I just wanted to ask if anyone has both emphysema and osteoporosis? If so, would you mind telling me what maintenance inhaler you use and what medication have you been prescribed for osteoporosis.
I'm on Trimbow and not very happy about it, but don't know what alternative inhaler to request. My other problem is, the calcium and vitamin D tablets don't agree with me - they cause dehydration/stomach pains/bloating, which then affects my breathing. Risedronate was prescribed, but I only managed that for 2 weeks, as it also gave me bad stomach pains.
The other thing I'll just mention, is that my blood calcium levels are good and I have a lot of calcium in my diet, but when I tried Vitamin D on its own - black eyed/dehydrated again. I do drink a lot of water.
Sorry to sound so needy, but any advice would be much appreciated!
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anng18
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I am very similar to you I have emphysema and osteoporosis amongst other things like osteoarthritis and rheaumatiod ,the treatment I have been started on for osteoporosis is an injection every six month called denosumab, most people have a infusion every 12 months ,I also use trimbow I'm not happy with ,but my gp says it's the best,and I also understand about the bloating all the meds I have seem to bloat me which affects my breathing ,which I am seeing my gp about this morning ,because my osteoporosis is servere I fractured my spine last year I didn't know I had it until then ,I don't mean to frighten you all I am saying be careful when bending ect not all people with osteoporosis fracture there spine I was just unlucky ,do take care
Thank you so much for your reply. I was thinking about requesting the injection, as it bypasses the stomach. Please let me know if you have any joy from your visit to the GP, regarding bloating. Once again, thank you for taking the time to respond.
Have you tried cod liver oil as a vit D supplement? You can take it as a liquid form or as a capsule. Because it is a food rather than a tablet, your body may process it with fewer side effects.
I have emphysema and Aspergillosis, a recent X-ray has shown osteoporosis deterioration in the spine and I have been prescribed Alendronic acid one tablet a week. My preventer inhaler is Anoro Ellipta and Salamol reliever, I have found I rarely need the Salamol since being on the Anoro. I also take an over the counter Vit D along with all my other meds.
Thank you Biker, for taking the time to respond. I used Anora some years ago, but it affected my stomach, so I had to change. Otherwise, I would agree with you - it has no steroids in it, so it would be technically better!
There was an item on the news this morning about a new treatment for osteoporosis, which can be offered to post menopausal women. I wonder if it is the treatment Alice talked about or something quite different? Hopefully different and better, though possibly injections like hers might suit you better, since they bypass the stomach. xxx
I have bronchiectasis and osteoporosis, which are often linked, and have had six compression fractures. I use a Fostair inhaler and take calcichew without problems. Over the last 13 years I’ve had a variety of treatments, from alendronic acid tablets, which didn’t work too well, to various infusions. At one point I had daily injections for two years (which I’m about to start again) which are quite different, rebuilding bone rather than just stopping its decline. So what I’m saying is that there all sorts of treatments out there. Do talk to your GP about it and, ideally, get to see a specialist. I do hope you find what suits you, B
Hi I have similar problems although mine is bronchiectasis and not emphysema, though I suspect both are similar. I take Vitamin D3 drops, I put 4 drops on my morning cereal, you can’t taste them and maybe they would be easier on your stomach. I also have osteoporosis and I have been having Zoledronic acid infusions, once a year. The osteoporosis has been caused by the medication given to me in 2015 to try to stop breast cancer coming back, it saps the bones and as a result, like Alice I now have spinal fractures although I didn’t know I had them until the bad back pains when standing or walking forced me to see my GP and then X-rays confirmed. Xx
I don't know whether you saw the news today. A new drug, given by daily injection is going to be released on NHS in 3 months time. It works hormonally. I was sbout to start this drug under the name of teriparatide through a specialised clinic but it has been found that I have a parathyroid problem which means that I cannot have it. For most people it is a game changer. I suggest that you ask about it.
Slightly different but I have severe copd and bronchiectasis and osteopenia (precursor to osteoporosis) My inhalers are trixeo and Alvesco, plus other meds. I take Calci-D every day and my second denosumab injection is booked for next week. I had unpleasant side effects with the tablets but not noticed any with the injection. Hope that helps. 🙂
Just home from doctor,he gave me buscopan for bloating ,I said I don't have IBS he said it should relax the stomache and help with bloating ,he also told me trimbow next inhailer is the stongest to stick with it
Funny you should ask. Am just going through this sort of thing myself, having just changed inhalers and waiting for various tests for heart, etc. I’ve to decide what action to take once I’ve spoken to rheumatologist, and had other test results.
Four years ago, medical advice that it was “okay” for me to stop taking the once a week Alendronic Acid tablets for various reasons, and that just taking the ADCAL/D3 would be fine. It wasn’t!
Now I find I’ve developed osteoporosis in just those 4 years from stopping it, as have been on steroid inhalers and Prednisolone for years!
I’m just actually off the phone to a lovely Osteoporosis Nurse, and thanked her for sending me an information leaflet on their proposed treatment, which guided me to look at the information on the Royal Osteoporosis Society, Information and Support pages. What a great site this is! Their videos are fantastic too, and so very, very well presented and easy to understand on all levels. This should help you to see what drug therapy is available, and what questions you might want to ask when you see your nurse 👍
Do watch all the videos, even the one aimed at “younger” folk, as that still had much information relevant to anyone with an osteo diagnosis.
I was initially upset when I got the results of my Dexa Scan, as it’s just something else I really don’t need! (All hopes of cycling outdoors again one day now gone 😥) …. but while not reversible, it IS treatable, and diagnosis does not inevitably mean broken bones. I am sure your nurse will want to work with you to find all your own best options for drug treatment and supplements.
Thank you so much Shogi for you information and moral support. Very kind of you, to give such an in depth account of yourself.
I've read on government health document that taking steroid inhalers long term, does effect the bones. My doctor denies this, as she said it is directed at the lungs, but obviously a small amount must go into the blood stream.
Like you, I wasn't happy when I got the results of my Dexa scan - it's a problem one could do without!
Hello there! My husband has emphysema and osteoporosis, as well as parkinsons disease and cardiovascular disease. He was put on an inhaler called trelegy ellipta a few years ago, and it has been an absolute game changer! He went from having 6 chest infections in one year, to zero. Other than covid a couple of years ago, which he coped well with, his chest has been pretty clear. He takes alendronic acid and calcium tablets for the osteoporosis.
I just saw this news article on the BBC News App, so thought I’d share with you. Cheers Anng 👍
”Tens of thousands of women who have gone through the menopause might benefit from a new bone-strengthening drug, says the medicines watchdog National Institute for Health and Care Excellence (NICE).”
Good for you to have as much information as possible to work with when you see the nurse to make an informed choice. Shame this is not available just now, and hope it’s not going to be one of those wonderful drugs which turn out to be too expensive for general prescription.
Thank uou Shogi. I have osteopenia dx in 2003 with no change at last dexa in 2020 but slightly worried for daughters one of whom began menopause at 38. Mine was early too, lovely gp insisted I went on HRT because we all started late at about 17. Fewer years of menstruation usually effects bones apparently hence the insistence of HRT. ×
I never used to worry about osteoporosis until respiratory problems fired up again with a vengeance about 17 years ago. I’d been taking oral Provira from age 37 when I was FINALLY diagnosed with endometriosis, wasn’t allowed a hysterectomy, so hormones and regular (perfect until recent) Dexa Scans. Hard to say exactly when I went through menopause as no menstruation on Provira, but think I was about 53 when I stopped taking it, and that was that!
Used to be extremely fit and active, with a disgustingly healthy diet, grew some of what I ate, everything cooked from scratch….. but once your breathing goes, one thing impacts on another, especially cocktails of medications that ended up making things worse, as I’m sure you’ll appreciate! Hope you and your lovely daughters can keep fit and active and eating well, as that makes such a difference to living well and keeping osteoporosis in check, so keep up the good work and enjoy your summer 🤗
yes I have emphysema along with hypersensitivity pneumonitis and osteoporosis. I don’t use an inhaler but have yearly infusions for my osteoporosis. You can also have hrt for bones if the other drugs don’t agree with you
I have Asthma, bronchiectasis, osteoporosis and a hiatus hernia that causes reflux. When I broke my wrist last year, the Fracture Liaison service became involved. The nurse was horrified to see the amount of medication I was taking for the reflux and told me that the Risedronate I had been prescribed would be making it even worse!
She took my case to the team meeting and the consultant agreed that I should be offered an annual infusion to replace the Risedronate. I had my first one last August. It took 20 mins and I had none of the potential side effects ie flu like symptoms for 48hrs.
There are a number of alternatives to the tablets. I am looking forward to having another infusion soon.
Risedronate did not agree with me, but sometimes the medical profession seem to think you are just being difficult. I was told that Risedronate could cause acid reflux, but you could be given medication for it! What they don't ever seem to consider is that some of this medication clashes, hence me reaching out to everyone on this site. They also seem to ignore other medical conditions, such as lungs. I also had an umbelical hernia, a long time ago, but had a mesh put in. The surgeon told me he put the mesh in very tightly, which tends to increase breathing and digestive problems. Very interesting to hear about your infusion!
hi there, i am on trimbow for my copd and for the osteoporosis i am on AdcalD and alendronic acid tablets, but the alendronic tablets make me feel sick, taken only once a week, but hair falling out and teeth dodgy, they are some of the side effects. you can get a 6monthly injection for the osteoporosis but the list of side effects is longer than my arm and look worse than taking the tablets - good luck
Yes, the tablets affected my stomach. I read about the hair and teeth - very depressing isn't it? I found a dentist, by going private, who has checked my teeth, which have always been horrible, and I paid for a special teeth bone x-ray, done at the hospital. This was done prior to trying the pills. My teeth bones were ok, which was a relief. I also see a dental hygienist, as part of my denplan care - I think she has helped a lot. I pay £18 a month for 2 dental hygienist appt.s and 2 dentist appt.s. a year.
Hi there. I also have osteoporosis. I have COPD and on Trimbow which gives me a very annoying croaky voice. I’m on Alendronic acid and tolerate the calcium and vitamin tablets well. One thing to remember is that if you’re on those you shouldn’t eat anything wholemeal/wholegrain within two hours as the phytates destroy the calcium absorption.
I have also been on Risedronate which is the same as Alendronic acid. When I first went on it I couldn’t tolerate either, it gave me terrible pain in my thighs which was almost unbearable.
I joined the osteoporosis Society and they have a helpline which is manned by experience nurses.I wanted to find out if it was necessary to be on Alendronic acid and was told it was imperative because otherwise I wasn’t giving myself a chance. They will also talk you through the findings of your bone density test as I didn’t understand it. Since taking the medication again, I’ve been fine. Another thing to remember about the medication is that you must look after your teeth and tell your Dentist what you’re taking and he will take extra special care.
If I were you, I would try and get on the osteoporosis medication again and give it another try. I have the added problem of Hyper Kyphosis (rounding of the back) which squashes my lungs quite a lot.
I think all these things we seem to end up with are very worrying and concerning. I’m now 73 and a lifetime non-smoker so I’m a little bit of a mystery to my Doctors.
You don’t sound needy, you’re just worried. What is it about Trimbow you dont like? Are you using a spacer? I’m not keen on it either because of the effect it has on my throat. If I need to, I use Subutamol but that isn’t often.
Thank you for all your advice. I will definitely have a look at the osteoporosis Society. It sounds very good. Nobody really explained my results, but the nurse did tell me it was 20 to 30% lower than someone of a comparable age. Your information on calcium and wholemeal/grain etc. was also very interesting, as I have never heard that before.
Prior to trying the medication, I contacted my dentist, who I'd been with for over 30 years, only to be told that as I had not had a check up for over 2 years(Covid?), I was no longer registered with them. As such, I joined a private dental plan and paid for, at the request of the dentist, for a special teeth bone x-ray done at the hospital, which is now on record and will act as a reference for any further deterioration. My dental plan also covers 2 dental hygienist appt.s, which I have also found excellent. from a preservative aspect.
I have been on Trimbow for two and a half years - there was no negotiation last year, when I spoke to a Doctor. I don't like it, as I have lost a lot of weight on it and have panic attacks in the morning, after my first daily dose. It also says in the enclosed pamphlet, that long term use affects bone density. I'm speaking to a COPD nurse in a few weeks and hoping she will give me a different inhaler. I also use a spacer and Trimbow does make my voice croaky, which is very irritating!
Once again, thank you for taking the time to help me. I am very grateful.
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