Do you think this is to reducing to fast ?

[zarzis]

Would appreciate your advice please ??

My GP set this reduction

[DorsetLady PMRGCAuk volunteer]

Hi again,

It's a plan, but that doesn't mean you have to stick rigidly to it. What's most important is your symptoms at each point you intend to drop, and only time will tell you that. The monthly periods are good, not overly optimistic, and should be achievable, plus it gives you enough time at each level to know if everything okay before you drop again.

From a personal point of view (and my experience only) I would say 30mg - 20mg - too big. Try drop of 5mg to 25mg initially, if okay, then try 5mg again to 20mg, although might be wise just to do 2.5mg drops from 25mg down to 15mg, maybe lucky enough to get to 10mg this way. Men do seem to find reducing easier than ladies for some reason.

However, once you get to single figures you may need to drop by 0.5mg rather than 1mg, certainly below 5mg. Some doctors reckon 0.5mg doesn't make a difference - but it does!

If you remember the 10% rule (not more than a 10% drop each time) you can't go far wrong.

Don't get fixated on when you are going to get off Pred, GCA and/or PMR are not like many illnesses, they don't have a set time limit - they come in their own time, and unfortunately go in their own time as well - despite what the doctors may think. Your aim is to keep the inflammation under control whilst reducing the Pred - that a bit of a balancing act, because you don't know when the inflammation will disappear of it's own accord.

You may be lucky in that your burns out quite quickly, but I very much doubt it will be gone by the time your GP thinks by his plan!

FYI I started at 80mg and got to zero 4 and a half years later - with no flares, although stress did cause high ESR levels so GP increased Pred on 2 occasions. Undiagnosed for 18months prior to diagnosis, so my GCA lasted about 5and half years.

Hopefully your recovery won't be as long as mine, but you can see it's not a quick journey!

[piglette]

I think your GP may be rather over ambitious, but it does give some sort of plan to work to. Also your GP will be keen to get you off steroids as quickly as possible if they are like most doctors! As Dorset Lady says half a mg a month under say 10mg is probably more realistic, but you may find that you can reduce OK on one mg per month, some people can, some people cannot. You have been doing very well so far.

[PMRpro Ambassador]

If your diagnosis is GCA then yes - according to most experts the start is far too fast. You shouldn't be aiming to get a patient from 70mg to 20mg in 2 months which is what I think it says. The authors of this paper

rcpe.ac.uk/sites/default/fi...

keep their patients at each dose for 1 month between 60mg and 20mg - and there is study evidence that there is still inflammation present in GCA and other forms of large vessel vasculitis after 6 months at doses above 20mg.

I'm assuming that you have reduced successfully from 70 to 30 already - and equally I'm assuming you have had no flares of symptoms. In which case - so far so good! However, other top experts say that no reduction should be more than 10% of the current dose - so from here on I personally would ask to reduce 2.5mg at a time and to stay on each new dose for at least 2 weeks, preferably 3 or 4, to be sure you are still stable.

Overall, your GP is being very optimistic. Of all the patients I know with GCA only one has got off pred in 2 years - and your GP is aiming for barely 14 months. It may work - but the commonest cause of flares in both GCA and PMR is trying to reduce too fast and too far. I think this risks doing both and once you start getting flares and yoyoing the dose you are often in trouble.

I'm also VERY surprised a GP has taken it on themself to dictate the reduction rate. They don't normally have the expertise to manage GCA - it is a very rare disease and most have never seen it. It belongs in the hands of a rheumatologist

[zarzis in reply to PMRpro]

Hi PMRpro

I will ask for referal to Rheumy when I see my GP nest, will keep you updated if you don't mind.

Thanks for the Links most helpful.

Wish you well

Peter

[allykat]

I can only tell you from my own experience. In January 2016, I had been on 5 mg for just over 5 weeks and all was fine so decreased to 4 mg. 3 1/2 weeks later I had a flare. I am now back to 4 mg again so fingers crossed. I would suggest that a month between the smaller doses may not be enough to indicate whether you are coping with the reduction as in my case it wasn't.

[zarzis]

Hi Elizcarroll

Like you I had very bad back ache most of the time prior to the GCA/PMR ??? and as soon as I was put on the Pred 60 mgs, overnight my back was fine, as was the feeling of headache, Jaw ache, Blocked nose, Fuzzy head, tender scalp etc.

However after about 1 week the pred seemed to bite back and I really felt strange, could not concentrate on my work but now after 1 Flare abd back up to 80mgs now down to 30 Mgs feeling much better but Back still a major problem, To be sorted once they have got rid of the GCA/PMR

Wish you well and speedy recovery

Peter

[DorsetLady PMRGCAuk volunteer in reply to zarzis]

Hi Peter,

Have you seen a therapist about your back? Do you know what the cause of the pain is?

Many peoople recommend Bowen Therapy, I can't because I've never had it, but I have seen physio during my period with GCA - long standing back problems. So long as you explain that you have GCA to the physio he/she should know how to treat you - gently, rather than too much pummelling! I've also got exercises to do at home. Also started Pilates, which I find excellent, but any gentle exercise will help - Tai Chi, Yoga etc

High doses of Pred may mask the backache pain, but obviously the problem is still there. It (Pred) can also weaken the muscles so if you can do something to counteract that so much the better for you in the long term. If you leave it til GCA sorted, maybe a long time!

[PMRpro Ambassador in reply to zarzis]

I had back problems that were eventually put down to myofascial pain syndrome and severely spasmed muscles (by the local pain specialist). It responded to some extent to higher doses of pred but had always come back when I tried to reduce below about 10mg. She dealt with it with much more targeted treatment and afterwards I was able to reduce steadily to under 5mg for the first time. I had a flare of the PMR (possibly GCA but not affecting eyes) in February and had to go back to 15mg. This time when reducing I'm getting to 10mg and can't get lower without back problems resurfacing - so I'm about to seek treatment for the back again.

One of the top PMR researchers in the UK also thinks that there are "add-ons", as I call them, in PMR and agrees with me that if they are dealt with them separately you will probably be able to manage on a lower dose of oral pred.

[jinasc]

GCA, PMR or Both?

That looks to fast for my liking - sent you a PM.