I've been on this site now for about 1 week, and I've found a lot of interesting information. I assume that most people on this forum are UK residents. Are there many Canadians on this forum? The reason I'm asking is this: I'm a Canadian, and the prednisone tapering that I read about here is different than what my internist has told me. He said to reduce 1 mg (from 10 mg) every 2 weeks. That would take me until Christmas--much too long for my liking! And quite a bit different from what I've been reading here! Is it that Canadian health professionals aren't as aware of PMR and how to treat it? I have a love/hate relationship with my Pred. I love that it takes care of my pain so quickly--but I hate the possible side effects of Pred--mostly that it can affect osteoporosis. So should I discuss these tapering guidelines with my doctor, or should I do as he says?
Tapering Prednisone: I've been on this site now for... - PMRGCAuk
Tapering Prednisone
Dear Rhea, reducing that fast under 10mg seems like a recipe to disaster in my opinion. PMR tends to last around two years, sometimes a bit less and usually a lot longer. It never actually goes away but goes into remission when you can stop taking the steroids. It seems that a vast number of doctors have a rather limited knowledge of PMR and they don't seem that knowledgable about steroids either it seems.
Regarding osteoporosis, a pred side effect can cause bone density loss, but not for everyone, you should have been given vit D and calcium to counteract this. You should also have been offered a Dexascan to check your starting bone density readings.
Hi Rheav, welcome to this PMR journey. The true experts will be along shortly to help you grasp the realities of pred as it relates to PMR.
I want to reassure you that the side effects of pred are not as horrendous as the package literature might indicate. I have used for 4 years, at doses below 10 mg, and my doc reassured me of few consequence at that dose.
The risk of GCA, big sister of PMR, scares me way more than the risk of low dose pred.
Kind regards, Jerri
Hi RheaV,
You're correct, most of us are UK residents, or living in Europe, but we have a few from Canada, HeronNS being the most prolific contributor, US, Australia, NZ.
From what I've read on here, PMR doesn't seem as well understood on your side of the pond, although there are a lot of knowledgeable Specialists there, but somehow it doesn't seem to filter through as well. Not sure why.
Many doctors (from both sides of the Atlantic) seem to have a love/hate relationship with Pred also. But as you will have read, so long as you have the disease, you need the Pred!
You may find that you can reduce 1mg every two weeks as your doctor requests, but if you do, you will be in a very small minority!
I'm going to repeat what I said to someone yesterday, and you may not like the answer, but I'll say it anyway because it's something you need to take on board. I'm not being nasty, I'm being realistic.
You have to understand the Pred doesn't cure anything, there is no cure for PMR, all the medication is doing is keeping the inflammation caused by the PMR controlled. You still have the underlying illness, which is a serious one, until it decides to go into remission - on its own, nothing you can do to speed it up!
If you had a broken leg, and then had a plaster put on it, you wouldn't dream of trying to run a marathon with a cast on it would you? No, you'd wait until the bone had mended itself, and the cast was off.. Well Pred is much like a cast, it doesn't repair the underlying problem it just protects it whilst the body repairs itself.
That repair may take anything between 2-6years, sometimes longer. So if you think you are going to be okay and PMR free by Christmas then I fear you are going to be disappointed.
Your initial dose is higher than you need on a daily basis, but what it does is get the built up inflammation caused by PMR under control. You then have to reduce in a sensible manner to get to the dose you actually need each day. If you go below that dose then your inflammation builds up again, and your symptoms/pains return.
You can try the doctor's tapering plan, but unfortunately two weeks isn't always long enough to know whether that dose you are on is enough to control the inflammation before you drop to a lower one. - a month is much better.
You may be okay with that plan until you get to below 7mg, which is when your own adrenal glands need to kick back in, and many find that a difficult time.
Try it by all means, but both you and your doctor need to consider that this is a long term condition - it will not be gone in 6 months.
Pred has many side effects that's true, but that doesn't mean you are going to get all of them, or even any. Uncontrolled PMR can cause your body problems, which is something people don't always appreciate. So don't demonise Pred, it's changed many lives for the better.
Thank you, DL. Not necessarily what I wanted to hear, but I guess I need to! I have an appointment with a naturopath next week--to your knowledge, is there an "alternative" approach to PMR?
No, I know it's not!
None of us like the idea that we have a long term illness, and the docs don't always help. Very often they don't understand it any better than we do, at least at the beginning, but we quickly learn.
Many of them set unrealistic tapering regimes, which puts the patient under pressure to comply- and then feel guilty when it's not achievable. Not because the patient has done anything wrong, but the illness doesn't play ball!
As for "alternative " approaches - some will help for sure, and others will give you their tips etc. But unfortunately Pred is the only sure fire solution at the moment!
Is PMR an illness, or is it a condition that we need to manage and learn to live with? Right now, I'm not feeling sick at all.
It's an auto immune disease. I am glad you feel ok on 10mg. Not many do this far along. Dorset lady's introduction to newcomers is embedded in another thread which asked for information earlier today by maggieko1. It is a clear overview of PMR/GCA so hope this helps you understand it more.
Shot in the arm DL thank you!
Where in Canada, have some contacts over there and this might be useful.
pub32.bravenet.com/forum/st...
Read everything you can, whether you like it or not, you could be in for a long haul ask for a Dexa scan and that will give you a bench mark of Bone density and not everyone bones go downhill, I was on pred starting on 60mg and five years later off pred and Bone density remained at 97% and never changed.
Get a Vitamin D test done and see if you are deficient in that, if so it causes aches and pains just like pmr and you need to exclude that. This is all in the Diagnosis and Treatment issued by the British Society of Rheumatologists and available on the website above and the BSR website.
Yes, pred comes with 83 side effects, it is well documented and some people are on it from being extremely young and that enables them to live.
I have not yet, in the past 10 years, met anyone who has had all 83 or any of those listed as rare or extremely rare. The most 8 common ones are those listed on the paper that comes with our prescribed drugs and not everyone gets them either. The classification runs from common to extremely rare. No other drug has such a long history and is so useful and powerful.
No-one in the whole world likes the prospect of long-term medication, but we are mortals and when auto-immune illnesses come along we are lucky we are alive now and have pred and people researching for cause and cure.
You will live, it is life changing but not life threatening.
Hi Rea
Welcome to the forum. You will get some great advice from the more regular contributors..just wanted to say...my tapering is 1mg per month. Very good luck. You
"He said to reduce 1 mg (from 10 mg) every 2 weeks. That would take me until Christmas--much too long for my liking! "
You will be able to reduce only to the lowest dose that manages the symptoms - you are not reducing relentlessly to zero. The pred has cured nothing - it is wiping out the new amount of inflammation which is caused every morning by the body shedding inflammatory substances as a result of an ongoing autoimmune disorder. The likelihood of you being off pred by Christmas is, on balance, very low.
But many doctors don't know as much about PMR as we do - they haven't had it themselves!
By the way - my bone density has barely changed over 7 years on pred. It is still well in normal range.
At this point I am planning to stay on 10 mg for a while anyway. With 10, I'm fine all day long, but in the morning, when I wake up, I can feel my neck muscles. So should I stay on 10 until all pain is gone all 24 hours? Or should I follow a schedule? thank you!
You will feel it in the morning because the inflammatory substances are shed about 4.30am and start to cause inflammation and stiffness which continues until you have taken the pred and it starts to take effect - which is about 2 hours after you take it.
Whether you are OK for the full 24 hours isn't as much the dose as how long the antiinflammatory effect lasts for YOU. It varies from 12 to 36 hours - if you are a 12 hour person you will find the symptoms return within the 24 hours.
Hi Rheav.
My GP recommended reducing every 2 weeks which I did from 15 mg -10 mg over 5 weeks. Once referred to a Rheumatologist he advised to reduce by 1 mg monthly. He said it should take about a year in total but I am becoming aware that this is not always the case. Over 4 months does seem too quick.
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