Ok so I saw opthalmolgist and I was on 60mg for positive GCA been on it for three weeks...So he reduced it to 30mg...my ESR low and crp low...but today blinding headaches in my occiput and creeping over top of head and forehead and left temple........does that seem like too big a reduction.....I have no visual problems.....
Steroid reduction: Ok so I saw opthalmolgist and I... - PMRGCAuk
Steroid reduction
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lyndamcw
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My gosh that is a fifty per cent reduction in one go. It is recommended to not go above ten per cent. After three weeks your body is getting used to the steroids and is probably very unhappy having that sort of reduction. I would definitely increase again if you are having GCA symptoms and tell the ophthamologist.
Yes 50%.....I did think he was a bit ambitious and he did not put a lot of thought in he just said esr low crp low half it!!!
Without stopping to consider it was the pred that made the ESR/CRp low!
Funny - usually opthalmologists are more cagey about lowering the dose as they are the people most aware of the risk to vision.
He just told me I was atypical as I have no jaw pain..So 30 for a week then 20 for a week then 15 and discharged me! I asked if I actually do have GCA .his reply was.....Yes you have a positive biopsy... you can see I am both angry scared and unhappy......Or maybe just moaning!!
No - absolutely NOT moaning. What a stupid person: there is one thing that cannot be argued with and that is a positive biopsy. That is 100% confirmation you have GCA. And he is risking your sight by his actions.
Jaw pain does NOT appear in all patients with GCA - just as none of the so-called "typical" symptoms appear in 100% of patients. I suppose it is too much to hope you have a copy of the report?
But - back to at least 50mg pred and find a competent doctor asap to supply the prescriptions. Where are you?
Near Aberdeen
Not sure what to say - the situation about choice of specialist in Scotland is different from England. But if you have a positive biopsy you need pred at the right dose and a competent rheumatologist - why were you sent to an ophthalmologist? GCA is usually a rheumatology referral.
One option would be to go to the VasculitisUK forum and contact their helpline - one of their ladies lives in Scotland so knows what's what up there.
healthunlocked.com/vasculit...
and the lady you want is Keyes.
Or you could ring an optician in Blairgowrie, Clelland and Boyd, and ask for their advice - tell them you have a positive biopsy and what has happened and ask what they suggest. The optician there is absolutely spot on when it comes to GCA and used to work in Aberdeen
61 High St, Blairgowrie and Rattray, Blairgowrie PH10 6DF
Phone: 01250 872608
And in the meantime - take a copy of this paper:
rcpe.ac.uk/sites/default/fi...
to your GP and get them to read the GCA reduction scheme on page 346. You have a confirmed dx of GCA - if the specialist can't get it right, maybe your GP can in the meantime.
Get a rheumy behind you .i think that's shocking treatment x don't give up Hun x
"Without stopping to consider it was the pred that made the ESR/CRp low!" This sort of stupidity makes one question the scientific training of our medics. As the saying goes: You could not make it up
"This sort of stupidity makes one question the scientific training of our medics."
Unfortunately they don't have any! I'm not saying other nations are significantly better - except almost everywhere else the title of "Doctor" is not a courtesy one as it is in the UK. They have to do a research project and write a thesis - so have to have a bit of the critical thinking process inculcated in them. Many do lose it as they age, especially in countries where the GP and the priest occupy hierarchical positions in the village - but it does help.
Thanks for that. I sometimes I think I am being a bit presumptuous in this with my 60 year old 'O'level phys.with chem and a bit of OU physics. But do know I am very analytical if not logical to a fault . They do say doctoring is an art and not a science but I had not realised what a literal truth this was
Clinical skills are definitely an art - and they are what is sadly lacking in the medical profession. Treat the patient not the numbers...
Hi Piglette. You are right about the ten per cent reduction being recommended but that is for the long taper down from around 12 or 10mg a day, not at the start of treatment. In the early days it's important to get GCA and PMR cases down from the high dose that they start on. The 60mg starting dose for GCA is to shrink the giant cells and get the inflammation under control. So yes, 60 to 30 is a big drop - most rheumies drop the dose from 60 to 40.
I have yet to find a recommended taper for pred that would ask any patient to drop from 60 to 40mg overnight. The US experts who originally advised the 10% limit for tapering the dose were not merely advising it for low doses to allow adrenal function to be reestablished but also to avoid withdrawal problems which can be so similar to the original disease that there is confusion between whether this is a flare of the disease or the withdrawal.
Apart from the fact the dear man here doesn't know the word decrement:
"In terms of a taper regimen, the longer a person has been taking steroids, the slower the taper. Dr. Z typically tapers his patients:
-
by 5 mg increments when they are taking less than 40 mg of prednisone
- by only 2.5 mg when they reach 20 mg of prednisone
- by 1 mg increments once they reach 10 mg
Dr. Z elects to decrease the dose on a daily basis for patients who have not been taking steroids for a long period of time to monthly if the patient has been on the medication for a long period."
When I started with the Dead Slow concept I was suggesting it for patients to use below 10mg - then we realised there were plenty of patients who struggled to reduce even at the PMR starting doses. There are rheumies who would tell a patient they were resistant to pred or needed methotrexate because they struggled to reduce from 20mg to 15mg, a 25% reduction. These same patients have reduced steadily from 20mg to well below 10mg, even below 5mg, using the DSANS approach
The feedback I have from Leeds is that patients think it is the best approach to reducing they have been asked to use and Prof Mackie is very happy with it. As was the Gateshead rheumy who used a similar approach.
Even I wouldn't see any need to use it above 25mg - but the limiting of any reduction to 10% of the current dose makes a lot of sense. 5mg done every 2 weeks is easier on the body and is still 10mg per month. There are patients who can manage 10mg drops - but for anyone who has tried it and failed there is no good reason not to try smaller drops.
PMRproAmbassador
If you have a positive biopsy for GCA I suggest you a) immediately go back to 60mg for the moment and b) go out of your way to find someone who knows how to deal with GCA - because he obviously doesn't.
The normal procedure is 4 weeks on 60mg and then reduce by 5mg every 2 weeks, monitoring for symptoms. Of course your ESR and CRP are low - you are on a high dose of pred and that alone will reduce them because they are enough to deal with the inflammation. You don't use the big dose of pred to clear something out and then reduce it, GCA is an ongoing inflammatory process and you will probably need higher dose pred for some months. A study done in London/Southend a couple of years ago showed there is still evidence of inflammation in GCA and other forms of large vessel vasculitis after as much as 6 months at above 20mg even though the ESR/CRP were normal and the patients had no symptoms. Three weeks on 60mg is not long enough to then reduce by that amount. To 50mg would have been OK, to 30mg is not and it has led to a flare. Almost all flares in GCA and PMR are due to reducing too far or too fast - he has done both.
You may be interested in this:
rcpe.ac.uk/sites/default/fi...
It is pretty easy to read and includes a suggested reduction plan for GCA.
Those were my thoughts too but you tend to think.....he must know what he's doing he's a doc!!
Having been at uni with them and worked with them much of my life my only response to that is yeeee-eeeees!
No comment!!!!!!!
DorsetLadyPMRGCAuk volunteer
Hi,
Simple answer - yes! Don't know what reduction plan he's following, but no wonder you have problems.
Normal reduction is 5mg a time at monthly intervals providing no symptoms return, until you reach 30mg, then 2.5mg until you reach 20mg or maybe 15 mg. Recommended that any reduction is not more than 10% of your current dose. He's reduced you by 50%!
Your bloods should be low, that's the effect of the Pred.
Would suggest you need to go back up to 40mg or maybe 50mg to get the inflammation back under control - and speak to your ophthalmologist advising him what's happened.
It's recognised that in the cases of GCA that you need to maintain a fairly high dose for the 1st few months to get the inflammation completely under control, in fact it took me 4 months to get from 60mg down to 30mg.
Do hope you get things sorted soon.
Next time in Dorset...I owe you a cream !!
DORSET LADY...Meant cream tea!!😁😁
You're on!
This is a very interesting series of posts. I started back in mid-November on 40mg pred after an urgent blood test by my GP diagnosed GCA. I was lucky enough to get a rheumatologist appointment in less than 2 weeks and put on a reduction programme, down to 30mg after 4weeks and then 20mg after another 2 weeks. I seem to have managed these reductions reasonably well, although last week's blood test may show differently. I'm still waiting results of CT scan of head and thorax done just before Christmas - next rheumy appt not till Feb 1. These forums are very useful to share anxieties. I'm in Dorset too, Dorset lady - we should start a mini support group!
Actually there is one - Christchurch. Not sure how good that is for you. I have been to one meeting, bit of a drive, as I'm further west! You can message me if you like and perhaps we could meet up.
If you google "prednisone reduction" the vast majority of sources advocate very slow regimes similar to this site so its a bit of a puzzle unless there are some sort of brownie points for medics to get you off preds.at all costs.
True...my gp has now advocated... 50 and slow reduction hoping to control both pmr and gca at about 15 .... really my symptoms seem to be more steroid related than gca ..So lowering the dosage slowly seems to be the way to go.....more bloods on Friday
They are terrified of pred because of the potential side effects and they are used to using it for flares in RA or asthma or chest infections - where usually the patient takes a short sharp dose and stop. So they think, this a rheumatic disease, it's just a flare, you must stop quickly, totally not getting it that pred for us is the DMARD their RA patient is on all the time. Pred used properly and carefully isn't any more of a problem than a DMARD like methotrexate or azathioprine causing liver problems - and then you stop THEM pdq as well. But they don't see it that way...
PolywotsitPMRGCAuk team member
Relating to 'reduction regimes', the British Society for Rheumatology Guidelines for GCA are that:
Glucocorticosteroid reduction should be considered
only in the absence of clinical symptoms, signs and laboratory abnormalities suggestive of active disease.
. 40-60 mg prednisolone (not <0.75 mg/kg) continued
for 4 weeks (until resolution of symptoms and laboratory abnormalities).
. Then dose is reduced by 10 mg every 2 weeks to
20 mg.
. Then by 2.5 mg every 2-4 weeks to 10 mg.
. Then by 1 mg every 12 months provided there is no
relapse [46, 47].
This general pattern has also been endorsed by an international working party of rheumatologists, ophthalmologists, general physicians and patient organisations. Professor Kirwan has taken the view that it is better to keep someone on a 'maintenance' dose than reduce quickly and have a higher risk of relapse, and in technical terms, that the burden of the disease is worse than the burden of the medication. But this is in the middle stage of the disease, not in the early stage immediately after the acute symptoms have been brought under control by relatively high doses of steroids. Professor Kirwan reduces by 10mg every 4 weeks, which is half the speed, but still big drops down to 20mg. The fact is that a proper scientific comparison of the Kirwan approach against the BSR approach has never been undertaken. It's interesting that the Kirwan paper is published in a frankly rather obscure journal (in rheumy terms) that wouldn't be read by most rheumatologists, because it was presented at a conference in Edinburgh. But it is very interesting and appeals to a lot of patients. So be aware if you are interested in this approach and want to discuss it with your doctor, that it does differ in some respects from the BSR approach which is to get your steroid intake down to avoid side effects as much as possible. On the Kirwan programme a person starting at 60mg would take in approximately 50% more steroid on their way down from 60 to 20 than a person whose rheumatologist followed the BSR guideline. So you need to think about your risk factors for steroid damage as well as your risk factors for complications from the GCA. Something to discuss with your doctor.
I suppose you could call it "obscure" in relation to English rheumatologists. GPs might regard the rheumatology journals as obscure - in their circle of business. And of course it was the Royal College of Physicians in Scotland.
Kirwan's paper was presented to GPs - it was designed for GPs to help them manage their patients. For the people who more often than not are dealing with the PMR patient on the front line. Whether that is ideal or not is a matter of debate - but given that the reality in the UK is that you are likely to have to wait months for a first appointment for PMR the alternative would be to leave a patient immobile for a very long time. Kirwan emphasises that GCA belongs in the hands of the rheumatologist - again, the reality of the NHS means they may have to wait weeks even for an emergency appointment at present.
If you are going to suggest that there wasn't a scientific comparison of the Kirwan approach with the BSR suggestions - you have also to acknowledge that there was no scientific approach to adopting the reduction the BSR quotes. Kirwan says he has found a reduction in the rate of flares from the 3 in 5 admitted for other reduction schemes to 1 in 5 for his own - which does suggest to me at least that he has kept records in order to write his paper.
The bottom line however is that whatever the side effects due to high dose pred - none of them are as bad as the ultimate side effect of GCA: irreversible blindness. Where patients can cope with precipitate reductions that is all well and good and they are not going to appear here or anywhere else complaining about problems. They do not need an alternative. But a study by Dasgupta and colleagues in London established a couple of years ago that there is still strong evidence of inflammation being present in various forms of LVV, including GCA, after 6 months on high dose pred, i.e. above 20mg. Which suggests that maybe a bit longer at the higher doses might be preferable to rushing a patient down to 20mg.
PolywotsitPMRGCAuk team member
Yes. Don't get me wrong. I like the approach set out by the Bristol study. It has a priori validity and I tend to think it might have saved me some suffering when I had PMR. Of course records were kept but like so many studies in PMR and GCA it was smallscale, not blinded, and did not have a control group. We only have to read the systematic reviews carried out by the international PMR and GCA working groups to understand that research evidence is weak across the board. The researvhers are fantastic, the resources are poor. We need a large scale study that will compare outcomes across the different regimes, differentiating between GCA and PMR. In the meantime we have to recognise that pred is a dirty drug and what we really need is alternatives.
I'm sorry to disagree but I really do not accept your opinion that pred is a "dirty drug". Used properly it is life-saving and to talk about it in that way tends to scare patients so they are not willing to take it. I've been on pred longer than many on the forum with no lasting problems - that isn't to say I didn't have problems, I did, but they have all been reversed and without extra medication. The biggest problem I have is due to the autoimmune process of the PMR/GCA which has caused atrial fibrillation. Nothing to do with pred. There are a few others who have been on very long term pred who would agree.
And let's be clear - if there are any alternatives they are going to be extremely expensive. The state the NHS is in they won't be approved when pred works fine for the majority of PMR patients because there simply isn't the money to cover expensive drugs for a lot of patients. In addition, while tocilizumab sounds wonderful and will be used for GCA I'm sure, I have already met 2 or 3 people who have had to stop taking it after only a few infusions because of adverse effects. MABs can be nasty drugs too - and they are relatively new. Perhaps the biggest plus for pred is that, after 60 years, there isn't a lot more to be found out about it and we know what the long-term sequelae are.
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