Another major thing the medics don’t realise about pred.

[Suzita76]

One very important fact about prednisone that GPs fail to comprehend is that the initial huge dose they prescribe for suspected GCA (before “proper diagnosis, and to save sight, strokes etc.) should NOT always be 60 mg per day, but should be no more than 1 mg per kg body weight. As a very slim, light person, 60 mg nearly killed me. Within 36 hours I was having hallucinations, weeping uncontrollably non- stop and having to be restrained from jumping off a cliff.

(More later - off to my volunteer work.)

[SnazzyD]

That must have been alarming! What did they reduce it to and did you get relief from those side effects at that dose?

[scats]

Frightening! I've often wondered about this as body weight is taken into account with several other drugs.

[Primarose]

We questioned this Suzita76 when my late mother was given a cocktail of drugs to take for various ailments. She didn't weigh more than 6 stone and was given the same strength drugs as her friend who was over 18 stone. I did mention it to her doctor who ignored me.

I read an article on the subject and it more or less stated that it was not cost effective for the NHS to weigh everyone before prescribing drugs. Cope out or what!! One size fits all! Not!

On saying that, I was asked my weight while in hospital before they gave me 60mgs of pred.

[Hidden in reply to Primarose]

They could always ask you what you weigh!

I was always weighed before Chemo as they then work out the dose before giving it! Too much & hey the outcome could be devastating to say the least!......

[Primarose in reply to Hidden]

They did ask me before they gave me the preds but didn't seem at all concerned that they were over dosing mother.

[Hidden]

Certainly that was the formula for my Son when he was little as he sometimes had Pred if he had a Chest Infection as he was/is an asthmatic, so if you are of a slight build/petite it kind of makes sense!......

[Rimmy]

The subject of Pred dose and weight has come up here occasionally and it is one which has always interested me. I am quite a solidly built woman and it did occur to me that my initial GCA dose might not have been adequate - luckily I got by. Having once had a colonoscopy and not 'enough' anaesthetic (semi-conscious but unable to move during what I felt as a very 'painful procedure) I am now emphatic whenever I have that check to tell them my weight !! - they have 'estimated' it as much lower. Another aspect to consider with Pred is that when tapering to what some consider a 'low' dose - this MUST also vary for people with varying body weights - surely !!?

Best wishes

Rimmy

[PMRCanada in reply to Rimmy]

Yes, PMRPro shared info about weight/medication ratio I believe. My GP started me on 20mg for PMR given that I was overweight and he wanted to ensure I had dose that would be effective. I’ve since lost 30 pounds, but as I taper I would if it presents problems for people whose weight stays the same but the dose is lessened. Seems to me some of us would experience more pain etc during the tapering process because there simply isn’t enough pred in our bodies.

Bioavailability also plays a role I believe (the portion of pred that is absorbed by our bodies). I never get full 24 hour relief...more like 14 hours or so.

So many factors, that’s why we seems to have differing, individual experiences to the same conditions and treatment. I wish medical professionals recognized this!

[PMRnewbie2017]

That's a very valid point. I have never understood why pred and other corticosteroids aren't prescribed on a mg per kg basis. So many other potent drugs like cytotoxics ( cancer meds) are prescribed this way, but with the exception of babies and the very young, steroids are just prescribed on an "average" dose basis.

[piglette in reply to PMRnewbie2017]

For GCA weight normally is taken into account going from 40mg sometimes up to 100mg. For PMR again weight is taken into account or should be, as the pred amount is small the weight ratio is not so much of a problem, but the range is 12.5-25mg and normally a rheumatologist would give larger builds 20mg starting dose while normal builds would get 15mg. Weight is the important factor not how bad the PMR is. I do agree it does seem to be a bit hit and miss with some doctors though, but I think that is a lack of training.

[Jackoh]

Too true!

[clieder]

This is really food for thought. I am treating a flare and have had a lot of trouble getting the level of control of the pain that I expected in having to go all the way up to 20 to get relief and then down to 15 mg. At 15, I am still prodding myself out of bed with hips, shoulders and neck pretty non-functional. When I first was diagnosed with PMR/GCA, I was given only one dose of 60, then 40 and then was able to get down to 10 quite quickly and tapered slowly from there. However, I was 20 pounds lighter then. Might this be why the 20 and 15mg doses are having less effect? It's a good question.

[PMRpro Ambassador in reply to clieder]

And why the latest recommendations say "lowest effective dose in the range 12.5-25mg/day". That is for PMR - the starting dose shouldn;t be above 30 and only 30 in exceptional cases.

GCA is a different kettle of fish and normally 40mg is the starting dose UNLESS there are visual symptoms and then higher is normal - because visual loss is possible and irreversible. There 100mg i.v. isn't out of the question - but is given in hospital under supervision, just in case.

[MamaBeagle]

I was diagnosed in France and was given 1mg for every 2kg of body weight - my doc actually rounded me up a bit - 30mg for a couple of weeks then down to 20mg - knocked the PMR on the head and I've had a lucky run down the doses................until 3 then had a flare so up to 7mg now tapering and am happily on 6 doing the DSNS which I told my GP I intended to do..........

[piglette in reply to MamaBeagle]

Maybe doctors are better trained on polymyalgia in France. Sounds like you have a good one.

[MamaBeagle in reply to piglette]

Ah! I was in France at the time....now back in UK but my GP is very obliging and it's he whom I have told just how I'm going to manage my PMR! Well I'm managing it with lots of help from PMRpro, DL et al....lots of people come up with lots of really useful info

My UK GP was actually really interested in the French protocol!

[piglette in reply to MamaBeagle]

That sounds like an incredible GP. Oh that there were more around. My GP has just left thank goodness and I was talking to my hairdresser about her. All the people who had visited her said to my hairdresser they reckoned she was rubbish.

[PMRpro Ambassador]

It isn't as simple as a straight ratio of weight and dose. The bioavailability must also be considered - we absorb between 50 and 90% of the dose we take. To know how much they would have to do some fiddly tests. Then there is a variable duration of antiinflammatory effect. But there is a maximum dose for GCA - unless the disease activity is such that extra is required to reduce the inflammation rapidly to reduce the risk of sight loss. And some people develop mental symptoms at even PMR doses.

[tgca]

Having been suspected of having GCA by A&E, my local elderly gp gasped at the bloods results but prescribed only 30 mgs of pred. The effects transformed me from a total wreck into a slightly frantic human but I was almost totally relieved of all symptoms within a day. Thank you gp for not over prescribing... she certainly seemed to know what she was doing in my case. So sorry to read of your suffering.