Is it possible they “want you off it” to avoid deterioration of hips and knees? My mom had PMR and got avascular necrosis and had a hip replaced.
I cannot believe the number of joint replacements that the good people on this forum have collected. WAY above the norm, IMO.
That’s why I’m TRYING to stay off prednisone even though I still have hip stiffness. If NSAIDs (Aleve=naproxen) relieve the aches, they aren’t PMR. I hope.
But the first couple months off pred were a real roller coaster. About a 3-day cycle of feeling good, feeling bad and considering asking for a referral to a Rheumatologist, then feeling better.
Most days now (almost 4 months pred free) I’m feeling better. And my husband even noticed I’m not walking like an old lady anymore. (Except when I get out of the car after a longish drive!)
BTW, my taper was exceptionally fast - a month each of 15,10,9,8,7,6,5,4,3,2,1,0. Standard taper according to my (American) doctor.
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OutdoorsyGal
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From my own view - I had osteoarthritis pre GCA - in the family I unfortunately. Whether Pred made it deteriorate quicker I don’t know, but my sister has it worse than I do and she’s never taken any Pred.
Plus you must remember most of us, not all agreed, are in the age group where a replacement joint is quite likely.
On my two sojourns into hospital for knee and hip replacement I only met one other patient who was on Pred, so maybe it’s not to blame for every other complaint we have.
Well done on your tapering success, but I would also suggest that most people who have a “standard taper” with PMR probably have little need for the advice/support provided by this forum. So maybe it doesn’t give the true picture of the average GCA/PMR patient.
And no, if NSAIDs are relieving pain it’s not PMR.
" I would also suggest that most people who have a “standard taper” with PMR probably have little need for the advice/support provided by this forum. So maybe it doesn’t give the true picture of the average GCA/PMR patient. "
I've been wondeing about this as OH's GP is expecting him to reduce from 10mg pred at the rat of 1 per month.
There's no rheumatologist input (she died following an accident) and he's reluctant to press for a referral. To date no apparent problems re withdrawing.
Actually the 1mg per month below 10mg is written in the guidelines. However, although most doctors seem to read that they don’t necessarily read the paragraph which says tapers should be tailored to individual patients circumstances!
I would suggest if OH’s symptoms are returning he’s maybe gone just below the level he needs on a daily basis. If they are only just returning if you act quickly you may be able to stop the trend. If you know the level he last felt okay go back to that, and see if they resolve; if not he may need to go slightly higher.
Find the levels he’s good at again - then suggest he does a reduction of 0.5mg a time. If you have no Rheumy is your GP sensible enough to listen to that?
Even if he persists with 1mg a month, OH could still try 2 tapers of 0.5mg at 2 weekly intervals - that way it’s easier to pick up when enough becomes not enough!
Obviously once in singles figures a 1mg taper becomes bigger in percentage terms, so tapering very often becomes harder rather than easier! Any thing doctors don’t always “get”!
***** just found -
Para 5 of guidelines-
5) We recommend initiation of low-dose steroid therapy with gradually tailored tapering in straight- forward PMR (B).
In the absence of GCA, urgent steroid therapy is not indicated before the clinical evaluation is complete.
The suggested regimen is:
. Daily prednisolone 15 mg for 3 weeks
. Then 12.5mg for 3 weeks
. Then 10mg for 4–6 weeks
. Then reduction by 1 mg every 4–8 weeks or alternate
day reductions (e.g. 10/7.5mg alternate days, etc.)
However, there is no consistent evidence for an ideal steroid regimen suitable for all patients. Therefore, the approach to treatment must be flexible and tailored to the individual as there is heterogeneity in disease course. Some benefit from a more gradual steroid taper. Dose adjustment may be required for disease severity, comorbidity, side effects and patient wishes.
The returning symptoms are the aches and stiffness of the Osteo-Arthritis which was present well before onset of PMR and had been masked by the higher doses of pred (he says)
Yes, I would agree with you. I just started the reduction from 10 to 9. It did not go well. I will go back to the 0.5 reduction.....9 1/2 for the rest of the month.
To echo DL - if you look at all the guidelines of whatever source the codicil that the reductions must be tailored to individuals and symptoms is always mentioned somewhere. Quick and co (I think) mention that reducing at more than 1mg per month is predictive of relapse/flare.
But doctors ignore the bits that they don't like ...
My doctor put me on Naproxen before diagnosis. It did nothing for the pain. Then I had my diagnosis and put on Prednisone and the difference was miraculous.
What I don’t understand is why doctors are so keen to get us off so quickly. As I understand it Pred doesn’t cure the disease so coming off it means the disease is still there. For example if you have diabetes you are not told to come off insulin because the diabetes is still there.
Sorry if I am not explaining my self well. Had a bad night not with PMR but heart burn and stomach. Mi think the pineapple I ate for the inflammation was too acidic.
I agree. I think there are other drugs they want us on that can be just as, if not more, damaging- ppi, aa, statins. Pred seems to be the least of my problems.
Docs seem to have this hate relationship with Pred over and above all other medication.
Yes it does have side effects, we all know that, but what powerful drug doesn’t.?
I think two reasons -
a. they don’t fully understand the nature of PMR or GCA, and don’t like the uncertainty of its lifespan - they want a positive end date! We wish! and
b. very often steroids are given on a short term basis for other illnesses, like asthma, so they can’t get their heads around a long term prescription.
I think you have hit the nail on the head. I'm taking the dose I am because of the a/f - now THAT is a new use for pred!!!!
What dorset lady said. Age group, pre existing oa, perhaps even pmr/gca vis a vis vascular issues, referred pain and/ stiffness that misaligns joints causing joint and ligament damage from oa and pmr.. Some may be due to the ligament looseness that pred can cause (? Doesn't it?). I have golfers elbow caused by throwing my dogs ball with a ball thrower. But 3 years ago i couldnt even raise my arms enough to throw it. I may need knee surgery at some point but thats pre-existing oa and is the site of two injuries - a broken leg and chipped patella.
You may be a lucky person where pmr is concerned (& hope it continues for you). I started 15mg taper at 1mg a month and by 8mg my ESR CRP were higher than at diagnosis and i was almost bed bound....again. There is not a chance i that could follow that taper even if i needed all my bendy bits done!
I disagree about the numbers - as I said on the other comment: maybe you mix in the "wrong" circles. I've been involved in PMRGCA forums for over 10 years and while there have been a few joint replacements recently it hasn't been a particular factor before. Most of the people have had a history of OA long before PMR or GCA. It goes with the age group.
I was told I had OA rather than PMR by the first rheumy I saw - some 14 years later, after nearly 9 years of pred there was absolutely no sign of OA in that knee.
As the others have said - this is a very skewed population but amongst my personal acquaintances outside the forums there are quite a few joint replacements - none of them have a history of pred use.
(I hope it really IS over! I still have hip stiffness, and other aches - new to my awareness, but maybe OA was lurking in the background pre PMR - that NSAIDs “fix”.
But I really overdid it the past few days with yard work and am paying for it today!)
And then there was the gentleman who expounded to all and sundry at a support group that his PMR had been over and done with in a year and he'd had few problems. However - his WIFE said that was rubbish, he'd been on pred for over 3 years and had complained bitterly about the pain and stiffness!!
It is certainly said so - obviously there are some who have a tougher time but generally it does seem like that. Even some rheumies admit it. And they wonder if hormones have anything to do with it.
My standard American taper failed immediately. My rheum doc was open minded when I said I wanted to do a much slower taper based on the ideas in this forum and supported my efforts. I’m at 3mg after 3 years.
The only person I know who got off pred in about a year was a male neighbor of my mother.
I don’t even KNOW anyone (in real life) who HAS PMR. (Well, maybe I do, but they haven’t mentioned it, and as we all know, you can’t tell by looking!)
It’s so helpful to have the wonderful people on this forum to bounce things off of.
Yesterday I had lunch with a friend I hadn’t seen in awhile, and she made the mistake of asking “How are you doing?” on a day when I was hurting from overdoing. I unloaded on her while she listened patiently, then she disclosed her own recent battle with breast cancer.
Oh yes. The friend who was my support at diagnosis last August is now taking her final short journey with acute leukemia. When she asks how I am...I can only say okay. All relative...still hard though and sometimes I'm ashamed to say, I almost envy the close family support in her terminal illness. PMR is not life threatening however it is lifestyle changing and that takes some adjusting too.
I think there was a some have a tougher time in there....
😉
My friends husband had temporal arteritis for well over 10years. He never got under 10mg. Sadly he had a spontaneous leg fracture. Not the pred but secondary bone cancer from prostate cancer. He was 85. His mother had it too.
I’m one of those waiting for a total knee replacement at age 56. My right knee MRI showed OA and by then had been diagnosed with PMR 2 months prior and was on pred during that time. My ortho surgeon said my knee issues were due to a number of factors. Being overweight most of my life, a former sports injury, OA, and likely the 6 months of unchecked inflammation prior to my PMR diagnosis (1000mg of Naproxen a day for 6 months barely helped). He never mentioned pred being a contributing factor at all.
I do think that PMR continues to chug away in the background attacking our major joints, which causes issues and makes existing mechanical, organic issues worse. Yes the pred reduces inflammation, but PMR is still active. I’d welcome others’ ideas on this, as I may be off the mark.
For me, pred has not caused me much grief, just a few minor side effects. Actually it has been invaluable in my treatment of this condition. Too bad doctors couldn’t adopt a more realistic opinion of pred, and approach each patients experience with this medication on a case-by-case basis. My GP saw that my dexa scan was good, no increased blood pressure or diabetes, no weight gain, and encourages me to get down to 5mg (not 0). I taper at my own rate. This would likely different f I was having more adverse effects from taking pred.
I am really hoping that you continue to have your condition in remission. Glad that your taper was uneventful. Fingers crossed!
About a year and a half ago I injured my knee and after lots of x-rays and other tests orthopedic surgeon recommended total knee replacement. It was not based on recent injury, but the fact that I had ACL reconstruction before and at the same time more then 50% of meniscus was removed). We had a long conversation on benefits of the surgery vsa not doing it and I decided that I would try rehabilitation first and see if it helps. After about of couple of months of rehab, the pain was gone. I am still going once or twice a month and knee is getting better over time. Still see the same surgeon every 3 months for consultation, and every time he mentions total replacement, but he is not as convincing as before...
I am not saying that you should do the same, but I am a strong believer that our bodies can recover and adopt much more then we give them credit :).
Thanks for your response. Glad you were able to choose a path moving forward that works for you.
Unfortunately, for me, the latest xrays and MRI revealed multiple meniscal tears, ACL completely torn (only a thread remaining), advancing OA with continued bone-on-bone area that is getting larger, deteriorating cartilage, and a large bakers cyst. My surgeon held up my last 2 xrays (from Feb/18 and Jan/19) and it was very apparent that my knee is deteriorating. I have done some physio, however once they incorporated weight, my leg got progressively more sore (muscles), and the joint itself was problematic and sore (sigh). I’m glad that my surgeon has given me options along the way and never pushed surgery. At this last appointment in January with xrays in hand, it was apparent that total replacement was imminent.
Now it’s just a waiting game. Getting a second opinion with a different surgeon next month in hopes of a shorter wait list.
Wishing you continued success and healing. You are correct....our bodies have the wonderful capacity to heal!
I am sorry to hear that. I thought that you are so young, there might be an alternative. I would not be concern too much with meniscus tear(s), I had the same and had the repair and parts that were not salvageable were removed and still I was fine for next 25 years after that. What I am saying is that even partial meniscus can work for a long time. ACL would have to be replaced, because you can't have any stability and it will continue to destroy meniscus... As much as artificial knees are miracle of technology, they do have limited life cycle of 10-15 years, so something to keep in mind.
I do understand that trying to rehab the knee is very hard task while you have PMR, almost impossible. I am still going thru it.
Good luck to you and hopefully speedy recovery after surgery.
I can’t help wondering if (some) men have a mindset that makes them THINK they’re worse off than they actually are, or worse than other people who complain less. Ever nurse a husband with the flu? (Maybe even while you have the flu yourself!). Some men just need more babying than others, and certainly more than women.
(This is NOT directed AT you, DadCue. Just making an observation.
I keep thinking that if my husband had PMR, I’d be waiting on him hand and foot. But since it’s just ME with PMR (the condition that can’t be seen), I get pressed into service doing yard work and other things that cause relapsing pain and stiffness...
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