How gently should I taper? Last Fall I was started on 15 mg and tapered 5mg a week and was a mess. My GP decided prednisone didn't suit me. Because I am so crippled by PMR, I asked to try again, but at a lower dose as I tolerate drugs badly. She gave me 10 mg to reduce to 7.5 after 2 weeks. I actually started myself at 5 which is controlling my inflammation. How long should I remain on this dose to stabilize? I also want to reduce very slowly - perhaps 1 mg a week. Any suggestions before I have to discuss it with her?
She is very against pred because of my bones. However, I am 81 and have lost NO height since 20. I have osteopenia, but when I had back surgery, the surgeon commented on the excellent quality of my bones. I would rather get my PMR controlled.
Many thanks to you all. You are a wonderful support. Jane
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Jane424
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It would seem that your doctor doesn't really understand PMR - you cannot taper 5mg a week and expect to feel okay...you may be able to with other conditions like asthma or COPD, but not PMR. PMR is not a short term illness, it's long term, at least 2 years, very often longer. No wonder you felt dreadful.
However I would say that is not necessarily due to the steroids side effects (some might be), but because your underlying PMR was not controlled.
Why did you GP say Pred didn't suit you, more likely her regime of tapering didn't suit you...the Pred was not given a chance to do what it's supposed to.
You say 5mg is controlling your inflammation, but then ask how long you need to be at that dose to stabilise which suggest you still have issues/symptoms..is that correct? Plus reducing at 1mg a week is not "very slowly" - in fact the exact opposite.
In reply to your statement " I would rather get my PMR controlled." - then my response would be - you need to be on the correct dose of Pred.
Thanks so much for clarifying. I do feel stable on 5 mg. It worked the first day. I have only been on it a week so far. I know she is very anxious to get me down as she doesn't like pred. I originally asked for 5 mg and then 1 mg a month taper, but she was set on coming down 2.5 a week. Are there any guidelines I can show her?
I always have to start low with drugs and taper slowly - same with pain meds. My PMR feels stable and want to keep it that way. At 81, am more concerned with current life than future bones. I made the same decision with my cancer treatment. Quality not quatity. Bless you. Would be glad of any further insight. Jane
These are the guidelines that the charity refer to….and although they are published by British Organisations they are generally followed world wide - pmrgca.org.uk/wp-content/up...
There are newer recommendations- but only vary slightly - this is European and American -
I am just appalled at the lack of knowledge of your GP. If they diagnosed PMR and prescribed steroids, what on earth were they basing this on? To suggest you should go from 15mg to 0mg in 3 weeks is gob smacking. A minute or two to look it up would have told them that they had got is absolutely wrong. Steroids have been around for over sixty years so they can’t be that bad. 15mg is a low dose. PMR is a chronic illness, it is not like a head cold.
Bless you! It all happened over Christmas and so I couldn't get hold of my GP and ended up in Emergency. Now I have to tactfully educate her! Many thanks. Jane
She thinks she knows and told me I couldn't have PMR because I could raise my arms. She also told me my blood work was normal when the lab flagged my ESR as high.
Oh that is rubbish! I could hardly move, was nearly ready to stop driving, by the time I was diagnosed, but I could still raise my arms. I could do yoga and physio exercises - but getting down onto the floor and especially getting up afterwards, were nigh on impossible! One size definitely does not fit all when it comes to PMR. Is your doctor quite young and perhaps hasn't had many patients with PMR? The doctor I had when I was getting quite sick was a young woman and I don't think PMR crossed her mind. I also had raised markers and was told my bloodwork was fine. I was also very low in iron and I asked specifically about that as it has been a recurring issue in my life and she said that was normal. I had x-rays and she said I was full of arthritis. But when I looked at the report for myself there was no sign onf arthritis in my hips, although I had so much pain I was considering getting myself referred for a hip replacement!
I wonder where these doctors go to school because they really should be taught something useful about one of the most common causes of chronic pain in the elderly.
So very sorry. It is so despairing when they insist on the wrong thing. I had similar with multiple myeloma. I didn't have it in my bone marrow or bones but an abdominal mass. I begged for radiation and only offered chemo which did no good. Finally, I refused more chemo and they agreed to radiation as a last resort. It worked and I am clear now.
I know it's incurable and mine is a very rare presentation, so they have told me they can't give me any prognosis. However, for the last 18 months, my IgM has flatlined. The first thing I did with the PMR was to query with my hematologist and he said no, but could well be wrong! Can you give me any more info? Many thanks. Jane
Not really I'm afraid - just that multiple myeloma can cause PMR-like symptoms in its own right so it IS a differential diagnosis. And when you have a "flare" that doesn't respond to pred the way it should, then other options MUST be ruled out. When hesad no - in what basis was that?
I live in Canada. Definitely had PMR symptoms by 2014, maybe earlier, in my mid-60s, 74 now. In 2015 my new GP diagnosed me with PMR, ran more tests to rule out other things, which my former doctor had not done and had not diagnosed me either. She started me on 15 mg which as it worked brilliantly I stayed on for one month. At that point I was told to taper by 1 mg per week (yes, others will say this is too fast) but I was to stop tapering if there was any return of symptoms. At 9 mg there was a return. I stayed on 9 for longer than a week but as it didn't improve, in fact slightly worsened, I went back to 10 for about three weeks. At that point I started using one of the slow taper plans I learned about from a forum similar to this one (found HU a little while later). I did pass this by my doctor to get her approval, but I would have followed the plan anyway. I was down to 3 mg by the end of the first year, and halved that dose again after another year, I regret to tell you that I am still on pred, but most of that time I've been at or about 2 mg. I have been really lucky that once I was finally diagnosed I have had compassionate and sensible care from both this GP and my current new GP as well as a locum partway through.
I protected my bones by using a few supplements, notably Vitamin K2 (not K1), and doing load-bearing exercise (mostly walking, sometimes with Nordic poles, sometimes with a weighted vest), I also took up Tai Chi. My doctor wanted me to take alendronic acid but I refused. I lowered pred-induced elevated blood sugar by being very strict about my carb intake, practically elimiinating "white" carbs until my dose was very low. I eat plenty of plant-based protein, dairy and vegetables.
" Last Fall I was started on 15 mg and tapered 5mg a week and was a mess"
Which really is hardly surprising!!! You have a chronic condition - that's for acute use.
Below 10mg not more than 1mg per MONTH! SHE may not like pred - but it isn't HER PMR and it is a chronic disorder which requires pred management for upwards of a year - with only a third of patients being off pred in 2 years. And pred is the mainstay of management - unless you are somewhere with access to tocilizumab for PMR which I doubt is the case in Canada.
Your doctor needs to overcome her prejudices - it isn't what SHE fancies, it is what the illness requires,
Omg . I’m shocked . So sorry you are dealing with this and having to tiptoe around her to get proper treatment . As a nurse and now a Takaysus patient! I now have huge respect for prednisolone - I never quiet got what steroids did before this ( despite giving them in the ICU daily !) until I really needed them myself and they were like a cooling blanket to my body . You can bet if this GP was diagnosed with PMR she would change her tune very quickly and not be in such a hurry to taper. It’s quality of life that is priority for you now - you have been through a lot - not being in pain is priority .
( My dad has GCA -85 - lost his sight - he is still on 5 mg of pred after 8 years - took him years to get to 5mg - and is doing great ) ( genetics!!! even tho my Rheumy says there is no def genetic link !!)
I hope you can get her to listen to you and if she doesn’t can you transfer to someone else ?
There isn't a definite genetic link but you share the same gene pool as your father and that is what makes it more likely you will develop it. However - better people than me think genetics has a role to play:
Yes I def think we just don’t know it all yet 😊, my last nursing job was with a genetic research company - looking at the genetic markers in chrons /UC - very interesting . think in all disease we are only at the beginning in this field . I’m going with it’s too much of a coincidence !😅 Now 3 in my family with auto immune.
Bless you! It is odd she is so resistant as my hematologist is pleased I am on pred with myeloma. Not easy to find someone else - and would they be any better - at least she knows me. Thanks.
“- I never quiet got what steroids did before this ( despite giving them in the ICU daily !”
I think that’s the fundamental issue with lots of medical people….and understandably so, if you have haven’t taken a drug you don’t realise exactly what it does ….and steroids are used so different in PMR (or TA in your case) to other illnesses.
For some reason there seems to be a hate/hate relationship with many doctors and Pred , but if gives so many ppl their lives back…don’t knock it until you’ve tried it!
Inflammatory diseases are not necessarily hereditary like some illnesses, but there certainly can be an environmental/familial connection…as testified by many on here.
Hi, I started at 15mg a year ago & have been tapering very slowly after the initial month at 15mg. I am tapering at 0.5mg per month & am now at 6mg. Good luck
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