Having been taking steroids now since my PMR diagnosis March 2016 - feels like forever - I am now dealing with pains I’ve not really had before. Nothing new there as many of us know but I’m now wondering if the long term steroids have weakened my tendons. I have plantar fasciitis in both feet, was the right to start, it’s improved and now the left is playing up. I have an aching right hip particularly uncomfortable lying on my side in bed, but not every night. It’s often sore when walking uphill as I put my weight through it. Possible bursitis. Both rotator cuffs feel bruised. Can move my arms absolutely no problem in comparison to the pain and limited movement at diagnosis. I’ve managed to continue my Pilates at varying levels according to how I feel and hoped this would maintain some strength. Dog walking is my main exercise but this is now giving me problems.
I’m hugely frustrated by this recent development and just want to see some light at the end of the tunnel. I coped not too badly in the early days trying to be sensible about what or how much I did but now I’m just fed up. It just seems to be one thing after another. I’m currently on 6.5mg and thought I was doing quite well but now this. Rheumatologist appointment last week was changed to telephone and it’s pretty hard for them to examine the sore bits down the phone 😬🤬 so frustrating
I’m only taking prednisolone now having tried several other drugs over the years supposedly to help me taper but I know I’m now in that tricky place where I have to taper very slowly (as I’ve done most of the time!!)and the rest of me is totally fed up with prednisolone and all the issues - the drug that keeps on giving.
This is a real fed up rant, exacerbated by being on my holidays in a beautiful part of Scotland and frustrated that I can only go for short walks! Sitting enjoying the views is also quite good so I shouldn’t moan too much.
Is there an answer to my tendon theories or is it just another one of these PMR things? Thanks for reading!
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Lochy
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I know that the blood supply to muscles etc is affected, this makes them pretty unforgiving of too much exercise or strenuous, unaccustomed exercise - could it be that, with the sheer joy of being in beautiful Scotland and the rugged terrain?I was diagnosed one month before you and can completely empathise with your fed up rant. I have felt similarly constrained on holiday in Ireland. Increasingly sending my husband off to do his own thing. The air, the change and the views have restored me at some level though. I hope you get over this hump soon. Hang on to the fact that not so long ago you felt that you were winning.
Being somewhere lovely does help but these niggles have been around for a few weeks and I think being away when you used to be able to do a lot more juts gets to you. I know a steroid reduction let’s things break through but I thought doing the dead slow taper might alleviate that. I also know that all my age related issues have been hidden by the steroids but it does become rather tricky working out what is what. I hope you enjoyed lreland, another beautiful place. Here’s hoping I benefit from the calmness but sadly it’s not usually my way. I’ll remember that there have been times when I thought I was winning and that may help.
Hi Lochy, I can totally relate to your rant ! I have been on Pred for a few years too and am trying to go from 7 to 6 ( slowly) and there seems to be one thing after another. Recently the tendons in my knees have been very painful. I sometimes use a pillow between my knees to help with hip pain.I too am frustrated as I used to be so active and now struggle with walking any distance. Keep up with your little walks and enjoy your view, hopefully we will beat this ❤️
I love your Wonder Woman avatar just wish I was her for a few days 😁It is so very frustrating at times and apart from oneself (and my very lovely kind OH) and all my virtual friends on this site it is a lonely path. Luckily enough I don’t look ill but then that causes problems trying to act as if your ‘normal’ once again and everybody wants you to join in. After 5 years I still struggle to explain my condition (it still gets confused with fibromyalgia) and I still don’t see myself as being ill……I don’t feel ill! I will persevere as we all usually do and I wish you well with your knees. Mine were very painful and swollen for a while but have now settled down so fingers crossed. It’s now just the plantar fasciitis that’s really annoying!
We usually look healthy and don't feel ill, and that makes it worse. I still don't think my Husband and children ( all adults ) understand what this disease does to you. I have bad days - feeling sorry for myself, as we all do I think. I never imagined I would have it this long. I thought I would easily reduce pred and be PMR free and back to normal in no time. I miss doing things that used to be so easy and that I took for granted. Perhaps we will feel like Wonder Woman tomorrow !
I had the same problem in that at the lower doses my tendons and ligaments gave up the ghost. It was devastating after waiting so long to not be decrepit on the high doses. The worst thing was that I was crippled with Achilles tendinitis and I couldn’t walk very far. After a year and a useless Physio referral I found a great physio who looked at me holistically. They discovered my hips and lower abdominal muscles were pretty weak which affected my gait making the tendons unhappy. I had exercises to sort it out. At the same time I saw a podiatrist who discovered the same issues and also prescribed exercises, some the same, some foot specific, plus some orthoses to wear. I think those interventions and much reduced Pred helped me recover.
I’m trying to do my exercises but I’m one of these dafties who thinks if I’m out walking or doing Pilates that is exercise then forget to do the specific ones! I’m glad you’ve seen some improvement. Did you increase your steroid dose or just maintain the exercise programme?
No, I didn’t up my Pred; no reason to and the Pred had also had a hand in the damage. Pilates was not possible before doing these exercises to be robust enough generally to do it. I think it’s the high doses that set the ball rolling.
The right hip has all the hallmarks of trochanteric bursitis and I would wonder if the shoulders are also similar problems - and whether they are due to the pred dose being just a bit too low so left-over inflammation is building up again. I find walking on rough/uneven terrain and on hills particularly difficult.
However slowly you reduce, whatever approach you try, nothing will get you past the objective at any given time: the lowest dose that controls the inflammation. Even very slightly too low will allow inflammation to build up and eventually make its presence felt.
I’m always in a quandary about my steroid dose and no sooner than I think I’m vaguely doing ok something pops up. They’re all new pains which also confuses me hence why I wonder if my tendons are now weaker and I can’t support myself as well. Agree about the uneven terrain impacting on my hip, once I stop walking its fine….. until I lie down! I suppose the inflammation finds a new spot to target as opposed to returning to the old favourites? Keeps us on our toes, or not in my case!
It is worth asking your doctor about the GTPS (greater trochanteric pain syndrome) because it isn't only the outer hip pain, it impacts in other ways too
I have had steroid shots (in soft tissue over the hip bone) that were a fantastic relief. When you have PMR it isn't only usage that contributes to it, the PMR inflammation can feed it too
Your hip and shoulder sound a lot like mine. I have been known to take aspirin when it's really bad and that helps a lot (a single dose of two extra strength aspirin). Tylenol is also helpful, although not as much, which makes me think it's really not PMR. Also it comes and goes without changes in pred dose. Literally "a pain" as it would be so nice to not be in pain every day, or night, for one reason or another! I find my shoulder often is pretty much fine all day, and gets bad when I lie down, so something to do with its position. Nordic walking makes it worse, ironing helps - which is very irritating!
I rarely test the ironing theory so that helps 😉 Yes it’s intermittent. Shoulders have been much improved then you lie on one and suddenly. They both feel bruised if you press around the bony edge. Doesn’t affect me dressing or much else. I even managed a few holes of golf the other day and that I think set off the plantar fasciitis and the sore ribs. Think I need to buy new shoes for every activity or occasion.
When new pains appear I find it hard to establish if it’s steroid reduction especially when I haven’t had the pains before or overuse of muscles. Myofascial massage definitely helps hence my reluctance to increase my steroid dose.
I totally relate to this , in fact ive written about it to other people in pain on here.My worst tendinitis was when i was on a much higher dose. One of the worst pains ive ever had ! Mine started to ease up a bit the lower the dose .It took maybe 6 months for it to go and for many months later even to touch my calves/ankles was so painful ! My Dr gave me some gentle stretching exercises . It really is awful at first but if you push through the pain it really helped me ! You have to take it slowly , there are plenty on you tube. This worked for me, I hope you feel better soon.🌸
Pretty much same timing for being on pred. My hip is the same, bursitis I think, but my knee is pretty much shocking too. The rheumy did give me injection in my hip and knee, at different times, which settled them for a bit but they are both back paining and the knee just feels like it's going to pack in! I really do feel steroids do damage in the background, then it's more steroid injections or something to settle it and it just goes on and on. For me anyway! I think a lot of us can share your frustration at not being able to walk as much as you wish and the pain and aches. I hope you got something out of your holiday, a change of scene is great though I know that feeling of the disappointment of not being able to do what you would like. Wishing you better days!! You will probably find you will pick up again and things will settle. It comes in waves!
Fortunately I’m very good at bouncing back as many of us are. It’s one thing that suddenly triggers all your frustrations and you have to vent. Especially when things were going relatively well! I am having a lovely holiday anyway as you can see from my photo.
I totally sympathise with you. We are going on our first trip since lockdown next week and I am already nervous about not being able to walk far. After nearly 6 years with two relapses I am now74 and have osteoarthritis and trochanteric bursitis, plus neck problems. I think they would have developed anyway. What I do is google car drives in the vicinity of the holiday and print them out. They have some beautiful scenic routes and you can get out and do a short walk, take a picnic etc. Hope you can enjoy the rest of your holiday.
I am having very similar symptoms and it is so frustrating! I’ve never had the tendon problems before. I assume my returning aches and tendon problems are due to my having recently reduced my prednisone. I have been doing the stretches demonstrated by Bob and Brad on YouTube at my rheumatologist’s suggestion. Hope for all of us that this is a temporary set back on our road to recovery!
PMR 20 plus years, GCA 10 plus. Doing well on Actemra, with 5mg. pred. The one thing that helped my muscles was beginning a regimen of 400mg. daily of magnesium maleate . Magnesium Glycinate is also good. I also started taking 500mg liposomal vitamin C three times a day. I built up to the Vitamin C slowly. just in case it caused stomach upset. Liposomal C does not cause stomach upset with me. I also take a liquid b vitamin supplement under my tongue. The combination of these three along with a vitamin d lozenge seems to have helped me tremendously. Many/most of us on prednisone are also on an antacid of some form. The antacid and the prednisone prevent the proper absorption of magnesium and b12. We also stop absorbing these nutrients as we age. I used to have horrible tendon pain in my ankles in the evening. Since starting the Magnesium and Vit. C the pains have stopped.
Thanks for that information. Funnily enough I started taking the magnesium maleate a few weeks ago after having seen a nutritionist. Trying to support myself as much as possible through all of this and there’s no advice handed out by GP or rheumatologist about background effects of prednisolone. Fingers crossed I start to feel the benefits sometime soon.
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