First Flare

[Humphreydonk]

Was on 8 mg, doing well, and than whack ! Excruciating pain in all joints, rang doctor, told me to take 20 for 3 days and see if it improves. Tiny improvement on 2nd day, but very depressed. How long do flares last ? Would be grateful for any help, advice.

[jinasc]

If I have this correct, you were diagnosed Oct 2020 and started on 15mg and then increased up to 20mg and now down to 8mg?

That is too quick a drop and means you have gone past where you had the inflammation under control. Which is always the aim.

Now you are back on 20mg it will, in my opinion, take more than three days to get the inflammation under control again.

When you are back to where you were before the flare, then no more than 10% drop at a time and I suggest you take a look at the Tapering Plans under topics.

Now am not a medical person but I also noticed in your profile that you already have RA, is that correct? Is the only meds you are on for your RA is Dicolfenac or have I got that wrong?

[Humphreydonk in reply to jinasc]

Thanks for reply. I started on 25 mg in Jan. Yes, I do have RA as well, but was told to stop diclofenac when I started on Pred.

[jinasc in reply to Humphreydonk]

Good as NSAID are a no no with Pred.

Have you discussed Methotextrate with your GP or RA medics. It is OK to take with Pred and I have been told that Metho is a gold standard treatment for RA. However I think it depends on which type of RA.

I think it will be worth be worth asking the question.

BTW have you had the time to look at the tapering plas on the right hand side of this page?

[Humphreydonk in reply to jinasc]

Was on methotrexate for RA . Was stopped as it affected liver.

[jinasc in reply to Humphreydonk]

That is sad.

[DorsetLady PMRGCAuk volunteer]

Not sure if you’ve read this - gives info on flares - healthunlocked.com/pmrgcauk...

Tapering plans as mentioned by jinasc -

healthunlocked.com/pmrgcauk...

[Humphreydonk in reply to DorsetLady]

Yes, thanks. I've read it - on my saved list. I'm on 2nd day of 20mg, as advised by Dr. V slight improvement, but still awful. Pain in hands, so sorry if my posting is short.

[DorsetLady PMRGCAuk volunteer in reply to Humphreydonk]

No problem…you may need to give higher dose at least a week, sometimes up to 10days - depends how much excess inflammation has built up…..

Doctor is a bit optimistic with 3 days….

As it’s the second time you’ve had to increase Pred, I think you are trying to (or have been pushed into) reducing too quickly. You are only 6 months into treatment.

Have you been advised on what happens after 3 days?

My personal view (and is only mine) - take 20mg long enough to get inflammation under control, then down to 15mg for a week, then 10mg for 3-4 weeks…then 1mg a time (guidance says every 4-8 weeks, depending on patient). Once at 6 or 7mg then only 0.5mg a time.

[PMRpro Ambassador]

Pain in JOINTS rings alarm bells for me - PMR doesn't really affect joints, it makes surrounding soft tissues like ligaments and tendons and the attachments inflamed. and usually shoulders and hips. I'd wonder if this is the RA, especially as you have stopped the MTX. It isn't the only DMARD and once you have failed a couple of DMARDs, even the UK lets you have a biologic. Your rheumatologists needs to get a bit more creative I think

[Humphreydonk in reply to PMRpro]

Thanks. I have had RA for26 years and the methotrexate was stopped after approx 12 years. I have had reasonable life with periods of remission and some flares of RA, but since the polymyalgia hit I don't know where I am. Am due phone consultation on 9th July with rheumatologist. Concurrent RA and polymyalgia are complex. Biologics might be a way forward.

[Humphreydonk]

No.