I was diagnosed with PMR Dec 2015 with devastating symptoms however, I was treated promptly. Each time I reduce to less than 5mg of prednisone, I relapse. The pain and stiffness targeted my R knee, and then the L knee, which left me unable to move that limb. I immediately took a loading dose of prednisone 25mg for three days, then 12.5mg for three days, then 6mg, then very slowly decreased. I used a very slow method that I came across online over 45 days. I am now on 4mg for week or more, and am experiencing inner knee pain (intermittent), and bilateral leg aches.
i don’t know if this is PMR related or that there is something else going on.
Can anyone shed any light on these symptoms.
i have read many patient forums, and many experience varied symptoms.
i am keen to hear and share some stories.
I am tempted to suggest that your knee pain is nothing to do with your PMR. Shoulders and hip pain are the primary sites for PMR, albeit often with some peripheral involvement such as wrists etc. Knee pain is often caused by inflammation, unrelated to PMR, but Pred will act lower the inflammation.
THanks for your suggestion. I have been seen by Orthopaedic, neurologist, vascular and all exclude the the symptoms and discomfort that I am experiencing. The two relapses were knees on separate occasions that were so stiff that I could not bend or sit and rise without some assistance. The loading dose of prednisone sorted it within a couple of hours.
it was worth a thought however.
Have you seen a physiotherapist? They can often do techniques which reduce muscle spasms, which helps with pain. And give you exercises which strengthen muscles. Imbalance in muscle strength can cause pain in joints when things are pulled slightly out of line.
I had spasmed muscles in my back I didn't even know about and my physiotherapist got them loosened up and normal. Took a few sessions. Following that, the pain I'd had in my hip which was so bad I'd thought I might need a hip replacement (no sign of osteoarthritis) cleared up and has never returned.
Oh, and my initial dose of pred got rid of all my pain, including the hip, which began to return as I tapered.
You are NEVER relentlessly reducing to zero - you are looking for the lowest dose that manages the symptoms as well as your starting dose did, that is your yardstick. If you are repeatedly getting symptoms if you go below 5mg - your dose is 5mg. It doesn't mean you won't get lower - just not yet. It will come.
PMR is a chronic autoimmune illness with a median duration of 5.9 years - you are well inside that and although a few people get off pred in 2 years or less they are very unusual and more likely to have a return of PMR at some later date. The pred only relieves the inflammation that is the cause of the symptoms so you can have a better quality of life in the meantime until the autoimmune part burns out and goes into remission. Most of the people I know took 4 or 5 years to get off pred - but for 5% of us it goes on for a very long time. Most of those people manage on 5mg or less though - low doses that are not a problem as the so-called side effects of pred at pMR doses would have occurred in an age-matched population who were not on pred.
The work that has found that PMR lasts so long and that the low doses are not a problem is relatively recent from the Mayo Clinic and many doctors are not yet aware of it:
https://www.practicalpainmanagement.com/resources/news-and-research/polymyalgia-rheumatica-steroid-side-effects-new-findings
Patients have been saying for a long time that PMR lasts more than the 2 years so many doctors talk about - now we have proof!
Anhaga's comments are very well worth thinking about - if you have tight back muscles it can affect your knees too because it affects the way you walk.
Hi Marg,
I have had PMR for 5+ years and have had 3 flares. My last was 2 years ago and I had to increase, during my reduction from 4mg to 3.5mg) up to 15mg which I was able to reduce to 5mg in a couple of weeks. From others experience and advice on this forum I stayed at 5mg for 7 months. It seems that staying at 5mg for a few months gives the adrenals time to “wake up”. I am now at 3.5mg by using my modified DSNS method which is actually slower than DSNS and will stay here for a couple of months until I’m sure my body is happy at that dose. I never ever try to lower if I have pain or find I tire very easily.
Having PMR is a real lesson in getting to know your body well and patience. It is important to acknowledge that, although we all have PMR, our symptoms and management of them vary for each person and our goal is to get to “the lowest dose of prednisone that will manage our symptoms “.
I hope you knee problem is resolved soon and that you are successful in finding a reduction plan that works for you.
Diana🌸
Marg, I always trying to figure out is my pain from something I done PMR pain or something else. Currently in the midst of a flare started with piriformis syndrome and blossom into full blown flare. So now I have two problems. Up the Pred and go for a massage. We have to learn to listen to our bodies. I have tendency to over do it and hurt myself, which I did. You have to think about what you have done, sometimes it is something very simple that you have not done for awhile or just more of something you normal do. Each time I over do it I have to figure it out sometime I get both, like now. But I will get over it and start reducing my dosage, I will not reduce if I have any PMR pain, but every time so far I have been able to get PMR pain free. Figure it out and act accordingly, think positive and try to smile. ☺️ You can do it!
A few months before my Jan 2016 PMR diagnosis, I was unable to completely fold my knees. It felt like cement wedges were preventing it. My 15 mg dose of pred solved that. I later had one knee replaced because of prior damage from a fall but the other knee, after a couple of drains and a couple of steroid shots, is working well so far. I had no knee problems, except for the one fallen on, until PMR. Sounds as though you need more pred.
Thanks for the tip Anhaga. I have made an appointment with a physiotherapist for this Thursday 8 August, and also in that venue is a rehab physiology. I’ll try anything rather than increase my prednisone again. Although reading through Eileen ‘s forum, I may have to increase my prednisone to 5mg for awhile. I do occasionally have a slight lumbar nag.
thank you so much.
Marg
hi Eileen. I have read many of your forums, which have helped keep me in the loop. I am overwhelmed with the replies and support. It has been comforting to be able to share each of our experiences.
i agree with you that I need to settle for 5mg. I’m not quite sure that I may need to go a little higher initially to get on top of my aches and pain. I have a small amount of stiffness in my R knee but, nothing like before. I was trying to ride through it for a few more days. What to you think? I have read many of your forums over the past couple of years, and would appreciate your expertise.
thank you so much
marg
Hi Diana and thanks for your experience. I now believe that I should have stayed on 5mg for longer than I did as I keep coming back to square one. I’d prefer not to go back to 15, and although it can be quickly titrated! I haven’t reached desperate stage as before. I did use the 45 day reduction (very slow)! And this is where I am at the moment
cheers
marg
It depends - if the pain is stable or improving then you may get away with the dose you are at. But if it is getting worse, even only slightly, you possibly need a bit more.
You needn't go back to 15 for a flare - often adding 5mg to the dose where the flare happened is plenty. And equally , you may not need it for more than a few days. Up to a week you could just drop straight back to your chosen dose.
Hi Michdonn
I take on board what you are saying. All in all I have been well until such times as I decide....” I need to get down to a lower dose”. I am learning though, and the forums have been an immense help with building hope. I realise I have to have more patience.
Cheers
Marg
Good! Just be sure your physiotherapist knows you have PMR and what the implications of that are (weakened muscles which are intolerant of repetitive and strenuous exercise). My physiotherapist never expect me to get stronger (I didn't) but she wanted to help me retain range of motion and not lose any more strength. I'm hopeful that as I start to recover from PMR I will also start to regain strength - heaven knows I wasn't very strong to begin with!
Cheers Anhaga.....I also upped my Pred to 10mg two days ago which has helped a bit but, I guess it needs more time. It appears to be a yo yo with me. Anyway I’m giving the next move (physio) a chance. Physio will be well informed of my med history.
Marg
No, no, don't say yo-yo is the way you have to go. Be careful with your next taper and it should go better.
It is a problem if you get into a yoyo pattern - with each flare you may need more pred to get it back under control. If you develop a flare at a similar dose each time it is your body telling you that you have reached what you are looking for: the lowest dose that manages the symptoms as well as the starting dose did.
As Anhaga says - with a bit more care you will realise much more quickly you have reduced too far - then you go straight back tot he dose that works. Result - no flare.
I think that your dosage requirement is very typical of a lot of us. I ended up right at 5mg (based on my 140lb weight) for a couple of years and now at about 3mg after a full 5.5 years since onset of pmr.
I learned not to hold back on the pred when symptoms worsen, so I now seasonally adjust in real time, as needed, between 2mg and 3.75mg which is my current dose. I am doing well and staying active year-round, but just have to adjust my dosage in real time whenever symptoms worsen. Cutting back on dosage can only be tolerable to a certain degree, and subject to change. I try to get up and out of the house as early as possible, before my energy wanes, and this does a lot of good.