I’m due a medication review so can someone please remind me of the percentages for 2, 3 and 4 years for getting off Pred?
Young GPs in training are told remission after 2 years. I’m towards the end of year 4, and thought 1/2mg was good at this stage (I developed bilateral upper arm pain at wk5 of a 1/2 to 1/4mg so increased to 1mg for a week, and now beginning wk3 of 1/2mg).
It’s like talking to a brick wall, they know it’s 2 years and the patient is wrong.
The percentages are disputed - but what is certain is that the 2 years is a myth for many!
pubmed.ncbi.nlm.nih.gov/403...
Even this study in 1985 said there was evidence of two patient populations. Fewer than half of the study group were off pred in 2 years, at 23,7 months. "It was estimated that 40 percent of patients will require therapy longer than four years." - now doesn't that sound a lot more like what we meet?
And "Relapses were frequent, occurring in 56 percent of patients" sounds a lot like those patients were reduced too quickly.
"The data suggest that, although corticosteroids may be discontinued in some patients with polymyalgia rheumatica, prolonged therapy is required in a significant number." Well gosh - what do we keep saying?
arthritis.org/diseases/poly...
says "PMR may last from one to five years; however, it varies from person to person."
So there is a start for you!!!
Thank you very much PMRPro. If the GP in training hits me with the 2 year myth, I’ll give him some of what you’ve said here. I was told the ‘2 years and cured’ story by another trainee GP (or he may have been doing the 6 month in various disciplines before choosing a speciality) but I wasn’t up for the debate. Now I have some ammunition to use if I’m called a drug junky. They really need to teach med students with up to date info.
Tell them to write to Prof Sarah Mackie at Leeds and ask her opinion. And the age range - she has several patients in their 40s.
Why would we want pred? It keeps you awake, you gain weight if you don't watch your diet and leave those lovely carbs, you get a chubby face and look pregnant. But the secret is, it is the only thing that manages our disease and relieves our pain. It is the DMARD for PMR - would they tell RA patients to get off their drugs? Of course they wouldn't.
Why is this information not absorbed by those who are treating PMR or those learning to. It’s not as if steroids are the most costly drug. Why do they persist in wanting to deny sufferers relief and QOL, do they want us to suffer. What’s the point in pharmaceutical R&D if a treatment is found but then not prescribed. It’s utter madness, rant over .
Why do they persist in wanting to deny sufferers relief and QOL, do they want us to suffer.
Not intentionally, but many seem to have an irrational fear of Pred, especially when used long term as it is in PMR, GCA and/or any other disease. . So they probably think they are doing us a favour by getting us off as quickly as possible.
I don't think they see it. And they are taught to be terrifed of pred as a dangerous drug, Because that is what they are taught at a particular stage of their career - it sticks. The way the NHS works means they often don't see the cases that fail to get off pred - either because of rotations or the patients are sent back to the GP. And because so many doctors believe the short duration tripe, they relay that opinion to the Ps that B - including NICE. There are a small number of "opinion leaders" in the UK who have very loud voices and at least one of them has a long reputation as a king pin in GCA. He was - but he seems to be adding to his opinions as an expert in PMR. True his name appears on a lot of publications - but I've heard reports from patients with PMR who were under him and his appreciation of the PMR problem in clinic with patients doesn't match his public persona. And he and his accolytes don't like the other wing, including Prof Mackie, who now has to establish her credentials.
When first diagnosed by rheumatology, I was prescribed Prednisolone 15mg, Calcium D3 and AA, and told to reduce to zero over 12 months. I was told nothing about the meds, ziltch!
At a recent dental visit I was told I should not have taken bisphosphonates until I had a DEXA scan and a thorough dental examination. Further informed by the dentist that the effect of bisphosphonates last 10 to 12 years. I’m absolutely fuming with anger. 😡
And actually, that is just what they know, every time they review it, the duration goes up.
What is AA please? So that I'm forewarned! I have just been diagnosed with PMR, put on Prednisolone 15mg and Omeprazole, and am finding all this overwhelming.
Alendronic acid, the usual bisphosphonate recommended to reduce the risk of developing osteoporosis while on long term pred. There are others.
Many thanks for your swift reply.
Keep off them unless you really, really need them.
Thanks for your reply.
As you are new, perhaps you might like to have a look at this -
healthunlocked.com/pmrgcauk...
..and also have browse through the FAQs when you feel up to it…
As for AA, some have problems with it, many don’t [me for example] but do check if you really need it if offered. Request a DEXA scan….to check the state of your bones.
Thanks for your reply and the link.
I can understand your anger. Even after my Dexa scan which was fine for my age my arrogant Rheumy STILL wanted me to take AA. Fortunately I had found this site by then so was sufficiently armed with information to refuse.
Nearly off steroids...
Different Slow Drop
Reducing Pred
Morning Pain
SYMPTOMS OF REDUCING STEROIDS? 
