Meniscus tear/PMR flare update

[Mfaepink1973]

I am following PMRpro’s advice and this morning dropped to 6mg prednisolone. I had requested more 5mg pred tablets on the MyGP app and last Friday got a call from the pharmacist at my GP surgery to say doctor wants me to drop to 4mg for 4 weeks then taper down every four weeks!! This was the GP who is in overall charge not the one I usually see. I said quite bluntly that No, I wouldn’t do that as I’d just had a flare and this is what the GP has written under the Consultation notes in the MyGP app

“Commentary: I have reduced the dose to 4mg

The bloods were al lok when checked so the flare may be not related to inflammation and more the underlying age / degenerative sort of srthritis. She needs to try the 4mg and if deteriorates can arrange bloods to see if things are or anren't related to inflammation.”

I am ignoring this and will continue with 6mg then slowly taper half a mg at a time.. The senior GP is obviously one of those who are frightened of steroids and wants me off them regardless of any pain I have. I just hope I have built up enough of a supply of pred 🤞

[DorsetLady PMRGCAuk volunteer]

Glad to see his crystal ball is working well… how does he know what’s caused the flare? ..and whatever caused it, only an increase in more is likely to get it back under control…

Like you I’d be inclined to stick to what you know works… and, as you say, hope you have enough Pred to do that.

[Mfaepink1973 in reply to DorsetLady]

Thanks DL, If I get low on pred tablets I’ll go to the GP I usually see who has let me taper as I see fit up to now. How the other doc knew my bloods were ok is beyond me as the last test I had was in early March and ESR was up to 23 from 10 in November last year.

[DorsetLady PMRGCAuk volunteer in reply to Mfaepink1973]

Quite! …some of those crystal balls really are good… must get one 🤣😂

[Mfaepink1973 in reply to DorsetLady]

Just got a text from the senior GP (yes on a Sunday afternoon!) I’ve copied and pasted it so I can delete any identities

Dear Mrs

Please ensure you have a blood test asap - there are appointments on Monday afternoon. We need to see if the ESR and CRP are elevated to indicate a PMR flare. Otherwise the medication needs to reduce to 4mg. I understand that you are worried about doing this from your conversations with dispensary so please get the blood test to see either way

Thanks, Dr ……..

As I’ve been taking 5mg extra for the last few days until today when I dropped to 6mg I can’t see the sense in a blood test and surely dropping from 6 down to 4mg would cause another flare and possibly cause a problem with my adrenals. Any advice appreciated

[DorsetLady PMRGCAuk volunteer in reply to Mfaepink1973]

Hi

You need to get the bloods tested -and see what the results are.. They may still be raised and you can use that as your argument to stay at current dose. If they are okay, then you may have more of a fight on your hands… but you won’t know until you get results…

[Mfaepink1973 in reply to DorsetLady]

Thanks DorsetLady, I’ll book the blood test then and keep my fingers crossed.

[SheffieldJane]

I would be pretty cross. Can you ask for 1 mg tablets to help with tapering. I would be going down by a 1 mg tablet cut in half in future. So many medical people give you their ideas about tapering as if they were gospel, they cause so much suffering. Even my Endo had a new bright idea. I ignore and carry on with DL’s tried and trusted guidance. Good luck. Watch out for expiry dates.

[Mfaepink1973 in reply to SheffieldJane]

Thanks Jane, The senior GP who has insisted I drop to 4mg has had no input into my treatment until now so I don’t know why she has decided to involve herself. Thanks for the reminder about expiry dates, I hadn’t thought of that x

[SheffieldJane in reply to Mfaepink1973]

I just got a shock with my secret store for tapering. I think I am given supplies with very short expiry dates which is useless for sick day rules , flares and tapers. The pharmacy cannot cope with shifting requirements and then it is very hard to get an appointment at my surgery for something they regard as non urgent.

[Mfaepink1973 in reply to SheffieldJane]

Oh heck! I’ve checked my emergency stash and I’ve only 3 x 5mg left (I think it was my request for a repeat script for those that prompted my present problem!) I’ve only 4 x2.5mg but have three full packets of 1mg and all in date thank goodness. The senior GP text me today to say I’ve to go for a blood test asap and drop to 4mg if my ESR and CRP are ok so if I’m ordered to drop to 4 mg I can make up the shortfall for a few weeks as there’s no way I’m dropping from 6mg to 4mg in one go.

I hope you manage to get some more in date tablets to supplement your secret store.

Best wishes and thanks x

[SheffieldJane in reply to Mfaepink1973]

🍀

[agingfeminist]

as is often said here...symptoms tell the story. Blood markers can lag behind the event and for some us show poor correlation....

by the way prednisone is a very stable drug and should easily outlive its sell by date...keep it somewhere cool and dark...

[Mfaepink1973 in reply to agingfeminist]

Thanks, I’m waiting for the surgery to open at 8am so I can book a blood test but as you said it’s symptoms not blood results that count. Unfortunately the GP who’s insisting I drop from 6mg to 4mg doesn’t comprehend that 🤬

[agingfeminist in reply to Mfaepink1973]

this doc needs educating if you are going to be treated properly. Perhaps post ask the wise informed people on here if there are any research papers you can show him. You could also copy paste their answers and show him.

[Mfaepink1973 in reply to agingfeminist]

Good idea, I’ll do that

[PMRpro Ambassador]

I'd certainly call them out on the "all OK when checked" since they haven't BEEN checked recently enough to be relevant, never mind that they do tend to lag behind and by the time they are raised it is rather late and is likely to need more pred.

If you have been down to 10, that is the sort of range you should be aiming for and 23 is definitely raised even if it could be said to fall in normal range - that is normal range for 95% of a large population of maybe 10,000, not the individual within that large population, each of whole has their own normal.

Such a shame that many doctors simply don't understand the statistics of establishing a normal range. Or slept through that lecture ...

[Mfaepink1973 in reply to PMRpro]

Thanks PMRpro. I avoid seeing this particular GP as she is quite blunt and domineering. For example when I took my late husband for an appointment with her he remarked that he’d be glad when he got over his illness to which she replied. “ oh no Noel, you’re not going to get any better” I have a friend who refers to her as Dr Death with good reason (long story)

I’ve got an appointment at 3.30 for a blood test so will wait and see what that shows.

I hope you’re enjoying being in your camper van and that the weather improves for you x

[PMRpro Ambassador in reply to Mfaepink1973]

That is appalling. There are patients who WANT to know they are terminally ill - others need the hope to keep going as long as they can. It is the doctor's duty to find out which this patient is. Shame I'm not closer - I too can be quite blunt ...

[Mfaepink1973 in reply to PMRpro]

I wish you were, and that I could be a fly on the wall while you had a chat with her!

[Freelabour]

Would this help if you showed the GP

cks.nice.org.uk/topics/poly...

[Mfaepink1973 in reply to Freelabour]

That’s very useful thanks