I was diagnosed with PMR a year ago and started on Prednisone which magically took away my previous 3 months of pain within a day.
But then I wanted to get off Prednisone after half a year, due to my increased weight and disgust with myself. Of course that didn't work! My hip and sacroiliac back pains were much better, but I still had aching shoulders, arms, wrists, and knees. I used to be very active, but have had a hard time doing the basics and get exhausted easily.
Well, I'm now trying a much slower taper (thanks to distant friends who told me about this group!). I did have to bump back up twice. I'm currently on 9mg/day for the past month.
My problem is my knees are killing me. They are sore and very swollen, and my back hurts again but in a different area. I'm back to using ice packs at times. My other joints feel ok, except when due to too much yard work / housework, which is not easy to do!
Do you think this could be PMR pain, or just due to my prior osteo-arthritic knees that are probably really stressed from carrying an extra 25-30 pounds while on Prednisone?
I'd love to keep weaning slowly and hope I can get this weight off. I do love to walk but am having great difficulty after a few miles. Yes, I'm trying to watch what I eat but just am so hungry at times. Help!
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walker5
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My guess is that your penultimate paragraph has nailed it. Knees are a pretty badly designed joint at the best of times and ours have carried ourselves and other people ( usually smallish) through years and years of active life. Arthritic pains have a nasty habit of popping back up as we decrease our steroid dose.
Please, please don't be disgusted and unforgiving of yourself for weight gain and comfort food! You have a serious systemic disease and you need to love yourself better. We're all in the same boat, Steroids can make you ravenous and crave sugar and fat and baked things. Without steroids we'd be old and thin and wizened and hobbling about all bent up - well you get my drift. Patience is the name of the game. My Fitbit gets me out even in the rain to make my step count, who needs a personal trainer? I also find that walking actually makes me more awake than sitting about resting. Let's both start eating less and moving more and above all be kinder to ourselves.
Hi walker5 welcome to the club that none of us wanted to join. 😊
When I get the urge to stuff myself with carbs I go into the kitchen fill a pretty glass with water and sip it slowly looking out of the window for distractions, later there is the distraction of visiting the bathroom. This morning I found a large cobweb on the inside of the window spent some time deciding whether to remove it or not, how long it had been there etc. By that time my pred brain had forgotten about carbs! I agree with everything Jane says don't be so hard on yourself and rest after everything you do. Try reading some of the old posts, we have all struggled with the weight thing at some time. All good wishes. 💐
Would suggest that if your knees are swollen then that’s more likely to be OA, I found the pains returned with avengance once I got lower on the Pred.
Unfortunately no matter how much you want to be off the Pred, so long as the PMR is active you need to be on it, at whatever dose YOU need.
Putting on excess weight can be distressing, but it does go again as you get lower, and if you cut down on refined carbs etc it does help. Don’t be so hard on yourself.!
I can’t walk very far - arthritic knees - so I do Pilates, but any gentle exercise like yoga of tai chil will help - it makes you concentrate on your inner core - and if it’s doesnt hurt (like walking does for me at the moment) then you feel happier doing it and are more likely to do it more often.
I second that OA idea..I have OA in some joints so it's a double whammy...I use pain meds as in Norco judiciously and it helps me...not for everyone I know...
"I do love to walk but am having great difficulty after a few miles"
There are many of us who can't manage a mile! You are doing well.
You can lose weight while on pred - I lost 35lbs and so have others. Cutting carbs drastically does help a lot.
Knees can suffer due to problems with back muscles and that would fit with your back pain too. A physiotherapist may be helpful there - they are better at diagnosing muscle problems than the average doctor.
I don't know if your knee problems are osteo or PMR related. But I do know that you are one active and energetic person. Yard work and housework and walking miles....
I'm 76, was diagnosed last Dec. . I was never as physically active as you seem to be. PMR forced me to get more active to keep flexible and retain muscle. But it punishes me if I overdo.
PMR forced me to give up all grains and added sugars since I was already up 25 pounds from the good old days. I thought I would become a raving maniac, but I was too scared to feed carbs to the Prednisone. Somehow a switch flipped in my brain and the things I ate before PMR were no longer "my food". They became "poisons". Fear and desperation I suppose were helpful in this situation. Over 4 and a half months I steadily lost that 25 pounds. I still can't believe that happened for me.
Please don't be so hard on yourself. PMR is hard enough. PMR is a wiley opponent. so hard to find a winning strategy. Impatience doesn't seem to be a winning one for any of us.
HI: Just saw your post about swollen knees. I encourage you to get a few medical opinions, including a Rheumie's (or a physiotherapist as others have mentioned) and to also to get some up to date x-rays which should illustrate whether you have "water on the knee" or effusions.
I had swollen sore knees for months after my PMR had mostly subsided. I had x-rays taken to discover that it was probably not due to OA solely, which was only in one knee to date. My PrimaryCare Physician (Internal medicine or General Practice) told me that she does not drain knees due to the risk of infection, but she would concede to whatever the Rheumatologist recommended. She also recommended walking for 20 minutes a day and referred me for physical therapy.
The PT told me that she mostly works with the patients of orthopedic surgeons on patients with mechanical (bone injury or wear and tare) agreed that the Ortho docs rarely drain knees. She had me icing my knees for 15 minutes several times a day and using ibuprofen. She also gave me a specific set of exercises to "stimilate" the muscles near the knee, but not overwork or develop them. She asked me to stop going on long walks, limiting walking only to "functional" walking, and instead do the exercises and ride a stationary bike for 5-10 minutes a day set to "lite". The latter would get the synovial fluid moving about in the joint without over-stressing the knees. She explained that when the knees get injured there is some sort of counter-intuitive physiological response whereby certain muscles shut down to protect the knee but it results in even more stress on the knees. This response is exacerbated by long walks (even though, in general, walks are so good for us). Additionally, the exercises, which got more difficult after six weeks, were also meant to develop lateral muscles in my legs so that the knees would be supported in a more balanced way.
Next I saw my Rheumatologist, but by this time, despite the icing, I was truly hobbling. She looked at my x-rays, and immediately drained by knees and while it wasn't pleasant, it was not painful. And wow was she fast! I felt relief as soon as I stood up and could walk so much more easily. The Rheumie said that the risk of infection is only 2 out of 10,000 if done properly. She also gave me the option of getting a shot of cortisone in each knee and I opted for it. (Then she gave me an optional script for 5 days of prednisone which I did not take.) At her direction I continued on with the advice of the Physical Therapist, icing my knees and doing the exercises, and I am much, much better off now. I am careful never to kneel and take more care with my knees when choosing activities. That was about 5 or 6 weeks ago. I can go on walks now, but when I feel the knee stress I stop. As I've posted elsewhere, I am becoming a big fan of Essentrics.com or Classical Stretch videos, which I use to exercise without stressing any joints too far. Others are using Quigong, Tai Chi and yoga.
I suspect that some of us get bursitis in the knees and it is related to PMR...but that's just my suspicion and I don't have medical evidence. PMR Pro told me that bursitis of the hips and shoulders is a part of PMR for some people. My Rheumie believes that my knee issues are "systemic" and not "mechanical" (OA, injury, etc.) but she's undecided as to what exactly it is. I see her again at the end of October.
So, that's why I recommend pursuing this issue with the various physicians and getting various perspectives. It's expensive and time consuming, but I'm certainly happy I eventually pursued it!
I have just come across this. Thank you for such a detailed and informative post.
After nearly 3 years of GCA, now PMR, my knees have become very painful. This is a further blow as we are walkers and cyclists.
My specific question relates to the nature of the swelling. Mine are swollen on the inner face, the swelling being hard not soft. Does this relate to your experience at all? Thank you.
Hi: Yes somewhat. The swollen areas were hard and stiff to the touch unlike typical fatty pads around the knees which are..."squishier"🙂. Also mine were eventually so swollen that my knees looked abnormal. Most of the swelling was above the knee, but the Rheumatologist was draining it from within the joint itself where she stuck the needle after a little "freezing" process. (Again it was a bit uncomfortable but didn't hurt...no sharp pains.) So...not sure if the area of swelling dictates the diagnosis.
My knees began bothering me first after I kneeled to paint a piece of furniture. But they REALLY bothered me after going on a hiking tour that was more rigorous than I had expected. I thought the hiking would be good for me and would help get me in better shape etc....but my knees killed me for months afterward, got worse and not better, and led eventually to all the medical visits. In retrospect a swimming vacation would have been a lot better for me long term.
I just saw my Rheumatologist again this week. Although pain and mild bursitis in the knees is part of the medical literature for PMR patients, she suspects that I may be getting psoriatic arthritis and wants to watch it. She was really pleased though because as long as I don't over do it, I have no knee pain any more and I have a full range of motion. I am hopeful that, rather than psoriatic arthritis, this is just the after effects of PMR and my hope is because my Mother had PMR 20 years before mine and then she too had her knees drained in the year after her PMR subsided. Eventually, after a couple draining sessions, it just disappeared. She could not kneel and neither could I...and indeed I no longer kneel ever as it seems to aggravate the condition.
Whether it's the years on prednisone, or the years of PMR, or some combination, my personal belief is that many of us need to be careful with all of our major joints as they seem very susceptible to injury and they will need care and attention in the years ahead. I really encourage you to be patient with your body. As an aside I was 52 when I was first diagnosed and am now 55.
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