I managed to get down from 30 to 25mg of prednisolone without any real problems and 4 days ago reduced to 22.5mg. Yesterday morning I woke with what I thought was cramp in my right arm which I thought would wear off during the day. Well you've guessed it, it got worse. By the end of the day I was in quite a lot of pain and unable to lift my right arm up in the air. This morning I have woken up mot only with the right arm in pain but also a similar but slightly less painful problem in my left arm. I have learned from this wonderful site that when the dose is reduced the body's own system hopefully kicks in to compensate for this. This does not seem to be happening though. I expected this to happen as I got down to a few mg but not yet. My question is should I increase the dose back up or try to suffer it for a few more days to see what happens. Any help or advise would be appreciated.
Regards
Brian
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studiomaster1
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Hi Studio master 1. It can happen at higher doses. I always struggle with each taper, regardless of quantities involved.
Perhaps it may help if we know your starting dose, how long you were on this, how long on 30mgs before tapering, how long on 25mgs before trying this latest taper?
I have worked out to expect aches pain and stiffness day 2 -5 during a taper. This I believe is my pred withdrawal timescale. If I give it 7-9 days and there is no improvement I go back to whatever I was on before the attempt at tapering and try again two weeks later, since after seven days it is more likely a higher level of pred is needed to control the PMR inflammation.
Having said this, if symptoms are more severe I have aborted the taper within the first few days and gone back to previous dose I was tapering from. Then tried again a couple of weeks later to taper.
Because I was struggling at higher doses to taper I used the slow taper method earlt on. This worked better for me. Each taper took longer, but I have had no flares. (15mgs to 7mgs in fourteen months)
HI Marilyn, I think I may be tapering too fast. I was on the starting dose for 8 months due to lack of knowledge both by myself and my GP. I'm going to return to 25 and see if that helps as today it has got worse than yesterday. I will arrange a visit to my GP as its going to be difficult cutting a tablet into 4 as I only have 5mg tablets at the moment. Thank you for your reply.
From what you describe I would do the same. Presumably you are in UK? For info - I order 5mgs and 2.5mgs gastrointestinal resistant (Coated) and 1 mg uncoated, since you can cut uncoated 1mg to achieve 0.5mgs. I find with this combo I can manage any dose at any time. I also ask for double amount of 1 mgs (one pack coated / one pack uncoated) sometimes. This means I don't need to eat when taking them (since I don't do breakfast). Nor do I take an additional med like Omeprazole for stomach. My GP is very obliging. Might be worth asking, especially if your GP is lacking experience. Good luck!
Thank you I will talk to my GP hopefully this week. As they don't seem to have much knowledge of the condition he will probably agree with whatever I ask.
I have just read the list of other conditions you are also having to deal with. Suggest a referral from GP to a rheumatologist might be worthwhile at present. On the plus side a Rheumy should have some knowledge of PMR and how it should be managed, especially in conjunction with other conditions. On the minus side Rhuemies can be a bit dogmatic on things like tapering, so you might need to be a bit more assertive if tapering plan is not suiting your needs.
I was referred to a rheumatologist by my GP in the early days but they discharged me as the GP had already diagnosed PMR and they were happy to leave it to him to arrange the correct treatment. I will ask again when I get my next appointment with the GP
Perhaps you might need to rehearse speech to GP. Do you think something along the lines of- "whilst I really like you, coz you got it wrong doc, d'you think it might be a good idea to send me to someone who at least has a clue about what he / she is doing" -would cause offence?♡♡♡♡♡ (Can't insert smiley faces!).
Hmm I think it might cause a slight offence. I'm known for my diplomacy so i'm sure I can re-word it so he doesn't remove me from his practice. Ill let know what happens.
But with 1mg coated (yes, they do exist) you can use 2.5mg and 1mg to create any dose reduction in 0.5mg steps down to 2mg. The first problem is 1.5mg and then you do need uncoated - but that size of dose isn't usually a gastric problem.
I take Omeprazole to reduce any gastric problems. The un-coated 5mg tablets that I am taking at the moment break easily in two but when I tried it into 4 I was left with a load of powder. So I will need some 1mg tabs at some stage. I'll let yo know how I get on after my appointment. Thanks again
I know your journey hasn’t been straightforward - with long time in starting dose, but then an apparently successful taper to 25mg.
I found withdrawal symptoms came on virtually straight away, as yours took 4 days it’s a bit difficult to say, almost as if your body wasn’t sure whether the new dose was enough or not. But finally decided perhaps it isn’t!
If it’s withdrawal symptoms then sometimes a painkiller like paracetamol helps - so you could try that. If it does nothing for the pains, then it does sound like the start of a flare. If that’s the case then I’d go back to 25mg. You don’t say how long you were at that dose, but a month per dose is good.
I know you want to get lower, but if your PMR is not ready to let you then you can’t.
For info, your own body (by which I guess you mean Adrenal glands) don’t start working until you get to around 7.5mg which is equivalent to what your body would produce - above that dose they stay sleeping.
HI Dorset Lady, I think i will go back to 25mg as I believe I may have gone too quickly. I gave each new taper 2 weeks but maybe I should have left it longer. I already take a lot of analgesia to combat the other spine problems that I have and that includes Tramadol and Paracetamol so I can't increase the paracetamol any more. Having read through so many posts on the forum I wasn't expecting the flareups until I got down to around the 7.5mg that you mentioned. That is what confused me I thought the high doe pred should have helped the symptoms down to that sort of level. I will go back to 25 and then try it more slowly next time. Thanks again for your help.
You can get a flare at any time - all it means is that you have gone below the level of Pred that your body needs. That’s why we advocate reducing as slowly as you can, or as your doctor allows you to. What they don’t always seem to grasp is that the Pred does not do anything for the illness itself, it only controls the inflammation caused by it, which is not the same thing.
All the time you have the illness, the inflammation is being produced daily, and many things can increase that inflammation- stress being one, so a taper that looks good on paper doesn’t always work in the real world!
You start off on a high dose to get the accumulated inflammation under control, once that’s happened you then reduce sensibly to find the level you need (not what I need, not anyone else on here needs, not what the doctor wants, but YOU).
Recommended reduction is not more than 10% of your existing dose, so for your starting dose you should theoretically dropped by 3mg, but because you were there a long time - 5mg was okay.
From now on though 2,5mg through the 20s and maybe down to 17.5 or even 15mg (some can, some can’t).
Obviously as you get lower you have less ‘surplus” Pred to juggle with so very often it becomes more difficult to find the right balance. Throw in the adrenals around 7,5mg and it really becomes fun. But by then you will know much more about tge illness and you, so you will be able to cope better.
As I said on your other question I think you may be a bit confused about "when the dose is reduced the body's own system hopefully kicks in to compensate for this" - that is for the adrenal function at below about 8mg. It doesn't apply for the PMR at higher doses unfortunately - not enough pred and the symptoms will return as the inflammation starts up again.
I am a bit concerned about you getting returning apparently PMR symptoms at this high a dose after being on as much as 30mg for so long. There should be no residual inflammation due to PMR. Is your GP sure this is PMR? He certainly doesn't seem too aware of the usual approaches! Have you never been referred to a rheumatologist? There are other things that can present just like PMR but respond better to other drugs.
Do you have a full and proper diagnosis of your spinal problems? Can I ask what they are?
Yes I have a prolapsed disc in the Cervical spine, A prolapsed disc in the Lumber spine. Arthritis throughout the spine and recently possible problems in the thoracic spine as well. I had 2 lumbar laminectomies nearly 30 years ago and have had problems since. I also have Meralgia Paresthetica which is now affecting both legs. This is the reason I am desperate to loose weight as I know being overweight makes all of these problems so much worse. I am on Tramadol taken with paracetamol and also Amitriptyline for the nerve pain control. " of the above drugs are not ideal if you are trying to loose weight.
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