New diagnosis osteoporosis: Morning Everyone, I've just... - NRAS

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New diagnosis osteoporosis

sunnyweek profile image
49 Replies

Morning Everyone, I've just been notified I have osteoporosis after I mentioned to my GP Practice that I'd not had a scan for many years. I've been told about zoledronic acid which they want to give me. I thought my diet was quite good but she said its likely the long term RA, menopause, steroids over the years, which I don't take now, and mobility. I really want to help myself, diet and exercise so will try and find someone local to guide me in the best exercises, weight bearing, etc. My hip is bad so I'm even worried how far to extend it. Any advice gratefully received, thank you.🙂

49 Replies
Evie3 profile image
Evie3

its the gift that keeps on giving 😉. I have had Adcal for many years. My stomach doesnt like Alendronic Acid or the other similar med. I am osteopenic now….as your Dr said due to long term steroids etc. They can give you meds to rebuild the bone via an infusion too. They havent been forthcoming for me…mayb my age🤷‍♀️. Take care

sunnyweek profile image
sunnyweek in reply to Evie3

Can you have the infusion? Zoledronic acid will be an infusion. I've also had Adcal for many years, I believe osteoporosis isn't just about calcium and D3 though. It shouldn't be about your age though, maybe they don't treat if you are osteopenic. A lot to learn, thank you for replying.

Evie3 profile image
Evie3 in reply to sunnyweek

i was awaiting a decision from Consultant…..via helpline as he ‘was’ going to look at my last dexascan. Then i asked my Dr who also was going to look at results. After much chasing she came back and said I was ok on Adcal. Never get to see Consultant now and RA nurse cant make any decisions. I really should be on something more but lost the will now.

OldTed60 profile image
OldTed60 in reply to Evie3

I’m not on anything more for recently diagnosed osteopenia stage 2? My rheumatologist just wrote to me saying daily D3 I’m on already is fine for now and I’ll get another Dexa in 5 years.

I used to get AdCalD3 but asked to switch after many years as wanted more D3 and was worried about calcification plaque on my arteries as family history of atherosclerosis. I have also been on steroids on off for years and I think I should have had HRT as I’m on highest dose of PPI for severe GI of my MCTD, inc scleroderma. If you’re on a PPI such as omeprazole then it’s worth speaking to GP or rheumatologist about whether this is really needed or not as there are safer options for mild reflux.

Evie3 profile image
Evie3 in reply to OldTed60

at least I have Dexascans every 3 years. I dont understand some of above but you are certainly going thro it. I have been on a stomach protector for years and years. I can only take 1 Adcal tablet in the morning as the evening one gives me stomach probs. I just think with all thats going on with the NHS oldies with multiple probs are way down their priority list.😭

OldTed60 profile image
OldTed60 in reply to Evie3

Yes I agree about age being a big factor. My 3 yearly breast screening was last week - a year late the Secretary confirmed - due to pandemic.

I get very good rheumatology treatment and now have good GP practice. However I had to badger hard for a first Dexa and my rheumy put in request 18 months before I actually got it. I’m 591/2 post menopause by a decade so I guess some osteopenia is to be expected.

But with hindsight I’m cross with myself and old GPs that I wasn’t allowed HRT despite asking twelve years ago - due I was told to all the negative publicity around increases breast cancer risk. I have no family history of breast cancer but lots of history relating vascular diseases, gut disease, malabsorption and Sjögren’s.

I even came late to topical HRT and have only just discovered estriol cream rather than pessaries. I don’t know if it’s this or the immunoglobulins treatment I’m now getting as well as my high dose of immunesuppression - but my complexion and energy levels have improved a lot lately.

Unfortunately I got the first infusions of immunoglobulins at same time as a GP sent me Estriol cream to use daily for 2 weeks then twice a week. So I started it same week and ended up having a week on high dose steroids after due to a nasty allergic skin reaction to immunoglobulins! I think perhaps they tend to have blanket policies to tests and treatments rather than taking a patient’s family history and pre- existing conditions and comorbities into account.

Grateful for the chance to read and ask about this here though as I got the letter about stage 2 osteopenia 4 months ago but just shrugged and forgot all about it! Seeing my new gastro next week so will definitely raise it with her now re my very restrictive liquid diet.

Evie3 profile image
Evie3 in reply to OldTed60

certainly got a lot going on😢.

I was on HRT from say 50 to 64. It certainly showed that my bone density was improved and no nasty side effects. I told the Dr I would sign something to say I was aware of downsides of staying on it, but wasnt allowed to continue, now osteopenic. 😤.

Take care

OldTed60 profile image
OldTed60 in reply to Evie3

This is so bad that the HRT helped but was stopped and now you’re osteopenic as I am too. I have tried asking GP over phone as been having lots of gynae issues and my pelvic floor is a neurogenic (bowel and bladder) and apparent structural mess with prolapses to boot! They just sent me the estriol cream 🤷‍♀️

Evie3 profile image
Evie3 in reply to OldTed60

unfortunately they have guidelines to follow…..and cant deviate to medicate each person for their needs.

Like you I have so much going on. 😭

sunnyweek profile image
sunnyweek in reply to OldTed60

Difficult isn't it to know what's best when having two treatments, the immunoglobulins and the cream. Glad it sorted though.

Also glad you've had a reminder to talk to your new gastro about your osteopenia. Wishing you all the best.

OldTed60 profile image
OldTed60 in reply to sunnyweek

thanks so much. Sorry I should have said I was replying to both of you so glad you picked up 😊

Jeppy profile image
Jeppy in reply to OldTed60

hi is estriol cream on prescription only please ?

I feel like a stuck record but 'Balance' sheet and the new NICE guidelines explain HRT for older ladies Louise Newson marvellous

OldTed60 profile image
OldTed60 in reply to Jeppy

I have no idea but I’m guessing that, as it’s topical HRT, it is prescription only

Lolabridge profile image
Lolabridge

Bad luck sunnyweek - join the club!

I have osteoporosis which was confirmed by a DEXA scan. I had also had to take steroids for some time previously and avoided HRT due to family history of breast cancer. I was never keen on drinking milk, even as a young child, so wonder whether that was also a factor.

So I’ve been taking alendronic acid once a week and calceos chews (Calcium and vit D) daily since diagnosis. I’ve also increased my dairy intake by having kefir yoghurt most mornings for breakfast. I have not noticed any side effects from the alendronic acid tablets apart from getting grumpy having to wait 30 minutes before I can have my early morning cuppa on tablet day!

sunnyweek profile image
sunnyweek in reply to Lolabridge

Thanks for the welcome! Hopefully they'll do you another scan in time to see how the medication has helped.

I took alendronic acid and then risedronate for 5 years each, that was the maximum then. Then put on Adcal which I've been on for about 8 years. Yes the half hour wait for a cuppa after Alendronate is a bit annoying!

This zoledronate acid is an infusion, and they have to check your teeth first as a rare side effect can affect the jaw. The outcome of that is I've got to have a tooth removed first.

Did you request the dexa scan? I've not been offered one for many years and in the end I asked.

Have you been advised about exercise?

I'd be interested to know what make your Kefir is, I've been wondering about trying it.

Sorry for all the questions.

Lolabridge profile image
Lolabridge

The consultant arranged my DEXA scan after I had a lot of steroids in first two years while we find the RA drug to suit me. I’ve asked about another but was told every 5 years is usual so need to wait a bit for my next.

I like Tim’s Dairy Kefir Yoghurt as it’s not as sour tasting as others and I buy it from Waitrose. I add a low carb granola and berries for a lovely brekkie.

Exercise is a problem for me - on Rituximab, which is strongly immune seppressing, I can’t use gyms or public pools. I can’t walk far either as I have problem feet! Weight bearing exercise is recommended so regular walking is good - I just can’t do it. I’m hoping to get back to Aqua Fit classes one day but it’s just not safe at the moment.

Why don’t you look on the NRAS and Versus Arthritis websites to see if they offer specific advice.

sunnyweek profile image
sunnyweek in reply to Lolabridge

Thank you Lolabridge, I'll try that yogurt, I find some of them a bit sour. Yes exercise is something I want to up. I'll see if they can recommend any chair based ones as well as standing. The Royal Osteoporosis Society has a helpline similar to NRAS so I'm going to give them a ring. Luckily my next Retux is December so hope this bone infusion is done and dusted by then. With all the jabs and dentistry dates its a juggling act.

Jeppy profile image
Jeppy in reply to Lolabridge

have you any thoughts on the revitive medica machine well,advertised recently EMS therapy. My friend bought similar but cheaper for various veins too. Her legs feel stronger she says

Lolabridge profile image
Lolabridge in reply to Jeppy

I’ve not considered that but will investigate thanks.

Kags1068 profile image
Kags1068

Hi Sunnyweek

Well, as Lolabridge has already said, welcome to yet another club you'd never want to join!🙄

I'm sorry you've not got this to deal with on top of everything else. Never a dull moment, is there?

I always thought (naively it seems), that I would be ok as my diet was full of dairy products. Like you though, i've had the long-term RA, recent menopause, lack of mobility and 30 years and counting of steroids all working against us. Grrr! Seriously though, it can be hard to decide what's best treatment wise. I've been on Adcal/Calcichew for at least 15 years with no ill effects. I took Actonell/risedronate for about 3 years but just couldn't tolerate the tummy issues. I was given that after my first or second fracture in about 2009. After stopping Risedronate, the rheumatologist felt i needed a stronger treatment. At that point (2012), i started Prolia/Denosumab injections which were every 6 months. I was only 43 then and the rheumy hadto argue my case, but it was agreed as i was already having fractures. This injection is a similar type of treatment to the infusion - hadto have the dental check and get any dental work out of the way first. At first i was fine, but the more injections i had, the more side effects i had each time. By about 2016/17 i asked to stop the treatment as i'd had enough of the side effects. The doc agreed with the proviso of switching to Zolendronic acid infusions if any future issues. I agreed and kept happily putting off starting the infusion. I'd had a few more ankle fractures, but this was finally solved by having my ankle fused in 2018. Unfortunately, in Jan 21 i had a relatively low impact fall in the home and broke my femur in between a hip and knee replacement. It was a much worse break than the fall would usually cause, because of the bone weakness. It also went into non-union and wouldn't heal after the first op - again bone weakness. Using a gutter frame has caused a spine fracture and 3 rib fractures in the last year. At the beginning of this year, i hadto have a big op on the femur again to try and fix it. It is now slowly healing and I'm improving and learning to walk again. Following the fractures last year, it was decided i hadto have ghe Zolendronic acid infusion, and i didn't argue although i was worried about the side effect risk. I had the first one last October and amazingly, no real side effects at all. I was so relieved.

I apologise for all the detail, but I'm just trying to illustrate what can happen sometimes. Obviously now i wish I'd taken the plunge and had the infusion sooner, as it coukd have meant a different outcome. I know lots of people (including me) have understandably got fed-up with side effects of some of these treatments and/or felt very wary of starting them. I can only say that with the benefit of hindsight (what a wonderful thing), i'd have done things differently. I hope that doesn't sound like one long tale of "woe is me" - that's certainly not my intention. 😉 Any questions, please feel free to ask. Best wishes X

sunnyweek profile image
sunnyweek in reply to Kags1068

Thanks Kags appreciate your reply. I know you also have a long history. Did they say how often you should have the Zolendronate infusion, I was told here in Notts it is 18 months between infusions. I have heard of Prolia and denosumab. Not sure if zolendronic is newer or is for a different age group. Have you had a dexa scan to get your scores.

I think they can do a slower infusion that can lessen side effects, ie it is a 15 minute infusion but they can make it up to an hour. I'm hoping for a slow one for the first time. Flu like symptoms for 2/3 days were the most likely side effects she said.

I hope you are doing well now after this long haul and the zolendronate makes a difference x

Kags1068 profile image
Kags1068 in reply to sunnyweek

Hi again

Sorry it's a late reply, eyes being a bit of a nuisance!🙄

Apologies also if I inadvertently made you sleepy re-reading some of my history in my previous answer!! 🥱😄

I remember that you also have long-standing RA too, as i think we've possibly had some similar experiences - particularly as i recall you've had your share of eye complications too? Hope things are as stable as possible.

As far as the infusions go, i have mine in Coventry, and i was told last October that it's once a year for three years. I suppose I'll soon find out if that's changed! I get the impression Prolia (Denosumab) has been around a little longer as Zolendronic acid wasn't mentioned to me back then. Obviously could be wrong! They are both biphosphonates though as I understand, and do work similarly. As one of your other replies says, with the Prolia you do have to be careful of stopping it abruptly with the risk of a rebound fracture (usually femur). I was not aware of this when I stopped, and it wasn't explicitly mentioned, but now I realise my rheumatologist was asking me questions that were monitoring it. Obviously, I fractured my femur anyway, but it wasn't a rebound thing, it was a fall, but made worse by poor bone quality.

As for my T scores - I have absolutely no idea! It's complicated when you have hip replacements, they can no longer scan your hips. They can scan your forearm once, but after that it has to be the spine. It was explained to me at my most recent scan (last September) that it would be a waste of time, as it would give a false result of things being ok. This is because if you have damage to your spine, (I don't really fully understand this), it gives the scan the impression that there's new bone (or something), so no matter what, you get a result saying things are ok. This is exactly what happened. CT/MRI scans have shown widespread osteopenia and i've had 12 Osteoporosis type fractures plus the femur, so things aren't OK. As far as I know it's not progressed to Osteoporosis despite all this. I presume the fractures are why I got access to the "next level" treatments-for want of a better description? We also discussed the possibility of teriparatide which is a slightly different kind of treatment. It's the only kind that actually creates new bone growth and initially I was really keen to try this in case it could help my femur start to heal again. The downside is, it's harder to access as it's more expensive, and you have to have an injection every day for 2 years. Not everyone complies with that, apparently. Once it was confirmed this wouldn't help my leg, I agreed to the Zolendronic acid. As you say, the infusion is generally about 15-20 minutes. I've got rubbish veins, so I think they did it slower anyway as it took a good 45 minutes. Perhaps that helped me avoid any side effects? Definitely worth trying. After the first infusion you have to sit there for about 30 minutes afterwards to be monitored. I was told that wouldn't be necessary for the others if I was ok.

I think I've read from previous posts that you are on Rituximab and have been for some time? Can I be cheeky and ask if you've got on ok with it? I'm due to switch to it, but just waiting on a neuro consult first to see if I need more neck surgery (hopefully not). My main concerns (apart from the usual hoping you don't get side effects) are vein access and how long the infusion (or infusions?) take; and if you have a history of fairly regular surgery, how does that fit in? I'm guessing they also decided RTX was suitable for your eye issues too, as I know they have to be a bit more careful which biologics they give us when we've had eye involvement.

Apogies for the digression, and please ignore that bit if you prefer not to discuss it. No problem. Best wishes xx😊

Pippy25 profile image
Pippy25

I just wanted to send some of my supportive wishes out to you sunnyweek and the biggest but gentlest hug ever. I do take prescribed Vit D but you have me thinking as I don't recall I have ever had my bones scanned for osteoporosis, I hope this doesn't sound silly but do they do these scans as part of having RD or is it due to other factors?

I guess there is a lot to learn and take on board, so take it one day at a time. 💐

Lovely to see lots of people sharing their experiences and support. Take care xxx

sunnyweek profile image
sunnyweek in reply to Pippy25

Hi Pippy lovely to hear from you. Thank you for replying and for the big gentle hug. I do hope you are doing ok.

I first had a dexa scan when they put me on methotrexate over 20 years ago, I think I was probably on steroids too as it was raging and difficult to get controlled. That was when it went in my eye too. I've never had a scan since but they did put me on alendronic acid for 5 years (it was the maximum time then, its 7 years now), then risedronate (similar time), then just AdcalD3.

I had this scan this year because I mentioned to my GP during the annual RA review we get now, that I'd not had a scan for over 20 years, so my risk was calculated, and agreed I should have a scan.

It might be a good idea for you to enquire especially due to mobility, RA, steroids and maybe menopause. In my experience they aren't automatic, I had to ask. I think some people on this Site do get them more regularly. I've noted from research it can be that someone breaks a bone before osteoporosis is diagnosed.

You could always try the Royal Osteoporosis Society helpline as well 0808 800 0035.

Yes lovely to get support and a lot to learn; take care Pippy xxx

Pippy25 profile image
Pippy25 in reply to sunnyweek

Thanks sunnyweek for the information there, it's helpful to know these things. Love Pip xx

Fruitandnutcase profile image
Fruitandnutcase

Take a look on the Bone Health site on Healthunlocked - it has links to the ROS. Zolendronic Acid is a bisphosphonate but if anyone offers you Prolia then be very careful because if you miss or are late with an injection or have to stop taking it for any reason then you can end up with nasty rebound fractures unless you take a relay drug like a bisphosphonate asap.

sunnyweek profile image
sunnyweek in reply to Fruitandnutcase

Thank you for that useful information, I'll have a look on the bone health site too.

CallMeSunny profile image
CallMeSunny

Versus Arthritis have several incredibly good YouTube videos for RA patients, both seated and standing. Good luck to you.

sunnyweek profile image
sunnyweek in reply to CallMeSunny

Thank you for this, I'll have a look.

GinnyE profile image
GinnyE

I fell and broke three bones five years ago. They diagnosed osteoporosis. Ive just finished five years of Alendronic acid and had another dexa scan. Spine 8% and hip 4% improved. Now moved back into osteopenia category. So it worked!! Can now have two or three years off it.

Otto11 profile image
Otto11 in reply to GinnyE

Thats great news for you. I didn’t know it could do that that’s very interesting. I have had Osteopenia for many years & take Calceos tablets. The last few scans it has got worse & due another Dexa shortly. Take care x

sunnyweek profile image
sunnyweek in reply to GinnyE

That's good news, glad it worked. Hopefully it worked whilst I was on it, they didn't do repeat dexa, and I don't think the AdcalD3 after AA was enough long term. I hope you remain stable.

stillsdisease profile image
stillsdisease

hello, my diagnosis is Stills Disease which for me manifests as RD. I was prescribed steroids for 5 years from aged 17 with no preventive prescribing for osteoporosis as apparently they didn’t know then.... years later I had a bone mineral density scan and was told I was osteoporotic. I was prescribed calcium tablets but they made me ill so I took up gentle weight training under supervision ( I was only35 then) and after ten years of it I hope I’ve helped my bones. Im 60 now and on HRT patches which GP said will help my bones. I don’t eat meat but lots of dairy. I smoked for a while when I was 30-40 which didn’t help apparently. That’s all I can tell you except that GP said nowadays preventative prescribing would have given my young bones protection during those crucial years of bone mineral lay down which coincided with the onset of the illness.

Wishing you well.

sunnyweek profile image
sunnyweek in reply to stillsdisease

Hi, it sounds like you've helped yourself a lot. Yes they know more about steroids now and what may have helped you in your younger life. Glad the HRT is helping and I think your gentle weight training is a good idea. I'm looking into the best strengthening exercises at the moment. Wishing you well too.

stillsdisease profile image
stillsdisease in reply to sunnyweek

I was interested in a class called body balance a few years ago but the instructor said it wasn’t suitable for the osteoporotic as too much stress applied each individual joint, but who knows, we’re all different and there’s excellent advice here. I just had to ask the postman to open the milk as hubby is out and I just couldn’t open it, luckily he’s a nice chap.

sunnyweek profile image
sunnyweek in reply to stillsdisease

Its good we can ask, during lockdown I left a few things outside, eg toilet cleaner etc for my friend husband's to open as he passed by on his walk.

stillsdisease profile image
stillsdisease in reply to sunnyweek

the most embarrassing thing ever that I had to ask help for was undoing the button on my smart new trousers worn to the theatre, there was a big queue, it was the interlude and when I locked the cubicle I realised my dilemma, I had to go so opened the door and explained to the First Lady in the queue who helped me and waited until I came out to do them up for me. I was only 18 and insisted to Mum that I could manage so never told her what happened. It was mortifying; these days I’d ask any one 🤣

sunnyweek profile image
sunnyweek in reply to stillsdisease

I can see your dilemma, very kind of her to wait as well. Its the same with parcels being delivered, by the time I get to the door the driver has gone, so I train new ones to open the porch and leave there, they shout 'parcel man' and disappear before I've got off the chair!

Maureengibson profile image
Maureengibson

I was diagnosed with osteopenia in 2014, with a T score of -2.3. I was put on Alendronic acid, about 6 months later I developed a stress fracture of my ankle. I continued AA as they didn’t feel it was connected. However 18 month later I had an identical stress fracture in the other ankle and it was decided it was a side effect of AA, although stress fractures due to bisphosphonates more commonly affect the femur.

I just carried on taking AdCal D3, and getting Dexa scans every few years. It’s difficult to know what my true risk is, I have ankylosing spondylitis, so have new bone occurring in my spine, which shows my T score improving. Both endocrinologist and AS expert say the spinal score shouldn’t be used in the calculation, but my Trust continue to include it, so it’s currently -1.5. Meantime my hip measurements are getting slightly worse, with them concerned with a very opaque area at the femoral neck. I just persevere as I’m not keen on restarting bisphosphonates.

I stopped AA in 2016, my dentist says that the risks re jaw necrosis is there for years after stopping. Apparently it stays in the system for 10yrs. So my dentist is reluctant to do anything unless it’s an emergency. I’m on life long steroids as I also have severe adrenal insufficiency, and risk having a crisis from dental procedures, which is another reason for him being cautious. I’m lactose intolerant so don’t eat much dairy, and limited with exercises due to my AS. I try and walk daily and have an electric bike I use. I managed a few year ago to fracture a rib from doing a yoga stretch because my ribs are fused.

sunnyweek profile image
sunnyweek in reply to Maureengibson

Hi it sounds like you've done a lot to help yourself. Its concerning about the possible side effects of the medication, that's the reason I have to have a very slightly wobbly tooth removed first. My hip is severe so I will try and help myself with exercise and diet. Electric bike is a good idea, my arms wouldn't be strong enough now. Wish I had your T score though!

Ritaritis profile image
Ritaritis

Good morning, in addition to the medication for osteoporisis I am drinking more milk and snacking on cheese.🐕🐕

sunnyweek profile image
sunnyweek in reply to Ritaritis

Lots of calcium! What medication are you on?

tthiele profile image
tthiele

I would suggest going to a physical therapist that specializes in osteoporosis. There are some specific exercises that you can do to help maintain the bone you have and perhaps strengthen the bones as well. They also give guidance about how to move properly to help avoid compromising the bones in specific areas ( hips and spine).

sunnyweek profile image
sunnyweek in reply to tthiele

Thank you for this, very clearly put, I'll ask specifically for osteoporosis.

oldtimer2 profile image
oldtimer2

The Royal Osteoporosis Website is excellent and gives lots of information both about medical treatment and what you can do yourself in the way of strengthening your bones.

theros.org.uk/healthcare-se...

I was a little surprised at the lack of knowledge from the GP who contacted me with the result of an X-ray I had on my back which showed 'possible osteopenia' and proposed putting me immediately on alendronate.

It wasn't osteopaenia and the Dexa scan I had had the previous year showed 'above average' bone density. I said I didn't want to go on it and she lost patience and said that i had better talk to the rhumatologist - so I phoned the help line. After some discussion between the rheumatologist and radiology department, I had further examinations and nothing further was mentioned about treatment!

But that information doesn't help you, I'm just glad that I looked at the osteoporosis website first for accurate guidance and suggest that you ask them - they are the experts.

sunnyweek profile image
sunnyweek in reply to oldtimer2

Than you Oldtimer, and thanks for the link, definitely I'll be reading and contacting them. They must have decided between them you didn't need treatment. I don't suppose you want treatment for 'possible' osteopenia. My rheumatologist told me she researched osteoporosis the day before my appointment, as my results had been passed to her.

We just get the drug though, and the rest is up to us.

Durrell profile image
Durrell

Hi Sunnyweek,

I’m in the same boat, fed up with the pain. But like you I am trying to keep active, I’m following Dr Alyssa Kuhn on YouTube. She is a physio therapist for osteo. She has several level videos to follow. I have been repeating her 5 day challenge, for balance & strength for beginners. I get started with these & then find another I can incorporate as well, they are doable & already feel it’s helping get my day off to a good start. Worth a look.

sunnyweek profile image
sunnyweek in reply to Durrell

Hello Durrell, sorry you've got the same. Thank you the info I will have a look as that's what I'm looking for, many thanks.

tyncwmmarchhywel profile image
tyncwmmarchhywel

Hi s w have you heard this one, I asked the osto help line people if I could pay to have a Dexta scan, apparently if I did this they would not be able to moniter me further, could not believe it.

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