I had a very productive appointment yesterday with my lovely rheumy. We discussed my next taper to 4.5 and I mentioned my bad back. He examined me and said he think it stems from me having one leg shorter than the other. I’ve never been told that before. He’s ordered an mri scan on my hips and back, a dexa scan cos he was horrified when I told him I hadn’t taken AA for years and he’s making an appointment for me to get a heel lift. He never makes me feel as I’m being rushed and really listens. Onwards and upwards !
positive appointment : I had a very productive... - PMRGCAuk
positive appointment
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Suet3942
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How amazing you have such a good rheumy. Hope all goes well for you and good luck with your 4.5 taper.....currently I'm on 5.5, only reducing by 0.5mg per month and so far so good for me. Although I hate to get complacent because as we lower particularly on 4mg we can run into trouble.
Suet3942• in reply to
Yes I’m dreading it Staplehurst. I always feel I’ll for a week or so when I reduce so fingers crossed. It will be a very slow taper. I print off Mrs Nails spreadsheet and follow that. Hope you are ok x
• in reply toSuet3942
A lot on my plate at the moment with my husband. I expect you've seen my posts. I tried DL's regime, sadly it didn't work for me. I had to keep going up. So decided to just taper very very slowly monthly at 0.5mg as I've said. How long have you been on steriods ?
Anne
really? there are 3 different versions..
• in reply toDorsetLady
Oh yes, wondering what one Suet is using. Not sure what the one I used was called. So many days on a certain number then introducing the next number for so many days. You sent me the link at the time. Worked well until I go to 6mg then had to increase
That doesn’t necessarily mean it was the fault of the taper -you’d probably got to the level of Pred required for that stage of your illness. If that’s the case, then no reduction is going to work -whatever system you use.
But no matter, if what you are doing at the moment is working, then that’s all that counts.
Thank you DL xx
• in reply toDorsetLady
Yes, you're right. That's why I said some weeks ago about being concerned when reaching 6mg as that's when it went haywire before. But as I've said, so far so good and may it continue. Everyone is different with their tapers, what works for some doesn't others, so trial and error.
Suet3942• in reply to
Hi Anne. I’ve been on pred for 10 long years. Yes I’ve been reading your posts and my heart goes out to you. What a difficult time for you and your husband.
It’s hard isn’t it to look after someone when we are not in good health ourselves. It’s the gardening I’m finding difficult. Ken always kept it looking beautiful but I’m not very green fingered. I have killed a couple of shrubs that we’d had ages and my back complains all the time. I hope your husband has his back op asap. Kens waiting to have a shunt fitted so hopefully he will feel more steady on his feet and his memory should be much improved. Good job we don’t have a crystal ball. X
• in reply toSuet3942
Hiya, not hubbys back. He has been waiting ages for two hips replacements. Then he had a fall and fractured his femur.....in hopsital 10 days. He seems to have recovered well from surgery, however, the pain is still intense from both of his hips. The femur op has put him back at least 6 months before they will entertain first hip surgery. He has typ 1 diabetes, with CKD (chronic kidney disease) and now has come out in an awful itchy rash/spots. Been suggested could he have caught scabies while in hospital. That would never surprise me. So I got straight on to the doc again and asked for a call back, which he's done. He doesn't seem to think it's scabies as I'd have caught it too. Yesterday when I took him to doc to show him the rash he's put him on steriods....so hubby has now joined our steriod club for 5 days.....just hope they don't affect his already damaged kidneys, but will raise his blood sugar, so will have to watch that. Sorry you're having bad health issues, it does get to us when we want to do jobs, gardening etc but our bodies just won't tolerate. It amazes me where I muster up the energy with looking after husband for well over a year now. I just don't want a flare and have to increase, as we all want to get off steriods asap. You've been on them a very long time. Me Dec 2019. Unfortunately, I did go on to get GCA in Mar 2020, so had to go from 15mg up to 40mg where I've been tapering ever since X
Suet3942• in reply to
Hi Anne. Yes I knew it was his hips. I don’t know why I typed back. He has so much to contend with. You must both be worn to a frazzle. Wonder what the rash is?
• in reply toSuet3942
I know and that's what's bothering me at the moment. Eliminated different tablets, not changed washing powder, so no idea what it is....just hope not scabies caught at the hospital. To top off all that's going on with him he also has macular degeneration too. However, for the past almost a year it's been staple so hasn't needed the eye injections...had about four of those and not pleasant....poor man is in such a mess right now. But I've aquired good nursing skills so he's being looked after very well even if I say so myself. Wondering if I'd have the same care from him, I would hope so.
Suet3942• in reply to
Poor man. What a lot of things going on. I’m sure you do look after him well. X
• in reply toSuet3942
I cerainly do, he's a very lucky man as I know friends that wouldn't give up there lives to look after their other half.....but that's what we sign up for, don't we ?? Not saying that I don't get irritable, cause I do, he knows it then haha
Suet3942• in reply to
Totally agree. They’d are lucky.
• in reply toSuet3942
I feel quite lightheaded on each reduction, but only lasts a few days...and really not sure it's the steroids causing it as I've not had a proper nights sleep for a very long time and that can cause a fuzzy head too.
Well Done Sue - great to get a good appointment, are you still on Methotrexate? Glad he’s ordered an MRI etc
Let us know how it goes.
Cheers
Angela x
Hi Angela. Yes I’m still on MX but only 10mg If it wasn’t for my back pain I would be feeling really good. I do have osteoporosis and spondylitis so the lower the pred goes the more I feel it. I have to do more indoors and the garden now as Ken is not so good. He is waiting to have a shunt fitted to drain off cerebral fluid so hoping he will feel a bit better after the op. He had a lumbar drain a few weeks ago and felt better after a few days so fingers crossed. Hope you are feeling ok.
• in reply toSuet3942
Reading this post you seem t be going through the same as myself re your husband
I could have written your post myself....lovely rhemy......one leg shorter than the other, but it was discovered in my twenties, I have a small build up on one shoe which is unnoticeable...first doctor wanted a huge build up..which made me worse.....when I look in the mirror (which isn't often!)...my shoulders are very uneven...scoliosis....and osteo arthritis in lower spine, osteoporosis also....I'm collecting the osteo's!.....haven"t taken prevention for the latter, I waiting to hear about having Zelondronic acid....which I'm not looking forward to.....but needs must....Keep us posted....
Hi Longtimer yes I’ve always moansd about my right shoulder being lower than the left as my bra strap always slips down. Didn’t equate it with my leg being shorter
I used to have a shoulder difference that was put down to a squint peliv though I don't THINK is is a difference in leg length. I do have a scoliosis which varies with the state of my back muscles. I'm noticing the left bra strap is falling off recently. I wonder ...
Yes our skeletons change the older we get don’t they
Yes, at last Dexa few weeks ago 1 in shorter....now 5ft 1 was always 5ft 3 in, l ost 1 in 3 years ago,used to say it was the only thing I had in common with the queen!...but looks like she's not so tall either....
Stuck in the chair these last few days, not good for my back..feel awful after Shingrix vacc!
Aww hope you feel better soon. Yes I’m 4 ft 11 now
Hi Sue, sorry to but in but intrigued by the left bra strap problem. I’ve had that for a while now but never associated it with being health related…. I double tighten that side. and it still slips down. I actually hold that shoulder in a way to stop the strap falling down. Now can’t sleep on that shoulder it hurts so much. Waiting fir a scan and x-ray.Pleased you had a good consultation with your Rheumie. I’m very lucky to have another good one since we moved to Yorkshire, 🌺
Terri
I had a painful hip fir some time a few years ago and one foot felt odd- like a ‘pad’ under the ball of my foot. Saw a skeletol podiatrist who is brilliant. She put me on a running machine ( walking!) with a video camera. Told me I had one leg shorter than the other too. Quite common I believe. She made up an insole with a pad which lifted the foot slightly. My hip pain went quickly and it stopped me ‘waddling’ which you see in so many older people.
I feel guilty if I skip a week of AA (actually Risedronate in my case bc AA disagreed with me) like I did last week, but only the second time in two and a half years. I see it as an insurance policy against bone loss and an incentive to get off steroids when my body allows.
It was the side effects mentioned that put me off Exflex. Crumbling jaw etc.
Crumbling jaw - really? Why does it target the jaw, or do you mean crumbling bones everywhere in your body? Spine - yikes!My dentist said she was happy with, AA but more concerned about IV.
One of the very rare adverse effects of bisphosphonates is jaw necrosis:
"Osteonecrosis of the jaw is a poorly understood condition that has recently been associated with the use of potent bisphosphonate treatment. The prevalence appears to be approximately 1-10% in patients with malignancy treated with very high doses of intravenous bisphosphonates."
It is the high doses that is the risk - and they are usually i.v. which accounts for the dentist's comment.
Just before I was diagnosed I went to a physio in desperation as I was in so much pain. He said that my right leg was shorter than the left and then pulled it hard to try and make both legs the same length!! Can you believe it?! No wonder I was diagnosed with PMR! All the best. Lovely that you have a great rheumy x
Have you had it resolved though?
Sadly no, but it doesn't cause me too many problems, just the occasional ache in the hip area when I'm lying on that side. My OH also has one leg shorter than the other. He had a knee replacement several years ago. Last year he had to see a podiatrist and she commented upon his knee replacement and wondered why the surgeon didn't insert a slightly longer piece of metal in order to make both legs the same length.
Yes a friend of mine who had the same problem ended up with both legs equal when she had a hip replacement
Even evening it up has its downsides if it happens too quickly - your body is able to adjust to small amounts but not big ones.
Suet3942
Very pleased to hear your rheumatologist is still there! As you said. I have his details ready in case I get desperate and need to chat with GP about getting one.
Glad you had a good appointment.
I'm impressed that he examined you! Mine never has.
This consultant is the first ever to do it and I’ve seen quite a few
That’s ace. When I mention my back to my rheumy he says I’m not an orthopaedic doctor. I mentioned HRT and he said I’m not an endocrinologist. He says my back is nothing to do with PMR. To be honest I ignore him mostly. 😂
Sounds like a reasonable response!!!! He should know about both aspects when they relate to his rheumatology patients, And how he can say back pain is not related to PMR is beyond me! My rheumy is far better at sorting the back pain out than the last orthopod I saw with it (in the ED) who gave me i.v. tramadol which really didn't do a lot. I had a rheumy appt a few hours later - I was able to walk out of his clinic! To be fair, the first orthpod I saw about the back probkem - also in the ER - was brilliant but the wonderful treatment he used (a mix of high dose NSAID, pred and i.v. diazepam as a muscle relaxant) is a no-no because I react badly to the i.v. diazepam. It also had me on my feet in hours.
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