Why I wonder although my rheumi has assured me in his opinion I no longer have pmr I have stiff legs I can pull leg onto chest when lying down but walking is a different matter and very annoying . I know there are people much worse than me but that doesn't help does it.
Stiff legs: Why I wonder although my rheumi has... - PMRGCAuk
Stiff legs
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Perkey
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Nope it helps not at all. How long have you had Rheumy approved PMR? Mine even had the audacity to write in my notes that PMR is resolved! What? I would love to see her live with this "resolution"!
Trouble is that the records can be seen by insurances and benefits to name just two. How can we be expected to fight our corner when the so called experts are so inaccurate?
😳
• in reply toPMRandRA
I think the fact that agencies have access to medical records that are based on inaccurate assessments is terrible. I am in my mid 50s and have been unable to function let alone work for several years due to the cumulative effect of three or four illnesses prior to pmr. Since diagnosed with these illnesses and having been through referral systems to pain clinic sleep clinic etc i tend to manage conditions though medication and advice gleaned through those referral processes and only see go for new issues. When I applied to be assessed for support rather than work group Esa I was told by my gp that I "didn't know how to play the game"...in other words to ensure they fully supported such claims I had to be going see dr all the time. That would be ok if you could get appointments for a start!
Several years down the line and my body g made me play the game. The past 18mths I have had blood tests at least twice a month....rheumy go diabetes clinic. One thing I can say for sure to that gp .. ..this sure doesn't feel.like a game
PMRproAmbassador
On what grounds is he saying you don't have PMR any more? It doesn't advertise itself on your forehead! You don't have PMR when you are able to reduce to zero pred and no symptoms come back.
I know a few people who had the stiff hips and PMR-waddle style of walking right until after they got off pred. It can also be due to low back problems - any other signs of that?
And no, it doesn't help when you can't do this - and fun and games this is definitely NOT! Particularly since everyone feels it their duty to tell you you don't LOOK ill!
Love the idea of pmr waddle! Is that why I keep hitting door frames? Husband had just filed all the sticky out bits on the door handles to stop any more damage to my poor body
Some doctors call it diagnostic it is so typical.
I met up with some old work colleagues yesterday who hadn't seen me since my pre-PMR days... I had told them about my condition, but they were clearly surprised to see how "well" I looked! Nice rounded face (not my usual naturally thin face). I think people expect you to look "ill". I'm not sure if they noticed how stiff I was when I stood, having been sitting in the restaurant for three hours! Perhaps they noticed the "PMR waddle" as I walked away from the group to return to my car. Not quite so "well" then...!
Funny isn't it - how being plumper than one may have been equates to being "well" despite all the frenzy about obesity...
DorsetLadyPMRGCAuk volunteer
Hi,
No it doesn't help, my late hubby used to say "I know others are worse than me, and I'm sorry for that, but knowing that doesn't get rid of my pain".
You may be able to pull your legs up to chest when laying down, but they are not under the same pressure than when walking!
Hope that's not your Rheumy's criteria for saying you no longer have PMR!
As a matter of interest how long have you been diagnosed and what dose are you on?
Take care.
Dorset lady I am off steroids have been for 4 months don't want Togo back to them, not that he has suggested I do. Since then have had that awful angiogram and diagnosed now with angina !! Never mind the sun is out and I am still breathing. Have just sold my house in Kent and moving to Newcastle to live near my daughter so stiff leg or back I have to keep going.
Hope you have some winter undies 
!!! I moved from Scotland to Durham - I have never been so cold in winter in my life! And in summer I needed my conservatory to be able to sit "outside in the garden". But it is a lovely area and the natives are friendly...
Where are you moving to?
North Shields my daughter has warned me about winter woolies !
if you're going to North Shields you'll need wellies and sou'wester too! Not that what you get there is a south-west wind - straight off the northern North Sea more like!
But I like Newcastle - and the hospitals are pretty good. There is also a superb support group there that meets in Gateshead somewhere.
He may well be right then.! If you're symptom free then hopefully it's gone - do hope so!
It does take some time to get to normal though even when you're off Pred, and it's probably more to do with the angina. Hopefully it's manageable with tablets, must be I guess or they'd have given you stents whilst doing the angiogram.
As PMRpro says you'll notice the change in temperature "oop north" - when I visit son in Peak District is at least 5degrees colder than Dorset! But maybe I'm just a "southern softie"!
Sure you enjoy Newcastle, everybody says it's great, and you'll be nearer family which is nice.
Good luck.
Hmmm. I am in the same boat. In January, my Rheumatologist said that based on my blood work (highest end of normal for C reactive protein and sedimentation), I no longer had PMR. I felt quite lucky and certainly grateful. Still do. But also frustrated because I still have most of the same symptoms, just at a reduced level. He told me my symptoms must simply be from having been on prednisone for two years. I was thinking "Hmmm...I know what PMR feels like and I wish I could put you in my body for a day so you could know also." I waited six months thinking with a good diet and continued exercise they might just subside over time. I am stronger and likely healthier for it, but I'm still decently sore, stiff and mostly...klutzy. The lack of coordination, particularly in my legs, is what truly bothers me. The ligaments in my legs and knees seem particularly tender. This may simply be my "new normal". But before I accept that, my plan is to go see my very first Rheumatologist who was better at listening to me. She moved to a new office, but it will be worth the longer drive to check on her opinion. I look forward to hearing about other's experience with life "post PMR"
Were you still on pred at the time? And what is your CRP now?
I wish I knew what makes them think that PMR has a turn-off switch that operates after 2 years. It really really doesn't...
I had my final prednisone tablet in late November and had the blood tests in early January, so no I was not on prednisone at the time. I still had the sore/stiffness but I was scared to be on the prednisone any longer as osteoporosis runs in my family. If I'd been part of this group at the time, I likely would have weaned myself at a slower pace. (My Mom had had PMR from the age of 58 - 61 and after weaning herself off of prednisone for 2 years, she took only 1 mg daily for an entire 3rd year until she realized she was truly better.) I have not had a blood test since January because my physician has seen no need for it. When I make my next appointment, I will ask more vociferously
PMRpro has stolen my lines - again! Plus your readings should be in the normal range if the Pred is keeping the inflammation under control - but that doesn't mean the PMR has gone!
As for life post PMR, I can give you my experience post GCA. Been off Pred for 11 months, but as I've said before I think the GCA had gone into remission probably about 6 months prior to last tablet.
Can't say exactly, but I did have a sort of 'eureka' moment, and thought "I feel different in myself". I hoped it had gone, but didn't want to get too confident and ending up crashing and burning so I continued with my reduction plan. As I said many times, and I'm sure everybody's bored with it, I did have a rough time reducing from 6mg to 3mg, so that always makes you think - am I going to alright this time. Fortunately I was.
I did have my ESR tested a couple of times afterwards, and got another one a few weeks ago because I had more pains - deep down I knew it was OA...but! Came back lower than it's been for ages - even on Pred! Was on blood pressure tablets way before GCA, so GP didn't want to alter them whilst on Pred, but since new year they have been reduced as well. Lost weight as well, which obviously helps.
It does take time for body to re-adjust after Pred, it does affect many hormones, and I'd been on it for 4&half years, v. high dose at start, coupled with 18 months previously undiagnosed, no wonder the body takes a pounding. I also lost my darling hubby during the time on Pred, which also took its toll.
As I say, 11 months on, apart from OA which is annoying, and a bit painful I must admit I feel good. Fitter (well, age considered!) than I have felt for a long time, and positive about life again. Now the Pred that I'd kept "just in case" have passed their use by date - so they're going back to the pharmacy to be disposed of!
Thank you for sharing your experience. And I am so sorry you lost your husband. That must have been so difficult.
Hello Dorset Lady
Sounds as if you have got the beast beaten. How wonderful and I wish you all the best of everything in the future. 🌺
What is AO? Been trying to work it out but my fuzzled brain won't let me.
xxxxx
Dyslexic fingers probably - she said OA before. Osteoarthritis...
Yep see the guru below - Osteoarthritis! My brain obviously hasn't fully recovered - but as my dearly beloved children would say - no change there then! Personally I blame the weather!
Oh glory be! I didn't even think of that!
Definitely the weather! 🌺❤️
DorsetLady, I'm thinking the same thing, that *maybe* PMR has loosened its grip, but steroid withdrawal has taken up the slack. This is why I'm so anxious not to follow GP's advice to stop pred with my last prescribed tablet and "see what happens". I'd really rather not know! I've got a couple of months worth of pred on hand and will go back to her and ask for a renewal, and also regular bloodwork which she also seemed to think was no longer necessary. My ESR was 16 at its lowest and has been in mid to high 20s since, plus another doctor ordered CRP, which was 15, down from somewhere in the 40s when I was diagnosed (I hadn't known that before, CRP hadn't been checked since then). I don't think I'm out of the woods yet.
Think you may be right, we know our own bodies better than anybody else, so if you think it's gone, it may well have. But I wouldn't advocate just stopping the Pred, even though you're down to a low dose, your body still is used to having it, and is more than likely to rebel if it's taken away. Surely doctor must realise that!
As for her comment "see what happens" well, didn't realise that was a medical term!
Take care, and do it your way!
So sorry to hear about your hubby. I have been on my own now for what seems like a lifetime. How I would love someone to make me a cuppa... ah just me feeling sorry for myself but realise I am not the only one coping alone and grateful I suppose to still be here.
Yes it is hard, even after 4 years. I miss the little things most I think, the "in jokes", the not having to say something because you knew what the other was thinking, but most of all I miss his humour! Although our children have inherited that and I love them dearly, it's not quite the same.
But I console myself in that I had 46 good years with him, and he loved me as much on the day he died as the day he met me! He was, and still is, my soulmate. I know not everybody can say that, so despite everything I do feel blessed - as I hope you do.
Take care.
You are blessed
Lovely reading your story, Dorset Lady, apart from the not-so-good parts. I do hope you will continue on this much happier and healthier path now. You give the rest of us hope that we, too, will "beat" this one day. Thank you!
You mention the stiff hips and PMR waddle. I have this. At the moment I'm trying to reduce from 3 to 2 1/2. Does it stay after the pred finishes?? Good luck to all on here. Jenny
Don't know - even if I had it before pred - I certainly don't have it now. But it can be due to low back problems too.
It's my hips that stiffen up. And really bad when gettiting up from sitting even for an hour. Then the waddle comes into play. Joy...
I also have it,just noticed I had it very recently.A friend commented that I was "walking worse, waddling (like duck) again" . It feels like OA in the hips but when I got an x-ray for pain in my hip/ groin (which turned out to be a broken pelvis), I was told there was nothing wrong with my hips..no OA in my hips.
I was feeling really well and finally had no pain when walking, but now, I have pain in my hips when I get up from sitting and in the morning till I warm up. I never had PMR stiffness before pred nor after but now I do identify with all the descriptions I have read on here.
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