does half a mg make so much difference

[Rosina1871]

about three weeks ago I started to feel the familiar aches associated with pmr. Prior to this I had dropped from 3.5 to 3. I contacted my rheumatologist department and had a blood test which showed cpr <5 cor but I had symptoms. I’ve arranged a further blood test next week and was advised to stay with 3mg. I took 3.5 today against their advice and already feel better. Should I have gone with rheumatologist advice? Can .5mg make all the difference. 🙏

[DorsetLady PMRGCAuk volunteer]

Many have found that yes, 0.5mg can make a big difference, doctors may not agree but patients know!

I’d be inclined to stick at 3.5mg - and when you reduce again, a slower tapering plan if not already on one…

[Rosina1871 in reply to DorsetLady]

Thank you. Just don’t think the rheumatologist sometimes have any idea of the discomfort we feel. I was told to stay on 3mg but did not want to risk a full blown flare

[DorsetLady PMRGCAuk volunteer in reply to Rosina1871]

Not they don’t…..

[Missus835 in reply to Rosina1871]

They absolutely do not.

[Charlie1boy]

In my experience it most certainly can make a difference, and I know from this Forum that I am not alone. There are some rheumatologists, and, I guess GPs, that don’t realise this important fact!

Good luck.

[Rosina1871 in reply to Charlie1boy]

Absolutely and thanks

[PMRpro Ambassador]

Yes - judging by experience even as little at 1/2mg can make a difference, both in terms of PMR symptoms and adrenal function. The inflammatory markers may well lag well behind the symptoms which is why top experts all sau symptoms trump blood tests.

They have never walked the walk - doctors who have later developed PMR have said they realise now it isn't like the textbooks and they could have helped their patients more.

[Rosina1871 in reply to PMRpro]

Thanks. I mentioned in my email to the rheumatology department about blood tests lagging behind symptoms. Fell on deaf ears and just said keep on 3mg and have another blood test in two weeks

[PMRpro Ambassador in reply to Rosina1871]

There is a logic - adrenal function will only come back in response to a lower dose of pred. Unfortunately. they aren't living our lives!!!

[BettyE in reply to PMRpro]

God save us from text books.

[winfong]

I cannot seem to get to 6.5 meg from 7. Been trying for a year

[Temoral in reply to winfong]

Is it worth trying .25 mg....or too crumbly?

[Rosina1871 in reply to Temoral]

That’s what I’m going to do. Thanks

[LucilleG in reply to Rosina1871]

That's what I've done for this taper. Three months ago, I tried to go from 5 to 4.5 mg but had a flare. I just went down to 4.75 mg yesterday and using DSNS, I will take 5 mg for 5 days, then 1 day of 4.75 mg, then 4 days at 5 mg, etc. Hopefully this taper is successful! I hope it works for you as well.

[Svete in reply to winfong]

Same here, have been trying for two years to get down to 6.5 mg and always flaring. Absolutely not sure how to reduce the dose.

[PMRpro Ambassador in reply to Svete]

If that is what your body needs - you won't get past it however you try. But are you sure it is PMR or adrenal laziness - they can be very similar.

[Svete in reply to PMRpro]

I wonder if its possible to check if my adrenal glands are working ok then?obviously there is must be a such option.

[DorsetLady PMRGCAuk volunteer in reply to Svete]

There are tests to show if they are capable of working, but not that they actually are and certainly not how well.

Have a look at this - healthunlocked.com/pmrgcauk...

[PMRpro Ambassador in reply to Svete]

A basal cortisol level will give some idea. The synacthen test shows if they could react to ACTH from the pituitary but it is artificial ACTH that is used so doesn't show if the pituitary and hypothalamus are doing their job and the adrenals are getting on with the job reliably day to day.

[ncfaaeos]

In a word "yes" as far as I am concerned. However, I have noticed that whenever I reduce I have symptoms for up to a week before it seems that my body has accepted the lower dose. I was treated for PMR for 26 months then had a break from Prednisolone for 14 months; 18 months ago I was diagnosed with GCA/PMR for which I have been taking Prednisolone. I am on a very low dose now and although the amount I reduce by each time is very small, I can still feel a difference during the first days on the new dose.

[DorsetLady PMRGCAuk volunteer in reply to ncfaaeos]

You are describing withdrawal symptoms….

STEROID WITHDRAWAL (or body getting used to new lower dose) usually shows immediately new dose is taken - and lasts between 2-5 days, but should then disappear.

It varies from a general feeling of being off colour to a return of symptoms pre diagnosis. For some the effects can be eased by paracetamol. It’s one reason why the various slow tapering methods were devised.

[ncfaaeos in reply to DorsetLady]

I agree. I mentioned it because the feeling I get could be confused with a flare - and I get it each time I reduce, even though I am adhering to the slow tapering method. Now I realize what it is, I don't worry about it and just bide my time.

[DorsetLady PMRGCAuk volunteer in reply to ncfaaeos]

Good…

[Rosina1871 in reply to DorsetLady]

Thanks for your reply. I’ve been on 3mg for about two weeks and still have symptoms. Another blood test booked for next week. Will bear with it until then

[DorsetLady PMRGCAuk volunteer in reply to Rosina1871]

Okay - but the longer you leave it, sometimes harder to get back under control…. But if blood show an increase then maybe the doctor will realise there is a problem.

[Rosina1871 in reply to DorsetLady]

I’ve tried to emphasise that bloods lag behind symptoms and also that I dont want a full blown flare. Having a blood test in a weeks time. I said what if my symptoms get worse, the replywas get a blood test sooner. That’s not always possible at my surgery. You can wait for two weeks to get a blood appointment. It gives stress just worrying about the possibility of a flare but they don’t want me to increase pred until after test results

[DorsetLady PMRGCAuk volunteer in reply to Rosina1871]

Get blood test sooner!

Yeah right…. What a crass remark… and you’re correct it doesn’t help the stress levels…

[Rosina1871 in reply to DorsetLady]

Thanks. I start to think it’s me being unreasonable so thank you for your comments

[DorsetLady PMRGCAuk volunteer in reply to Rosina1871]

Not its not you....

[Gardenbay]

I have dropped from one and a half to one mg, a day. I always allow time for the pred to work about two weeks, I then started to get pains in legs and weakness. I decided to go back up to one and a half and the pains got better. I haven’t seen anyone since first diagnosed, and it seems my GP doesn’t understand the illness. So I work out doses myself.

[PMRnewbie2017 in reply to Gardenbay]

Try 1.25 mg perhaps. I'm a stickler for the 10% rule where possible and 1.5 to 1mg is a 50% reduction!

[PMRpro Ambassador in reply to Gardenbay]

And an option is to use one of the slowed tapers but slow them down even further by repeating steps.

[PMRnewbie2017]

In a word Yes. Plus the symptoms are very similar to a flare so it's very hard to differentiate. If pain killers fail to help then your Pred dose is too low.

[Daffodilia]

I find it does when try to cut to 5.5 from 6 mg of pred

[Rosina1871]

yes I thought about a .25 drop. Thanks

[HeronNS in reply to Rosina1871]

If your symptoms remain or, especially, if they appear to worsen over your next fortnight at the lower dose, you will need to go up a few more mg to get the flare under control. After you're securely back on 3.5, assuming this is currently your "lowest best dose," then try the quarter mg. I have to say it sounds very much like 3.5 is your lowest best dose and it's unlikely that slowing the taper down will enable you to get down to 3 just yet, although perhaps 3.25 will be enough.

Speaking as one who has experienced the effects of half mg changes! (Currently at 1 mg, early stages of taper to .5, but I think for me it's now all on the adrenals and, touch wood, PMR finally in remission.) As long as you experience persistent PMR symptoms when you taper it's likely you're approaching or at a dose which is too low for you at this time. Too bad so many doctors don't understand how long a process this is for so many of us.

[Rosina1871 in reply to HeronNS]

Thanks for your reply. The rheumatology department are insisting I don’t raise my pred without their guidance

[HeronNS in reply to Rosina1871]

Frustrating isn't it? At moments like this one almost wishes they would come down with PMR and find out how wrong they are....

[Rosina1871 in reply to HeronNS]

To be honest I was thinking the same thing!