Does PMR/GCA flare up in the knees? I started a taper from (3.5 to 3.0) 2 weeks ago. One week later, both knees became sore and weak. Right now it’s more pronounced in my left knee. Pain lasts all day, and even at night.
Yesterday I saw a new rheumatologist - told me to go up to 10 mg pred and get an XRay. The X-ray came back perfect. This doesn’t feel like PMR—I’d like to drop back to my old prednisone, And add some Tylenol. What do you think — the office will be closed for next 5 days and I’m not very patient!! I was on 100 mg at the beginning of GCA in 2017, but this 10 bothers me now. Any advice/ shared experiences would be welcome. Love this site!
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Pamk1949
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I am having a flare and my knees are suffering something I can only describe as weakness and it is also sore but only around my knees, not really in the joint itself. I upped to the 17mg the rheumy said 10 days ago was fine from 15mg today and the difference is palpable.
Why not drop half way first and see how you are? If it makes no difference do the other half.
Did they take any other blood tests to see if you could be suffering from something else like Arthritis ?
Have you had a Dexascan to see if you could also have Osteo problems?
These could help if you are having knee issues but you aren't convinced that they are part of your GCA / PMR condition.
The GP could organise them . It would be good to be sure that no other Bone or Joint condition could be part of the problem too so that you can be more confident in the advice you are receiving.
Making a choice on the Steroid increase has got to be your decision .
If you feel you want to try just Tylenol first , with fluids and rest for a few days , you could do so .
If you find that the symptoms don't improve or continue to get worse you will feel more confident in the decision to increase the Pred.
Pred is also used as an anti-inflammatory in other conditions too , often at a dose of 10 mg , this may have been part if the Rheumatologists decision to use this dose.
You could choose to increase by a lower level , 5 or 7.5 mg , but you need to take into consideration that if this isn't enough the continued inflammation in the joints may cause you the need to increase higher still later on to bring your symptoms under control. Sometimes it's better to go in hard and fast.
You could try the 10mg ,or dose you want, for a period of 10 days then do a rapid Taper over the next four to the dose you are on now , or the dose you were on previous to the Taper you attempted when this symptom began ( 4/3.5mg) . Stay on that dose for a month before you try another Taper.
Monitor what is happening with your knees during that time , as if the pain continues or gets worse despite an increase in Pred it will give evidence that some other issue could also be affecting them. If there is rapid improvement but it gets worse as the dose drops it is more likely to be part of your GCA/ PMR or another inflammatory condition.
Hello Blearyeyed thanks for your reply. Yes I had lots of bloodwork requested, and a MRI for next week, and yes Dexa showed boarderline osteoporosis. Yikes! didnt know they could be connected.
By borderline osteoporosis do you mean osteopenia? Depending on the figures, osteopenia could also be said to be borderline normal. Do you know what your t-scores were?
~Interesting post Pamk1949 as I dropped my hydrocortisone by 1mg mid January then 1mg few weeks ago.
Usually take 10mg morning & 10mg night equivalent to abt 4mg Pred. Have remained at this dose for long time so thought I might see what small reduction might do.
My r knee has over last 3 weeks become swollen & most painful especially at night.
Never known this before & weakness generally in lower legs.
MRI findings "large knee joint effusion, moderate sized Baker's cyst + moderate to high grade chondral damage both sides medial compartment.......
My physio commented that every time I try & reduce just a small amount my inflammation appears - I don't think it's PMR as have osteo-arthritis + torn meniscus in this knee & previous steroid dose obviously enough to mask it.
Not sure what to do but have gone back to original dose & awaiting visit to Orthopedic surgeon next week.
My Rheumie left message on phone saying problem for Orthopedic department so obviously not PMR related??
Thanks Megans. I started my PMR/GCA journey with orthopedics, but they could t figure out my problem—neither I or they knew about PMR. But now maybe thinking I should see them for the knees.
~Either way having upped my dose is slowly helping with pain + swelling.
Taking paracetamol when required so I don't know if PMR has factored into this equation.
I certainly have orthopedic issues bubbling away.
Onwards & upwards as we do
Good Luck Pamk1949 ~
Hi. I am 3yrs in to my PMR journey. Started on 20mg and got down to 1mg in October...very excited to think I was going to be off the steroids in the new year! Then had severe pain in left knee only and was in agony trying to straighten it and get out of bed each day. Pain lasted all day. Thought I may have injured it somehow so gave it time to see if it would improve. I then asked for an x ray but Dr told me it was not necessary as it was highly likely to be osteoarthritis and I should go swimming and cycling! - told him I would if I could! He prescribed strong painkillers which did nothing. Eventually got through to rheumy who agreed an x ray which showed nothing. After 3 months of pain rheumy suggested I upped steroids to 10mg - pain disappeared overnight. 😁 So, like you, I suspected it may have been something else other than PMR but I think the tell tale sign is that painkillers don't work for PMR.
I had a similar experience about 18 months ago although the knee pain wasn't as severe as yours. I was immediately sent for an x-ray because this knee was the one more affected originally in PMR and a rheumy at the time claimed it was OA as she "could feel it". I wasn't surprised as it is the knee I had mangled skiing some 12/13 years before and I put up with it. When I finally DID get someone who thought it was PMR it improved with pred - great, I'll take any improvement. However the x-ray showed nothing at all of interest - and an increase in pred for other problems again cured it.
~Most interesting to read this PMRpro - by gum who do we listen to & believe that what they are saying is "true & correct?" No wonder we need to remain our own strongest advocates in continually searching for answers whilst the fees of our medical "advisers" climb each year ~
~I've been on the 10mg x 2 daily (Hydocortisone & not Pred which not as strong) off & on for best part of last year with the exception of when I had oral surgery & bowel upsets.
Couldn't take Pred as not enteric coated in NZ -initially it ulcerated some areas of small intestine so have my meds made for me by a pharmaceutical company in an acid resistant capsule to break down in large bowel thus leaving gut alone.
I'm 6 years on this journey, 5 years now on Hydrocortisone ~
~Sorry mean't to comment on taper - use PMRpro's method but if anything I am taking more now than when I was initially diagnosed at outset 2015. I responded well to a lowish dose. When there was upheaval in my life I tended to need more.
Don't know if I am masking other issues (osteoarthritis evident hands/feet/knees/shoulder/wrist + one or two other lurking issues which I hope to have an answer for in 3 weeks but won't report unless condition proves positive.
I was on 10mg for a month. Now down to 8mg and still no knee pain.
I'm finding one or both of my knees hurting in the morning for a few hours. Once I take pred it passes. Not swollen just ache. My hand hurts sometimes as well.
I think PMR does affect knees, if I forget to take my Pred I feel it in my knees first. If I get very stressed I get inflammation in my shoulders and arms as well. I do also have a certain amount of OA in my knees which walking and cycling have improved. Pred seems to help both the PMR and OA so I’m reluctant to taper below the 5mg that I’m on at the moment.
I used to have knee trouble, years ago pre-pred. I was given exercises to do which basically strengthen the leg muscles. As my knees were being a bit wonky lately I dug out the ankle weights and started doing these long-retired exercises again and now the knees are fine again. You can experience pain in body parts because a muscle somewhere else isn't doing its proper job.
OK, this is really freaking me out. I was just searching through some of my medical records for something when I came across two letters from 2008, one from a GP and another from a General Surgeon on the topic of my unresolved bilateral knee pain, which had morphed into thigh and overall leg pain. I had numerous tests done including x-rays, CT scans, blood circulation tests of my legs, etc. to no avail. The General Surgeon in his concluding paragraph wrote: "I really do not think this is a venous disease. Orthopedics has excluded bony source. I wonder if this is some form of muscular pain and perhaps even myositis. I am going to arrange some lab work to include CK...Once the lab work returns I am going to consider a referral to Internal Medicine or Rheumatology."
I was never advised of this report and only just found it while searching records I obtained in transferring my records from my previous clinic to current GP in a different Province. None of the follow-up action was ever taken. This was six years prior to my PMR diagnosis.
I have struggled with my legs for the last 12 years! Only recently I went through a battery of tests related to my back, which revealed lumbar compression, normal wear and tear, and minor bulging discs. I began working on the somewhat iffy conclusion that a disc may be pinching nerves in my spinal column causing bilateral problems with my legs and have started the suggested exercises.
Is it my back, or has it been PMR all along!!! Talk about being frustrated!!
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