Concerned

[Pred77]

hi I’m taking Pred as treatment for pmr, just started in April, my health provider is taking me off of treatment, but too quickly, as they feel I’m not sure, although I’ve said I agree to it, the repeat medication has been stopped with advice to cut dose by 3mg from 10mg which will cause withdrawal, but will support with pain relief (not given). I feel panicked as I know this is not correct the dose should be tapered, I started with 8mg Thursday but I’m awake with symptoms stomach ache sweating weakness, do not know what to do. I’ve taken 1mg I feel better than I did but I’m overwhelmed by the health providers attitude as they are advising me against initial advice, which was do not suddenly stop medication.

[DorsetLady PMRGCAuk volunteer]

What do you mean by ‘as they feel I’m not sure, although I’ve said I agree to it,’ - that it’s not PMR or you’ve not agreed to the medication?.

Either way, as you have been on Pred for a few weeks and above the physiological dose [approx 7-8mg] as you rightly say you cannot wean off too quickly, and certainly not just stop. It’s likely to cause an adrenal crisis.

You do need to discuss the situation with them, or find another provider who has more understanding of how to treat you.

[PMRpro Ambassador]

After only a couple of months you CAN reduce the dose of pred to zero like that. But if what you have is PMR, all that will happen is the symptoms will return. Down to about 5mg there is enough corticosteroid present to provide for all the bodily functions that require it. Many endocrinologists say 2 or 3mg is plenty. You mustn't stop it altogether, you must taper over a period of a couple of months.

But more to the point - if you have a diagnosis of PMR, they obviously haven't a clue about the chronic nature of PMR. Pred isn't a cure, it is a long term management strategy over years, not a few months.

This is a far more reasonable approach to management - bring it to their attention. Old it may be, but is still in use by the author who is now a professor at Luton hospital

rcpe.ac.uk/sites/default/fi...

[piglette]

It does seem that you and the health provider are not really communicating well with each other. What have they said about the PMR? Do they think you have it or do they not? If they think you don’t have it, what do they think you do have and what is their treatment for it? Have they do you to stop taking pred?

[Pred77 in reply to piglette]

Hi sorry for delay in answering, your asking the same question as I have, a gp (I’ve seen a few since September 23) is treating me April 24, if I ask questions he just looks at watch (time poor) either says do you want treatment or not (while typing what I say) or just pulls a face and comments Google it.

Then another gp from the same practice rung me (6weeks into treatment to say I shouldn’t be on this treatment, to get off asap dropping dosage drastically, terminating within a couple of weeks) I am on a small dose 10mg highest 15mg . I do not recall if he recommended my next step I was quite shocked and became anxious.

I tried two days but had a bad feeling, so I upped it again to 10 and spoke to HP who prescribed initially, I reiterated I wanted to resume treatment.

I had headaches I was concerned so I went along to see go, he sighed and said do you want treatment, became impatient and cancelled my medication, while saying against what he had previously warned Dont come down in medication to fast so I’ve been monitoring myself and reordered what I need

[Pred77 in reply to Pred77]

Spelling mistakes are auto I didn’t read before I sent

[piglette in reply to Pred77]

I thought I had been dealing with some bad medics, yours seem something else!