What is the prevelance or prevelance rate of PMR and GCA in major countries like the US, Canada, the UK, and other European countries?
Asking for the research purpose.
What is the prevelance of PMR and GCA?: What is the... - PMRGCAuk
What is the prevelance of PMR and GCA?
Written by
gketan30
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39 Replies
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DorsetLadyPMRGCAuk volunteer
What research?
Found this online - UK site -,which is a starter - GCA -cks.nice.org.uk/topics/gian...
PMR -
PMRproAmbassador
medscape.com/answers/332483....
ncbi.nlm.nih.gov/pmc/articl....
But if you are intending doing research you will need to learn how to use Google or other databases just as I just have - though I do realise it is easier to get someone else to do it for you.
Thanks for the reply. I am working on the GCA and PMR data for around a week and googled most of the available online stuff. However, the ratio of prevalence and incidence doesn't seem accurate to me, as the incidence of GCA and PMR are quite low whereas the prevalence rate is quite high. As per my study, the GCA and PMR medication on average continues for 2 to 3 years, so prevalence should be low also. So, I want to confirm what is the actual medication time period of GCA and PMR.
Have you read through the FAQs on this site?…some may be useful especially if you read the responses….they may not give you the scientific facts, but a general feel of the illnesses.
Many are from personal experience as a patient, or former patient, which is something scientific papers won’t necessarily give you. This link for example is my perspective as a former patient, and I’m sure many doctors (no matter how experienced) don’t know the real stories/impact…you have to live it to know it!
healthunlocked.com/pmrgcauk...
Thank you for the reply. Do you have any understanding of the average medication cost (only drugs) for PMR and GCA patients on yearly basis? My estimate is around USD 200 - USD 250 per year.
That’s a bit more difficult - GCA would be higher as doses are higher certainly initially - and once the initial dose (in either illness) has achieved its aim….to subdue the inflammation- people are put on a tapering regime….so it’s a moveable feast. That taper may take, anything between 2-6 years…and on a number of different make up of tablets.
GCA. - may start at anywhere 80mg-40mg and work down to zero
PMR - start 15-25mg - work down to zero
Current prices of different doses of meds in UK can be found here - - bnf.nice.org.uk/medicinal-f...
Then you need to add in other drugs, some to treat the illness, some to counteract the side effects of the steroids.
I could probably tell you what mine cost (with a bit of work and a lot of goodwill) but it certainly wouldn’t be average.
I was diagnosed with PMR just over 5 years ago and then with GCA-LVV not quite 2 years ago. My cumulative dose of prednisolone (UK) to date is 13,317mg! As the others have said, the mix of 1mg, 2.5mg and 5mg tablets would make it hard to calculate an accurate cost.
I've had a look at my first and last years' totals of tablets. The first year, I took 'plain' / uncoated pred tablets and the year's cost would have been around £50.
I've been taking the more costly gastro-resistant pred tablets since then and the last year's cost has been around £81. (Had I been taking the gasto-resistant tablets from the start, that first year's cost would have been around £190).
Plain pred tablets are 'cheap' at around 3.5p, 14p and 4.5p each for the 3 strengths.
The gastro-resistant tablets are 24.5p, 5p and 7p each - the price of the 1mg tablets puts up the cost when we need, say, 9mg or 4mg a day.
(Hope I've got these figures right!)
Tocilizumab (Actemra) has been mentioned. For the GCA-LVV, I have been on the injections for 18 months at around £1000 a month, I believe. I think this is a discounted cost to the NHS!
Best wishes.
£1000 per month??? In Australia, TCZ costs $40 per month, around £21.
Link to BNF costs for Tocilizumab.
bnf.nice.org.uk/medicinal-f...
Thanks, but you can only open that link if you are in the UK.
Via that link : £913.12p for 4 pre-filled pens!
To you possibly - I seriously doubt that is what the fundholder pays.
health.gov.au/ministers/the...
Tocilizumab is the third drug listed - and it is now being heavily subsidised by the government to make it affordable to you. But that isn't the true cost.
Addendum to reply - cost price only to NHS - no VAT, no handling fee etc-
Me - GCA only
1st year approx cost - £320 (US$450)
Last year approx cost - £30 (US$42)
Total approc cost over 4.5 yrs - £450 (US$628)
Average - £100 (US$140)
Thank you very much
Try asking the experts - the patients. Actually, the Eric Matteson paper is probably as accurate as you'll find for PMR. Most of them underestimate the duration but his doesn't
practicalpainmanagement.com...
There is a link to the original paper at the end of the article. His data says 1 in 5 is off pred in a year, a third by 2 years - but half take up to 6 year meaning half take more than 6 years. That really does fit with what I have seen over the past 12 years - the claimed 18 months to 2 year timescale is not accurate.
Bear in mind that the figures may appear skewed if you look at them in terms of overall population - both are conditions not often found in under 50s - confined to the elderly population really.
Thank you again for the reply. Do you have any understanding of the average medication cost (only drugs) for PMR and GCA patients on yearly basis? My estimate is around USD 200 - USD 250 per year.
Probably difficult to estimate unless patients are in a trial with detailed records of dose. I have no idea what my cumulative dose is - I take what I need and don't keep a record. Some patients need far less as a maintenance dose than others so there could be a 3 or 4 times discrepancy - many are on a long term dose of under 5mg, sometimes only 2mg or even less. Others need more than 10mg. So an "average" is meaningless.
It also depends what type of corticosteroid they are on, I have been on 15mg/day for the last couple of years. I am in Italy, I am on the Lodotra form of delayed release prednisone which works out at just under 1000 euros per year. If I were in the UK and on prednisolone (directly equivalant in dose) the cost would be far less - can't give you an accurate figure for an annual cost as I can't acces the BNF to get the figure since I'm not in the UK. There is also a major difference in cost depending on volumes purchased - the unit cost buying 1000 tablets is about half of what it would be buying 100.
The cost for GCA patients will be much higher as the starting dose required for GCA is as much as 3 or 4 times higher than for PMR.
This
ncbi.nlm.nih.gov/pmc/articl...
is a look at costs for GCA in the USA up to 2014. There are no doubt other papers out there - you seem to need to get some help in how to search, that took me a single question to identify. I'm sorry - but I'm not doing your research for you.
I'm sure you know this, but you can get a VPN set up with your Internet that 'thinks' you're in the UK. My daughter has one in HK and I often used one when travelling for work.
The free ones disappear quickly - and can't be bothered to pay for one!!! Thought about it when we went to China. There isn't much I'd need it for - and someone else will "do" BNF for me 
True...
I think that question is meaningless when put to an international audience. I probably could, with some trouble, tell you what my cumulative dose of prednisone has been since June 2015 to the present day. But I tried doing that for myself one day maybe a year ago, and tbh I gave up. I'd have to ask my pharmacy if their records for me go back that far. The thing is, I live in Canada. We do not have pharmacare. But I do have private insurance which covers a good percentage of my prescription drug costs. So if you want to know what it costs an individual in Canada do you mean the individual patient? It would be impossible for me to tell you what the drug really costs because I don't know if the pharmacy actually charges me the same, with part of the cost covered, as they would someone who had no insurance. The other factor, already touched on here, is the uncomfortable fact that probably every single person who might read your post has been on a different medication journey, so to speak. Your takeaway may end up being a recognition that PMR/GCA is one of the most idiosyncratic diseases on the planet with no truly defined total medication consumption, and with so many other factors confounding the issue even more - some of us take a PPI, others eat yoghurt or bananas. Some might add other medications to deal with other side effects attributed to prednisone, such as diabetes or bone thinning.
Not to mention the fact that in some countries pred is available if not for free to a patient, virtually free, as in the UK with its universal health care which includes drug coverage. Or in Canada, as in my case, private insurance which we pay hefty premiums for plus a small but measurable co-pay with each prescription. And those with no insurance paying out of pocket.
Some countries prescribe some vitamin supplements. Are those considered drugs because they are received via doctor's prescription? Other countries the patient is on their own, and they are not covered by insurance as prescription medications usually are. Yet Vitamin D is considered a must have for nearly everyone who takes pred so should be included in your calculations for total drug costs.
If your assignment was to choose a disease and get the information you requested, then you may have been handed a disease with no easy answers to the question, posssibly not even a useful average because our dosage changes over time, often considerably, and we are all different!
my prednisone is free but I pay an enormous fee for supplemental insurance in order to have the best care etc. so it isn't really free... In the US it is a mess that way however I think prednisone is a very reasonable drug.. compared to my husband's blood thinners which cost (even with the high payments) about $1000 a year. and for people without insurance they are of course astronomical.
Not sure this helps, anything but, you have the link for the "nice" costings and for me and me only my total intake of uncoated Pred is 4492mg in assorted 1 and 5mg tablets. This is since July 2020 when my PMR was diagnosed. You would need to add to that the cost of 1 x 20mg Omeprazole daily since diagnosis and about 6 months of a daily 800iu vit D (prescription) and a combined 4000iu vit D & 100ug vit K2 tablets ( paid by me). If you are looking at all costs then you need to add in 5 x blood tests (cost will vary depending on results asked for) and a DEXA scan. Whether mine is anything like a normal/average case I have no idea and as this is such an individual disease I suspect that there is no "normal/ average" and it would be incredibly difficult to come up with definitive answers.
Thanks for the reply. I am taking cost of PMR or GCA only. Not including supplement cost.
Do you include Tocilizumab? That costs £9-10,000 for 12 months in the UK approx.
Yes - but what we are saying, the cost of PMR/GCA mangement is not "just" pred costs because the use of pred then involves other drug costs. I'm very unusual - I take pred and nothing else for PMR but most people require at least a couple of other medications to offset perceived adverse effects of pred. Without pred they'd never come into the equation.
Just to be pedantic - would need to know how that 4492mg was made up - not all packets of Pred are same price 😳……but as yogabonnie says, cheap as chips compared to some medication.
That would be very pedantic. My spreadsheet keeps a running total but it would take a bit longer to check on my prescriptions and in reality for this to be accurate it would have to be done by every person who has PMR and GCA because we are all different!!
Know! Just playing devil’s advocate 😉….
I had realised. 🙂🙂 Be interesting to know if some of our Rheumies/docs think 4492 is a large, medium or small number though.
Heading for a 5g cumulative dose in a year would be getting a lot of them itchy - Dasgupta seems to have a fixation on 10g cumulative dose. I'm well north of 20g - and haven't self-destructed yet ...
I'm sure that YouTube webinar we saw a couple of weeks ago mentioned something about ongoing doses but I can't remember what it said. Not that it matters it is what it is and it's not going to worry me.
Prof D told us he often keeps people at 2-3mg long term as it reduces the likelihood of relapses
Found and had another look at the video by Dr Sarvanan, think he would be unhappy with us!! he aims at cumulative amount of 3325 over 18 months. John Kirwen sounds more realistic at 5295 over 18 months.
The Prof gets twitchy if cumulative is over 10000mg - but as you are still part way through you may get near that. I was around 20000mg (4.5yrs) - PMRpro above that…..but on a lot longer than most.
It is what it is!
I checked your profile and wondered where you are from? My personal experience in the states is that we have some wonderful rheumatologists doing research at some city hospitals and teaching facilities....BUT ...as an individual trying to get a diagnosis....knowledge was not abundant and had a narrow focus among professionals....except the rheumy I have now. There is no way I could possibly account for the incidence account. Too many people whispered in my ear a few years ago..."What is GCA?" in the hospital.😒😒😒
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