Drop to 10mg or taper

[Gardenerlady]

I started in November 22 on 10mg after 6/7 weeks Doctor reduced pred to 5mg, which turned out to be to low, up to 15mg for one week then reduce to 10mg, a flare started again back to 15mg for three weeks then reduce to 10mg. I am at present in the middle of the three weeks. My question is do I follow prescription or try a taper somewhere inbetween.

[PMRpro Ambassador]

Well you certainly DON'T taper 5mg at a time!!! Not below 30mg pred and in PMR at least. And below 10mg EVERY guideline I know of says 1mg at a time. For some people even that can be too much.

You are not reducing the dose as you do in short-term use of pred for chest infections or the like nor are you heading relentlessly to zero come what may. You have started on a dose that is too high in order to clear out the accumulated inflammation before then tapering slowly in a process called titration to find the LOWEST EFFECTIVE DOSE, The pred has cured nothing, this is a chronic disorder where a new batch of inflammatory substances is shed in the body every morning about 4-4.30am. The dose you are looking for is the dose that is enough for that level of inflammation-causing substances. If it is too low then there will be some inflammation left over and not mopped up by the pred - and it will build up over time if the dose isn't raised to the amount required.

I have likened it to a dripping tap - it will fill a bucket eventually however slowly it is dripping, Either the tap must be turned off or you have to scoop out enough water all the time to stop it overflowing. There is no way of turning off the tap as yet - so you scoop out the water. Eventually the water supply may dry up and the tap will stop dripping - in the meantime, scoop out enough water,

[Gardenerlady in reply to PMRpro]

Thank you for your reply, it has been as you describe the dripping tap, because this is new to me I have followed the prescription the Doctor gave me not knowing any better.The dose I am on at the moment has settled everything down and I can see if I follow instructions will be back to the dripping tap. Looking for advise on staying at 15mg longer or a taper to 14mg before having a conversation with the Doctor. It is much appreciated that you take the time to read the posts and reply.

[PMRpro Ambassador in reply to Gardenerlady]

There is plenty about tapering in the FAQs and you can tell your doctor that Prof Sarah Mackie of Leeds, arguably the top PMR expert in the UK, thinks the dripping tap analogy is brilliant and thoroughly approves of slow tapering approaches, She starts with a standard tapering protocol, though I'm not sure what it is, and if it doesn't work for an individual she goes back and adjusts it. She assumes that ALL doctors do that - you should have seen her face when I and and another patients disillusioned her of that fact and that many simply repeat the same approach!

[PMRnewbie2017 in reply to PMRpro]

I saw one of her team who was doing a locum at the clinic I attended last year. He gave me a taper that he uses in Leeds so I have to assume it's hers. It was a bit swift with 1mg reductions from 4mg over 4 weeks. At 1mg it was taper over 4weeks then stop! I never used it because from experience i know it would have caused me problems mainly because I have been on Pred for nearly 6 years and have an unpredictably lazy HPA axis which stutters for no reason just to keep me on my toes.

[PMRpro Ambassador in reply to PMRnewbie2017]

" It was a bit swift with 1mg reductions from 4mg over 4 weeks. At 1mg it was taper over 4weeks then stop! "

I think it is unlikely that stems from Sarah since she is as aware as anyone of the return of adrenal function problems many experience! But she also trys and revises so that may be the basic NICE or BSR taper that she starts with and adjusts in collaboration with the patient. Most tapers say 1mg per month from 10mg - we know many patients can't manage that, NICE didn't ask us ...

[PMRnewbie2017 in reply to PMRpro]

Thanks for that. If i ever encounter him again I'm even better informed! He was somewhat arrogant and wanted me off steroids and onto MTX despite being symptom free and on 4mg. He also told me i will break bones because i never took AA and said DEXA was a waste of time. Let's just say we didn't hit it off!

[PMRpro Ambassador in reply to PMRnewbie2017]

Noooo - wonder how long I'd have lasted before being thrown out. To introduce MTX to a patient who is already at 4mg is utter nonsense. It is below the physiological level for most patients and any GOOD rheumy wouldn't suggest it. I have to say - if he was a member of Sarah's department, even more so if he is one of her team, I would be writing to her asking for a second opinion. And if your problems are HPA-related, then all MTX can do is possibly keep you at a lower dose of pred longer term which MIGHT allow you to switch to hydrocortisone which MIGHT encourage the adrenal function. Or not ...

I took a whole 4 doses of AA before stopping - haven't broken anything yet in 14 years on pred. The local osteoporosis expert told me after the last dexa that I should carry on as I was - and believe me, she is VERY pro-bone protection. Dexa may be a waste of time - but it is the best available. He's in a minority I suspect.

[DorsetLady PMRGCAuk volunteer]

Hi,

unfortunately your GP has put you into a very difficult situation with a mad tapering plan. That way may be fine for acute cases such as asthma and COPD attacks - but not for PMR where a completely different approach is required.

Maybe have a look at this for your information - and maybe you really need to start over from 15mg - guidelines do say 15-12.5-10mg - but that’s not achievable for everyone, particularly when a fiasco has gone on before. In your case a monthly reduction of 1mg a time would probably be sensible option.

healthunlocked.com/pmrgcauk...

[Gardenerlady in reply to DorsetLady]

This has been a huge learning curve for me over several months , I feel that 15mg is where I should have started and now recognise the gathering storm when GP kept me more or less on 10mg I will gather information from your FAQ etc before tackling GP , but now have no confidence in her judgement. My thinking is trying the 1mg reduction per month if possible and take each day as it comes.

[piglette]

It does seem that your GP is not that well educated in PMR or steroids. What a pity. I often wonder where they get the incorrect information from which can cause people a lot of pain and misery.

[PMRpro Ambassador in reply to piglette]

They make it up as they go along ...

[piglette in reply to PMRpro]

perhaps they should start writing fiction books!

[PMRpro Ambassador in reply to piglette]

Some do turn to comedy ...

[piglette in reply to PMRpro]

😆😆😆

[ImC_]

good luck GardenerLady! I’m sure you can convince your GP now.