Well I was super fed up a few weeks ago and then it went from bad to worse! I cried in my rheumy nurse appointment because I was fed up of feeling sore all the time. As I’ve got down to 5mg pred my osteoarthritis in hips and lower back has been unmasked (confirmed by my consultant rheumy the week before). It’s only mild but I have to plan my whole life around the pain and limited capabilities. The solution was TAKE pain relief instead of just moving it around the worktop and see gp.
Two days later-cough-sniff-covid (hubby had it). One day in I put myself up to 10mg pred for sick day rules and spoke to my gp. I’ve been on the virtual ward ever since. Checking my oxygen with a loaned monitor and a daily phone call from nurse specialists which I must say has been welcoming and supportive. Anyway-I’ve had flu like issues and a chesty cough so can’t complain BUT I almost wish I hadn’t upped the pred.
My hips and back have been lovely and comfortable but wasted on me cos I’ve not been well enough to go anywhere. The insomnia I had last summer has come back in style. This was one of my worse side effects on higher doses. I know we’re all different. I’ve dropped back to 5mg pred now after a week of 10mg and am praying to sleep!!!! I suppose my hip and back pain may return but THAT doesn’t wake me up! Am I never satisfied? I need to get a grip! I just wanted to share the pros and cons of sick day changes. 🤗
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MiloCollie
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I know the pain bit. Today has actually been rather better than recently despite having dropped the pred dose again. Either I have found a painreliever that works for me for the other stuff or the tocilizumab is working better and better and more was PMR than I thought ...
Hi I’ve got the same problem. My rheumy says I’ve got bursitis and it’s really painful. He won’t give me injections until I’ve had an ultrasound scan which I may be waiting for forever! I seem to be forever putting an ice pack on my back.
Not sure, but physio and I think it is probably a nerve in my very arthritic neck which is being impinged. Strange though because it started with my right shoulder a couple of years ago, that got better and about a year ago shifted to left shoulder. This went away when I took a (for me) massive dose of pred when I also had very high CRP and was sort of okay until lately when I took 2 mg a couple of times. My last CRP was 2 point something which is an unheard of low for me, so I don't think it is really PMR but something confusing (and painful) is going on. It can keep me awake at night sometimes.
Would agree it’s probably related to neck -does it feel like the problem previously on the other side?But miserable whatever it is… do painkillers or heat help?
I'm so reluctant to take nsaids because of their bad effect on cartilage that I haven't really tried much in the way of painkillers. It does feel better if I stay out of drafts, even with our warm weather, but hadn't thought of applying direct heat. Took some aspirin the other night and I think it helped a bit, but probably needed to take more than I did. Yes the pain is the same as it had been on the other side, and not like the PMR neck/shoulder issues I had before starting pred. I think PMR joined the party last year because at a certain point I realized I really did have PMR pain, and that was my flare.... But this is so confined as well as responsive to certain positions, I'm sure it's "mechanical" not systemic, if you know what I mean.
Yes i do know what you mean.,;;so maybe a combination heat, ice snd the occasional aspirin might help..do hope so… chronic pain like that is very debilitating.
I saw my son yesterday and although that’s not usual we had almost the whole afternoon/evening together so long chats occurred that are normally interrupted by family life!
He did say “you look so much better than you have in long time“ The reason -no GCA, no Pred, no constant pain from firstly undiagnosed GCA, then OA pre surgeries -and stress of late hubby illnesses.
When you are going through those things you just get on with life the best you can, but it’s only once you are out the other side you realise how draining and difficult it really was.
Hopefully you, and others on here will get to that place one day. 🌸
Isn't it great to be told you look so much better when you really are so much better?!
I've had a further thought, have cut my glucosamine in half because of the blood sugar issue, and things have got much worse the last few days., Wouldn't have thought dose change would have such an effect so quickly, but perhaps that, along with the summer heat which always makes my OA worse, have conspired to cause an increased problem. Even my hitherto well-behaved knee was acting up today. It is very tiring/tiresome. However, thanks to a suggestion from a friend I am now reading aloud to myself Anne of Green Gables, which I last read over thirty years ago when reading to the kids, and thoroughly enjoying immersion in the country life of Victorian era Prince Edward Island. L.M. Montgomery really was a good writer. My father as a child read the book in Polish translation! So for a while I can laugh and cry over the travails of the little redhead.
Matthew has his heart attack you mean? I actually know the story very well, having vicariously lived Anne's life in my distant childhood. Own all the books in the series. Was fascinated by Anne of the Island when I realized I knew several of the landmarks mentioned in the story. It's always so nice to read an old book and enjoy the style of writing. A couple of years ago I reread Wind in the Willows and understood for the first time that it is a wonderful story about friendship. Another time I re-read Middlemarch and when it came to an end I thought I couldn't possibly find another book to top it. I felt it was the best novel I had ever read.
No, though Matthew's heart attack is terrible too. I meant in Anne's House of Dreams when Captain Jim is found to be a goner. Hope that isn't a spoiler!Thanks for the Middlemarch recommendation.
Ah, I didn't ever get to know the later books off by heart - Except Rilla of Ingleside, Anne's youngest daughter. I was so cross when the Disneyfication of Anne had them sending Anne off to war I stopped watching any more dramatisations. Rilla was Montgomery's war story. My husband actually put it on a reading list for a history course as it illustrates Canadian attitudes during WWI.
I wasn’t aware that NSAIDs affect cartilage. I’ve been taking paracetamol off and on when my knees and hips play up, but have not noticed much improvement. My gp prescribed celecoxib 200mg as a night time dose to help dampen the pain and give me a decent nights sleep. It works in that respect but I’m still having knee pain and hip stiffness in the day time. It stops me walking much, which is counterproductive to my aim to build back muscle strength and fitness. Since I’ve been on prednisone, now over 3 ½ years, my knee pain has accelerated considerably and my fitness has diminished despite working on a programme with my physiotherapist . It’s most discouraging that neither gp or rheumy have much interest in this problem.
I see below your comment about glucosamine and I’m wondering what dose you usually take? I’ve never tried it. Perhaps taking glucosamine instead of nsaids would be worth trying.
I’d be grateful for your thoughts on this HeronNS.
Paracetamol isn't an NSAID. It's medications like aspirin, ibuprofen, naproxen, and the active ingredient in Voltaren.
Glucosamine isn't a painkiller but as it is supposed to have a beneficial effect on cartilage it would indirectly help with pain. It needs to be taken for a while before noticing any change. In my case I think I started taking it so early I prevented or slowed deterioration. I take capsules, not hard tablets, and always with a meal. Some people complain they find glucosamine hard on the stomach, but I never have and maybe that's why.
I learned about the effects of aspirin which was really the only common otc painkiller when I was first diagnosed with OA about 35 years ago. I'm not sure how, as the internet wasn't a thing yet and my doctor actually told me to take coated aspirin, which I did for a while under the mistaken belief that it was going to help the OA. I must have learned about it through a magazine or newspaper article. I did not then and have never actually needed painkillers for arthritis as I have not experienced high levels of pain in large joints. Discomfort yes, mild and transitory levels of pain, yes. To my mind not worth taking meds for. I do, however, have a whole suite of physio exercises accumulated over the years for practically every body part! Nowadays I practice tai chi and I think it helps a lot.
Glucosamine is also something I started taking quite early on and when I complained to a friend that it didn't seem to make much difference (I took 1000 mg per day) she told me her husband took twice that and it helped him. So I doubled my dose and I think it must have been helping all these years. I mean, at least 35 years of OA and I'm still kicking! I also think that Vitamin B6 is recommended, and not wanting to take one B vitamin without the others I take a B complex tablet every second day. Again, anecdotally, when I first started doing this it did seem to make a difference, so I've simply continued taking it.
I injured my knees, separate small but damaging accidents, early in the pandemic and even got a referral to discuss possible knee replacement. However I learned ways to stabilise the knee in question (cheap elastic brace from pharmacy) and bought a book recommended by fellow HU member, Treat Your Own Knees by Jim Johnson, which supplemented what my physio already had given me, and also recommended in HU (by jinasc ) started using Flexiseq, which my son orders for me on Amazon. I also sometimes use a pedal exerciser which seems to use different muscles than stationary bike and walking. Thoughts of knee replacement are now far from my mind!
Thanks for all that detail. It’s interesting that a higher dose of glucosamine may be helpful. I did take it for about a year but didn’t notice much improvement. Perhaps I need to try 2000mg for a while. I also used Flexiseq until it became unavailable in NZ. Again, not sure if it helped. That was then and this is now so keeping an open mind is wise I think.
I also believe that keeping the joints moving is a key. I have a long term lumbar problem for a childhood injury (overly enthusiastic roller skating at age 11). It started to play up last year and the pain was awful. A specialist physio back clinic and sticking to the daily routine from that has fixed it, which feels like something of a miracle. Now if I can just do that with my knees I’ll be a happy girl (an 80 year old one!)
I’ll look out for that book, and try to fins a source of Flexisec.
I don't think properly targeted exercises for your particular knee problems would hurt. Try to get a copy of that book I mentioned, It is available as an e-book. I ordered the book itself as I noted it was illustrated, but as the illustrations are simple line drawings an e-book would have been fine. Also I didn't notice you were taking celecoxib. My doctor gave me a bundle of samples years ago, which I put in a cupboard and forgot about. When I eventually looked up info on it I wondered why it was still on the market. I think, in North America at least, it is the only one of a class of drugs which has not been withdrawn as the side effects were rather dire.
Flexiseq is not available in Canada either, which is why we have to get it through A___ although someone mentioned recently they had been finding it on ebay.
ok I will definitely get the book. And do some deeper research about celecoxib. My gp was very enthusiastic about it, but just because I trust her doesn’t mean she is always right!
As for Flexisec I learned about it from someone on this forum. I’d like to know more because the info published by the company makes it seem a bit implausible: protective particles absorbed through the skin and migrating to the damaged bone surfaces? I wonder how many people genuinely get relief? Trust saying. I need to try harder to learn more. I’d love to hear from anyone on this forum who has had relief from it.
jinasc who recommended it originally buys it in bulk, 6 tubes at a time because it works so well for her. Several ladies in her support group at the time also used it and realised their sore hands no longer hurt: you apply it and then wait for a bit so it was a similar time before they went to wash their hands, allowing it time to work there too.
There are several on the forum who use it - it must work because it isn't the cheapest thing in the world but they still buy it! You do have to try it to see if it works for you.
It was the final key to turning my condition around. I was practically crippled and when I added Flexiseq to what I was already doing, things turned around very quickly. My knee at that time was quite swollen, had been for several months, and I don't know how or why but only after I started with Flexiseq did the swelling go down. I used it twice a day for a while but now only once a day and that seems sufficient. I do notice if I miss a day in terms of a bit of additional discomfort and stiffness. Have been using it for nearly two years.
Thanks all for those helpful endorsements of Flexiseq. I’m now on the hunt for a new supply source. I’m going to try and avoid A... but if that’s the last resort I’ll close my eyes and do it! It sounds like it’s important to apply consistently and over a long enough time to really test it. I did neither last time - must try harder!
I think they say to use it twice a day for up to two weeks, and if it's going to help you will know between 2 and 14 days. I have to say it did work quickly for me. It's the Extra Strength for osteoarthritis, not the other kind for "joint wear and tear" which is for people with less serious problems, say a runner with sore knees.
Pain. I did as I was told and reduced to 7mg on 5th July. 6th attempt to reduce now. Last Tuesday I reduced to 6.5mg. Last Thursday I was doubled over with hip and lower back pain. Analgesics don't work. I have been like it since last week. Move and it feels like an explosion. We went to see my parents today and getting in and out of the car was a trial. Every bump in the road. Every corner. It is tempting to go back up for thr 6th time, or is it the 7th? I am with you on this. Pain free or steroid free? What do we do?
But is it PMR? A lot of my fairly severe shoulder pain appears to be caused by an arthritic cervical spine and physio exercises and posture help that. Strengthening muscles which support vulnerable joints, including the spine, seems to be a key way to alleviate some of the pains we develop as we age.
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