This took a very long time and I still had 1 flare at 3mg so back up to 5.
I then started to be even more cautious reducing by half mg the last two weeks before going down again. I ended up on half mg for 2 months, then half every other day etc.
Very slow but seemed to have worked. I have been off prednisolone now for about 4 weeks and despite muscle weakness and withdrawal symptoms I am doing ok.
I really think you should go more slowly but that's just my opinion.
Your GP was not following NICE guidelines. Please see this link cks.nice.org.uk/topics/poly.... It is a clear medical statement that 1mg dose must be taken for a minimum of 4 weeks.
I am assured by a leading PMR rheumy in the UK that NICE doesn't actually issue guidelines. They are articles compiled by a third party commisioned with writing them - they just read the literature ...
Yes I do think 1mg every 2 weeks is more like sprint. Looking back on my situation I’d say it’s more of a marathon without the running. Try a slow taper method; search tapering plans. I reduced at 1mg every 4 W, paused and then reduce again at the same rate. When I got to 5mg I reduced by 0.5mg every 4 to 5 weeks. And when I got to 2mg I reduced by 0.25mg over 4 to 5 weeks. The lower you get the slower is the mantra here. It took me 4 years, and don’t listen to doctors saying it only lasts 2 years, that’s just text book stuff and PMR will last as long as it wishes, and we’re all individuals.
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