RESEARCH Best studies regarding GCA and PMR - PMRGCAuk

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RESEARCH Best studies regarding GCA and PMR

shazstep profile image
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I wish I knew more. I found out yesterday that an uncle had GCA. (Not related by blood), unaware if he also had PMR. I will discuss with my cousins who informed my brother of this. My Uncle was cleared of the disease after treatment.

I now wonder if it is relatively easy to cure GCA but not PMR. If you have GCA and not PMR is the reduction of steroids much quicker? Which disease is most likely to recur?

I am totally unaware if there has been studies along these lines. If anyone has uncovered research regarding this please send me the link.

I hope you are all coping and achieving more each day.

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PMRpro profile image
PMRproAmbassador

There are likely to be few such studies - they cost quite a bit and require funding which is increasingly difficult to get.

There is such a variation - there are people who are through PMR and off pred in a year, there are others who are still on pred after 10 years or more. GCA does seem, anecdotally at least, to be more likley to go into remission and allow patients to get off pred - I'd say from experience over more than 10 years that 4 to 5 years is a common duration of GCA, two studies have suggested that about 6 years is an average duration for PMR. And patients for whom there is a component of PMR in their GCA seem to struggle more to get off pred.

But I know of some patients with GCA and others with PMR who got off pred in the oft-quoted 2 years. no hard and fast rule at all.

Sefu profile image
Sefu in reply to PMRpro

Hi how much do such studies cost (roughly!) ?

PMRpro profile image
PMRproAmbassador in reply to Sefu

Depends what sort of study is involved. A basic study doing a survey could be financed with a couple of thousand pounds depending on how big and how long it took to identify and analyse numbers of patients/symptoms. But that would be to assess whether a much more detailed analysis was needed. A study like that was done to get the paper about ears and hearing being part of GCA - one of the charities provided enough money for the first stage which showed there was a need for a more detailed study and NHS money was applied for successfully. I don't know what the budget was though.

Studies that require long term observation of patients and medical input cost a lot more.

They don't come to the level of clinical trials for getting a drug or vaccine approved though - depending on the size again, the median costs could be between 20 and 30 million dollars.

This explains what things need to be budgeted for

trialsjournal.biomedcentral...

but it isn't just the cost that may stop a study but whether it is considered to be required by any of the funding bodies approached. Some charities have lots of money - especially the bigger "sexy" sort relating to cancer or children, donations there are relatively easy to collect and can fund studies in their field. Others aren't so lucky,

Sefu profile image
Sefu in reply to PMRpro

Wow 20-30 million for just a single clinical trial. I had no idea. Thanks !

PMRpro profile image
PMRproAmbassador in reply to Sefu

People don't - we get loads of people demanding that studies be done on PMR/GCA. They don't offer to fund them though!!!!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

There is no cure for either, they are both managed by Pred primarily - with GCA needing much higher doses.

Your uncle was not cleared by the medication as such; the disease is self limiting so it goes into remission by itself, all the Pred does is manage the inflammation caused by both illnesses.

The reduction is certainly quicker at high doses, but once you get to around 15mg (starting dose for PMR) is does become much the same pace.

GCA seems rarely to re-occur but some patients do get PMR after, before or during PMR.

So as PMRpro says no hard and fast rules.

Me GCA for almost 6 years, in remission (we don’t say cured) for over 3 years.

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