Hi, I've just found out I've got osteoporosis in my spine probably due to steroids 😞 my hips are going the same way.
I've been on the highest dose of Seretide for years and in the last 12 mths have had 3 lots of oral steroids too as I've got mild bronchiectasis too. I now take a smaller dose and am using tiotropium too. I also take omeprazole for reflux.
I feel really down about it, I just didn't expect the gp to tell me this after my bone scan.
Is there anyone else that's had a similar diagnosis at a fairly young age?
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Noodlers
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I was diagnosed the one prior to osteoporosis, at 59 and have regular bone scans, I am very active walking/running, and this has stopped the problem getting worse.
My niece is a physio and says that any weight bearing exercise is good for osteoporosis. Walking is the best weight bearing exercise she says and it doesn't have to be strenuous in order to gain any benefit.
I'm sure your Dr will be prescribing meds to maintain your bone density and you could discuss supplements and diet.
It is quite upsetting to get this diagnosis. It may help you to join the Bone Health forum. There are many members who will be able to give you advice on exercise, diet and supplements that will be of benefit.
There is also lots of information available from the National Osteoporosis Society.
Hi. Regrettably got diagnosed with this at 52, in my feet, knee, hands, hips, elbow and neck. The biggest issue for me has been the sudden onset of arthritis and the impact on my abilities.
Hi so sorry you were diagnosed with osteoporosis and have chest issues too. I've had asthma most of my life and diagnosed with Copd at 50 I did take steroids but never picked up with them then had a big reaction to pred so a no go for me so stuck really. Took seretide, ventolin and tiotropium since 50 and still do. Had a balance shutdown at 54 and fell lots of times consequently broke an ankle and leg then came osteoporosis after bone scan now osteoarthritis in various places. I was 60 last month and have lots of other problems too but I do what I can and have adapted to cope. I have travelled and get about with a boat load of meds for a just incase!!! I will never run a marathon but I never really wanted to do that anyway. There are good treatments out there research them... you can have your spine strengthened without surgery it's some form of calcium which sticks to bone so I've heard!!! Maybe someone out there has experienced this? This has been a terrible decade for me so let's welcome the next and it's better. If I can help in anyway I'm here but life is good most days especially when I can breathe. I take lansoprazole for reflux. Are you male or female?😊
Thank you for your reply. It sounds like you have a fair bit going on there too.
I'm quite an active person in that I have a physical job where I'm on my feet all day. I do Pilates 2 or 3 times a month so may do that more often now.
I'm certainly no runner, always hated jogging. I don't mind walking so I will make the effort to do that more now.
Hi, yes I have osteopenia and now probably osteoporosis but not had bone scan for years! I take loads of supplements to help both my asthma and bones ! You need to do your own research. Acid reducing drugs also cause OP!! I now take digestive enzymes and bromelain. Most people have too little stomach acid which causes acid reflux. Doctors should not be prescribing these drugs at such alarming rates! Since taking the enzymes I feel my asthma is better!! I also take magnesium, boron K2 and D3 amongst others for my bones!! Doctors just keep giving drugs on top of drugs!! In my opinion they create more problems than they solve !! Please research and join forums.
Yes I was at 60. Now take calcium and vitD daily and cannabis oil for my joint pain. Can now move freely and am more able to walk,do things without crippling pain especially in neck,hips and spine.
maybe it is not caused by steroids, right? I have a friend at 42 that was diagnosed with osteoporosis without any steroids at all. can you please mention some of your life style and eating habits? in my friend's case:
how often do you get oral steroids (prednisone or similar)?
So sorry to read you have this Noodlers.
I’m 58 and have been asthmatic for fifty five of those years, using a steroid inhaler to control it for over thirty years now (prior to that I was on IntalCo, a non steroidal preventer/reliever - no longer available as far as I know). As far as I’m aware I don’t have osteoporosis.
Now granted I do regular ballet classes (currently twice a week) and have done on an off for most of my life (plus gymnastics as a child) which will certainly have helped with my bone density. Nor have I ever needed to take oral steroids on a regular basis. I’m currently on Flixotide 250 (same steroid as that used for Seretide but without the salmeterol) and have been for over fifteen years. My understanding is that it is the oral steroids that are the risk when it comes to osteoporosis rather than those that are inhaled. Certainly it’s never been suggested to me that I should have a bone scan to check my bone density, though maybe there is new thinking on this. If so, I’d like to know about it.
Sorry to hear you've had asthma for so long. I've only had it for the last 15 years or so.
I don't think low dose inhalers are such an issue but for the last 7/8 years I've been on the highest dose 4 puffs a day of the strongest Seretide inhaler.
I also had 3 lots of oral steroids last year as I had chest infections almost constantly for 6 months.
I went to the go as my skin is so thin now, it's been gradually getting worse over the last 5/6 years. It tears and bruises very easily.
I think she finally took it seriously when I went in the day after a puppy jumped up at my arm and basically tore it apart.
While it’s true that Flixotide 250 will be lower than the Seretide you were put on, it’s actually not considered a low dose steroid inhaler😀. Admittedly I am able to vary the dose, so I’m currently on maximum dosage but that goes down in the summer. That, of course, will help me.
I too have been on PPIs (Lanzoprazole in my case, I couldn’t get on with Omeprazole) but I had such a bad time when coming off them the first couple of times I was put on them that I now refuse to take them. I too was put on them for reflux issues which we now think are down to a combination of things: menopause, collagen being slightly too elastic (I have Joint Hypermobility syndrome), etc. I manage now by being careful with what I eat (and drink - no tea or coffee for starters), how much I eat and when I eat it and taking Gaviscon Advance, but I am very well aware that not everyone can manage on Gaviscon Advance. I think I’m right in that PPIs can result in less calcium being absorbed which, if that’s correct, won’t have helped you. And of course, an increased risk of Osteoporosis is a known issue for any woman once she reaches the menopause. That fact, and the problems surrounding overly flexible joints, are the main reasons why I keep doing the ballet - that and the fact that I love doing it of course:-).
All my tendons are thinning due to accelerated apoptosis [cell death] as a result of long term steroid inhalers. My shoulders and arms have been affected and in March this year my quadriceps tendons snapped at both knees. 10 days in hospital, 6 weeks in straight leg braces and further leg braces at varying angles at the knees. Having to learn how to walk again but looks like my legs will never heal completely. I developed asthma as a result of a flu vaccine in 1984. Beware of men in white coats.
Oh my gosh. How awful for you, in sorry to hear this.
What sort of dose have you been on?
I have trouble with a tendon in one of my feet, I wonder if the steroids have contributed. It's better now I've got orthotic insoles but still flares up painfully now and again.
I had been taking Flixotide [ Fluticasone propionate ] 50 micrograms at one dose per day for about 15 years and previously Becotide [ Beclometasone Dipropionate ] 100 micrograms daily since 1985. There are fluoride compounds in Flixotide. I am now taking 1 puff daily of 200 micrograms of Asmanax [ Mometasone Furoate ] which has chloride instead of fluoride. Fluoride compounds added to drugs increase toxicity over 10 fold compared to chloride. If most people with asthma were treated with remedial action for adrenal sub-optimal disfunction [ usually due to vaccines] then we would not have problems with SYNTHETIC cortisol replacements.
That sounds horrendous. I’m at increased risk of injury to joints but that’s due to another, entirely different, condition (Joint Hypermobility Syndrome - ankle turns, slipped knees, etc). You say your problems are down to long term use of steroid inhalers, may I ask what kind of inhaler you use?
I had been taking Flixotide [ Fluticasone propionate ] 50 micrograms at one dose per day for about 15 years and previously Becotide [ Beclometasone Dipropionate ] 100 micrograms daily since 1985. There are fluoride compounds in Flixotide. I am now taking 1 puff daily of 200 micrograms of Asmanax [ Mometasone Furoate ] which has chloride instead of fluoride. Fluoride compounds added to drugs increase toxicity over 10 fold compared to chloride. If most people with asthma were treated with remedial action for adrenal sub-optimal disfunction [ usually due to vaccines] then we would not have problems with SYNTHETIC cortisol replacements.
444nM I know Flixotide well, having been on it for over twenty odd years (originally on 125mcg and then upped to 250mcg over fifteen years ago). Prior to that I was in Becotide for around ten years (originally on 50mcg, then upped to 100mcg after it became clear than the 50mcg was not enough). Becotide never fully controlled my asthma, whereas Flixotide has been fantastic.
As I have said, I do have joint issues, but always have done. If you have faulty collagen (caused by a genetic mutation I was born with, inherited from my father - who doesn’t have asthma) then issues will arise from it:-).
Well, I give it to my cats as it's full of amino acids and l glutamine. It helps to renew mucosal cells, so my guess is is it might help to regenerate some of the cartilage I'm probably losing. Also my skin is incredibly thin now from the steroids so I'm hoping it might help that too.
Actually, having done a bit of googling I note that there’s a suggestion it might help bones - given that collagen is found in bones. Has it been prescribed for you?
With hypermobility syndrome the problem comes with the collagen in the soft tissues - notably muscles, tendons and ligaments - which is too stretchy. So the support that would normally keep the joints in place is not as firm as it should be. It’s typically worse for women because, I think, of our hormonal rhythms. We also tend to bruise very easily and can naturally have thin and also rather stretchy skin. So some of the symptoms of steroid related issues you mention I already have, and have had for most of my life (even when I wasn’t on steroids). Osteoporosis is a risk for some sufferers simply because the impact exercise that would strengthen bones causes pain - even something simple like walking can be hard for some. My own version (and typically the condition can be as varied as asthma) isn’t as bad as that. That said, when I did stop ballet for a few years I started to get a number of issues, including feet that were so painful it felt as though I was walking on cut glass.
A major component of collagen synthesis is vitamin C complex found in real food. Vine ripened fruit is a good source, tomatoes, bell peppers and citrus. Ascorbic acid or crystalline supplements, synthetic 'vitamin C' is not vitamin C complex and can further lower vitamin C complex in the body leading to thinning of skin, damage to blood vessels. It is sub-clinical scurvy. People who have scurvy are in real danger of taking synthetic supplements.
Well, given the amount of vit C I get (from real food) I doubt that’s a problem for me:-). I am also under consultant led care for gastroenterology and he does do dietary checks (including blood tests) on a reasonably regular basis to ensure that all is well. Last check came back all clear - even for vit D:-)..
Your snapping tendons interest me. You weren’t on any antibiotics in the preceding six months of the injury occurring were you? Only reason I ask is that there is one antibiotic that has weakened and snapping tendons as a rare - but known - side effect.
No antibiotics. I had knee pain for years, cartilage and bones were all good. Accelerated cell death in tendons [ apoptosis ] is well known. What antibiotic[ anti-life ] are you referring to?
Ciprofloxacin. It’s one of the more powerful general antibiotics and in the UK it’s usage by doctors is monitored to ensure it’s not over prescribed.
Vit K is v important if taking calcium - it helps the calcium bind to the bones. So eat your greens (kale, spinach, chard, parsley, green lettuce), broccoli, cauliflower, cabbage, fish, eggs, meat, grains.
And top up calcium through diet.
I like that someone recommended digestive enzymes - I've just started these and feel good.
Two family members developed osteoporosis, not through steroid meds but by relentless dieting (cutting out good fats as well as the bad ones). We're surrounded by low fat options when we need fat options, moderation is better than low fat.
Yes I have osteopenia which is probably now osteoporosis. The acid reducing drug you take also affects your bones. I take loads of supplements to combat it and digestive enzymes. Most people have too little stomach acid to digest food not too much and doctors are dishing these drugs out daily! Do your research get on Op sites for natural remedies. Take homeopathic medicines. You need magnesium, D3, calcium, boron, silica, Vit. C, collagen. Try take control of your own health. Doctors sadly cause more than they cure!
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