I saw my GP today and she told me the rheumatologist had recommended the following taper: Starting from 20 mg, reduce 1 mg every 2 weeks. The GP mentioned several times that she felt this was VERY slow. I, on the other hand, was very relieved as I thought she might try to rush me on this. It seems different from other tapers I have heard about. I will see how it goes and let you know. She is leaving it up to me to increase again if necessary and to try to find out if I can taper to O or at what level I need to maintain.
My recent sed rate was 35 elevated slightly from previous but GP said might have been due to my fall and straining back muscles. Have had a lot of trouble with my back but it seems to be gradually improving and pmr pretty much under control at this time.
(Winnipeg, Canada, 76 years old)
Hello Mrs L all the way from Winnipeg!
You don't say for how long you have been on 20mgs but you do say that your blood tests were slightly higher than previously. Most of us do not reduce until the blood levels are stable.
As you say, your sed rate may well have risen slightly at the last test due to your fall and certainly I had a couple of falls which seemed to trigger off symptoms in my spine followed by raised markers.
I have both PMR and GCA and 3+ years ago started on 40mgs which was reduced weekly (they have to get you down from what my rheumy called an \"industrial size dose\" to reduce side effects) to 30, then 20, then 15, then 12.5, all reductions following blood tests showing that the initial inflammation was under control. The reduction was then slowed slightly to fortnightly, staying on 12.5 for 2 weeks, then 10 for 2 weeks. I was able to continue reducing monthly thereafter by 1mg but not without a few of those pesky flare-ups necessitating increasing back to 10 on a couple of occasions! I am now on 2mgs and starting a slow taper to 1.5 (much more difficult to reduce below 5!).
Following my experience, I can understand why your GP feels that the rheumy's advice to reduce by 1mg every 2 weeks from this high dose is very slow, but if you and he/she decide to do it a bit faster then I feel sure that will be fine as long as the inflammation is well monitored by the blood tests and showing to be under control.
Do hope this has helped but do let us know how you get on.
Very best wishes,
MrsO
Thank you Mrs. O for your reply. I appreciate all the helpful advice you provide on this forum.
In answer to your question, I was on 20 mg steroids for 2 months. Since I didn't get back to the doctor when planned, I took it upon myself to reduce to 15 mg which I have been on now for 3 weeks. This was before I got the recommendation to reduce by 1 mg every 2 weeks which I will be trying now (reducing back from 15).
My first round with pmr went like this. I was first diagnosed 2 years ago and went from 50 mg to 5 mg in 2 months, then stayed at 5 mg for about a year and tapered from 5 to 0 in 4 weeks. After being on 0 for about 8 months there was a relapse. By then I had a new GP and about 2 months going through lab tests, ultrasound and back to the rheumatologist before starting on 20 mg.
A bone density test last year indicated osteoporosis so that is a concern.
Hello again Mrs. L.
To say I'm amazed that 2 years ago on your first bout of PMR you reduced from 50mg to 5mgs in 2 months is an understatement! As for how you managed the final reduction from 5mgs to 0 in 4 weeks that must be a first on this forum! However, if you were symptom-free and produced normal blood test readings then that sounds like some sort of miracle recovery. Your very fast reduction points to the reason for a relapse after only 8 months.
Perhaps you should try and get ESR and CRP blood tests prior to your reductions this time around just to ensure that the inflammation is being kept under control.
When we get down to 10mgs, it is recommended that we do 1mg a month reductions to 5 (symptoms and normal blood test results permitting) and then 3 monthly reductions of 1mg and some of us have to taper these last reduction very slowly indeed.
I can understand your concern about the osteoporosis diagnosis and hopefully you have been prescribed bone protection medication. I have been told that although there is a risk of osteoporosis on the higher doses, this reduces as the dose reduces. Certainly my experience has been that at the outset of PMR my bones were normal but 3 years down the line I have osteopenia of the spine (the pre-osteoporosis stage). I am unable to take the bone protection meds as they would cause harm to my kidney which has a reduced function (I had the other kidney removed as a teenager). My bones would have been at high risk as I commenced on a high dose of 40mgs. I have just been told by a physiotherapist today that when I come off the steroids my bones will improve again, but I'm not sure about that.
My best advice would be for you to ensure you have a high intake of calcium in your diet and lots of oily fish - I have milk and a live yoghurt daily and oily fish such as sardines, mackerel, salmon, trout 3/4 times a week. The next best advice is to get out in the sunshine for the Vitamin D to benefit your bones......not much hope of that in this country at the moment I'm afraid where we are still cold and turning the heating up!
Very best wishes.
MrsO
Mrs. L.
Sorry, I wanted to refer you to a particular website but was unsure of the exact name of the website when responding to you. You will find a load of information that will answer most if not all of your queries:
www.PMR-GCA North East Support Group.
Hope this helps.
MrsO