Daily Mail

[Dovelady]

There is an article in the online Daily Mail about PMR and steroids. I don't know how to do a link but it should be easy enough to find. Maybe someone more adept at Computery Stuff could do that. 

[Dovelady]

The headline of the article is Ask The Doctor.

[Rusty8]

Hi was just going to ask if anyone could help me out 

Was told in November I had pmr given steroids and that was it haven't a clue what it is all about except I believe it to be inflammation 

Will have a look to see if I can find that on Internet although not very good at those things but will have a look 

I have learnt more from here but still unsure wether to increase steroids as was told to lower them but I did it at the time to big a decrease and was in a bit of a state because this doc never told me the amount 

Seen another doc he said I had done it to quick 

So at moment not to bad 

If you have say ostoporosis spelt wrong lol does the steroids help with that pain or does it work on pmr only thanks if anyone can help 

[Dovelady in reply to Rusty8]

I think you will learn all you need to from this group. The DM article is very short but at least it gets the word out, in my experience most from have never heard of PMR and think steroids are something to do with bodybuilding! There are some far more experienced folk in this group that will answer all your questions and worries. We are all in this together!!

[Celtic PMRGCAuk volunteer in reply to Rusty8]

Rusty, steroids are prescribed for certain other inflammatory conditions, plus asthma and kidney disease,  but if you have a diagnosis of osteoporosis then you will need to be on medication other than steroids, ie bisphosphonates for example.  If you haven't had a DEXA bone density scan then you should request one to rule out any bone thinning, especially after having been on Prednisolone for 5 months.

[Celtic PMRGCAuk volunteer]

Thank you Dovelady - here is the link to the article in today's Daily Mail:

dailymail.co.uk/health/arti...

Although most of us are more familiar with a starting dose of 15mg Pred as opposed to the dose advised in the article, I do know that some medics are increasingly suggesting that a lower dose will work.  Pity Dr Scurr didn't take the opportunity to refer to the need to lookout for the linked condition GCA.  Still any advertising is welcome - it might just provide an answer for someone's pain who might be reading the Daily Mail today.

[DorsetLady PMRGCAuk volunteer in reply to Celtic]

Hi Celtic,

Must admit I was surprised by the starting amount, okay I suppose if diagnosed early enough, but how often does that happen? 

I know that many GPs see Pred as a necessary evil, but would have thought that starting at a lower dose just prolongs the process of getting off them. Surely a lower dose doesn't control the inflammation so effectively from the start, leaving the patient more susceptible to a flare? 

Is this new thinking the result of a study of patients? 

As you rightly say, the doctor missed an opportunity to mention GCA, but as we know they are restricted to a limited number of words per article. 

[Celtic PMRGCAuk volunteer in reply to DorsetLady]

Mornin' DL, I guess it might just depend on the level of inflammation present, but I will be having an opportunity raise this subject of starting dose with my rheumy later in the year when he comes to talk to our support group and will report back!

[PMRpro Ambassador in reply to Celtic]

In fact Celtic, the most recent (2015) recommendations are saying to start with the lowest dose that works in a range 12.5-25mg/day - and they are coming round to idea that starting a bit higher may actually lead to a shorter period of requiring pred. They also dispute the concept of it "confirming PMR".

This is one of the better Dr Scurr articles - many are very wishy-washy and I did write to him once about a totally inaccruate article! No response - there's a surprise. At least he apologises for his previous misleading statement. He should have emphasised that it is horses for courses - but at least he points out here that you need pred for a LONG time. 

Pity about all the younger ones who are obviously taking it for something other than PMR...

[Celtic PMRGCAuk volunteer in reply to PMRpro]

"...........the most recent (2015) recommendations are saying to start with the lowest dose that works in a range 12.5-25mg/day".

Yes, the Prof stated at one of our meetings that whilst 15-20mgs of steroids is the recommended starting dose, anything between 12.5 and 25mg can be used as an initial dose, adding that there is absolutely no necessity for using higher starting doses in PMR.

12.5-25mg/day is quite a broad range so leaves quite a choice for rheumies and GPs to take their pick! 

One highly recommended rheumy is of the opinion that a 10mg starting dose can work.

The problem is that we don't know in advance what is "the lowest dose that works" for each of us individually until we have started it! 

[PMRpro Ambassador in reply to Celtic]

"One highly recommended rheumy is of the opinion that a 10mg starting dose can work."

It CAN, whether it will for ME is another matter...

I think the idea is that they should start about 12.5mg and go up until there is a response - and it's OK to go above 15 but NOT above 30 for PMR. Which is a bit different from what they have been saying. There should also be some consideration of the dose relative to the patient's weight - the study that said 12.5mg achieved a response in 75% of patients within a month commented on the fact where it worked best was in small and dainty ladies.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

That rules me out then!!! 

[Dovelady in reply to DorsetLady]

Me too!

[Celtic PMRGCAuk volunteer in reply to Dovelady]

"Small and dainty" - those were the days!!

[paddyfields in reply to PMRpro]

"small and dainty" eh.  Obviously the finest scientific minds of the day   have been brought to bear on the data. 

This made me laugh out loud conjuring up as it did for me

some dusty forgotten corner of the scientific world inhabited by dotty old professors and their dainty  or otherwise subjects.  I wish I could draw - it would make a good cartoon.

[PMRpro Ambassador in reply to paddyfields]

They were Italians...

[Doralouise77 in reply to Celtic]

I was started on only 10 mg by a very experienced rheumy and it was a miracle. 

[Celtic PMRGCAuk volunteer in reply to Doralouise77]

animi, that's great news - hope the "miracle" continues.

[Doralouise77 in reply to Celtic]

Well it lasted for a year celtic, and was down to 6 of Prednisone,  markers good,  symptom free.......but it was too good to last,  was hit with GCA and have had /still having a rough time.......

Cheers 

[Celtic PMRGCAuk volunteer in reply to Doralouise77]

Animi, I'm so sorry to hear that.  I do so empathise with the shock of that because I, too, succumbed to GCA after a year of PMR, although for me the latter was undiagnosed therefore untreated for that first year.  I eventually reached remission and zero Pred so hang in there, you will get better.

[patsy69]

Aware that I tick  like because info . Is helpful  ,not, because e it is a cheerful thought .

The biggest fear for me at present is of getting GCA which seems worse than PMR.  also so unpredictable.  patsy69