Warning! Long post, so grab a cup of tea/coffee first. This will either make you laugh or cry. You may need a Hobnob half way through to sustain you, even if you’re on a low carb diet! 😀
Morning all! Nope, it’s already afternoon. Doesn’t time fly when you’re having fun!🤪 Let’s just say I’m not in a very good place just now and need a) to vent, and b) some advice & moral support. I’m writing this from flat on my back in bed, where alternating with the sofa, making meals and a trip to the rheumatologist yesterday, I’ve spent most of the last 6 days! Not like me at all and definitely not good for my bone health 😡 Dogs have started taking themselves for a walk!! OH has taken to talking to himself between Zoom and Office Teams meetings. More as to the reason for this incapacity & domestic disruption later.
So back to the DEXA dilemma of earlier posts. Scan in 2018, 6 months after starting Pred for PMR showed:
Bone Mass Density (BMD) lumbar spine 0.937, T-score -2.0
BMD L hip 0.707, T-score -2.4
BMD L NoF 0.764 T-score -1.8
Re-scan 5th Aug 2020 after 2.5 years of pred with Calcium, Vit D, mineral supplements, good diet, regular walking exercise is now:
BMD Lumbar spine 0.82, T-score -3
BMD L hip 0.86, T-score -2
BMD L NoF 0.646, T-score -1.8
I’m no expert on interpreting DEXA results, but to me spine looks worse, hip looks marginally better/same.
As some of you will know, I resisted going onto bisphosphonates after first scan for all the well known reasons and rheumatologist agreed to wait for second scan, which (thanks to local NHS Trust), I had to pay for myself.
The spine figure worries me as I’ve had disc problems in the past through trauma and certainly don’t want a collapse/stress fracture. Seen too many of those when I was a nurse. I had a telephone consultation with the registrar on 10th August and he understands my reluctance, but really feels I should go the bisphos route now and has suggested annual infusion of Zolendronate as an alternative to AA. I’m happier with that idea than swallowing AA every week. Interestingly, the rheumatologist (private) who reported my 2nd DEXA offered up HRT (oestrogen only) as a long term alternative. I need to have a further discussion with my docs on this. So, that is part 1 of where I am and I’d be interested in reader’s thoughts on this.
Part 2 and why I’m now flat on my back.
During my rheumatology appt in February I mentioned that I was getting a lot of rib and sternum pain, pain on breathing, coughing, sneezing stretching etc making it difficult to sit up in the morning. Pain reduced as pred kicked in then increased again in evening. Reg said “probably a bit of arthritis” and didn’t seem concerned 🤦🏻♀️ Hmmmm!! Well, I’ve put up with it until the appointment on 10th August (different Reg this time) and raised it again, saying “pain was now radiating up my neck and into right shoulder,. It’s worse if I try to throw a ball for the dog”. He decides it could be a problem in my spine and says “You need a MRI of neck & shoulders. I’ll make a referral ”. “How long to wait?” I ask. “Oh shouldn’t be too long” he says, “they’re quite quick at the moment”. Hmmmm!!!!
A week later and pain is getting worse. Not a squeak from NHS re MRI. I get chasing. I’d been classed as “non-urgent routine” apparently, so bottom of the queue! I find out scans being outsourced to local private hospital. Ring them. Earliest date - 17th September, so at that point a month away! Apparently they tell me “private scans are taking even longer”!!!
Then, 6 days ago I’m brushing my hair and I feel a tug in my upper back and since then it feels like someone has stuck a knife between my shoulder blade and spine. It only stops hurting when I’m lying down. Hence madam has taken to her bed!
But wait! Grab another cup of coffee and a Gingernut or 2, there’s light at the end of the tunnel!
Friday. I’m in tears. “I can’t take much more of this, sob, sob 😢😢” I’ve tried so hard....”. Full feeling really sorry for myself!! It’s nearing the weekend and no, I’m not ringing the GP or going anywhere near A & E. Friend comes to the rescue with 2 precious Diazepam tablets left over from a dental procedure. Break them in half and I can make them last the weekend. Ice, wheat bag, paracetamol, bed, sofa. I will survive!!
Suddenly, OH announces - wait for it ......- “Oh, when’s your scan? Oh, that’s a long time to wait, you might be covered on my work health insurance for a scan. “Whaaaaat???!!!!” 😱 Deep breath time!!!! Breathe Karen, Breathe, Smile Count to 10 😊
“Really darling? That would be helpful, I can try a few other hospitals and see if I can get a scan done quicker somewhere else. Thank you.” I say through gritted teeth 😬 and reminding myself how lucky I am to have choices.
The phone calls begin from the sofa and yes, both the other local private providers can do scan in 3 or 4 days. YES!! Result!! Ah yes, BUT, I need a consultant referral and I’ve been seeing the Registrar! 😡 Consultant’s Secretary doesn’t work Fridays 😱😱
Blot our the weekend
Now Monday (yesterday) and more phone calls. Net result - I’m covered on the insurance. Consultant can see me same day at private hospital (Oh really???!!!!), appointment booked. Seen yesterday 5pm. Consultant looked absolutely drained!! (NHS Dr post COVID) Not sure he quite clocked everything that’s been going on with me, but yes I need a scan. In fact I need 2. MRI & CT. Pred upped to 10mgs just in case it helps. CT scan booked for next week & MRI I’m still working on, but should be this week (if we can get the consultant to complete the right referral form - don’t ask!🤦🏻♀️) ! I’ll let you know!!! It’s been a journey & a test!!
Conversation about Zolendronate v HRT etc deferred to when we know what the hell is going on with my back. There’s a waiting list for infusions anyway - I didn’t ask how long!.
Meanwhile, I need a cup of coffee and if you’ve made it to the end of this post I expect you will too, or something stronger! Is that allowed??? Thanks for reading and please believe me when I say, I know there are many, many people in this country in a far worse position than I am. The inequalities of our healthcare system are probably the one thing that make me more angry than any of the other socio-economic problems of our country. When I’m fit enough, I do work to try to make things better for everyone.
Oh look, is that the time? It must be lunchtime! Darling......
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Nerak12
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I’m working on the theory that “what doesn’t kill you, makes you stronger”, as some well-intentioned police family liaison officer said to me after my husband had Just been murdered and another well intentioned nurse rang me to say that I might have a lung tumour!! If nothing else, it has all only served to further develop my well honed nurse’s sense of the ridiculous in the face of adversity!!! So I knew exactly what you meant by “liking “! my post 😀.
Now here’s a real case of the ridiculous...
Just came down from languishing on my bed, to see if OH was in need of sustenance before a board meeting (as I was), only to be asked “When throwing pineapple crowns into the compost bin, could I remember to cut them up into pieces so they rot down quicker??” 😳 I was extremely refrained in the circumstances. “ “The fact that I am even in a vertical position at this moment in time is an achievement in itself. If you wish to discuss the finer points and etiquette of composting, may I suggest you wait until the sharp pointy thing feeling has been removed from my back. Otherwise, you may find a larger one sticking in yours!! “. “Now, it’s 10 minutes until your next call, do you want some soup?!”
In answer to your question about Diazepam, I don’t know if it’s helped, but at least I’ve had 4 good nights sleep, which is a bonus in the circumstances that I’ll take any day!
Dr’s aren’t talking crush # , but it’s certainly on my list of possibles. I have had similar pain once before after I was left holding a heavy stroke patient on her side for about 15 minutes waiting for a student nurse to find some wipes!! That was about 15 years ago pre any chance of osteoporosis, so I’m hoping it’s the same again. Good old NHS it was never properly investigated and got better on its own after about 3 months and a load of acupuncture after the physios gave up on me! 🤦🏻♀️ It happened again a few years ago after I went back to work after hubby died. Hospital wouldn’t help and community physio refused to send me for imaging - they’re the gatekeepers round here, so I was stuffed.GP couldn’t/wouldn’t bypass the physios so I ran out of energy to do anything about it at the time. chiropractor eventually helped. Pretty sure it’s muscle spasm, but what’s causing it is the big question!!!!! Until I know the state of my spine I’m not going near a chiropractor or any other therapist. Watch this space, as this is the nearest I’ve been to getting an answer xx
I was wondering about muscle spasm - why I asked about the diazepam. Myofascial pain syndrome may have been stalking you like it did me - and is a common part of the PMR it is emerging. I was told that some years ago after a lecture on it in Innsbruck and Oz work shows it too:
Mine is usually low back but occasionally it is between the shoulder blades. Low back execcerbations I deal with with a flooding dose of ibuprofen (800mg) and a hot water bottle but do depend on my lovely pain specialist to keep it at bay,
PS - you did attract them didn't you! Mind-boggling incompetence! Did you report either?
Myofascial crossed my mind too & I think it got fleetingly mentioned by the consultant yesterday. For my feeling, I think there is something mechanical at the heart of all this. Muscles often spasm because they are protecting some sort of Skeletal instability. I’m very happy to be proved wrong, but something tells me that a facet joint/disc/ligament has got damaged in the past and if something puts a bit of strain on the original injury the muscle spasms to protect it. I maybe running into muscle memory issues, so the slightest thing triggers it and each time it takes longer to resolve. All conjecture at this stage of course, so hopefully one of the scans will reveal the truth.
Re: complaints, I do feel like a bit of a disaster magnet at times! The last 10 years have seen me write more letters about failure of care than I did Datix reports when I was nursing and working in governance!! Local MP is all puff- well meaning as long as he doesn’t have to stick his head above the parapet! I’ve done battle with 3 different health trusts, social services, 2 GP’s & a residential home for my now deceased parents and 2 health trusts, my GP, my employer, the Home Office and Ministry of Justice & it’s various departments and ministers, the Courts & Tribunal service and Victim Support all as a result of the fallout from my husbands death. Until 3 years ago I was doing it all on my own. I now at least have a partner who for all his little slip-ups really does have my best interest at heart and tries his best despite holding down 2 tough jobs. Like me, he’s no spring chicken and has had his own major health issues in the past. Sometimes I just run out of energy to fight! Developing PMR has meant I have to pick my battles and conserve my strength. When I finally get an answer to this current annoyance, I will be leaving my local NHS trust in no doubt about their shortcomings. If things don’t move along in the next week I will be jumping up & down like Matilda I think it was, who said she would “squeem & squeem” until something was done! 😀 Xx
Yellowbluebell may have some helpful support to offer - it is her field!
Remember that the muscle spasm could be the protection mechanism for the effect of trigger points in the muscle due to myofascial pain syndrome - not just inflammation in the fascia itself but the trigger points are knots of inflamed and hardened muscle fibres. That's what was happening to me originally. Some heroic treatment in hospital definitely started the recovery process but I reacted badly to i.v. diazepam and after that I had to go the slow way but the basis was there.
I think it was Violet Elizabeth Bott who said she would "squeem and squeem" in the Just William books. Really enjoyed reading this thread makes my online shopping seem quite tolerable.
Good morning, just noticed you said ibuprofen but thought we couldn't take that with pred?? I have a slipped vertebra on L4/L5. Back Xray said little change in 10 years which is when I did it but now agony getting out of bed so is it safe to take ibuprofen to help the pain? Or something else? Gets better on moving around. Gp says I need an MRI. I have been to chiropractor who is trying to get the arthritic disks moving but nothing yet. ☹️ I'm on no other drugs other than ADCAL and vit k.
I wouldn't take it regularly - not without some form of stomach protection which is what my rheumatologist does. I have to admit I was terrified when I was given high dose NSAID infusions for a week for the back problem - it was horrible and I have no desire to have it again but it was the veins rather than stomach that I didn't like! I can't have the better alternative because of the effect i.v. diazepam has on me. I try to keep on top of it with the pain clinic and avoiding anything that makes it worse. But a single 800mg dose with food is usually enough to break the pain cycle, sometimes I need 400mg the next day.
The other really effective prevention for me is manual release of the myofascial trigger points. Painful at the time, I sometimes feel as if the PMR is flaring afterwards but in the long term good.
Thanks so much for advice. Drs say take ibuprofen and I've taken the odd one which has helped I must say but always been too nervous to take more. I have omeprezole in the house to line stomach occasionally. Does soya plain yog act like dairy yog re lining tummy before pred? I have become intolerant of dairy.
Anything will do to soften the effect on the stomach if you are careful - that's why I say use the flooding dose, you end up needing less than fiddling about taking small doses. Ibuprofen was developed for use on prescription and the instructions are to take the flooding dose of 800mg so all the receptors are in use, then you top up afterwards. When it was allowed to be OTC the company were not amused as the regulators made it a dose of 200mg - which is useless to start.
In the middle of a proper meal is best - and use a PPI if it doesn't upset you.
"The maximum amount of ibuprofen for adults is 800 milligrams per dose or 3200 mg per day (4 maximum doses). Use only the smallest amount needed to get relief from your pain, swelling, or fever."
Ooh! Ouch! When I prolapsed L4/L5 ice was my best friend and an amazing physio & exercises. It’s a long haul though. Core muscle strengthening is key! Pilates is amazing once you’re over the worst. I finally needed a steroid injection to get rid of the last bit of sciatica. Hope you get better soon.
I laughed out loud about the pineapple crown composting. My OH and yours too! Did you see Gardeners' World last Friday? There was a film of a woman who grows houseplants from her pineapple crowns and has even managed to get some to fruit!
Seriously, I'm sorry to hear about your pain and hope you get answers soon and some relief.
No. I missed GW last week, I’ll have to watch it on iPlayer. Good spot! I’m trying to hatch an avocado stone at the moment. I know it won’t bear/bare fruit, but it’s a bit of fun. Must try the pineapple. That would be really cool to grow those! Just beginning to get ripe tomatoes at the moment & have a glut of beans & courgettes!!!
Amazing to read but painful for you,sadly. I have been going through something similar and the final shot to get things moving was that my G.P. spoke to the nurse attending me at home a couple of weeks ago when I was in absolute agony,(sounds similar to yours but our pain is always worse,) trying to persuade me to go to hospital.
During their discussion my G.P. heard me groaning away and asked to speak to me.He told me that if the damage to my spine became any worse then I was heading for paralysis. It turns out my C.T. scan of some ten days before revealed a fractured T4 and further damage to T5/6/7 no one told me.( I had been doing minor garden work and other things up to this period,)
Since had an M.R.I. and it reveals more accurately broken T4 and crushed L4 that's the pain that I had,also a DEXA scan reveals Osteoporosis which my rheumy puts down to high dose Pred'(no doubt that could change the way things are going,)
Anyway,I am now on Morphine 24/7 (Zomorph/Oromorph) with a sudden rush to get me off Pred' so some of your story resonates.
Good luck with all of it,it will at some point straighten out.
Ahhh! Poor you!! I really do despair at the persistent problem we have in this country of 1) reluctance to perform early imaging and 2) what I can only describe as crap communication between and by health professionals. One of my Grandmother’s favourite expressions was “curiosity killed the cat”. My favourite is “lack of it killed the patient”. I’m keeping my fingers crossed it’s muscle spasm from myofascial problems and not a fracture. I hope yours improves with treatment. My friend had one in the same place and went on AA and had physio and 2 years on she’s back gardening, fully mobile and full of the joys of spring. There is hope! Re: your analgesia, some patients I’ve looked after with similar fractures have done well on Fentanyl, or it might have been Temgesic patches applied over the fracture site. They seem to have a localised as well as small systemic effect - less constipating than oromorph! Good luck.
Quite. OH: Spinal fracture and sent home by orthopods on oral paracetamol that wasn't anything like adequate so was back in the next morning as an emergency. The orthopods had messed up the medication - so his INR was something silly and he probably had a PE contributing to the pain but it did mean he was sent back to medicine where they got some things right. Eventually sent home on cocodamol which was enough by then, 2 weeks later, but he'd been bunged up in hospital but no-one reacted to him telling them. A week later in utter agony ... Mind you - HE could have opened his mouth to me and I'd have kicked up a fuss.
Yep! Same old, same old! Half my work on the Frailty Unit was spent unblocking analgesia/diuretic induced constipation. First thing, after urine, we checked when patients were admitted with abdo pain or confusion/agitation. I should have had shares in Movicol!!!
I wouldn’t let them discharge my OH from hospital last year after his motorbike accident until they’d sorted out his bowels! That was after I’d had to kick-up a fuss about his broken arm not being properly elevated. I always keep my nursing background well undercover unless things start to go really wrong, but I threw the book at one particular nurse. I think she got the message after she got an ear bashing from the orthopaedic registrar as well!! Bradford Sling went everywhere with him after that!
Hi. Just had a chance to read the Rheumatology Journal link you sent me. Very interesting! My PMR started in my hamstrings and only moved to my shoulder girdle a few weeks later. I had lots of pain and stiffness in my legs and pelvic girdle for the first 18 months/2 years, but it’s rare now and the pain has been much more Concentrated in the upper body. I certainly think there’s been an element of bursitis. The junctions of the ribs with the sternum have been particularly bothersome. The consultant has requested a gadolinium enhanced MRI so I think he’s on the case!
You sound amazingly resilient! The moral seems to be 1) persevere 2) life is random 3) husbands work in mysterious ways! I do hope you get the help you need ASAP. Fingers crossed. Ps love hob knobs...🥰👍
Just had to inform mine this morning that I’m not in possession of a crystal ball!!
Laugh of the day:
So, OH gone off to a meeting and I’m languishing on my back in bed trying to summon up the energy to resume the great MRI chase battle. Door bell rings! Haul myself out of bed and peer out of window. Oh ****! I’d completely forgotten the pest control man was coming to deal with a wasp nest. This is the 2nd time this year he’s turned up mid-morning and I’ve still been in my not very glamorous fleecy dressing gown! He must think I’m such a lush 🤦🏻♀️
I was happily burning garden rubbish in my back garden when they turned up to play too! Someone had seen the smoke and reported it. I apologised and asked who I could call in advance next time I was in the bonfire mood but they said they had to repond to any report. It was only a couple of hundred yards in those days but they have moved since then. But the firies here are much more fun - usually alternate with the Kirchweih for running a village beerfest and every village has one. Not this year though ...
You can’t beat a good bonfire, but I got into trouble with one of my neighbours a couple of years ago. We have a large pampas grass in the back garden and somebody told me that rather than rip your hands and arms to shreds, the best way to deal with all the dead material it produces is to set fire to it. So I did. Unfortunately, and unbeknown to me, my neighbour had just hung her washing out to dry! 🤦🏻♀️ I apologised profusely, but there was a serious sense of humour failure!!! It’s the only bonfire I’ve had in 27 years of living here too!
My neighbours downstairs usually have frequent grill parties on the balcony (gas BBQ) - which would be fine but they have a habit of having one when I have just hung out the washing or have all the doors open and they must use industrial quantities of garlic! Never send me a serving of meat either Covid has a few positives
Well! How inconsiderate of them. They could at least send you a takeaway 😀 my same neighbour uses industrial quantities of lighter fuel to light their charcoal BBQ . Not sure we’d want a sample of the cremated remains! 🤮
Thinking about it I suppose HRT is an obvious alternative, as it’s the falling levels at menopause which are a major factor in developing osteoporosis in the first place. At 63, I guess I’d just thought I was too old to go on it. I only had HRT for a year after my hysterectomy (I was 46) because the patches I was prescribed which suited me were discontinued and GP wasn’t very helpful. I just got on with my busy life and coped. Typical woman, other things/people took priority. Big regrets now! HET is not without risks, but defo worth a serious discussion with docs.
Thank you 🙏🏻 My mother used to say she liked receiving letters from me because I wrote just like I talk, so she could hear me as she was reading the words. 😀
I had back pain and difficulty breathing very like you describe and I got a ‘ping’ when I sneezed that left me gasping for air.
Went to A&E where I was triaged in a way that made it clear they thought it might be a heart attack or chest infection, despite my protestations that this was definitely ‘mechanical’. Apparently chestX-ray was clear as was ECG and bloods so I was discharged.
Fast forward a week - during which I’d been almost entirely horizontal as that was the only comfortable position - and I’m describing the scenario to my GP who immediately sent me for another X-ray, this time side-on. Then got a call to say I had a T6 compression fracture, clear as anything. So another 5-6 weeks lying down, with morphine patches to deal with the pain.
Then came lockdown, so the ZA infusion I was supposed to have has got pushed to October. Very interested in the idea of HRT being perhaps an alternative, hadn’t heard of that.
The fracture was blamed entirely on years of steroids for RA and PMR as were the two cataracts I have recently discovered I have!🙄
Ooh! That sounds sooo painful. A T6 fracture is not so common., You got the patches, so someone knew what they were doing, which was a blessing for you. I hope you’re feeling much better now. I hope I get to have a conversation with someone with a brain before the appointment for Zolendronate infusion comes through. I’m feeling a bit wrung-out at the moment from the pain, so I’m having to fight 1 small battle at a time.
Nobody has suggested an X-Ray yet, but I think for a better understanding of what’s going on in my upper body, which I don’t think is confined to this particular acute episode, MRI & CT scans are going to cover every eventuality and give a great baseline picture for the years to come. I’ve been on the phone chasing MRI scan again this morning!!! 😡
OH did T5 or 6 in January - they wanted him to lie flat and stay in bed. but his lungs don't allow that. It was a very interesting several weeks ... Why isn't it common?
Yes! All points bulletin........If anyone sees a MRI request floating past their window, please grab it and forward ASAP!! Do you think I should offer a reward???
Dunno why T6 less common, just my experience. Could be to do with the way the load is distributed through the spine, or Where the greatest forces are exerted when the muscles attached to the shoulders/ribs are used. Something else for us to trawl the medical literature for. Keeps the grey cells active 😀 I’ve just started googling “the use of HRT as an alternative to bisphosphonates in the treatment of osteoporosis”. Should keep me occupied and out of trouble for this afternoon! Thank god for mobile phones, cos I can do the research flat on my back on the sofa.
Hi Karen I've been following your posts this morning with interest, alternating between smiling and ouching! I do hope you get some answers and relief very soon. I'd be really grateful if you could share your investigation of HRT vs bisphosphonates. I'm facing a dilemma too. Keep smiling (grimacing) and writing so entertainingly. Thanks.
Thanks Portobello for your kind remarks. (why “Portobello” may I ask??). Got to keep exercising those laughing muscles! “New slogan for Boris to use “Wear a mask”, “Stay fit”, “Keep laughing”!!
I will definitely collate my thoughts after my trawl through the literature. Unfortunately, since retiring I don’t have access to the full transcript of papers in all the medical journals so it won’t be a comprehensive review, but RCN On-line library is pretty good. Will report back.
Now hold that smile for 10! 1 &.2 & .............. & 10 and relax!😀
Aha! The origin is now clear. My nice & more senior neighbour on the other side of me is from Edinburgh. The posh bit, whichever that is, and has relations...... 🙄
My Mother’s mother was from Scotland - Paisley I believe. Unfortunately, very little family history survives. Something I promised to research when I retired, but events rather overtook me for now.
What sort of research were you involved with?
Ailments do seem to plague us as we advance in years. A bit like owning an older car, or in my case an old house! The chocolate box money pit is how I describe it! Looks lovely from the outside, but you open the lid and you never know what you’ll find inside, or how much money you’re going to have to spend to put it right!
When I went to see the rheumatologist privately on Monday, he didn’t have my NHS notes with him so not a lot of info about me. After I’d told him where I was with my PMR & the current pain issue, he asked me what else was wrong with me. You should have seen his face when I said “Nothing”! He didn’t believe me and looked at my OH for confirmation🙄 I didn’t add “Well, nothing at the moment that is”!😂😂😂😉
My research topics were many and varied. I was in mainly academic libraries all my working life. So far my HRT research suggests it would not be a first- line choice for osteoporosis treatment. I did find an interesting article which suggested that there's a difference between bone density and bone quality!
There is - many people with osteoporosis never have a broken bone and the vast majority of breaks happen in people with nominally "normal" bone density. The borderline between osteopenia and osteoporosis is said to be a figure plucked out of the air ...
😊 So interesting. I'm not quite so anxious about my osteoporosis diagnosis now. Didn't have Dexa till a year after starting Pred (my own request not GP's) and wonder whether my BMD has always been low rather than being "steroid induced"????
How low is yours? The recommendation is that the dexa should be done in the first 3 months of pred - which some think is when the majority of a change in BMD occurs.
Yes, well GPs have been useless and without all the great advice I've had from you and others here I'd be lost. Dexa result: -3.6 ☹️ ( I now have a copy of the test results). Have read Heron's post but frankly, already doing most of what she suggests. Now doing ROS exercises daily and have added collagen to diet. So do NOT want to go down AA route.
Hum - with a t-score like that I somehow doubt you will get away with just exercise. That is VERY low. Even I would consider taking something at that level.
OK- but isn't the z-score supposed to be a better measure? I'm to see Gastroenterology in September and will see what they say about an alternative to AA.
No - the z-score just compares you with others the same age - who could all have osteoporosis! The t-score compares you to 30-year olds which is about when most of us achieve our best BMD, after that it can be all downhill. But that is the number they work on.
Do you have a gastric problem then? Sorry if you have said but I can't remember.
And I see HeronNS has done the "other causes" bit which really does have to be checked out with as low a reading as that.
Yes, problems with reflux and gut pain, definitely steroid induced! Appeared after 3 months and hasn't responded to 3 different PPIs. Ranitidine was an improvement but became difficult to get. Currently, Pantoprazole is helping but hasn't resolved. I am very much aware of the deleterious effects on bones ☹️
🙂 Oh yes, enteric prescribed only after request but not sure it really helped gut, although I now sleep much better, taking that at 10pm! Thanks for your input. I now feel better clued up to face the "experts".
This is not to imply that you will be able to avoid taking a bone med, but at least one of the possible causes needs to be treated before ANY other intervention will help with bone density, whether natural protocol or medication or both. This is when the parathyroid glands are malfunctioning. After following bone health forums for a few years it comes up from time to time, more often than you might expect for a relatively rare condition, so it's definitely something which should be looked at before bone meds are prescribed.
Hi Heron. Just received a blood clinic form through the post today. Looks like they want to check/ rule out quite a few additional things above the routine bloods I have done before commencing Zolendronate, so a bit of good news.
Hmmm! There just doesn’t seem to have been enough good quality up to date research done into this field. I feel it is becoming increasingly obvious, as some commentators have already highlighted, women get a really raw deal out of pharmaceutical trials. The ever present demand to drive down costs and increase shareholder value coupled with out of date attitudes and short term thinking leads to a one size fits all approach. The bone quality v density argument is an interesting and compelling one, but does not appear to have been considered when NICE drew up its recommendations for treatment of osteoporosis. I will keep reading!
Please be proactive! Remember - YOUR BODY:YOUR CHOICE
Do your own research, ask questions that require more than a yes or no answer.
Stay in control and do not be bullied into taking nasty, harmful drugs! You have the right to receive information about treatments available and to research them before taking anything.
Remember that doctors/Consultants do receive 'perks' for prescribing some drugs!
You know, you’re absolutely spot on with all your points and I’ve preached the same sermon to many of my patients in the past. My caveat to all yours and my good words though is this: when you’re in pain and a patient a) you can feel very vulnerable, b) part of me wants to believe/expects the doctor to know more than I do and that they want the best for me & c) the brain cells don’t work so well when distracted by pain.
For the first time on Monday I actually took my OH with me to the consultation. I’ve always gone into medical appointments on my own since I was a teenager, but I actually recognised that I needed another pair of ears and mouth to ensure I got what I need. So, it’s not all sorted yet, but we’re getting there even if it feels a bit 1 step forward, 2 back!!! Thanks for your support 😀
You clearly have a wonderful sense of humour. That must be just about the only thing that's helping you through this. Do hope the wit and repartee with pmrpro continues - wonderful reading, but what a horrid situation you are in. Commiserations and to the others with their accounts of back issues too.
Hi herdysheep. Not sure everyone would agree with your assessment of my sense of humour 😂. It does get me into trouble sometimes when it takes a lunge towards sarcasm or the “dark side”! 🤦🏻♀️ Often misinterpreted as being uncaring, it’s the way we health and other emergency service professionals cope with the darker side of our jobs. I’m sure there have been many occasions recently where having a good sense of humour has been needed to cope with their stress of dealing with Covid. However bad my physical pain, it can be nothing compared to the emotional and physical stress some of our doctors, nurses and carers have had to go through in recent months. Their sense of humour and colleagues support will get them through, just like the support we get from this forum gets us through our painful journey. The other upside is that having a sense of humour keeps you fit! Remember it takes more muscles to laugh that frown!! 😂🤣 Now hold it for the count of 10! 🤣
If it continues we may have to go underground - both of us have many years of living with the health service and its staff. Most people don't get many of the things we laugh at ...
Oh gawd! Going underground!!!????You’re conjuring up visions of hoards of former NHS workers sitting together on some fantasy tube train going round and round on The Circle line recounting stories from the front-line in perpetuity. Of course we could set up an alternative “dark web” for emergency service workers only, where we could swap frontline stories instead of child porn! Much more edifying and not illegal 😀
Yep! There are killjoys everywhere. Oh well, we’ll just keep up the banter on here and hopefully bring a little ray of ☀️ into people’s lives! Viva irreverence, irony & satire! 🥂 I’ll try and keep the sarcasm in check for now 😉
Wow you certainly do describe your situation well. I do have one question - perhaps it was answered in the thread and I missed it? - have you been tested for secondary causes of osteoporosis? I would hope you had been before OP med recommended.
Hi Heron. Glad you joined in the discussion. I’ve just had a look at the link you sent and there are a couple of possible contributing factors which may not have been fully explored, so will try to engage with my Rheumatologist on those when I see him in a few weeks. Many thanks.👍🏼
I couldn’t believe it when I opened the forum for the first time in 24 months, and your post was sat ar the top of the page. I’m going through a similar and painful time with my lower back and pelvis.
My PMR and GCA is held at bay with Prednisolone 12-15mg and 500mg Mycophenolate mofetil, twice a day. I’ve also been diagnosed with Fibromyalgia and currently take 30mg of Amitriptyline at night and 10mg at breakfast. Plus 150mg of Pregabalin Milpharm at night and 150mg at breakfast.
My pain was under reasonable control and during the beginning of lockdown I was creating a new garden from scratch. There was a lot to do, I had to pace myself and my hubby helped with some of the heaviest jobs.
On June 2nd my whole life was brought to a standstill!
Sweeping up at the end of a good day gardening I stepped backwards into a bunny hole in the grass and badly sprained my right ankle. I new I had done a good job, within a couple of minutes my ankle was very swollen and black and blue over most of my foot. I could just about weight bear, however in attempting to keep upright ( Late Feb this year I fell in the greenhouse and broke my right wrist) and prevent any more broken bones I did the dance of the light fandango and managed to keep upright. This was later proved to be my undoing,
Being Shielded I was scared to visit A & E so called the Dr practice. I had a Tel consultation with the practice nurse, she diagnosed a serious sprain with a Avulsion Fracture. Told to elevate foot and apply cold compress. Within 24 hours I developed severe lower back pain and Sciatica in both buttocks and legs to the back of my knees. I was prescribed liquid morphine and Paracetamol. I was coping OK. On August 1st, I spent my first day out since 10th March, we went shopping to restock on personal care products and some new clothes. I stepped out of a shop and I almost collapsed with severe pain in my right groin. My hubby wanted to take me to A & E but I was still apprehensive about going. The pain was unbearable when I tried to walk and sitting was very uncomfortable. My GP sent me for an X-ray which was reported to be normal. No fracture, evidence of Osteopenia in lumber spine and facet bones. I was not offered any treatment or further investigation into the debilitating pain I was in. I contacted an Osteopath who agreed to examine me, she was unable to offer any treatment due to Covid-19 . She said I had the classic symptoms of a stress fracture of the pelvis, a private MRI scan was arranged for the following week. The scan showed a stress fracture to the pubic bone and 5 more Stress fractures to the Sacrum area of my spine. This she is convinced is due to steroids damaging and weakening the bone. I’ve been on Prednisolone for nearly five years, initially I was given Adcal (Calcium with vitamin D) this was withdrawn last year after I developed numerous kidney stones which required internal Lazer treatment in March 2020.
My reason for this long and winding post is to raise my concerns and probably a lot of fellow patients, on bone protection treatment when taking steroids long term.
The Osteopath recommended I discuss the available treatments suitable to my personal health care. I understand that Bisphosphonates (AA) would be the next treatment, unfortunately I have Haemorrhagic Gastritis probable cause, guess? Yes Steroids! preventing anything acidic being prescribed. I haven’t got any further discussing this with my GP.
The Osteopath recommended, Biologicals - such as Denosumab (Prolia) 60mg injection every 6 months.
Or
Teriparatide in combination with romosozumab / infliximab.
Due to my history of stomach problems along with small bowel disease and a period of 9 months of Malabsorption.
Have any fellow sufferers been offered any of the above treatments.
I should’ve mentioned that I’m a 64 year old female. Took HRT until the age of 57, which should of helped protect the density of my bones.
I’ve since had an urgent referral to Orthopaedic Clinic at my local hospital. This was a Telephone call which I felt was a complete waist of time. His answer to preventing further fractures was to sit in the sun and take vitamin D supplements. He said I shouldn’t consider Alendronic Acid or any other supplements. I couldn’t believe that a Consultant would be so dismissive of Osteoporosis Treatments.
I think I’ve been a bit long winded. Thank you for your patience. It would be wonderful if you could reply with your thoughts of Bone Protection whilst taking long term steroids.
"I had a Tel consultation with the practice nurse, she diagnosed a serious sprain with a Avulsion Fracture" - I'm appalled anyone thought that was possible without a physical examination! And preferably x-ray.
If all you had was a pelvic x-ray then I don't see how they could say you have osteopenia. And while I agree that giving bisphosphonates should be restricted, to say "sit in the sun" to get vit D shows a total lack of understanding about how we get vit D in the UK and at our age! You need a dexascan to find out HOW severe any putative loss of bone density is.
There are bisphosphonates that are administered as annual infusions - to spare the gastric effects. I imagine the NHS will insist on you trying them before the options your osteopath suggested although Prolia has been used routinely - but is now known to lead to rebound loss of bone density and spinal fractures in the period after discontinuing it. That means that either you switch to bisphosphonates after the standard 2 years or you continue on Prolia. As far as I know, teriparitide is reserved for really severe osteoporosis - I think it is very expensive. But a study found that starting patients on a bisphosphonate and then introducing Prolia reduced the rebound loss of bone density at the end.
As you are in the UK you could call the ROS helpline:
Thank you PMRpro for your reply to my enquires. With reference to having a Dexascan, I had one 16months ago and I’m not sure if it was this scan the nurse practitioner made reference to, re: Osteopenia. Today I received a letter from the Orthopaedic Consultant recommending an up to date Dexascan and a blood test to check my vitamin D levels and dependent on the results a prescription for Vitamin D.
I still feel I’m not receiving the best possible guidance with regard to my bone health and this I feel is down to the Rheumatology Department at my local hospital being grossly understaffed for the past two years. My appointed Consultant has run a very busy Department with the help of only locums, consequently he is now on sabbatical until October since the appointment of a second consultant. I’ve spoken with my Consultants secretary and I’ve sent an email as suggested with my current problems, so hopefully he will get back to me on his return to work.
The whole situation is totally unacceptable to me as I feel I have received an inadequate level of care since I developed these spontaneous fractures of my pelvis and lower back. I will take up your advice and contact the ROS helpline.
The letter from the orthopod is perfectly correct - and I doubt you would get more than that anywhere. It is certainly the approach the local fracture clinic and osteoporosis specialist has taken for my husband after a fall and spinal fracture, Unfortunately Covid got in the way but we are now starting to catch up. Luckily a private hospital in the region (northern Italy) does the dexascans for 38 euros and there is no wait - I rang Thursday and was offered appointments on Monday! The level of osteopenia is significant - it ranges from almost normal to almost osteoporosis and it is a wide range!
Once you have an up-to-date result the orthopod will look at bone health - far more orientated on it than any rheumy. Unfortunately almost all rheumatology departments are short of staff - it isn't an English problem, it is worldwide.
Thank you for your considered reply. I guess this scary world we are now living in is causing delays in diagnostic and treatment regimens!
I guess there is a trade off with a lot of medical treatments, however the longer I’m on steroids reveals yet more and more unexpected and serious side effects. Is there a medical compromise? I’ve tried reducing steroids with the help of Methotrexate, I was unable to cope with the side effects and am now on Mycophenolate Mofetil, which I’m more tolerant of. I find I’m unable to reduce the steroids below 11/12mg per day without a flair up in PMR.
My thoughts are to now consider alternative treatments for pain management and only accept increasing steroid treatment should GCA rear its head.
I had my bloods taken yesterday and await the Orthopaedic Consultants response to the results.
Thank you again for your care and interest in my health issues.
I have pain management through our local pain clinic - but the reality is that there is no successful way of dealing with PMR pain and stiffness except pred. You can hope for other pain to be managed better though and when the pain I have due to the myofascial pain syndrome that is part of my PMR I can usually manage with less oral pred.
What side effects are you experiencing? Many of the adverse effects of pred can be managed or mitigated when you know how - they are not inevitable as so many doctors seem to believe.
My word! You have been through the wars! You poor lady. All this remote this & remote that, my feeling is that although a lot of people are getting good help and advice from health professionals, many are not. When it comes to evaluating physical disabilities & pain nothing is better than face to face consultation & physical examination & appropriate imaging.
I wasn’t given any advice about taking calcium or vit D supplements either when I had my hysterectomy, or when I was first given steroids. When I asked my GP about supplements after my hysterectomy, she just told me to eat a matchbox size piece of cheese every day. Totally inadequate! I had to ask for my first DEXA scan and as I previously posted on the forum, I had to pay for my recent recommended & scheduled follow-up scan 2 years later! The advice & care women get from the NHS is a postcode lottery. I definitely agree with PMRPro that you need to have a DEXA so that at minimum you have a proper record of your bone health, but very importantly you can make an informed decision of what treatment you want moving forward. The decision to take bisphosphonates is not an easy one and we should have all the information we need to support our decision either way.
I finally had my CT scan on Thursday and I have my MRI coming up on Tuesday. I guess I’ll get to see/speak to my consultant for the results on Friday or the following Monday. At the moment I’m just trying to have a telephone consult with my GP as they don’t have all the facts about what has been happening due to letters crossing in the post. I had one booked with them for yesterday but they rang my mobile, which I’d told them not to ring, instead of my house phone (more reliable) so didn’t get through 🤦🏻♀️. I rang the surgery and told them what happened. After a bit of a discussion (an understatement!) the receptionist said she would ask the GP to ring me back. That was 4pm yesterday. I’m still waiting...... 🤷♀️ Guess it will be another round of phone calls to make on Monday!!!
I really hope you get your treatment sorted out soon. Having chronic illnesses is enough to cope with. Having to battle to get the correct treatment for injuries and other problems that arise as well is such hard work and really frustrating. Stay strong and keep asking questions and pushing.
As the radiographer who did my CT last week said to me “It’s your body, it’s your choice” and he was just putting a cannula in my arm!! 😀
Where do they get the idea that a matchbox sized bit of cheese is enough? That is 1oz - and it depends very much on the sort of cheese. Parmesan cheese has the most, with 331 mg — or 33% of the RDI — per ounce (28 grams) (5). Softer cheeses tend to have less — one ounce of brie only delivers 52 mg, or 5% of the RDI. I eat a lot of Brie but for other dietary advantages - it doesn't help the calcium that much. Note to self - get that brick of parmesan out more!
Thank you for your reply, are post menopausal women more prone to bone weakening than men who take steroids even though with the protection of HRT this should put us all on an equal footing?
I’m waiting for my blood results and hopefully soon a DEXASCAN so I can get some help with protecting my weakened bones.
I guess you have had all your scans by now and like me you are awaiting results. I do hope you get a fair diagnosis and that a suitable treatment can be found to help you.
Over the past few weeks Ive also had a swollen left foot and lower leg. I’ve reported this to my diabetic nurse whose advice was to watch and wait to see if the swelling went down on its own accord.
Time has passed and still the swelling has remained the same. It’s what I would call oedema but in one leg not both legs. I telephoned the GP Monday morning and I was given a face to face appointment that day. The bloods they took for DvT and Heart problems came back negative, which I was expecting, as they normally present with swelling in both legs. Further bloods were taken and I’m waiting the results. I’m not sure if this is anything to do with steroids but it seemed to coincide with my pelvic fracture.
Life sure feels like a roll a coaster with PMR/GCA and Fibromyalgia. I normally manage to keep a positive outlook but these latest developments have left me feeling very low.
Hi. Sorry for delay in replying to your questions. Some men like some women develop osteoporosis - I don’t know the exact difference in its prevalence between male & female. Im sure someone on this forum does. Post menopausal women are more likely to develop osteoporosis than pre- or peri menopausal ones. More women develop PMR than men and the majority of women with PMR are post menopausal. Therefore there are more women taking prednisolone than men and therefore at risk of developing steroid induced osteoporosis. Bone density loss is slower in women who have received HRT for a sustained period. Time of onset of menopause is relevant as the earlier it occurs, the longer the body will have reduced oestrogen levels unless helped by HRT. The more active you are with weight bearing and medium to high impact activity the slower your bone density reduces . Lightweight people more at risk of osteoporosis than heavier ones. Diet, alcohol and smoking all affect bone health. So many variables!
I’m sorry you have a swollen leg. PMRPro correct re DVT doesn’t normally affect both legs unless occurs in pelvis or abdomen. Have you got any localised pain or redness in your leg? Swelling in one leg can be caused by poor lymphatic drainage or just poor veins - incompetent valves. Usually comes on over a prolonged period and not something you suddenly notice. I hope your doctors find the cause soon and you get some relief. Keep the leg elevated (above the level of your heart if you can) when you’re not moving around. I’m sure you’ve been told that already though.
Had my last scan yesterday. No ill effects from the gadolinium yet 🤞🏻. Damm long scan though. About an hour!!! I had a numb bum at the end 😮 The music was good though 😀 Just waiting for results & appointment with Consultant. GP telecon booked for Friday am. Hopefully they’ll ring the correct number this time!!! 🤦🏻♀️
I suspect the figures are very skewed - they assume women will develop osteoporosis as they age and are post-menopausal but few people think of men because they aren't post menopausal. You only know the truth if large nos of dexascans are done!
I agree, I just thought that men should be at no greater risk of developing Osteoporosis whilst taking Prednisolone than post menopausal women who have received HRT for the recommended 5 years from the onset of The menopause.
Does that mean men are not offered a Dexascan when they are prescribed Steroids!
There obviously seems that a study into the prevalence of Osteoporosis in men and post menopausal women whom have taken HRT for the prescribed period of 5years.
By no means all women get HRT post-menopausally - and I have never heard that it is recommended for 5 years. Relatively few patients are actually offered the recommended dexascan when diagnosed with PMR, never mind men as well!
Thank you for your continued support. Apart from the swelling in my foot and lower leg, the skin is tight and uncomfortable, no pain or redness, blood tests are negative for DVT so I’m thinking It may possibly be lymphedema. Waiting for results of full blood count including Vitamin D levels. Not sure how this new problem is or isn’t connected to PMR/GCA. It just seems to one more problem after another. I’m certainly finding it harder and harder to cope with the pain and the mental anguish I feel.
I do hope your scan results are good or if not, that the diagnosis means you will receive the treatment you need to reduce the pain and discomfort you are in.
Any other time I'd say go and find someone who does manual lymph drainage - it worked a minor miracle on my swollen ankles in a single session. It was aimed at the worse leg but within 2 days both had improved out of sight. I don't know if it is an option where you are at present? I believe it is possibleto do something similar yourself - google it.
Thank you so much for the info on lymph drainage massage. I will check with my Osteopath as she has other therapist at her health centre who may be able to offer lymph massage if not she may know someone local to me that can help. We live in a very rural area of UK with a limited number of therapists and general health services.
It’s good to know that the manual massage helped relieve the swelling in you legs. Did you have to have just one session or multiple ones before any improvement?
I just had one session - and the result was so good I didn't bother having another. I had gone to discuss an exercise programme that was offered through the local health service but they had nothing that fitted my needs, it stopped a few months later anyway. We got talking and he suggested the manual lymph drainage and did a session there and then. He concentrated on the worse leg but the effects worked for both! He said to see how I got on and to come back if I felt I needed another.
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Also tends to be evenings when they've finished work ...
dexa scan
Down to 7mg Pred
Dexa scan results / Osteopenia
Dexa scan
