Back to square one

[gillsky8]

Having reduced to 7mg over last 3 months I am noticeably struggling.

Have concluded that 10mg was the least I can manage on and have to wait for Doctors opinion.

is this the norm for PMR please? Thought I was doing so well 😞

[PMRpro Ambassador]

Sorry to hear you are struggling - but it sounds to me as if you aren't remembering the primary criterion: you aren't reducing the dose relentlessly to zero come what may, you are tapering (not quite the same as reducing) to find the lowest effective dose, the lowest dose that gives the same symptom relief as the starting dose did.

It is a bit like a tap dripping into a bucket. As long as enough water is being scooped out at the same rate as the tap is dripping, the bucket won't fill up and overflow. So when the dose of pred falls to a level that isn't quite enough to deal with the daily new dollop of inflammation, it will build up and eventually cause symptoms again. Leave it long enough - and you may end up back where you started.

Four months ago you were at 15mg - now you say you have reached 7mg, that is a very fast reduction - not a slow taper. The time for half of patients to get from 15mg to 5 mg is 15 months - and that means half of us take longer than that.

[gillsky8 in reply to PMRpro]

That’s interesting I have only been following doctors instructions tapering down 1mg less every 4 weeks

[DorsetLady PMRGCAuk volunteer in reply to gillsky8]

You may have been following instructions - but unfortunately that doesn’t mean your PMR is…

What may look good on paper and sound achievable to your doctor and you, doesn’t always work out perfectly. If it did everyone would be off the Pred within 2 years and with no issues. Some may be, but there are a heck of a lot of patients that aren’t…

Now you are a at the level where your adrenals need to starting thinking about working again… so that may be the issue… as well as too quick a reduction.

When you say you are struggling, what exactly do you mean? Struggling means different things to different people.

[DorsetLady PMRGCAuk volunteer in reply to gillsky8]

I know it’s long time since I went to school, but if you started 4 months ago maybe 5 months - and reduced from 30mg to 15mg within first 3 weeks, … not sure how you managed to reduce 1mg every 4 weeks and now at 7mg… 4 months from 15mg at 1mg month would have you at 10mg or 11mg.. not 7mg.

Did you drops from 15mg to 10mg in one step [which would be very steep] - and have been doing 1mg since then? That would get you to around 7mg… and would also account for getting progressively worse at each drop.

Think you need to discuss with doctor about going back to 10mg and then [following BSR guidelines ] reduce 1mg every 4-8 weeks…

[SnazzyD]

Hello, when you say you’re struggling, do you mean with your PMR symptoms or something else?

If it is pain - I’ve just had a quick look at your past posts and saw that you had said about 4 months ago that you had “recently been diagnosed”. So I’m guessing you’ve been on Pred for 6 months or less. To have got to 7mg already is pretty fast going and possibly too low for you right now. The impression given of the PMR journey can be that you take the Pred, reduce to zero and off you go. The Pred is only used as a safety-net to deal with the inflammation caused by the autoimmune activity. The reduction is merely to find the lowest level that copes with your level of inflammation at a given time. Your PMR will do what it pleases in it’s own time so you need to bear with it and keep your Pred dose at the right level to be pain free. When you get to too low a dose, it doesn’t always show immediately which is why reductions have to be nice and slow in order to pinpoint the exact level you need. Was 10mg when you last felt comfortable? What reduction plan did your doctor given you?

If your struggle is from fatigue and feeling generally rubbish but no PMR pain, it is likely adrenal function not returning speedily. This is another kettle of fish, so let’s see how you reply to this and others to see what the issue might be.

[gillsky8 in reply to SnazzyD]

I last felt most comfortable on 10 mg and the discomfort now down to 7mg I think has been creeping up on me since reducing to 9, 8 and now 7 mg . I think I have been trying to manage it again without possibly realising it was getting worse .

[SnazzyD in reply to gillsky8]

Lots of people are given a plan on paper because you have to start somewhere. But what often isn’t impressed enough is that the speed has to be tailored to the patient. Your schedule is very fast and you have found that 10mg was your level for now. Never reduce with increasing pain. That said you are not the first to look back a realise it was creeping on unnoticed.

Once under 10mg you have the return of adrenal function to consider. Do have a read of this information that is essential to know to avoid more problems.

healthunlocked.com/pmrgcauk...

[gillsky8 in reply to SnazzyD]

Thank you all for replies . Spoken to Doc and am back on 10mg. Had actually upped my dose from Wednesday and already feeling much better 😊

[DorsetLady PMRGCAuk volunteer in reply to gillsky8]

Good… and no rush to reduce….

[gillsky8 in reply to DorsetLady]

Thank you ☺️

[HarcHill in reply to gillsky8]

On the advice of this forum, I reduced by only half a mg after I got to 10mg. Each reduction took an average of 2 months, with a long pause at 3.5-3mg where I was for ages. Now very cautiously dropping from 2 to 1.5. It's a long game and PMR is the referee!

[perceptual63 in reply to HarcHill]

Hi,

Did you flare within this reduction schedule?

Thanks. 🙂

[HarcHill in reply to perceptual63]

Slightly at 8 as far as I remember and then when I tried to get below 3.5 then 3. Was on that dose for best part of a yearI think I initially did 20-15-12.5-10 in 2 week stages following GP advice, then slowed right down following advice on here

[perceptual63 in reply to HarcHill]

Thanks for your reply. 🙂

I've had one flare while reducing to 7 mg and eventually had to go up to 15 mg so I'm having some trepidation of experiencing that again.

Currently I'm at 12 mg with reductions on a 5 week intervals. My next reduction is this Sunday where I start reducing to 11 mg, then 10, then 9.5, then continuing with the .5 thereafter.

Well, that's my current plan but we all know that PMR may think otherwise. 😞

[HarcHill in reply to perceptual63]

Do you reduce in one go or gradually adopt lower dose a la Dorset Lady's method?

[perceptual63 in reply to HarcHill]

DorsetLady's 5 week reduction.

So far so good. 🤞

[Alebeau]

That was my comfort point as well after 3 years. I was never able to get lower than that.

Now I am back up to 12 after 5 years in due to a Leflunomide trial that failed due to severe side effects. It will take me a long time to get back to 10 and then see if I can get lower.