GCA maintenance dose of pred

I got down to 2.5 earlier this year and hoped that would be my goal. Unfortunately it all went a bit pear shaped with a GCA flare-up and had to go back to 40mg. Have begun reductions again, currently on 25; if I could get down to 5mg by the end of this year will be delighted.

Nefret

There's not really a \"maintenance dose\" as such, I don't think. The aim is to reduce the dose gradually and get off it altogether, just like PMR, but will only be done if there is no return of any symptoms. The starting dose is much higher to deal with the much higher risks associated with GCA - primarily of loss of vision which, once it happens, is permanent - and whether it is tablets, and injection or infusion depends on the situation and how high the dose needs to be as a result.

The pmr gca uk northeast support site (use google to get there) has the official medical guidelines for treatment of GCA under useful medical information (link on the left of the homepage) and it is quite easy to understand the progression of the doses. There's lots more about GCA on there too - all approved by the medics who are involved with the charity so it's OK.

Eileen

Thanks to Nefret and Eileen for your prompt replies! Peace and health to you both - and to eveyone else as well.

Hello Vierannie

As Eileen has already said, there is no maintenance dose as such for GCA. I started on 40mgs and after 3+ years reached 1mg. Now after 4 years I am still on 1mg due to certain painful episodes over the last 9 months either in my arms (PMR) or in my head (GCA). However the arm pain turned out to be muscle weakness caused by the steroids and was sorted out by a physio, and the head pain turned out to be neuralgia! It's so easy to blame every little ache on PMR and/or GCA whereas it can be many other things plus, of course, anno domini! :wink: Another example is that just recently, I have suffered severe face, back of eye and head pain for a week caused by a dental filling which involved drilling up to the nerve. Although not completely better, thankfully it has now very much improved although the dentist has said that the nerve may die - I can live with that (whatever that might entail) but I could not live with the electric shock type pains going through my head for much longer! As with PMR, it is a case of having to increase the dose if there is a flare in symptoms that do not go away in a couple of days - this is more important with GCA due to the risk to one's eyesight.

I did once meet a lady who had been suffering from GCA for 13 years and was still taking a daily 5mg dose of Prednisolone. I also know two gentlemen who have been taking 5mgs for PMR for many years so you could say these people are on a maintenance dose. Some medics also advise GCA sufferers to remain on 1mg for life. So there really isn't any hard and fast rule here.

You don't say what your present steroid dose is or what symptoms you are experiencing that lead you to suspect that you have GCA and I hope this does not turn out to be the case. I wish you well.

MrsO

Mrs. O...Thank you so much for your concern! The shock-like head pains you mentioned are similar to what I was experiencing, and we think mine are probably neuralgia. So, as you'll see below in my ongoing communication with Eileen, I'll stay on 6.5 mg awhile longer and try to continue the slow but steady tapering. Like you, evey time I reduce, the pain returns to my arms (sometimes more intensely than others), but we persevere! Hope it's a beautiful weekend in the UK!

Eileen...Thanks again. I'm grateful to say my rheumy is confident my recent symptoms are not indicative of GCA. (I've also recently seen my ophthalmologist.) We realize the SED rate is not definitive but are encouraged that mine was only at 10. So, I'm to stay at 6.5 mg for two more weeks; then, in the absence of any new and/or weird headaches, will reduce to 6. (I'll post this on the UK site as well, in case anyone else is following us.) Hope you're enjoying a lovely Italian weekend, while I'm having a pleasant one at home in Florida.

Just thought I would, as a GCA person, report on my latest visit to GP.

1) I got told off for not seeing him since January.

2) Told him why waste your time, until Vit D level up with the booster, which had to be waited 12 weeks for, and then another test. Might as well plough on.

3) He laughed and said , knew I was wasting my time, but here are results of full blood test - yes the lot.

Vit D - know finally at 143. something or other. So the maintenance does one week every 12 weeks looks as thought it is going to work. Yippee.

Everything else tickety boo, but CRP still at 13.

So I told him I had been speaking to our Patron (who is a Rheumy and keeps on asking how I am) and when I said CRP had stuck and Vit D had been sorted, he said to remind GP that I was 5.9\" tall and overweight (due to the steroids) and this could account for being 'stuck'. We chatted about it all and have decided to go from 3mg to 2.5mg.

And I promised to go back in six weeks for blood test and also watch out for symptoms and not just get the result of the test over the phone - but actually put an appointment on with him. He starred my name on the computer. Grrrrrrr.

My proper Rheumy did tell me, when I started on this journey, that he would be very happy if I got done to 1mg day and he would advise me to stay on that 1mg.

I have to say I can live with that. But you never know, it might just be possible to get off that 1mg as well.

But I do still have the problem of lower back pain and whilst it has subsided a great deal, it still drags me down. Acupuncture (on the NHS) does not help, physio does not help - painkillers (normal ones do not help, tramadol does, but it knocks me out - so that is a no no.

Nothing helps except a brandy.

But some of you might remember, I had a problem with the left leg (funny how it is always the left side, and I am left handed as well).

Sept last year - then January this year, and the latest bout over Easter.

Each bout seems to last just over two weeks and I am not able to walk, sit down or lie down for more than about a half-hour in each position.

X-rays (numerous) show nothing. Dexa scan 97%.

Unfortunately as it was over Easter and May Day, could not ring the Head Physio who has given me her direct number, as each time it happens, by the time I get an appointment to see her, its gone. (My proper Rheumy referred me to her).

This last bout has left me with fatigue and I am completely washed out.

Never mind, the zimmer frame came in handy and so did the wheelchair I splurged out on. The computer chair (my friend gave it to me) allowed me to get around the lower level, which contains the open plan conservatory and kitchen/diner so I could cook with a couple of 'reach it fetch its' on hand.

The sun is shining but we need rain - I am actually watering my pots for the first time in years in April mind you - high summer yes - April - May No.

Have replaced car with another oldie and am learning to cope with it - a new challenge.

Hope you are all coping well with this strange journey we are on.

May your PMR and GCA take a long walk off a short pier and disappear forever.

MrsK

I'm so pleased to hear you are doing really well and have had good news on most counts.

As for the back pain, I think I remember you saying that it started at the same time as you commenced Pred in which case, and with a bit of luck, it will continue to get easier as you continue to reduce.

It does sound, in the absence of any known cause, that the leg pain could also be related to your back pain. Certainly my sciatic leg pain is very definitely connected to my slipped spine and subsequent trapping of nerves. I don't want to speak too soon but I have been completely free of it for the last couple of weeks after it being a permanent 'pain' for the last couple of years and I wonder if there could also be some connection with being on the very low dose of Pred for some time now?

Good luck with the next half mg reduction - this fantastic weather (especially since the gales have stopped!) should help although I so agree that we desperately need some rain.

Mrs K, I am also glad that you are getting the good news!

I know that my back pain is a result of the Pred. Each time I have needed to go up to silly amounts it starts up and doesn't go until I am able to get below 10mg and even then it takes a while. Can't remember if it is a listed side effect or not, if not then maybe it's no.85?

Also, like you, we are having to water the plants! It's ridiculous in April!

Nefret

Just to let you know that for the first time when taking a drop, and its only 0.5mg, this past four days has been a real downer.

The computer is still not working properly, my brain fog is grim, the back pain is really annoying and I am back to swigging brandy. The legs don't want to walk and all I want to do is sleep.

My fingers won't let me type the words properly so its taking three times as long to type without errors.

Thank goodness I cleared this week, but have a 75th Birthday lunch to go to Saturday.

Steroid withdrawal - yes I think so - full blast - but then nobody medical recognises it, except for my lovely pharmacist.

But there are no symptoms of my GCA re-appearing so that is a goodie so far.

Oh I am grumpy - forgive me.

Hi MrsK

Isn't it amazing that a tiny 0.5 drop can prove difficult. :roll: All down to being very large percentage drops at these small doses.

If I remember rightly, you're around the 3mg mark and I do recall others saying that they had problems at this dose.

In starting my 'trek' to zero I have so far only done one day at 0.5 and have gone back to 1mg for 6 days. I will then try 2 days at 0.5 and 5 at 1mg, all being well - I'm sure my legs felt stiff the day after taking the 0.5 and I kept telling myself that I must be imagining it! :wink:

Keep smiling and enjoying that brandy! :redwine: And enjoy the birthday celebrations on Saturday. :bubbly:

MrsK - now I'm sure this is due to your brain fog, but has it not occurred to you that 0.5mg compared to a 3mg daily dose is 17% - well above the 10% rule? I couldn't do 1mg compared to 17mg - which is 6% - without having pain and feeling foul. Half a mg - 3% - is proving fine so far.

EileenH

Mrs O and Eileen

Sleepless last night in bed, not in Seattle.

Yes I had forgotten about the percentages - treacle or brain fog.

If by Sunday its still the same, I will go back to 3mg one day and 2.5mg then 3 one day and two 2.5mg and do the long haul down.

I think it is because I managed the drops from 5mg to 4mg to 3mg without problems.

Here I am, 4 years into this and still on a learning curve and needing reminders. How thick can you get? The answer to that is 'ten planks sideways'.

Mavis

Mavis - \"Sleepless last night\".......me too with those neuralgia nerve pains in my head again - rather have been in Seattle though!! Pain gone again when I got up - think it was the thoughts about another hour in the dentist's chair this morning - I'm still recovering and just hope this latest session doesn't result in more head pain which is where it all started before - the continuing cold water nerve pain around the first tooth she treated has resulted in her putting some sort of sealant around it - she has told me to switch from my usual toothpaste (Arm & Hammer Enamel Care) to Sensodyne ProNamel and she believes that by the time the sealant wears off in a few months time the nerve will have recovered. There can't be anyone else looking in who is as awkward as me! :roll:

Best of luck that your reduction process works, otherwise, like me, you'll have to resort to a tinier reduction where I would never know what dose I was taking without referring to my pre-printed programme (\"brain fog, sideways planks, whatever\"!) :lol:

Just posted a bit about the dreaded .5mg drop on Green Granny's post (please won't someone design a keyboard with the half sign!!!), but having read this thread I could have replaced the name Mrs K with Lizzie and not bothered to type much else!! Is this the week for the treacle/fog/complete brainless feeling? Didn't help when BT decided to do some 'remedial' work down the road and cut off our entire Close for two days :shock: 5mg to 4mg then 4mg to 3mg, no problem. Going to stay with 3mgs while I feel 'oddible (as my Granddaughter used to say) and then come back and get you all to explain the maths again (just can't take it in just now, the brain is on a trip and doesn't seem to have taken me with it :lol: ). End of moan :sorry: Love to all :hug:

Lizzie Ellen xxx

You can always do half as 1/2 if you don't want to write the word :wink: