Hi I have just gone down to 5 mg. not had any pmr pains yet. So ok so far. But what I am wondering is I expect to get some pains as I reduce. But before I had pmr I have had pain in knees for some years. Not taken anything for it. Except a few steroid injections over the years they say osteoarthritis but I think it’s a injury in both knees. Also for a year before pmr after sitting in car for a while I couldn’t straighten my knees when I got out. All this has gone with pred. So as I reduce I expect it to come back My question is will that put my blood inflammation up. And effect my pmr. Because my body is trying to deal with the knees What does anyone think. Thank you
Knee pain : Hi I have just gone down to 5 mg. not... - PMRGCAuk
Knee pain
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zoey12
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I will try to find my knee journey. As for PMR pain as you reduce - this is why we recommend introducing the new dose slowly through a slow plan like Deat Slow nearly Stop, Dorsetlady's Simple Taper or Tortoise not Hare. This helps to differentiate between steroid withdrawal, which eases over a few days, and growing PMR breakthrough pain, which gets worse as the taper continues. You can find a post on tapering steroids in our pinned posts. Knee info to follow!
If pred helped your knees it means there was inflammation the steroid has calmed. I found the same in my early days with pred. Very slow taper also helps prevent a major recurrence of other issues it has been helping, not just PMR. At least in my experience. Eventually you will have to deal with the OA again.
Thank you. Yes I realise I will have to deal with the oa. In future. Not looking forward to that but. I want to understand if it might be attached to the pmr. Or separate. Or if it will interfere with my progress getting off pred. I suppose it’s watch this space. Thanks
It may have interfered with my PMR recovery, although I think it more likely the PMR confused some OA symptoms. I'm thinking of early last year when I had terrible debilitating pain in my shoulders, which I blamed on OA, until I a) remembered this was a symptom of PMR before I was diagnosed and b) discovered my CPR was reading the highest it ever had, even since before diagnosis. Increased pred worked miraculously, and since then I've decided it must have been PMR not OA, especially as I've been tapering quite successfully lately and, touch wood, shoulders are not bothering me. Btw my shoulders have not been x-rayed, about the only bit of me that hasn't, but I don't think I have OA in the shoulders or surely they would be troubling me even if only mildly, at 2.5 mg?
Just read your knee problem on your thread. Thank you for that. It’s very useful information. My knees are similar so very helpful. Gives me hope
I think you'll find more than you ever wanted to know about my knees in this thread - just look for my name in the replies. Hopefully you will find some useful tips. No, I have not had a knee replacement, I was replying to someone looking for information.
DorsetLadyPMRGCAuk volunteer
My OA pains resurfaced as I reduced Pred (did have GCA but not PMR) - can’t say my inflammation markers changed to any great degree nor did it affect my GCA per se.
Why do you think your pain is not OA? have knees been X-rayed to see? …and what injuries are you referring to? Joint or muscles?
You can take paracetamol (if it’s effective) or use gel on knees once the pains return, assuming they do.
Thank you. For reply. Yes I had x ray on both knees some years ago. One knee got lost the other said a bit of osteoarthritis. But on both knees pain coming from same place inside leg on a round notch area level with middle of knees. Comes and goes. I wondered if this pain would make my recovery worse from pmr. Or even if it added to me getting pmr. Did this knee problem cause inflammation in my blood for years building up then eventually getting pmr.
Your questions re connection to PMR -not sure anyone can categorically say knees were to blame. Could have been a contributing factor maybe, or maybe not!
And I doubt it will significantly hamper recovery - just another thing to consider.
Sorry if it sounds a bit wishy washy -but there isn’t a definitive answer -that the nature of the beast!
Yes it’s never black and white with this pmr. It really annoys me I can’t bottom all my pains etc. Or fully understand how it works. And no gp. Can tell me anything concrete either. I don’t think there are any g p s that know much not in my practice anyway. Thank you for your thoughts on this
I was first actually diagnosed with OA when I was 40, but sure I already had it in my neck and possibly feet before that. I'm now 75, and first diagnosed with PMR when 68, had inklings of it much earlier. I never made any connection between the two conditions, although for about a year before PMR diagnosis I thought the pain was from OA getting worse. When it came to pred my earliest dose relieved all my aches and pains. Since then as the arthritic symptoms resurfaced with lowering pred dose I've sorted most of them with physio, not with maintaining a higher dose than needed for PMR. I know pred is a miracle drug and am grateful to it, but I'm also rather afraid of it and never want to take more than absolutely necessary for PMR. It is much to my dismay that I've now been taking it for seven years, On the other hand, although arthritis has definitely "progressed", I'm handling it much better than I did before. I don't think OA contributed to PMR, but just my opinion. Perhaps they have a common etiology, related to immune system?
Mmm interesting. About your knees. My knees where getting worse for a couple of years before pmr. I would prefer to do what you have done excerise I don’t want to stay on pred any longer than I have to.
I doubt that was the cause - except that knees can be involved in PMR. I was told by a doctor early in PMR the knee pain was OA, she could "feel it", no imaging done though. Some 13 years later I had some odd knee pain and my GP here did x-rays. Absolutely no sign of OA.
That’s interesting as I think I should go and have my knees re diagnosed and looked into a bit more. They are too quick at putting it down to osteoarthritis
They are - I believe nothing without some evidence!!! They are also quick enough to say that pred doesn't help OA when it suits them.
All my pains in knees disappeared in days with pred. But the condition must still be there surely
Which condition? I was told it was OA - it obviously wasn't. PMR is a chronic condition and chugs along in the background as long as the underlying autoimmune cause is active. The pred is a management strategy - not a cure.
Yes so what is the underlying condition. I wonder. If I could fix that. Or know what it is. I could work towards dealing with that problem. That must help. But I don’t know how to find out what my underlying condition is. Why it came on in the first place. As it could come back. Was it progressing for years. Or just turn up last October. I wonder.
Hi was just reading posts,and iam using your slow taper,printed it off but some how I've not got the finish, Help lol
This is PMRpro’s -
healthunlocked.com/pmrgcauk...
This is mine -
healthunlocked.com/pmrgcauk...
You have asked for both in last.
Yes the condition whether OA or an old injury is still there, but the pain caused by it is masked by the steroids above certain levels.
Yes ok. So soon I will be feeling it again hopefully it won’t interfere with my progress tapering down on pred and very important not contribute to getting pmr back as I wonder if it will agrevate the situation
Well I think you need clarification of what is is -OA, old injury or PMR - then it can be addressed. But the clarification may not be easy -only time will tell.
Yes I agree. I will have to monitor it. I will stabilise at 5 mg for now and it will be interesting to see what happens after that thank you
In so much pain I paid to go to Spire and had MRI on my spine...lower back showed OA in both facet joints....Now lowering pred, it's getting worse...May be coincidence....
It has been acknowledged there is an inflammatory component to OA alongside the degenerative side:
Interesting, in that I have had x-rays confirming OA in one knee in particular, mild in the other, but when the PMR struck both knees got significantly worse and then the pain disappeared with the pred. I expect the pain to come back as the pred dose tapers off and wonder if the added knee pain was because of, or the cause of, the PMR...
zoey12• in reply to
I have to agree with you this is what I want to know. Has the knee pain years ago over the years started pmr. As I just put up with the pain in my knees didn’t take pain killers as I don’t like to take them Would I have had inflammation when I had the knee pain. Real shame no one is looking into this as it matters as we taper and knee pain comes back.
As PMRpro shared, OA does cause inflammation. Those bone spurs rub against soft tissue, causing the inflammation. Prednisone reduces the inflammation, reducing the pain. As you wean off prednisone, the inflammation and associated pain will return. I have had both knees replaced. Still had some pain and stiffness at times. Prednisone has greatly reduced those symptoms.
Thanks ok yes I see what you are saying. So do you think that the knee pain when it comes back and obviously giving me inflammation will cause pmr to be hindered as inflammation is already up with knee pain am I right in thinking I need to have no inflammation if possible. To get best results of getting of pred and getting better of pmr would love your thoughts thank you
Even though I was facing knee replacement surgery, my lab results were not showing high signs of inflammation. I would suggest you talk with a rheumatologist, as they treat both issues. I am still fairly new in this journey, but my rheumatologist told me on my first appointment that he doesn't have a problem with people staying on low doses of prednisone longer term. May be an answer to your knee issues. He was talking 5 mg or less. I was taking ibuprofen to fight inflammation and for pain relief previously, not recommended with prednisone though. So if you completely come off prednisone, you may have to pursue other anti inflammatory meds, probably as you did before. Prednisone is reducing/eliminating the inflammation, not curing the underlying problem causing the inflammation.
Thank you for that yes I am new to it. Only end January this year when I started on 15 mg so yes I don’t know a lot. But I am learning and beining to realise this is going to stay with me for life. Not a good thought
Well, the good news is that they say pmr can run its course in a couple of years. But, there are certainly others on here who have had it for much longer periods. I'm hopefully optimistic that I will be one of the lucky ones that has it go away quickly! 😀
Not necessarily - PMR does burn out for the vast majority of patients. It just tends to last longer than a lot of doctors seem to think! Four or five years is a really common timespan.
Well that’s something to look towards but I suppose. But I really don’t fancy taking drugs all that time. It’s quite frightening what pred can and has done already to my body. You can’t see inside your body to see what it’s doing. I wish I could. I think if I manage to get to 2 mg I will try the Chinese doctor in the town near me. It’s a mixed herb tea powder and acupuncture combined. But not yet as I’m on 5 mg.
Yes but if you weren’t taking it you don’t know what damage the inflammation would be doing to your body either. A lot worse for sure. …
As for Chinese medicine - not sure that’s as rigorously controlled, so just be aware.
Yes damage to body could be worse than low dose pred I suppose. So no choice really. Chinese herbs. Yes I am a bit. Wary. But just chewing it over in my. Brain at moment.
It probably depends on where you source it - there have been cases of Chinese remedies containing non-declared high dose steroids, of course they worked on PMR. But since they aren't regulated or monitored you are in the dark.
Yes a bit concerned about that. Looking at these mixer of different herbs that you drink as tea. They say what’s in it. But it could have something else to make it really work. Could do with some one testing the ingredients
There was a something circulating the internet a few years ago with rave reviews, even for PMR. I think it was Denmark decides to do a check - and discovered that there was a massive dose of steroid of some sort in it. Not mentioned - in fact it was being touted as a steroid-free way to manage PMR.
Yes I am wary of this. They are usually powder to drink tell you everything in it but I wonder if they have added a steroid to make it work. So I am also thinking about. Doing the juice from just some of these items and drinking it daily. That’s maybe. Well actually I am at this very moment boiling some cut garlic for 10 mins and going to drink a little juice each day to try it. I take turemic also. And maybe I will try another item as well I don’t think it’s meant to cure. Just keep pmr down a bit and apparently you need to drink the juice each day. So I am thinking it only works for the day. Don’t think it can do any harm. I eat a bit of raw ginger each day. But it looks like you should simmer it and drink the juice for inflammation. I will see how this goes
It’s unlikely that PMR will be with you for life….a few years yes, but not for ever. Unless you are very unlucky…
That’s very re assuring.
I had a slight issues with my knees prior to emergence of PMR symptoms, but when they did emerge they started in my knees and slowly worked up my body over the course of 6 months. It was so painful I ended up having an MRI of both knees which revealed many problems including OA. I had steroid injections in my right knee over the commencing year and saw two ortho surgeons for a potential knee replacement.
I then went on to lose 25 pounds and become more active and my knee pain went away. It hasn’t been back as I’ve lowered from 20mg of pred down to 7.5. Only once, when I had to stop my Methotrexate for a month, did pain return in my right knee.
I am anticipating my knee pain will emerge once I lower my pred further. Was told by surgeons that eventually, if the OA progresses, a knee replacement is in my future (but it could be delayed if I lost and kept off weight).
Not sure if an increase in knee pain coincides with increased inflammation/PMR.
Like many of you it seems my knees were the most painful part of my PMR, and for several months before the rest of my body kicked off. Since taking pred I've been totally pain free in my knees though my back and hips still get sore at times. X rays on my knees showed no OA so it will be interesting to see if the pain comes back though I do hope it doesn't!!
Mmm so there looks like there is a connection between knees and pmr. I read a specialist did a survey and most pmr patients had knee problems before. But did they just have worn out knees or was it begging of pmr. That’s the question
This picture shows where PMR affects -(blue lines). Some people say shoulders started first, some say knees, some hips… so as I probably said previously no one can give a definitive answer…sometimes you just have to accept that fact.
Crossover
Thank you. This is very interesting
It part of a wider article -but thought its probably all you want to know at moment.
Thanks
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