Reducing: I have come down from 8mg of pred since... - PMRGCAuk

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Reducing

Robinsnest72 profile image
18 Replies

I have come down from 8mg of pred since July. I am now at 6mg. On 8mg I was taking 5mg in morning and 3mg evening. My Reumy is wanting me off the evening dose and I am struggling. Woke up last night at 3am with arms aching. I am taking 5mg am and 1 mg pm. Feel dreadful in mornings but somewhat better as day goes on. In my diary I am reading good days on 8mg and my CRP and ESR were really low. They have started to rise but Reumy says in range. My question is if I go back up to 8 is it enough to improve the way I feel or do I need to go higher?Reumy will not be a happy camper! Do not go back to him till October. He wanted to put me on methotrexate and I declined so he is not happy over that. Does RA act the same as PMR and is it treated the same?

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Robinsnest72
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PMRpro profile image
PMRproAmbassador

It doesn't matter if they are "in range" - a rising trend shows there is probably increasing inflammation, it isn;t normal for YOU personally. The "normal range" is for a population of more than 10,000 subjects, all apparently healthy - you have your own personal normal level. Mine is in low single figures - 18 is still "in normal range", it is very high for me. I do wish doctors could get this concept - I learnt it very early in my medical science career!!!

You are now in physiological range for pred - about the same as your body makes in the form of cortisol anyway. If you take less pred, your body should make more cortisol to top it up. There is no point adding methotrexate at this stage - it should be kept for people who have repeated flares at higher doses and there is no guarantee it will work anyway.

Is 2mg at night enough to make the morning acceptable? Or can you take it earlier in the day and it still take you through the night? When does the pain return? And let him think what he likes - what he doesn't know and all that ;) I seriously doubt that 2mg in the early evening will affect adrenal function returning - because I imagine that is why he wants you to drop the nighttime dose. So if that sort of timing works - great.

Robinsnest72 profile image
Robinsnest72 in reply to PMRpro

Thanks for your reply. I took 5mg this morning and will take 1mg tonight but it does not seem to cut it. I am getting blood work done on Thur. And if my numbers have gone up again I will increase the morning dose as trying to get off night. My arms were aching at 3am and I have not had that since The beginning. I actually sleep quite well but everything starts as soon as I get up.

PMRpro profile image
PMRproAmbassador in reply to Robinsnest72

I don't think stopping your night time dose will work - that is what is taking the antiinflammatory effect up to the full 24 hours for you. It doesn't last the full 24 hours for some people and that is why splitting is suggested. If you had to split before - you will have to continue to split now.

kulina profile image
kulina in reply to PMRpro

I've always split it otherwise I couldn't function. I'm down to 4 mg Pred and I take 2.5 in the morning and 1.5 at night. I need to function, not struggle, and thankfully that's ok with my doctor. I read your post again. 8 mg to 6 mg is way too fast. I was able to reduce only by .25, even .50 mg was too much, with the slow reduction. I can't say I've ever had a flair reducing this way.

Robinsnest72 profile image
Robinsnest72 in reply to kulina

It took me from July to now to get to 6mg from 8mg. Doing as I was told. Am not going down any more. What times do you take your pred? The mornings are so difficult.

kulina profile image
kulina in reply to Robinsnest72

6 mg from 8 mg seems pretty fast in such a short period. I could never do that. I always had to reduce really slow. I take my nightly Pred right before going to bed. The morning one has been a different story throughout the 3 years I've been on Pred. I have taken the morning one around 3/4 am or at 7 am. When I find the mornings to be difficult I switch to 3 or 4 am. After a while, when I get tired of waking up at 3 am, I switch to 7 am. If I wake up feeling good, I stay there but if I wake up stiff, I return to the 3 or 4 am time. It's a pain to have to interrupt a good night's sleep. You say: "Feel dreadful in mornings but somewhat better as day goes on." I felt the same way when I took my pred at 7 am. It seemed that it took until noon for Pred to make a difference, hence the 3 or 4 am dosage. If the mornings are difficult, definitely take your Pred at 4 am. It really works for me. I hope this works for you too.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Just add to PMRpro’s comments - which are spot on as usual - you may find that returning to 8mg is enough to stabilise things . Hopefully it will be - then reduce by 0.5mg per month - slower than you have been doing and probably than your Rheumy would like - but heigh ho such is life!

As I understand it, DMARDs (MTX etc) are used to treat RA whereas steroids are primarily for PMR/GCA ( and other illnesses when used short term).

Sure someone who has RA will correct me if I’m wrong.

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

They are - but the claim is that mtx alters the metabolism of the pred so you get more bang for the buck - which might result in the same effect for a lower dose. But at the expense of adding another medication to an already full calendar all too often ...

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

Best stick to the devil you know.... plus can’t recall those on DMARDs for RA saying they have helped their PMR steroid reduction.

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

Quite - nor stopped them developing PMR ...

Blackcat1M profile image
Blackcat1M in reply to DorsetLady

Hi I am on mtx it does not help my reduction, and I had PMR before RA.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Blackcat1M

Well, that's what a lot of us on here think, but interesting to have it confirmed. Pity doctors don't question it before they suggest to PMR patients.

Blackcat1M profile image
Blackcat1M in reply to DorsetLady

I have never understood it when I read people saying my doctor said take mtx it will help to reduce pred.

Before I went on it I did ask my rhymi, why do you want me to take it, his reply it will help RA, and also he said(don't know how true it is ) that it would help my hands not to be mishappen if caught early, maybe someone could clarify this for me.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Blackcat1M

if you want question re hands answered this may not be the best place to ask, sometimes questions get lost in a thread.

Open up a new post on here, or maybe ask on the NRAS forum - healthunlocked.com/nras

Blackcat1M profile image
Blackcat1M in reply to DorsetLady

Many thanks

PMRpro profile image
PMRproAmbassador in reply to Blackcat1M

Methotrexate is the first-line medication for RA all across the world and has been for more than 30 years. It is what is called a DMARD, Disease Modifying Anti-Rheumatic Drug, and is has an effect on the actual disease process of RA - they don't know how but it damps down the effect in the joints. Before the DMARDs people with RA developed grotesquely gnarled hands and other joints which made daily life very difficult. Nowadays you rarely see people with badly deformed joints - which shows it does work and accounts for its popularity.

Nanna71 profile image
Nanna71 in reply to DorsetLady

I am proof positive that MTX does not help with steroid reduction. I have RA, and found it near impossible to reduce pred. below 20 mgs in spite of max dose of MTX at 25 mgs and 2gms of sulfasalazine. Because of this, the doctor said I must have overlapping PMR. Personally think he didn't wait long enough for the Dmards to set in (took about 5 months, 6 even better). Now, I have finally reduced to 14 with no complications and a slower taper than dr. gave me.

Perhaps my taper at dr.'s advice was too rapid anyway, so withdrawal problems.

I get my advice on this forum for tapering now, and the RA forum for measuring my hopeful entry into remission. Between the 2 diagnoses, I figured my pred. reduction shouldn't cause any flares if I only have RA and taper slowly.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Nanna71

Unfortunately for many patients - like you - they have to be their own expert. Shouldn’t be, but it is.

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