POLYMYALGIA AND RELAPSES
Posted , 10 users are following.
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.
0 likes, 20 replies
dmart7 marg44743
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marg44743 dmart7
Posted
it was worth a thought however.
Anhaga marg44743
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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.
Anhaga
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marg44743 Anhaga
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thank you so much.
Marg
Anhaga marg44743
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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!
marg44743 Anhaga
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Marg
Anhaga marg44743
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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.
EileenH marg44743
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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.
Michdonn marg44743
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EileenH marg44743
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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.
marg44743 EileenH
Posted
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
EileenH marg44743
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Mrs.Mac-Canada marg44743
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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🌸
marg44743 Mrs.Mac-Canada
Posted
cheers
marg
EileenH marg44743
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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.