I would like some advice please. I have been using the DSNS tapering method got down to 6 mgs of Prednisone ,again , after being on 6.5 mgs for months. My Flare warning pains used to be my left shoulder or my right hip or worse of all the base of the back of my skull which felt like I had been knocked hard with a bat.For a few days during the taper, when I was nearing most days at 6mgs ,I felt really well.
Then my left knee began to get extremely painful and very stiff every morning .I have to get downstairs by keeping that leg straight.The pain is there for a couple of hours and gradually fades if I keep moving but returns with a vengeance the next morning.
I took 10mgs of Prednisone for 2 days then 9mgs,8mgs 7mgs and back to 6mgs today over this week .I didn’t want to lose ground after finally getting back to 6mgs.Or to take a higher dose if it’s not a flare .
Anyway I’d like to know if the knee pain is a PMR flare.I thought it was mainly hips and shoulders.This October will be my 3rd year of PMR.It seems strange that my usual Flare sites are pain free.
Thank you in advance.Any advice will be gratefully received.
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Dewdrop456
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I had knee pain and after an MRI,they found it was a torn Miniscus.Ialso had pain in my right hip and it was Burstis.Both we’re treated with a shot of cortazone.That solved my problem .I am like you,having a problem going down from 7-61/2.
Maybe the knee pain isn’t from PMR but my Doctor took x-rays and an MRI to make sure.
Thanks Baileyw06,the puzzle that I pondering over is why the pain eases when my Prednisone kicks in because I don’t think it is the PMR affecting my knee.
In any case I might go back to 6.5mgs for a while because the muscles at the back of my legs have that burning/achy feeling.
I might even consult the doctor ....
Thank you very much for your reply and good luck with your reduction.Its tough isn’t it ?I do understand the need to take the right dose that the PMR needs but it’s still phychologically hard to lose ground and go back up!!!!
Could be one of several things - not least the getting going in the morning. And remember - you are a year or two older! That alone brings "things" with it!!
That is very true but I have to get up at 5 for my new wonderful nursing post.I just hobble along until the Pred gets going.I just didn’t want to increase my Prednisone if the knee pain was actually nothing to do with PMR. Anyway thanks for your reply as always. Hope things are improving for you.
Well I have thought about it before my knee joined in but I didn’t take it at night before because I wasn’t ever really in pain in the mornings.
It’s probably an excellent idea now that I’m in so much pain ,it’s waking me up.
Ive forgotten how you start off though for both options of either the whole dose at night or splitting the dose.Do you end up not taking anything in the morning,go the whole day then take it at bedtime?Doesn't that make the first day really painful?
I will probably go for 6mgs tomorrow.If I split it ,will it be an even 3 and 3?
No - always double up rather going down when you are changing from one to t'other. Take your morning dose as usual and the next dose at your chosen time in the evening - it isn't that much extra in 24 hours and will give you a good start, possibly taking out any niggly bits of inflammation as well.
It’s very likely your knee pain is unconnected to your PMR directly.
One of the issues of tapering is ‘old war wounds’ reappear & other issues which may have developed while on higher doses of Pred are now making themselves known.
I have OA in my knees, confirmed by X-ray but worsened by Chemo, l take regular Pain Killers for that & l have tried the anti inflammatory gel as prescribed by my GP
Mention to your GP & he may arrange an X-ray for you, my knees don’t like being bent for any length of time, so l will often sit with my legs up or if l want to read l lie on my bed.
I think MrsNails is probably correct, and one way to test this would be to take paracetamol regularly (assuming you’re ok to take) Try 2x500mg 3 or 4 times a day for a couple of days and see what effect it has. Armed with the outcome of that (it helps or it doesn’t help) you can then visit your GP for further investigations/treatment.
Dear Soraya _PMR,I will give the Paracetamol a try.It just seems strange that my old injury rarely bothered me before PMR.I probably should make time to see the Doctor.
Good morning to you too MrsNails,I did wonder if that was what was happening.I did damage that knee decades ago whilst skiing .I learnt to manage it by not bending it in an awkward manner so it rarely bothered me. It seems strange then that even if this IS the old injury which has been covered by the Prednisone,that it now hurts unprovoked every morning for the last three weeks.I might consult the doctor.I am resting as much as possible on my days off but as previously mentioned I am loving my new but sadly temporary,Nursing post.I want to be as able as possible.
I’m sorry you needed Chemo have you finished your course now?
Hi dewdrop. I have never previously had knee pain until reducing pred (apart from an old cycle crash injury that rarely makes itself known). Then I got bursitis in my knee ....housemaids knee ...
which my family thought was hilarious given my non existent relationship with housework. I kept it iced and as others mention used regular paracetamol and some gel. It took 3 weeks to calm down.
My legs are generally weak from nerve damage and at 50 I adopted the one step at a time going down stairs. This has reduced my falls down stairs from 6plus a year to just a couple of slips. Makes you feel "old" but glad I adopted it.
You might want to try kinesiology tape. Fairly cheap and videos on YouTube help you put it in right place. Having said all that best to get it checked out. Things like bursitis can be caused by an infection so you never know. 🌻
Well I could have written your post Dewdrop! I am at 5.5mgs after 3 years of PMR and am troubled with pain exactly as you describe. An X Ray has shown degrees of Osteoarthritis in both knees. Remarkably, I have been greatly helped by Flexiseq recommended by jinscac. It works like nothing else has. It comes in cream form and needs to dry on. I apply it around the knee joint and at the back of the knee. I can now walk down stars like a person, not a crab.
The head is another matter. I have the cricket bat pain at the base of my skull occasionally and a dull thick head otherwise. I slept with a cold compress over my eyes last night which helped. When I raised my Pred by 2 mgs the pain dissolved within the hour. I am back at 5.5 mgs now after 2 days. I have Cervical Spondylosis and remember this pain when I retired from a job involving too much computer work. Of course the prospect of GCA gives me concern but I can’t imagine that it would be dispersed by 2 mgs of Pred. Hope this helps a bit. Old pains emerge at these low doses I find.
Thanks Sheffieldjane,that ‘bat ‘ pain is really awful isn’t it. I actually went to the doctor several months before my PMR diagnosis about it and she just told me to go to a Chiropractor it’s a shame that she didn’t join the dots about other bits of pain I’d told her about because I would have been diagnosed much sooner.
Does your knee pain last even after the Pred kicks in?Mine practically goes til the evening..Idid see Jinscac’s Flexiseq suggestion a while back but had forgotten it.I may give it a try.
I’m sorry about your headaches.Thanks for your help again. Take care.
I totally relate to your knee problems. Mine appeared in left knee last summer and became quite debilitating. I found it odd as had no problems with knees at diagnosis of PMR. It was all shoulders and arms. Knees became swollen and pretty painful. Reluctant to increase oral dose as rest of body felt great (that’s all relative to PMR life!) Ended up with steroid injection in left knee and fluid aspirated. What a relief. Unfortunately it recurred and I’ve now had more injections and fluid aspirated. Three times in left knee, then right knee joined the party so it’s now had one injection and fluid removed. That was early February and still doing ok. Having said that my rheumatologist added leflunomide to my prednisolone thinking I have some sort of inflammatory arthritis too. I’ve been taking it for nearly 5 weeks and knees much better, not right, but far less painful. Right knee seems to have a bakers cyst which comes and goes. At least I can dog walk, do my yoga and Pilates which in themselves make my legs feel tired. I was so active prior to PMR that what I regard as ‘normal’ activity is the thing I still struggle to deal with three years into this journey. Me taking it easy is someone else’s busy day!
I don’t think anyone really understands what is going on with my knees. Had X-rays which are not great diagnostic tools. No signs of OA. Pockets of inflammatory fluid seen on ultrasound. At least my rheumatologist says she’s not sure and is very supportive. Time will tell if knees continue to improve and I’m able to continue my taper. Thinking of starting the drop to 9 this week but it’s scary how apprehensive I am knowing the pain might return.
You might need an MRI.Mytear in the miniscus didn’t show on x- rays or ultra sound.Also, the Doctor gave me a prescription for Voltairen which really helps! The shot of cortazone took care of the pain and swelling.I didn’t want to have surgery.
Dear Lochy,that’s very interesting I read your reply very carefully,and of course,poor you.knees are complicated at the best of times .Its good that you can keep up with your exercises .I do too, I love my classes.The Prednisone kicks in just in time .This is strange though ,I don’t think my knee pain is to do with the PMR it’s just that the Pred helps anyway.You had the same feeling as me in as much we don’t want to increase the Prednisone if it’s not PMR but also don’t want to risk a flare.
It seems I will have to visit the Doctor.I hope my knee is less complicated than yours and that yours continue to behave.
Impossible to say really. Ask your GP to order you an x-ray as a start.
I developed knee pain last summer and did wonder if the OA the useless first rheumy I saw insisted I had had returned after 14 years or so to haunt me. It had disappeared on pred some years later. I had an x-ray last summer - nothing to be seen. It also disappeared a month or so later. There is no OA - but there is something that raises its head every so often,
My PMR symptoms started in my knees. After an MRI it was discovered I had many organic existing knee issues, including OA which the surgeon suspects was exacerbated by 6 months of unchecked inflammation before I was diagnosed and put on pred. Now I’m waiting to a total knee replacement, but pain continues to emerge as I lower my pred dose (currently at 9mg). Now I get cortisone injections directly in my knee which provide pain relief for about 2 months. Perhaps get an MRI to shed light on what is causing the knee pain. Good luck.
Thank you ,I’ll see if I’m allowed one...I wasn’t for my neck!
My back pain may be due to unchecked inflammation like your knee I suppose.Thats getting noticeable now that I’m reducing.Puzzle is that I didn’t really have any knee pain before because I was used to managing knee movements.PMRpro pointed out that I was getting older which is true!
Anyway thanks for your advice .Good Luck to you too.
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