Hello, I have just joined and looking for some help with making decisions about managing my osteoporosis. I am 64, have CFS (M.E) and had migraine associated vertigo for 30 x years, had back trouble, coccydinia problems (nerve irritation) for 30 years since a miscarriage and D&C, had back trouble for long time, then lifted a heavy lamp 2 x years ago and fractured my spine, kept being told to do exercises then choked on tea and severe pain, got myself a private MRI which showed up fracture, eventually got MRI from NHS which showed 3 x fractures and Dexa scan showed -3.6 in lumbar spine, some vertebrae down to -4.1 femoral neck -2 and total hip -1.4. Been advised to used Denosumab or maybe get teriparatide. I suffer bad gastritis and have gallstones, so cant tolerate pills on stomach. I don't like the sound of the side effects from these drugs, as I am very med sensitive as are a lot of people wit autoimmune problems and CFS.
Can I reverse these bad readings with natural means? I found my vitamin D to be only 35 where it has been for at least 4 x years or more, recently I managed to get it up to 53, with natural means and diet, I am eating load of calcium probably making about 800 mg a day with only a small supplement of magnesium and calcium, I started on K2 4 x months ago, every second day and boron every 2nd day. I know this is very little very late (I wish I had known what was going on in my back before). I cant exercise, cant bend, although I am trying to increase walking to 20 minutes to more a day (causing pins and needles and sciatic in leg) but I keep going.
Has anyone any advice, it would be much appreciated, has anyone reversed bad figures like this? I am frightened to go on holiday etc now I feel so vulnerable. The pain from 2 of the fractures lasted 2 x years, the third is ongoing (higher up) and not so painful.
Thankyou
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cmoc
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If you are not keen to take OP medication then the other option is via diet, exercise and supplements. Your Vit D levels are perhaps on the low side and perhaps you are not taking enough calcium daily either.
One can of course do all the latter and take an OP medication too. We are all different in how we react to the drugs on offer and also how we fare if going down the non medication route.
As to whether you can improve on your T scores whichever route you take is again very individual. There are a few good ending posts on this forum but then the people who are getting on ok will probably not bother to join a forum will they?
Thanks Kaarina for your reply. I was going to put one message to everyone but I am having a bit of trouble with the site, not sure what I am doing just yet. Yes, I am trying to up the calcium intake without too much dairy, mostly salmon, broccoli, sardines etc. I am living on fish! I am, against my better judgement, considering trying the injections, to see if I can tolerate them just for a while. Its very off putting when they can cause bones to become more brittle, quite worrying, but I know how painful a fracture in the spine can be. Yes, we do need to hear more from the people who have got good results with something, that is true!
If you haven't had a "fragility" fracture it's probably feasible to go the natural route. In my opinion it's a good idea to do all the natural stuff anyway, so even if OP drugs have to be taken for a couple of years one is well positioned to come off them quite quickly. The exception is denosumab which recently has been shown to have a sharp rebound effect after discontinuing which leads to microcracks and vulnerable bones. I recently posted this account of my experience on the PMR/GCA forum. Probably more information than you would ever want!:
Thanks Heron, I have read lots on your success, great to hear and gives us hope. If a fragility fracture is a fracture in the spine, I have had 3 (hadn't got a clue until a recent MRI) but had a lot of pain before the diagnosis. The pain from one of them was instant, after choking on tea, it was like being shot in the back. No, not more information that I want, you can never get too much information to help this. Thanks.
I agree with Kaarina's advice about preferring teriparatide over denosumab. With denosumab you really have no choice but to go onto another medication, which in some places I've read is often teriparatide anyway. But the doctors are still working out what the best protocol is to help people off denosumab. Teriparatide can only be taken for two years, but given the success many of us have been having with our exercise and nutrition including a few supplements I wouldn't be surprised if that could be enough with a couple of years teriparatide to turn the corner, depending always, of course, on an individual's condition and other medical issues which might be present. Don't make decisions or change or add medications without a new DXA scan. It's denosumab (Prolia) which has been implicated in rebound osteoporosis. Teriparatide is different because it stimulates osteoblasts (bone building cells) while bisphosphonates and denosumab inhibit the action of the osteoclasts (bone remodelling) cells.
Hello cmoc and sorry to hear you're having to deal with so many health issues. I can understand your fear of further fractures, but can equally understand your reluctance to take osteoporosis medication, particularly in view of your stomach problems, though I think that both drugs that have been suggested to you are given by injection and would therefore bypass the stomach and be less likely to cause digestive problems (although of course potentially there could be other side effects). The nurses on the NOS helpline would be able to give you more information about this, and also about how these drugs work. I think teriparatide works by encouraging new bone growth, whereas other osteoporosis drugs prevent the breakdown of old bone - all the drugs, however they work, aim to increase bone density and therefore reduce fracture risk, and there's evidence that they can achieve this in the short-term, though the long-term outlook is less certain, particularly with the bisphosphonates.
I agree with Kaarina about your Vitamin D level, which is only just above the minimum recommended by the NHS, although well done for getting the level up the way you have. Many experts actually recommend it should be at least 75 nmol/ml, with some advocating 100 nmol/ml! It's also recommended that your daily calcium intake should be 1200mg, so I'm not sure whether you're achieving this. Likewise many of us take daily supplements, rather than alternate days. Do you take K2 MK-4 or MK-7? The jury is out on which is better, but it's definitely recommended to choose one of these two.
Other things you might consider are drinking kefir (supposed to help with building bone through better calcium absorption and some find it helps improve digestive disorders) and eating 5-6 prunes a day (studies claim to have shown this helps improve bone density, possibly because of their boron content). As far as exercise is concerned, it would again be worth talking to one of the NOS nurses; a good physiotherapist may be able to help you with this too.
Some people on this forum have improved their t-scores through diet, exercise and supplements alone, whereas others have found this hasn't been effective, so it really has to be a personal choice. After a year of bisphosphonates I decided to come off medication because I couldn't tolerate the side-effects so am now going down the "natural" route. My t-scores 3 1/2 years ago were -3.2 in the spine and -2.3 in the hip, with no major fractures, so I'm almost certainly at less risk than you, which probably makes my decision easier. I'm planning on asking my GP for another DEXA scan later this year (when it will have been nearly 4 years since the last) having been refused after a 2 year gap - so I'll find out then whether this approach has worked for me!
I hope you manage to come to a decision that works for you and good luck! Do let us know what you decide to do.
Thanks MetOO, I will phone the NOS helpline and ask advice. I keep working on the Vitamin D level, have just invested in a Vitamin D lamp, but can only use small amount at a time, due to side effects. If I take vitamin D tablets I get migraine, the sprays in the mouth, both the litchen and the lanolin drug me up too much, No problem with the sun I am glad to say!
Am taking K2 Mk 7. I am being sent to a physio to try and give me some exercises to do to build muscle as I cant do much else, I can walk a bit and climb stairs. I hope the natural way works for you, I would much rather do this, and I hope your next DEXA scan show some improvement.
There are OP drugs that don't come in tablet form cmoc. Maybe you could consider Zolondrenic Acid. An annual infusion, which takes about 30 minutes.
Thanks poemsgalore, I asked for the injections because I knew I wouldn't be able to tolerate the tablets, I have gastritis and gallstones both cause trouble with my food etc. I don't want to try the annual infusion first in case I get side effects and I am stuck with them. Its all a bit of a minefield.
For what is is worth, if I was you with the spinal fractures you have had and was given the choice between Denosumab or maybe teriparatide, I would strongly press for the latter and worry about what to continue with when the two years on teriparatide was up. Apparently it is strongly advised to start on another OP drug after teriparatide so any improvement made, continues.
Hi - I had not heard of teraparatide before and I have been on denosumab for the past 3 years with no problems. However, since reading on this site I am now aware of the apparent down side. I was relieved at the time to be offered it as I had such a bad time on AA.
On looking at information available on teraparatide there is reference to causing bone cancer- although rare. It all seems to be a minefield. Have an appointment soon with bone consultant and was hoping to ask about coming off denosumab but don’t know what alternative there would be 😩
I agree it does all seem to be a minefield. There is not that much choice with the OP drugs and all have possible side effects, although some rare, so we are told. I do not feel at all confident that enough is known about these drugs long term. We are the guinea pigs. Guidelines appear to change and one has to try to keep up with them. Out of all the drugs I still feel that now strontium ranelate (a sad day for me) has been withdrawn due to scaremongering and patients not being offered it or refusing it, if offered, I feel teraparatide is the best one going but it is expensive so fairly difficult to get.
i wish you well with your forthcoming appointment.
Sorry, a bit late seeing this. I believe teriparatide is now often considered for people who are coming off denosumab because it actually works completely differently from denosumab and the bisphosphonates. They work by inhibiting the action of the bone remodelling cells, the osteoclasts, which remove old bone. Teriparatide works by encouraging the action of the bone building cells, or osteoblasts. It is hoped that this action counteracts the rebound effects of coming off denosumab to prevent drug-induced rebound osteoporosis and maintain the good effects of denosumab. If you are able to follow a really good nutrition and exercise path (and it doesn't take much exercise, just some of the right sort like walking every day maybe carrying a bit of extra weight) while you are on the medication you may well find that at the end of the course of medication you are on your way to maintaining and improving your bone strength without further drugs.
I am now on my sixth year of denosumab following two fractures in the spine. I could not tolerate the pills I was first offered and a consultant advised denosumab as an alternative.
The 6 monthly injections are painless and although I have about a for a week after of various reactions ranging from an upset stomach, headache and increased back pain I have had no other reaction. Moreover my last DEXA scan after 5 years showed an improvement in my bone density. The original advice was to stop after 5 years but medical opinion appears to have changed and I have been advised to carry on with the injections. I am 76 and am able to walk quite well and garden provided I pace myself.
I have also had an improvement in my T score readings which were in the 4’s and am now in the oestopenia range now so was really pleased. I have had no side effects but having read the information from this site I am now concerned. Not sure what the alternative is- sometimes knowing is worse.
Denosumab does give good results which is why everyone is so gutted to learn that once it's discontinued the rebound osteoporosis can occur. Just take whatever bridging medication your doctor and you decide is best for you, and do the natural stuff that so many of us are finding helpful, and I expect and hope that all will go well for you.
Hello just reading your post and in particular your intolerance of vitamin D tablets, have you tried drops? I use 3/4 drops daily in my morning cereal. I'm due a blood test next week to check on my levels so will know if they are working! Good luck with everything.
Hi, did you have a reaction to the tablets etc. before trying the drops, I did think of trying the drops but haven't bothered after a bad reaction to several different brands of the vitamin D tablets,
then a really drugged reaction to the vitamin D sprays (both types, the one made with Litchen and the one made with lanolin. It sounds as though you are getting on OK with the drops.
Hi, as I take other vitamins in tablet form, I just decided on the drops. Just a point of note, they are Vitamin D3 drops with added Vitamin K2, which I believe is much better than Vit D alone. Hope this helps.
Hi cmoc. I assume you have tried the D3 in the gel, oil filled capsules already. I take the Drs Best brand in either the 2000 or 5000 IU strength, depending on the season and my blood level. They are made from lanolin, so perhaps wouldn’t agree with you..
I take easy absorb Mg bisglycinate 150mg tablets which I buy from Holland and Barrett. I usually stock up on them when they have an offer on of ‘buy one, get one half price’. They don’t upset my guts, unlike Mg oxide. I aim for a very rough ratio of 2 Ca to one Mg. As I aim for 1000 to 1200mg of Ca, I usually take either 2 or 3 x150mg of Mg. ( 300 to 450mg). The rest would come from my diet.
As for Ca. 800mg may be sufficient for you, although as other members have pointed out, ingesting 1000 to 1200 mg would perhaps be better.
I certainly wouldn’t achieve this target without including dairy. If you cannot tolerate cows dairy, have you tried goat dairy? The taste is the same as cows, except that its a more pure white colour and is said to be far easier to digest.
I buy St.Helens Farm full fat Goat yogurt from Sainsbury’s and a daily portion of 150g contains 360mg of Ca. It’s delicious with fresh seasonal fruit, as a custard substitute on puddings and fruit pies, or as a dollop on home made soup as you serve it. I also drink goat milk. Goat cheese is bland, so I prefer a small portion of a good strong, mature Cheddar.
I was a vegetarian for 40 plus yrs until I started breaking bones in 2010. Protein is vital for bone strength and flexibility, as well as muscle strength. When I started monitoring my nutrient intake, I was shocked to find my protein intake was way below the U.K. RDA of between 50 and 56g. Sometimes stated as 0.8g per Kg of body weight.
Later I saw the following paper by Professor Heaney and he suggested we need at least 1.2g protein per Kg body wt.
I gradually started eating more dairy, eggs, tinned Alaskan Wild Red Salmon with bones and liquid for the Ca, Omega 3 and D3. More recently I’ve added RSPCA certified free range, organic chicken as an additional protein source, at approx 24g per 100g. Not an easy decision for a vegetarian!
After we have eaten the meat, I cook the rest in a pressure cooker and /or slow cooker. After picking out all the inedible bits, but salvaging some of the marrow from the discarded, now softened long bone ends, the remaining, plus the bits of salvaged marrow, makes the base for a broth. If you then add mixed seasonal veg of your choice and cook in a pan until just soft, you have a delicious broth. I then give it a quick wiz to make it semi smooth. When served with full fat goat yogurt, it becomes lovely and creamy and full of nutrients! I use onion, carrot, celery, butternut squash and sweet potato.
Just to lessen my vegetarian guilt over the death of the chicken, the skin and other edible ‘waste’ bits, go outside to feed our local vixen. I later dry the bones and mill them in an old coffee grinder. My hubby then uses this as bone meal in the greenhouse. At least none of the chicken has gone to waste!
Hi Lynne, thanks for all the information. Theres a lot I can use here. I tried making a bone broth a while ago, with left over chicken bones, boiled it all up for about 5 x hours, I was worried to use it as it seemed fatty (I have gallstones and suffer gastritis as well) anything slightly fatty and I can be in a lot of pain.. I keep meaning to try again. The dairy is a problem as fat is out, but I am now eating fresh salmon 2 or 3 times a week for vitamin D (lunch) with Brocolli (loads of it for calcium)
also, tinned red salmon, scampi nearly every lunchtime, I can get away with some cheese so eating that, bit of custard, I take a small supplement and will try and up it but tend to get reaction to things, I am probably making 800 to 1000 mg calcium, the vitamin D I get from sun, vitamin D lamp and food (because I react) but I am aware that this might not be good enough, I have got some fortified cereal to get extra D and calcium (every day)my diet is now based around getting calcium and vitamin D.I haven't tried the D in the gel form. I can see you have really worked hard to get all the right things inside your body.
I am confused about protein. I have eaten a lot of protein or a long time as I suffer reactive hypoglycaemia and have to keep my blood sugar levels up. Now I read that we need protein when fractures are healing but that too much protein is not good for osteoporosis, and to stick to around 4 oz a day, which is about half of what I have. Not sure on this one.
Re the protein, I think it's the phosphorus level in animal products which may cause issues with OP. I suggest, if you haven't already done so, that you gradually introduce fermented foods to your diet. Calcium is more easily absorbed with yoghurt. A little fat is necessary, so whatever you can tolerate but not skim milk if you can manage a small % of milk fat. Other fermented foods include kefir, kombucha, some kids of cheese, lots of vegetables, of which sauerkraut is the best known. If you aren't used to fermented foods introduce them slowly and in very small quantities as the gut microbes need time to adapt.
Thanks Heron, I do eat tons of fresh vegetables every day, for some reason, my husband finds it relaxing to stand and chop them for half an hour! I have half a plateful at lunch and half a plateful at dinner, I eat cauly cheese and cheese on toast (small amount) and get away with that. I will try the sauerkraut.
Oooh, a partner who likes to prepare veggies! Lucky! Recently I've been able to buy bags of prepared veggie salad (different kinds of cabbage, kale, broccoli) and find this a big help as a base for a meal or substantial side dish.
He roughly says that provided your Ca intake is 800 mg or above, Ca will not be taken from your bones.
I read some time ago that the body only actually utilises around 400 mg of Ca a day, so provided you are getting 800 mg of Ca from diet, you will always have sufficient in circulation to act as a pH buffer. It’s only when the body is really deprived of Ca and under stress, that Ca would be taken from the bones.
Ca from diet is far better than from supplements as it’s being ingested more frequently throughout the day.
Regarding fat in diet. We need a certain amount to aid the absorption of the fat soluble vitamins eg D3 and K2. If I’m short of fat I sometimes have a large teaspoonfull of coconut oil to take with my K2 or D3. Can you tolerate this?
You can buy plastic jugs with the spout placed so that when your stock/fat mix has been allowed to settle and the fat come to the top, the lower lower fat free layer can be poured off. I don’t personally own one, but I’ve seen them in shops. With being plastic they are not expensive.
Make sure you don't take more than 400 mg calcium at a time. Better two small doses a day than one big one as the body can only absorb a certain amount at a time.
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