Reducing from 21.5 pred

[Artwatercolour]

What is the best plan. I want to get off high dose.

[SnazzyD]

Hello, there isn’t a plan that works for all like a foolproof method that is guaranteed results. Reduction doses and intervals are suggestions as a starting point based on your symptoms now, dose level now, how quickly you reduced up to now, what your activity is (what stress you put on the body) and what withdrawal you’ve been getting. More detail needs to be added on these things I think. A few remain happy with a 2.5mg drop and for some 0.5mg is plenty, it’s a wide range so some context is needed so others can help you. It might be worth a read through the many replies to your previous post too. What have your doctors suggested? Did you ever go back to the docs with your roaming pains picture?

[DorsetLady PMRGCAuk volunteer]

Think you need to discuss this with your doctor, we did give lots of advice previous post but if you are having so much trouble, perhaps there is something else going on that needs to be checked.

[Artwatercolour in reply to DorsetLady]

Please see my recent reply to Piglett

[piglette]

There is no real answer. You have managed to reduce to 21.5mg. Continue the same way. Of course everyone wants to get off a high dose. If there were a grand plan for reducing, life would be easy and we could probably get rid of the majority of posts on this board. Talk to your doctor about your best options.

[Artwatercolour in reply to piglette]

I live in Australia and my GP tells me there has been a court case where a Dr was sued for supplying pred without constant follow up - at least I think that's what it was because the patient experienced extreme life threating things as the patient was deciding what he needed. So my GP has threatened to not prescribe Pred to me if I don't get off quickly. I just had a flare yesterday as I was going from 22.5 to 22 and then a few days later to 21.5. this really frightens me. I have asked for a referral to another Neuro for a second opinion.

[piglette in reply to Artwatercolour]

The trouble is the PMR does not necessarily follow your doctor's rules. If you have problems you must stop reducing immediately. I would have thought it would be more likely to sue a doctor for stopping prescribing steroids when someone needs them, that definitely is totally and utterly irresponsible.

[Artwatercolour in reply to piglette]

So you are saying STOP REDUCING - I guess I don't know when to move to the next step of reducing - I understand from this forum that the pain may not be gone but much less when one starts a step down to reduce - is that correct?

[piglette in reply to Artwatercolour]

You should feel the same you did when you were first diagnosed and the steroids worked. Unfortunately a lot of us find that the pred does not rid us totally of pain. If you find after a week or so, you feel comfortable you can try and reduce, but don’t overdo the reduction as you may find your body cannot tolerate larger reductions.

[DorsetLady PMRGCAuk volunteer in reply to Artwatercolour]

Your GP cannot stop just your Pred, or reduce you too quickly - if he did he would going against all the protocols of tapering the drug. In fact, he’d be more likely to cause you health issues - if that’s his concern.

So I agree, you do need to be referred to another doctor.

[PMRpro Ambassador in reply to Artwatercolour]

Point out to your GP that if he doesn't keep an eye on you - it really isn't difficult - and tries to stop your pred HE will be running the risk of a court case for putting you at risk of an adrenal crisis which at lest makes you very ill and at worst could kill if not identified in a timely manner if you collapsed without anyone being aware.

And I'm far from sure it is a neurologist you need to see.

[Artwatercolour in reply to PMRpro]

Sorry I meant rheumatologist

[PMRpro Ambassador in reply to Artwatercolour]

Same applies - he has a duty of care. And that does not mean threatening a patient.

[PMRpro Ambassador]

What's the best plan? The one that works for YOU - everyone is different and no two patients with PMR have the same experience. However much you want to get off pred - don't rush at it. Whatever you need is that you need - and trying to rush down the dose and landing at a dose that simply isn't enough will just guarantee the symptoms come back.

[Artwatercolour in reply to PMRpro]

Please see my reply to Pigglett

[Theziggy]

There are a plethora pf tapering plans here steroidtaper.azurewebsites....

[Hidden]

Morning, I tried out the Dead Slow and Nearly Stop Method, sadly I experienced a flare at 6.5mg. So now taking each dose for a month but only tapering by 0.5mg. Currently on 7mg till the end of April that will then see me taking 6.5mg again in May. I'm hoping I will manage it this time without any problems....can only hope !!