Reducing Pred 7.5 mg

[suszannah]

Hello all looking for a little help please, I have trying to get of Prednisolone since 2013 with many restarts currently at 7.5mg with CRP at 12 tenderness in temple last 2 days so have taken another 2mg seems to help so how long should I stay on 9.5mg? and then how to reduce back please

[DorsetLady PMRGCAuk volunteer]

Hi,

You seem to have been stuttering for a long time - on and off.

I’m going to link a couple of posts, one which is about adrenals, which I think might be part of your problems, and the second which explains flares and steroid withdrawal -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

In answer to you question - suggest you stay at 9.5mg for at least another week. After that, depending what dose you were at when current problems started - were you at 7.5mg, or did you increase to that first and it didn't work? Usual recommendation is to go back to just above dose you were last okay.

If you don’t already use a slow taper plan, maybe try something like this, there are others to look at as well -

healthunlocked.com/pmrgcauk...

[suszannah in reply to DorsetLady]

Thank you for reply, there have been a few problems over last 3 months so stress could be behind it, first noticed it last week at hairdresser a very sore spot on top of head, but yesterday a slight headache but temples both sides very sore so I just upped by 2mg thinking 1mg wouldn't do much. last two bloods were a bit high for me at 12crp but was told to stay at 7.5mg but feel a little better today ....have been reducing by 0.5mg 4 weekly I plan to stay at 5mg when I eventually get there ... as last year I got down to 2mg and was very ill don't think the adrenals has come back then .... Will take a look at the links and thank you so much

[PMRpro Ambassador in reply to suszannah]

Who told you to staty at 7.5mg in view of a potential increase in symptoms? All the signs are there - including the CRP being "high for you".

Is there a level where things go pear-shaped every time?

[suszannah in reply to PMRpro]

Thank you PMRpro spoke with rheumatology specialist nurse only last week and he told me to stay at 7.5mg although I queried it last 2 monthly bloods were 12crp usually 7 or 8 wasn't happy but did as told he did say I could go down by 0.5mg per month though, I rarely have GCA sympton usually PMR the headache yesterday wasn't too bad as I don't normally get them it was the temple tenderness that worried me

[PMRpro Ambassador in reply to suszannah]

There is a rising trend to that CRP and that is more significant than the actual number. And you have symptoms. Did you try paracetamol for the headache?

[suszannah in reply to PMRpro]

Yes took paracetamol but also took the extra 2mg of pred still not feeling right but tenderness has eased and so has headache

[suszannah in reply to PMRpro]

Rheumatology specialist nurse said to stay at 7.5mg although he knew my CRP was 12

[SheffieldJane]

What is your doctor/Rheumatologist’s response to the tenderness in the temple symptom following a reduction?I get mild GCA type headaches whenever I try to reduce below 10 mgs of Pred. I am also on Tocilizumab and was diagnosed with GCA/LVV a year ago. I think that I fear for my eyesight so much that I do not press on with the taper. My Rheumatologist is arranging for an MRI scan to assess the progress of the disease. I wonder if this is a common feeling?

[suszannah in reply to SheffieldJane]

Hello Rheumatology always tells me to reduce by 1mg but I usually find 1mg a per s too much so I usually go 0.5mg OK for a while then I have to up again been like this since 2013 GCA and PMR

[DorsetLady PMRGCAuk volunteer in reply to suszannah]

As PMRpro asks - is there a particular dose where the issues seem to reoccur, if so then maybe that is YOUR lowest achievable dose. If it is, it is! Doesn’t mean it will always be...Have you discussed with Rheumy?

[suszannah in reply to DorsetLady]

Attached I think record of crp over time, explained to Rheumatology nurse that I plan on staying at 5mg when/if I get there all they want to do is since 2013 is get me on MT X and there is no chance of that

[DorsetLady PMRGCAuk volunteer in reply to suszannah]

Ok.. .. better the devil you know.

[Ceathrua498]

HiI’ve been on Pred since 2015 and still struggling to get below 5mg. Currently on 6mg but feeling very tired and breathless on exertion. Started off on 60mg after being diagnosed with GCA but I was told last year its not GCA but Adult Onset Still Disease and still not really sure. I’ve had loads of flare ups during the last 5yrs. This forum has been such a help over the years.

[suszannah in reply to Ceathrua498]

I don't know why I keep revolving just seems I will never get to my 5mg target did get Don to 2mg last year made myself really ill including my hair falling out thankfully that has resolved, have a feeling its the adrenals causing me a lot if the problems... hope you get better luck in future