Polymyalgia pain ..........
Posted , 14 users are following.
Hi William ,I am a 54 yr old female ,had PMR for 2 years now ,started on 20 now I am on the reduction and on 5 mg of pred .like every one else I am still in lots of pain ,especially in the mornings and after tea time when I tend to sit down and relax .every day my pain is some where different , but most commonly in my hips,knees ,arms and shoulder and neck .some days it really hurts when I sneeze or take a big breath in ,like my ribs are going to crake ,.oh and my husband says I have this funny little waddle like walk in the morning till I gat used to the pain .My rhumy is pleased with my reduction .......but just keeps saying to me well !you will still have a little pain as you cut down on your PRED ........wish for just one day only he could experience all the pain some of us on here suffer .rant over xxx merry Christmas to all of you wonderful people on here xxx
1 like, 63 replies
david14272 karen28161
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pat38625 karen28161
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I honestly appreciate every persons contribution on this site. Merry Christmas to you.
Mrs.Mac-Canada karen28161
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Reducing from 5 is a tough one for many, many of us. I don't know what reduction plan you are on but I had to go to the" very slow almost stop" method of reducing at that point and actually stay on the lower dosage longer before starting to reduce again.
As David says you'll be hearing from the "experts" on this forum who have wonderful advice and alot of experience.
I hope you get your pain in contol and have a very Merry Christmas and Happy and HEALTHY New year
Hugs, Diana
karen28161
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tina-uk_cwall karen28161
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your rheumatologist obviously wants you to taper off of prednisone Asap, well, don't we all. But it's been said many times the inflamation will burn it's out as and when it wants to and not before, the prednisone simply makes our lives bearable.
i know that blood tests , ESR and CRP levels do not always show inflamation even when we are in much pain and therefore there must be inflamation, unless the pain is due to something else. What did your last blood tests reveal. All the areas of your body you're saying you are suffering pain are where I suffered extreme pain and I remember thinking that there must be something wrong with my heart the pain around my ribs was so bad. But, as soon as I took the prednisone within a very short time the pain had all but cleared up. I have experienced a return of pain twice when attempting tapering from 9to 8mgs, unsuccessfully so I upped the dosage again. I am a strong believer that only we know how painful our bodies are when tapering and I won't suffer the pain I went through prior to diagnosis, I don't think I could bear it. Karen, you must take more control here, and teper down as and when you can and not simply to please the clinicians or because you feel you need to fit into a schedule or a set recovery plan that you feel must work for everyone else, because it doesn't.
i was diagnosed this time last year although I had the symptoms since the September. Everything was fine on the slow tapering until 6 weeks ago when as I said I attempted to tepaer from 9to 8 mgs, twice. Clearly I must have still have a lot of inflamation because the tapering failed on both occasions, but I don't care. I will keep myself stable and pain free for quite a while and then try again.
karen, do not suffer in silence, go back to your gp and be truthful with them because none of us deserve to be in pain. I wish you all the luck, and I'm sorry I've been so mean to you, but you don't earn extra points for tolerating pain when you don't need to. Christina
pattik tina-uk_cwall
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pat38625 pattik
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I don't take anything for pain because I am not in pain but I would say that some people would suggest co-codemal, but please don't suffer pain, go back to your gp and explaiin. All the best
pattik pat38625
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The first visit. I've been in a lot of pain in the morning until prednisone kicks in abou 4:45 min after taking. My husband has been supportive because I feel like a former shell of myself. I am diabetic and the prednisone really has elevated my BS. This is a nasty disease. Thanks for the info
pat38625 pattik
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EileenH pattik
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Reducing the amount of carbs you eat helps a lot with the blood sugar problem - and also the weight gain for many. Pred alters how the body processes carbs and that can be a problem as you have found - you have to be much more careful with your diet than usual.
pattik EileenH
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tina-uk_cwall karen28161
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karen28161 tina-uk_cwall
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EileenH karen28161
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It is, of course, also possible that you have had a return of the PMR at a higher intensity - it doesn't remain steady, it can wane and then flare up again. I have had PMR for 10 years, I know plenty of people who have had it well over 2 years and some have reduced a fair way and then had a relapse. The pred manages it not cures it, and you need enough to manage it until it dies down. Only a quarter of patients are off pred in 2 years, half need pred for more like 4 to 6 years.
Christina is right - you need to go to your GP and tell him this isn't wnough and you want to go back to where you were reasonably pain-free and then try a reduction in very small steps again - there are reduction plans on here which may work for you and we will explain them but there is no point trying them until you are feeling better.
It may even mean asking if you can be referred elsewhere if your GP won't take on the job of monitoring you. It would be a help of course if a few more doctors suffered from it themselves - on another forum a former GP now has PMR and realises the mistakes she made for her patients in the past!
davidmelville karen28161
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Why oh oh why are we brainwashed into clawing to achieve reduction and suffer when a little more of the 'awful' Prednisolone would make has nearer pain free.
i am totally guilty of knowing the answer and totally guilty of still under taking! Why!
I'm sitting here on the bed about to pop the pain killers when a few hours ago I could have taken more Prednisolone and be free.
Howmany other suffer thus madness?
Nefret davidmelville
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Also I am now in a position where I need to take strong painkillers for a completely separate condition. Had I been using these or any other painkillers to supplement Pred for PMR I would now have nowhere to go for effective pain relief. Pred has no effect on my other conditions and no matter how long you have had PMR, we are all at least a little older than when we started and ageing brings it's own problems.
Don't get caught out with nowhere to hide!
EileenH Nefret
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Use the dose that works - because if you are on too little you are more immobile and in pain and that is also a recipe for disaster in terms of osteoporosis and depression.