As I posted recently, after more than a year of taking 2.5 mg of pred daily, at long last I had an appointment with a rheumatologist who advised me to reduce to 2 mg and then by 0.5 mg reductions at intervals to get down to zero pretty quickly.
I'd experienced before that when I reduced my pred dose, the osteoarthritis in my knees would start to "play up" a little more. This time, after a few days on 2 mg, it flared up very badly in my right knee, and for several days I was left almost disabled from the pain. It seems to have subsided somewhat now, but is still much worse than it was before.
I'm trying to work out whether this huge increase in pain is the result of the pred reduction, or if it's a coincidence. I'm particularly concerned because, if I follow the plan precisely, I'm supposed to reduce to 1.5 mg tomorrow!
If anybody else has had a similar experience, I'd be grateful if you'd let me know.
I'm also wondering if I'm okay to take ibuprofen by mouth at such a low dose of pred, as paracetemol does nothing for this particular pain. I am using an ibuprofen gel which I assume is safe, and it gives a bit of relief.
Finally I've been told that ginger extract is good for knee pain. Has anybody tried it?
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Marijo1951
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It could be related to the reduction, Pred does seem to help a bit with osteoarthritis. I get attacks like that, quite seldom now. My Rheumatologist offered a steroid injection into the knee ( one was worse than the other). I also purchased a knee strap to support me coming down the stairs, in particular. Apart from that is seems to have settled for a long time. They were hugely swollen. The pain was quite severe. It is a shame that such pressure is being put upon you over a tiny, relatively harmless dose. I might ignore that advice until the knee settles. It might be a relatively harmless dose but it is amazingly therapeutic. You could ask about the injection at the point of the problem? Best wishes.
PS. Having developed significant, painful gastric issues, I personally wouldn’t risk Ibuprofen.
Thank you for the prompt response Jane. I'll have to get a knee strap - like many Londoners I occupy a flat in a building without a lift, and I have two flights of stairs to contend with every time I leave or enter. I love my flat in every other way and wish I could move it by magic to the ground floor, or maybe I'd rather magically install a lift, as the flat is surrounded by trees and I'm at eye level with the branches which is lovely for birdwatching.
I've almost decided to stick at 2 mg and, if the pain doesn't subside any more, to go back to 2.5mg as my knees were working well with just the odd twinge at that dose. I might ask about a steroid injection, since more than 20 years ago I had one into a frozen shoulder which gave extraordinary instant relief. Also 11 years ago I had an arthroscopy in my left knee, which gave almost total relief from the agonising pain I was experiencing. Of course, at that time the NHS was working as it should and I had the operation 2 weeks after I saw the consultant. I've been told that the NHS no longer offers this operation, which I hope is untrue but, even if it is still available, I expect there would be a long, long wait to receive it.
There's no problem about getting shopping delivered and I'm going to send an order later, though I normally prefer to do it myself, especially when it comes to choosing fresh fruit and veg. I've thought about Norwegian walking, especially as my local bus goes through Hampstead Heath and I've often passed by groups of people striding along looking very healthy and happy. I'd have to deal with being a bit self-conscious about things like that!
I've just been reading about Flexiseq and it certainly sounds worth trying. I'm just a bit puzzled by the range of prices for the same item - let's hope Nice approves it for prescription.
Flexiseq - often on offer in pharmacies, etc - and if it works then maybe consider Am**** - online - they do a subscribe and save option - does save a bit more.
My wife and I bought a lovely flat back in 2010 and absolutely love it. Like you we are surrounded by trees and it is gorgeous but we don't have a lift either and are on the 2nd floor. I have learned to take it easy going down stairs as that is the difficult and most dangerous part. I carry a trekking pole to remind me not to rush. And fall. Going up is fine!
I'm just going to have an ankle replacement surgery and will have to scoot up on my butt but I will do it! Good luck on prednisolone reductions
When we bought this in 2003 it was one of the basic essentials - ground floor or lift! Others included shops and affordable restaurants in walking distance on the flat and a hospital not far away! This ticked all the boxes ...
We got the shops nearby in including a Marks and Spencer, Boots and our main hospital but two miles away plus Tesco and lots of woods to disappear in. Yep we could do with a lift but are happy up high among the trees! Oh yes a few neighbours are healthcare professionals and our landing neighbour is a GP.
When I moved here in 2011, I was superfit and had never been seriously ill since the age of 3 when I nearly died because of an allergic reaction to penicillin, so I assumed I would always be able to cope with the stairs (plus the fact that the house is on a steep hill) My knees started to misbehave the following year, and the GCA and PMR came on in 2017.
Ah, you understand my predicament! I have to make myself remember to lead with the good-ish leg when walking upstairs and with the really bad one when going downstairs - not quite instinctive yet...
Best of luck with the ankle op. I know people who have had a knee or hip replacement, but nobody with a bionic ankle as far as I know.
By the way, this was meant as a direct response to davidcantswim's first comment, so I don't quite know why it landed here!
I ordered about 6 different knee sleeves , tried them all out and kept this one which was the best of the lot. Good fit, didn't ride up or down my leg, didn't bunch up behind the knee, didn't smell of chemicals, was not too hot to wear, etc. amazon.com/gp/product/B0734...
Thanks for the tip. I've been looking at all those available, and inevitably getting very confused, so a personal testimonial like yours is very useful.
Have you tried Flexiseq yet? jinasc swears by it - and if it helps her knees it must be good!
I don't understand any doctor who is that scared of 2,5mg pred that is saving you taking NSAIDs indefinitely. And getting from 2mg to zero "pretty quickly" is asking for adrenal problems ...
Is it both knees? Not OA as far as I know, but one knee is giving me gip, especially on stairs, and I find a crutch makes a massive difference, I don't have stairs, all buildings in Italy built in the last well over 20 years that are more than 3 levels must have a lift, but buses are a pain!
No, but Sheffieldjane mentioned it and, having read up about it, I'm going to buy a tube to try.
The really bad pain is in my right knee. It came on very suddenly last Wednesday. My left knee has been having the usual odd twinge but I feel it's starting to get worse, probably because I'm unconsciously overcompensating.
I have just started trying acupuncture as my left knee is an absolute pain with osteo-arthritis. My cousin has the same problem and she has found acupuncture and physio to be very helpful. My knee started to play up at the same time that I developed PMR ... interesting I think. I had a steroid injection - made no difference at all.
Miserere, this is my third attempt to reply to you. I wrote two responses yesterday but they both failed to appear! I tried acupuncture when my left knee started giving me trouble, but it had no noticeable effect. I went on to have the keyhole surgery which made a huge difference. In my case, the PMR and GCA didn't start until about four years after my original knee problems.
As you can see it’s a cream colour! It will leave a residual marking on clothing sometimes, but as you say one has to be patient while it’s absorbing into skin! Easier when it’s warmer weather. 🌸
I’m sure it’ll happen one day - I can remember my late husband telling me all those years ago that I’d be able to buy my groceries on a computer one day …. 😉
note my diagnosis is Stills Disease which for me manifests as rheumatoid Disease. Diagnosed in 1979 aged 17 and at that time living in a three story town house with both bathrooms up or down from the living floor space. Anyway until treatment worked I had to go up and down stairs on my bottom using elbows for support as my wrists were too painful and immobile. 40 years on I still do this if my knees are too stiff or painful. Of course your situation is different but I hope this raises a smile at least.
PS: I use prescribed strong Volterol gel for rheumatoid pain in my ribs and it does help me but it does contain NSAIDs so I’m cautious and only use it when I need relief from the relentless nature of the pain.
Oh my goodness, I can imagine! My youngest daughter lived in an 18th century townhouse in Hackney for a while when my knees first started playing up - kitchen in the basement, bathroom 3 flights up... I've no doubt it's been gentrified by now, but then it was still very basic, the stairs were steep and narrow with very shallow treads and the handrail was more of a liability than an asset. I was very cautious when visiting. I only have 4 steps inside my flat from the lobby to the main hallway - it's the stairs to reach my front door that are the problem.
I haven't been as incapacitated as you, but at present I'm having to climb stairs like a toddler, slowly one step at a time. I did a lot of that this afternoon because I had a ticket to see Hitchcock's 'Vertigo', one of my favourite films and I just wasn't going to miss it. I used Leicester Square Tube station , which has flights of stairs both before and after the escalators, and then there was a staircase at the cinema. I apologised to lots of people for holding them up, but they were all very nice and understanding. I got the bus home which took twice as long, but saved me all that embarrassment. 'Vertigo' is even more wonderful on the big screen by the way and I'm glad I went.
sounds fantastic and well done for going, it’s easy to stay home in silence some times but you are clearly full of positivity. I once had to ask another lady to zip up my trousers in the ladies during the interval of a play, it was so embarrassing but the alternative was to remain trapped there until my mum came to look for me. These days it wouldn’t bother me at all although at a cafe recently the server told me ‘health and safety’ meant she couldn’t open my bottle of water for me! Happily the chap in the queue behind me was obliging.
I came DOWN like a stomping toddler. Going up I was crawling on hands and knees. Until pred that was - 6 hours after my first dose and I could move like a grown-up!
I don’t know, but have similar issue. My rheumy is rushing me down to zero, & the osteoarthritis in my left hand is now so bad I can’t pick up a cup with it most of the time, & eating meals is hard & the pain is very sharp indeed. This has only been noticeable since I went from 2mg to 1mg. Right hand & toes are worse, too. I guess the pred was helping the OA & this is something to get used to. I have splints to wear for thumbs & special orthotics for toes! I have bought Flexiseq & due to try today for first time!
I'm sorry to hear you're having such trouble. For the time being, my hands are unaffected, but sooner or later I'll probably find it too painful to knit because of my left thumb joint. So far that's the only part of my hands to be affected.
My thumb joints went first…before PMR, so I had steroid injections in 5hem three times a year. Then they felt better when on higher dose of steroids. I like to play the piano, garden, crochet & walk a dog, as well as bake etc! All the wrong hobbies for OA in the hands/wrists! My left thumb dislocated doing some hand washing last week (I have hypermobility, too), & although back in its socket, it’s worse than usual!! My Dad used to sit holding his thumbs & said the pain was awful, but he was 94 then…I only made it to 62 before the pain started! He played the piano daily for so many years…guess that type of thing doesn’t help! Hope your hands stay good for a while, keep knitting while you can! S x
Yes, of course you may! My consultant asked me to walk round the room & pointed out that I walked on the side of my feet to avoid the pain! It had become a habit, I hadn’t noticed it! She referred me to the Orthotics department, There, the lady examined my feet, then more walking around, then tested toes to see where arthritis hurt the most. She then made impressions of my feet & 3 weeks later I had my first pair to try. They are very specific to your own feet, not just the impressions! Lately I’ve had trouble in the smaller toes, & she examined my feet again, & altered the ‘prescription’ of the insole. I haven’t been able to try the new ones as I fell off the rockery & sprained my ankle & hurt foot. You get two pairs for free…they cost over £100 a pair if you want to buy more! Because I’ve just had a major change made I get two new pairs (but then shouldn’t wear the old ones!) Also, I’m a very outdoors type of person, & like to hike in the woods, walk our neighbours dog, garden etc. I was allowed a new pair after two years as the first one was so worn out!! Do come back to me with any questions, & yes, this lady works solely on feet full time! People with one leg shorter than the other etc. but referral had to come from a specialist in my ‘experience’, though I guess you could go privately. I agree. Socks hurt sometimes. Bed clothes must be light weight & not push down on my feet! As I taper the steroids, so it gets worse (well, it doesn’t really, the steroids mask the OA, I’ve been told (in my case). Is your problem caused by osteoarthritis, though? It sounds like it, but there are other things…my stepdaughter had to have her toes straightened with wire pieces put through them because her big toes hurt so much, & my Mum’s problem was bunions!! S x
Bargain! Mine here were 180 euros for the fitting and first pair. Duplicates are 160 euros. Though the adjustment of the insoles for my existing sandals was a mere 60 euros! They do seem to have achieved the desired effects after a few months ...
Oh, sorry, I don’t know how much over there £100 they cost here! Once she said ‘over £100’ I decided to wait & see how I got on! Then came Covid years, so didn’t go out, so didn’t need more than two pairs! But, obviously, fitting all free here on the NHS, & appointments etc. she rings me every six months, & sees me once a year, unless I need to see her because they’ve changed. For this & this alone there seems to be no queue, no backlog, appointments are very quick to come through! S x
Mine are tax deductible at least! You get made to measure shoes and insoles if you have a genuine need for them and ordinary shoes aren't suitable - there is an orthopaedic shoemaker in the village (has made shoes for Pope Benedict) and another in an adjacent village who also has a very good shoe shop. I prefer the second one,
what’s tax? No, actually, now I’m an official OAP I will actually have a tax liability this year, but not a lot! Just 15 years ago I had a minus tax code…last 3 years I’ve had none! Pension taxed at source. I like that…a shoemaker in the village, very good. Shoes…I always buy them on Italian markets…& just window shop in Italian shoe shop windows!!
oh, I bought a wonderful pair of trainers on the market in Merano…Street price £120, market price £50! Fantastic. I’m very restricted in what I can wear with lumpy bumpy insoles taking up so much room, & coming up so high at the sides! Well known expensive brands there.
There’s not much left approved by my orthotics lady…& now I have hypermobility issues & my ankle subluxates I’m only to walk any distance in something that protects my ankle. For everything else I’m allowed trainers…but love Crocs for every day use & it’s hard not wearing them!!
That is the plus of my favoured orthotics chap - they help a lot with fitting orthotic to footwear. My favourite daytime footwear has a replaceable insole and is ideal for an orthotic but they are 10 years old and not worth spending the money on - I am bound to seek similar ones soon as they have already been glued by the cobbler once! I suppose you could liken them to up-market Crocs in leather - I really can't cope with them though.
I had to take a range of footwear to my first appointment…some was approved, some not approved! No crocs, no sandals, no shoes that are open at the back! Sounds like you need to get some more, but ten years is a good time! S x
These loved houseshoes are open at the back but have a removable insole that is replaced with the custom one. I rank buying shoes alongside a new bra - nightmare!
They’re nice ones! I like them. We have a lot of them & live in them! Well, of course I don’t now, as they’re not allowed. But some days when in & out if damp garden, keep having to change shoes, they’re so much easier!! S xx
we put ours in the washing machine! With old towels or something like that otherwise they knock around a lot! It’s been wonderful, they come out like new!
When I get down to such a low dose, I'm going to take a nail file to my pills, instead of trying to drop even 1/4 of a milligram. One week, file off some dust. The next month file off a little more dust. No, you can't report to your doctor exactly what your taper is but it's easier to fool your immune system at that rate.
One thing I discovered. People used to take massive amounts of aspirin for all kinds of rheumatic disorders, and it can affect the stomach at those high doses. But taking an aspirin IS very helpful for osteoarthritis, and unlikely to hurt you in any way.
Another new discovery is that 1/2 tsp baking soda in a cup of water signals to your autoimmune responses that your body can let its guard down and not react negatively to possible invaders.
"But taking an aspirin IS very helpful for osteoarthritis, and unlikely to hurt you in any way."
Given that the latest recommendations for managing GCA have removed the suggestion for low dose aspirin as used for cardiovascular events because the risks of bleeding outweigh any possible benefit, I imagine the dose of aspirin required for OA would be VERY likely to hurt you in some way.
By the way - it would be really helpful if you completed your profile page with some background relating to your PMR/GCA and a bit about yourself.
I'm a new student of PMR with family history in my dad 20 years ago. I had to diagnose and treat myself. My new GP refuses to treat it as I was already on pred before I could get an appointment, normal labs, and local rheums rejected the referral she sent. If someone accepts it, it could be October before I get in anyway. So right now I am still on my own, with two smart doctors, hubby and daughter, validating my decisions.
GCA I am scared of and would not take aspirin in that case. Tylenol, OTOH, I have always been leery of as I hoard iron in my liver, having DNA for hemochromatosis. I donate blood for this. I tend to take a half dose of things instead of two.
Facebook PMR pages and the Mayo Clinic forum are also great reading. Many people are put on Plaquenil by their rheums, which I took for lupus also. I noticed a difference right away. It has a long half life and builds up best at 3 months. I want to prevent relapse and avoid GCA. Since I am responsible for all of it at the moment, doing my best!
I take 1/2 tsp of baking soda in water for my occasional bouts of indigestion. It works far better than more sopisticated remedies. One good burp 5 minutes after and I feel fine. I've never heard before that it has any effect on the autoimmune system.
Wow, that's a scary article. Who would have thought that bicarb could be so risky? Well, I only take 1/2 teaspoonful at a time (more would be rather disgusting) and only once every few weeks, so I'm not going to worry too much.
It's present in club soda too. I Awlays used it on my teeth, and when I became allergic to ppi drugs, in a pinch, it relieved any heartburn, which I rarely get now.Funny, on the acid side of things, I found myself gulping down a capful of Amish leg cramp remedy and rubbing it on my feet, pure high acid vinegar. It worked immediately! Quinine and tonic water, magnesium take longer.
I had the same problem as you . Trying to reduce my steroids very slowly as advised but my knee is playing up so much more and my hip too . Went for a walk today and could barely manage it .
It’s very disappointing because I would love to be able to go down to zero ! But at the moment I can’t.
I'm lucky in that, so far, I've had no problems with my hips. My knee is still bad, but not as crippling as when it started playing up a couple of weeks ago. I went to my GP last week and he said for the time being do some exercises which he emailed to me, plus paracetemol, which I find does nothing for arthritis pain. If it persists he'll arrange an x-ray and a steroid injection. I have some hopes for that as I had one more than twenty years ago for a frozen shoulder and it worked immediately. I suppose if I hadn't been prescribed prednisolone for GCA and PMR for the last six years, my arthritis pain would have been much worse - it's swings and roundabouts! Good luck with your own progress towards being as painfree as possible.
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