I need to know

Hello everyone, I'm hoping I could get some feedback on my delima. I just resently found out I have Osteoporosis. My RA doctor wants me to start on Fosamax. She says it's dangerous for me to not go on this drug because my bones are so bad they could break easily. I've heard horrible things about this drug & im terrified to take it, but scared not to. My questions are, does anyone know about this drug? Also have u heard of the author that wrote the book about healing Osteoporosis without the drugs? I can't think of the titles of her books. Her name is Dr Susan Brown. I'm thinking about not taking the drug & doing what Dr Susan Brown says to do. But I pray I'm doing the right thing for me. Can anyone let me know if you know anything about all of this. I can't sleep at night because I know in a few weeks I'll be going back to my RA doctor & she's going to want me to start on this scary drug Fosamax. I hope someone can help.

88 Replies

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  • I don't know anything specific, but I found what seems to be a well balanced article about it that might help you decide. Here

    health.harvard.edu/diseases...

    As for using an alternative approach do bear in mind a few things. First off natural herbs and supplements can have bad side effects and dangers just the same as drugs - some are very toxic taken the wrong way. Natural does not mean harmless.

    Also question what you read about successes of different approaches - are they independently verified? Based on robust research methods, or just a collection of personal anecdotes?

    And personally I steer clear of anybody or anything who wants money for a cure or treatment.

    Good luck

  • Thank you Helix, I'm going to look into that web u gave to me. I will research everything I can, but I will be careful. I'm so glad I can have you all here to help. Take care,Sunrise🌻

  • Take a look on the Bone health forum, it's very useful, one of the posters who has got good results from diet and exercise is heronNS, many on there are asking the same questions as you. I have had osteoporosis since 2002 and started on Fosemax without any side effect, was on it too long as you have to have a break from it. Tried Sronthium, gave me acute diarrhoea, Went on to Prolia injections every 6 months for 2 years no side effects. Nothing for 10 months, now taking Alendronate, Dexa results too low. Have been put forward for another treatment, called Forteos I think, this is a daily injection for 2 years. Mine has been caused by long term steroid use. I must also add I also have a very good diet, rich in foods for bone health. Good luck in which way you decide to go. X

  • Thank you Gig, I'm going to look into those sites u mentioned. That's great that u were able to take Flosamax without side effects. That gives me hope if I decide to go that way. Do u think the Fosamax has helped your bones? Also can u tell me what foods are good for bone health? I'd love to hear more. Thank you so much.Good luck with everything too. Sunrise🌻

  • Having RA for 32 years, I was treated aggressively with steroids, and given a Vit d/calcium drink which I wasn't very good at taking, as it wasn't pleasant to taste. So in some someways my fault, hind site is a good thing, but who knows. A Vit D and calcium supplement is very important. Foods I have, are dark green leafy veg, lots everyday, steamed. I eat simply cooked fish, chicken and some meat with herbs and spices, I include oily fish, tinned sardines, salmon as well as fresh every week. Nuts, my breakfast is mainly oat based with natural yogurt and berries. I make a lot of homemade soups and have salads, eggs, some cheese, I'm not too much of a fan of milk, I drink a lot of herbal teas, caffeine not so good for you, I do have a cappuccino now and then though. I use olive oil and coconut oil for cooking and sometimes butter, no processed foods. I did try when first Dx with diet alone, but it didn't work for me. I did improve on fosamax, I am a lot older now and the last Dexa scan was low, again I think as I still take 5mg pred everyday as part of my drug regime. I recommend you do some research first. I have just started a fall prevention class for exercise. Exercise is very important. Hope this helps a little. Still recommend you look or join the bone health forum, as we are all different. All the best. Hugs G X

  • Thank you Gig, your diet sounds so much like mine. Boy do I miss coffee. But on occasion I have one little one. But mostly green teas & herbals. I'm in a wheelchair due to RA so I have to find different types of exercises to do. I resently joined a gym, the YMCA. Thank you for sharing all of this with me. Yes I'm going to get on with the bone health forum too. I'm thinking about trying Fosamax but I get so scared of drugs. It gives me hope that it helped you. Bless you very much for helping me. Hope to talk with you again. Take care. Sunrise🌻

  • I have had triple foot fusions and also have a collapsed right ankle, so mobility is a problem not in a wheelchair as was told may years ago I would be, so proving them wrong at the moment. Osteoarthritis in my lower back last year set me back. I take the meds so long as they don't give me nausea or diarrhoea. Humira has been great for controlling my RA. Glad to hear you are doing some exercise and your diet is good. All the very best to you. Hugs G X

  • Thank you Gig, boy you have been through tough times too. Im so glad to hear your all better. Doesn't it feel good when u prove your doctors wrong to a bad diagnoses? I love that! As far as my exercise is going I need to do more. We're having so much rain out here it's hard to get to the gym. But I'm doing some things here at home. Thank you so much for your words. It's so nice to know we all have a place we can meet here & talk. Sunrise🌻

  • I'm sure if there was something that 'healed' osteoporosis the NHS would have investigated it & NICE would have given approval for it to be prescribed as needed.

    If your Rheumy is correct I'd listen to her & try the Fosamax!

    Do be careful....if you start breaking bones they will takes ages to heal& may not heal well.

    I broke my arm in early December- I don't have osteoporosis & although my arm is now out of plaster & just in a splint it is still really painful & so inconvenient I am in a permanently bad mood because I can't use it normally.

    You might tolerate the drug well & begin to protect your bones & stop the painful condition getting worse. Give it a try. You can always try some of the advice in the book you read...but belt & braces can't hurt!

  • Thank you AgedCrone, yes I've been thinking of that too. It's hard to know what to do. I guess I can always try forsamax & stop if it hurts me. I'm sorry u broke your arm. I know that is painful as I broke my hand & ankle back before I had Osteoporosis & it was very painful. I just hope that if I do take forsamax that it works. Yes I think a good diet is good to. Im just so terrified of drugs. Thank you again for your help.Sunrise🌻

  • I'm seeing beautiful sunrises as I'm on the island of Tenerife 70°F+ every day so far with gentle breezes wafting off the sea!

    Good luck with the Forsamax!

    AC

  • AgeCrone, what a beautiful place to be. That sounds very healing watching the sunrise. Have a wonderful day.🌻

  • So far the balcony door stuck open, the caretaker turned off the hot water & his answerphone message is inSpanish( Qué?), my favourite restaurant has closed down & two good friends here have thrown in the life in the sun & have gone back to live in UK!

    But hey the sun continues to shine & good wine is cheaP!

    Adiós..AC

  • Yes indeed AgedCrone! Bring on the wine! Darn, I'll have to make mine herbal iced tea as wine makes my joints swell right up. Always something to bother a women. Well, Have one for me too while your enjoying the sun.Sunrise🌻

  • Sounds soo nice, glad it's doing you good. You deserve hugs G X

  • Thank you Gig. Hugs to you too.❤️

  • I'm sure if there was something that 'healed' osteoporosis the NHS would have investigated it & NICE would have given approval for it to be prescribed as needed.

    Actually, nothing could be further from the truth. The Osteoporosis Society took NICE to the European Court because so many patients were denied effective treatment on cost grounds. You had to take rubbish like Alendrate and Fosamex before you could be prescribed anything that was any good but the ruling changed all that.

  • Wow! That's horrible. So how does anyone know how or what the good stuff is to take??

  • You'll need to look on the Osteoporosis Society website and find out the exact name of the drugs they fought for in the European Court. I'll see if I can find out tomorrow. You could possibly ask them. I have mentioned Tibolone as one possibility.

    Another reason not to take Bisphosphonates is that they remain in your body for ten years and if you ever need a dental implant or extensive dental surgery, it can't be done. Foxamax is an Alendrate and I certainly would not entertain it. It causes severe heartburn as well and just makes the bones stick internally.

    To be honest though, you can't pop a pill for every ill. Most of these drugs are not natural products and I am basically allergic to everything with a chemical or steroid. You are then having to take a pill to deal with the side effect or allergies.

    You can do an awful lot yourself with lifestyle changes. I used to walk ten miles a day for many years (as well as doing the gym and swimming for 30 years) and, according to the GP, that stopped me getting even worse osteoporosis than I had, possibly a broken back.

    Another benefit of exercise is that it improves your reaction time so that if you do trip up, you can break your fall and not break your bones. I am always falling over as my feet are unsteady and my ankles weak. (I have suffered GI symptoms in the past accompanied by dizziness, which made me walk from one side of the pavement to the other.) The gym exercises strengthen my ankles and if I don't do it for a while, I trip up even more. I have cut my knees and hands numerous times but I have never broken a bone and my level of osteoporosis was extremely severe. An MRI scan (which I paid for) showed a perfectly aligned lower back with well developed muscles but the bones showed osteoporosis. Had I not been exercising so much, there is no doubt that my spine would have collapsed.

    There is a news item at the moment saying that vitamin pills are a waste of money and I tend to agree. You really have to change your lifestyle. New bone can be laid down up to age 70.

    See my other post above in response to your original post.

    Best wishes.

  • Thank you Delicateinput, I'm going to look up that website. This Fosamax seems to be scary. I can see that exercise is very important along with diet. It sounds like u have done a lot of research. I hope I have enough time to get enough new bone laid down before I'm 70. I'm already 62. I am starting to think that maybe the drug companies don't want people to get better, because they won't keep making money on there drugs. I hope I'm wrong. But so far I only find a few people have been helped with Fosamax. So I'm left to wonder. You take care & thank you so much for your words. I'm gona try & find that list of drugs that went through the European court. Sunrise🌻

  • I was prescribed Fosamax (alendronate) but it didn't agree with me so risedronate was prescribed. I stopped that a couple of years ago, the intention being I would have yearly infusions instead but through one thing & another it's never happened. I've not pushed the point recently because my biennial DEXA scan was the same as my previous one. There are two things I can attribute this to, one being the daily ADCal-D3 I was prescribed & still take when I first started alendronate, the other is I eat butter, cheese & have semi-skimmed milk, the odd slurp of cream if a pudding demands it too!

    Sorry if this isn't of much help but it's my experience. I'm not sure why you'd think would it would hurt you though. In your position & your Rheumy's recommended it because of the reasons you say I'd go ahead with the Fosamax, if it doesn't suit you there's always the option of trying another or having infusions. I'm of the same opinion as Agedcrone, if something other than the prescription meds specifically intended for osteoporosis worked helped the NHS wouldn't entertain prescribing it, or any of the other bisphosphonates, fragile bones aren't something you want believe me, particularly as we age. If your Rheumy's so concerned I'd talk it through with her, she's not telling you stories, if your osteoporosis is bad then you really should raise your fears of the med with her, she should be able to help you.

  • Thank you nomoreheels, your right I know. I just have to talk to my RA doctor. It's hard to think that my bones are that bad. But the test showed that they are. Someone said that even though u have a low reading u still may have strong bones. I'm praying for us all! Take care. Hope to talk again.sunrise🌻

  • I know, & it's scary. Mine aren't as bad as yours but still I did my research before starting alendronate (as I do with any med), weighed up the pro's & con's & decided to take it. But you've to be happy to take it otherwise you'll dread that time each week you do & that's a hard one, particularly if it proves it's working. So yes, please do talk to her & take her advice on board, positive & negative. Ask about other options, natural, diet etc too then you've all the info you need & you're in a better position to decide. Has she not suggested starting a calcium/vit D supplement as well? If not there is a brand called Fosavance, I don't know if it's available over there? It's alendronic acid combined with a supplement of a vitamin called colecalciferol (also known as vitamin D3) which helps your bones absorb calcium. This is from Patient UK

    "Because our bodies naturally make colecalciferol from exposure to sunlight & absorb small amounts from foods such as oily fish, many people do not need supplements of this vitamin. However, as we get older, the amount of colecalciferol we absorb naturally may reduce. This brand of tablet is suitable for people requiring supplements of colecalciferol alongside alendronic acid."

    It's another option if she doesn't suggest a calcium/Vit D supplement. Let us know how you get on & what you decide.

  • Thank you nomoreheels. Right when I found out I had Osteoporosis I ran to my health doctor & he put me on a suppliment by Allergy Research Group. It's called Osteoporosis-Vi-Min. Plus I've been on 10 thousand of vit D-3. Because I'm on ibuprofen I've had to take a stomach pill to help protect my stomach. Unfortunately because it lowers my stomach acid that I need to help my body absorb the D-3 , my count is low. 28. Thank u for the info. In going to look into all of that. I think I go see my RA doctor in April & im going to talk about a lot of things with her. I'll keep you posted. Blessings to you. Sunrise🌻

  • Sounds like you & I have the Waterfront covered with all the meds we've taken!!!

    I'm awating Dexa scan results .....over enthusiasm by my Rheumy I think after the broken arm. I just hope I don't need to add anything,else to the pharmacopoeia I have thrown down my throat over the years!

    I'm sure all the sunlight I will be absorbing these next few weeks will do me more good than another pill!

    AC

  • And some eh Kathy?! Maybe your Rheumy's just being prudent ordering a DEXA scan? Anyway, hopefully all will be well.

    Sounds as though things may be on the change in Tenerife. Nothing ever stays the same unfortunately. We've had favourite restaurants, been there years then there's a retirement or some such. One in particular springs to mind, when my h was in hospital with pancreatitis. We'd been going to it many years but one Christmas break holiday my h was taken ill with pancreatitis. Consuela, the mum of the family asked where my h was so we explained why our holiday was to be extended. Without a thought she told us not to worry, just come for dinner, no charge, bless her. They had a limited menu but those who have are often the best we've found, they did the best leg of lamb & crema Catalana, not matched anywhere since.

    Enjoy the sunshine, it will definitely help that's for sure. It's getting warmer on the mainland, h goes over on business on Sunday so he's been keeping his eye on it. I've got my shopping list ready for him, he definitely needs a suitcase this time!

  • Yes AgedCrone, I sure hope you don't need anymore pills. May the sunshine overwhelm you with kindness. Your now on a pathway of healing. Sunrise🌻

  • Sorry, I don't know what I did but I think I wrote u back underneath nomoreheels. But it's there. I hope u can find it. I'm just not very savvy at this. Sunrise🌻

  • Hi, Do yo manage to get all this on the NHS? I've had two Dexa scans and it was the devil's own job trying to get my GP to order them. He got the shock of his life when the first came back, because it was so awful, and said "this does not mean you are going to die tomorrow". Hey ho, I was not expecting to die any time soon at all.

    I was recommended to have another one after a year or two and did at 18 months but the GP (a different one in the practice) was very irritated and reluctant to order it, saying if there was nobody in my family who had had osteoporosis then I was not entitled to it on the NHS, despite it being recommended by the radiologist reading the first scan. When the result came back, showing a 7% improvement whilst on Tibolone, they actually tried to stop the Tibolone. Their relief was measurable and I would be kidding myself if I thought it was any concern for my health.

    I was recommended another one after 3/4 years but I think I will have to pay for my own given their attitude. I still have osteoporosis but it is not as dreadful as at the first scan.

  • Yes, though it was my state-run healthcare Rheumatology Consultant in Spain who instigated them after my general RD blood screening showed a lower than normal calcium level. It was from those results that he ordered DEXA scans every other year. At my first Rheumy appointment in the UK I took along my medical file & translated anything my Rheumy needed to know & of course one was the paperwork & results of the DEXA scans I'd had. From that she determined she would also order them biennially. I just receive an appointment through the post & attend at the smaller hospital 5 mins from home.

    Unlike your experience with GP's mine has been excellent, I have a very good relationship with her. I'm sure had my Rheumy not chosen to continue with the DEXA scans my GP would have contacted her & recommended they were necessary & were reinstated. The reason being knowing the state of my bone density is required in part for the prescribing my Rheumy requested my GP does for osteo.

    I don't have family history of osteoporosis nor have I ever broken a bone. I have osteopenia-borderline-osteoporosis, fortunately my meds have kept me from going into the osteoporosis category, in fact my last DEXA scan showed a slight improvement in bone density. I've been on a low maintenance dose of deflazacort for 4 years.

    Maybe your struggle is down to funding? Though I believe if something's a necessary part of treatment then whatever or however scans should be utilised. This may be interesting to you, particularly the When a DEXA scan is recommended section nhs.uk/Conditions/DEXA-scan...

  • Thanks for the link - the NHS has updated it slightly. I have always been a high risk for osteoporosis according to NHS guidelines but my GP said that on account of having red hair and the pale skin that goes with it and the fact that I go to the gym and exercise so much, I was a low risk and for ten years refused. He just did not want to spend the money. Almost everyone I know in my area had a DEXA scan without fulfilling any NHS criteria for one and in every case theirs was normal, including at that surgery. Some of it seems to be quack GPs, I'm afraid.

    The last DEXA scan was 2011 and it is well overdue now but I know they won't do it. Meant to say in post you responded to that the GP said I was only entitled to it if I had osteoporosis in the family. I don't as all my family and relatives have good strong bones but I don't. I have always been light boned and my gyn. history is of an early menopause and years when periods stopped so I was a very high risk indeed. Added to that, I was always a low body weight. I paid for an MRI in 2012 and it showed the osteoporosis in my spine and it was dreadful yet it was an improvement on the first scan in about 2008. It was only because I have strong muscles on account of exercising that my spine did not collapse and this was noted on the MRI report.

    To be honest, I think the NHS belongs to another era. Standards in all these European countries seem to be so much higher. It is laughable to me that family history of osteoporosis is even a criteria for a DEXA scan as osteoporosis is always lifestyle-based and dependent on gyn history and both are entirely individual and nothing to do with family members.

    Many thanks.

  • Thank you Nomoreheels, I have health insurance through the state because of my disability. Thank God for that. It must be so hard for people that don't have that. If I didn't have that, I don't know what I'd do. Because I'm not really a richgirl. I don't know how often I should get the DEXA scans. So I'll look that up. So far I've only had the one DEXA scan but I think my Rhuemy will be on top of things. I've only had 2 visits with her so far. The first visit she took several different blood tests & ordered the scan. The second visit giving me the scan results. Now she wants me to get done with major dental surgery before giving me Fosamax. Your very fortunate that you are at the Osteopenia stage. That's wonderful. My Rheumy said my calcium levels were normal. I didn't understand how it could be since my Osteoporosis is so bad. But I'm just gona have to keep researching for sure. With all this research we should be qualified to be doctors by now. Ha ha. Thank you so much for your letter. I'm so grateful that we have this little gathering place where we can meet up with each other. Have a great day. Or evening depending in your time over there. Richgirl (Also known as Sunrise)🌻

  • She wants you to have your dental work done because Biphosphonates remain in the body for 10 years and you cannot have dental work like implants done in that time. The simple solution is not to take them. There are newer albeit more expensive bone products if you cannot take Tibolone.

  • Oh. So do y know what Osteoporosis medications are the safest ones?

  • It seems to depend on your medical history. I'll see if I can find out from the Osteoporosis Society and let you know.

  • Wow. I guess I don't know how dangerous mine might be. My numbers were showing it is severe Osteoporosis. But I didn't know u can die of it. I guess that's if u brake certain bones? That's so unfair how they treat u & refuse the things u need. I hope u don't have to pay for your treatments. Where's the humanity in this. The human compation. I guess it's all in there wallets. I wish you all the best! 🌻

  • No, I don't think you normally die of it. However, when it is severe, the back arches and it compresses the chest and affects the breathing. Eventually, the spine might snap. You see very old ladies walking around who have had this happen to them. Sometimes it happens and heals itself and in the past they have not known what has caused it.

  • Wow that's scary.

  • It's sad here...buildings abandoned for years.....still no sign of any work being done. Lots of expats worried over the outcome of Brexit...especially those on medication....if they lose the reciprocal health benefits it will be disastrous.

    Lots are trying to sell villas bought at the top of the market...but no buyers....lots wanting to return to UK...but cannot afford to move back....& certainly can't afford to buy in UK.

    I'm very glad I stayed in UK & just rent out here,

    Make sure H takes his brolly...my friends on the Costas say they have never been so cold or seen so much rain!

    AC

  • That's the thing, it's all so up in the air at the mo it's unsettling for everyone. Seems you were sensible deciding to rent. We decided not to sell up either, terrible the stories of those returning & just as you say unable to afford once the property market crashed because of discrepancy in what they bought for. That said it worked well for our business, the builders were desperate to sell or rent out rather than properties being repossessed by the banks! There's always someone who profits from a bad situation & we were on the right ship.

    Fortunately the weather's on the turn, he's been watching it & his business partner confirmed it this morning when he Whatsap'd him, the forecast is 22° the day he arrives & supposed to be fine the rest of the week, if you can rely that well on long term weather forecasts! He was due to go out around the time they had snow but some documentation hadn't been prepared so it was delayed til next week. Some friends from Valencia were over just before Christmas & they'd had really stormy weather, similar to what's normal in October but they said it was a trade off because October was nice. You can't win!

  • I was in Calahonda this time last year & it was freezing cold a lot of the time!

    I wanted to go to Granada & to the Alhambra Palace..but it was snowing there!

    Decided this year the Canaries would be a better bet & it has proved right so far...73+ every day ...trouble is I get settled on the balcony with my trusty Kindle & that's the day gone!

    The weather has certainly changed all over hasn't it?

  • Well of course they do ski in the Sierra Nevada & that's only 30kms or so away.

    If you do ever decide to go to the Alhambra let me know, I've lots of tips. Best times to go are Springtime or Autumn, avoid high season, especially August when it's silly hot.

    So it's about the same temp as on the mainland at the mo, that's unusual, but yes, the weather's a bit topsy turvy everywhere. I can think of worse things to be doing than relaxing in the warm on a balcony, like shopping in the fine drizzle we've got today!

  • I never go anywhere hot in & July/August...I think unless you are restricted to school holidays It's utter madness!

    I'll be in Italy until early July, then it's the back garden for me ...no doubt with a blanket & woolly socks!

  • Hello AgedCrone, u lead an exciting life traveling to beautiful places. How lovely. Have a great time!🌻

  • Yes I am very lucky....from my long term job in travel I have friends all over...but these days I usually stick to Europe....sitting in a plane for too many hours holds no magic any more.

  • Yes I can see how the plane rides would feel like that. But wow!! How Exciting. My last vacation was almost 20 years with my mom. We went to the New England states over by Vermont & Michigan. It was a wonderful trip all because I was with my mom & we went in October when the trees were just breath taking with colors. I'll never forget that trip. I even took a lot of the different leaves home with me & pressed them into books. To this day the colors have only faded a bit.🌻

  • The short answer to your question as to whether to take Fosamex is resoundingly no!!

    Have a look on the Osteoporosis Society's website for more information. The Society took NICE to the European Court a few years ago because it would only prescribe this type of drug as a first line treament - and won! It is cheap, nasty and does not work. It makes the inside of the bones stick together but it does nothing to help your bones.

    You do not give your age. If you are past the menopause, you could take Tibolone which is a form of HRT that works on the bones but not the female organs so there is no cancer risk. I have been taking it for 8 years. After the first 18 months on it, I had a 7% increase in bone density. I am well due another scan but can't get one at my surgery. Even though it was recommended by the consultant that I continue with Tibolone, they tried to stop it on cost grounds. It has no side effects.

    You can take Vit D and calcium, with a Vit C rich food like fresh orange juice and calcium rich food like cheese or milk, but I think it is best to get Vit D from sunshine which is excellent for the bones and arthritis as well. I took Vit D with the foods mentioned for years, but it made very little difference: it brought me up from deficient to barely sufficient.

    Exercise is the best possible thing for osteoporosis and this is not just weight bearing exercise like doing weights at the gym and walking, but swimming which strengthens the muscles especially in the back. Nature sometimes compensates for poor bones by developing the muscles and the muscles can cramp around the joints to hold them in place. Muscles generally hold the bones and joints in place so swimming is a brilliant exercise for arthritis but particularly RA - it reduces inflammation as well.

    I had endometriosis for 20 years and many women with this condition develop osteoporosis. The reasons are two fold: (a) some of the drugs in use to suppress endometriosis stop the periods; (b) endometriosis is self-destructive as once it reaches an advanced stage it stops the periods and then starts up again. Mine stopped for three years aged 28/31. Also, I had an early menopause as many women with endometriosis do and never had a pregnancy which is good for the bones. Endometriosis needs to be caught early and is extremely simple to treat effectively but the dear old NHS is not equipped for speed. I paid for two private operations but the ultimate remedy was a double dose of a high hormone pill for nine months with a three month break and then taken for another six months. If the NHS got its act together in osteoporosis, endometriosis and RA, it would save tens of billions per year but they seem to have no interest in efficiency - and speed is a foreign word.

    I am also very light boned (heavy muscles) and had always had a low body weight of between 7 and 8 stone, usually at the lower end, which are high risk factors.

    In all honesty, my personal experiences of the NHS makes me think they are total crap. Everything they have touched in my case, they have made a monumental mess of. I was a very high risk for osteoporosis and my osteopath said if I did not have it, she would eat her hat. The GP told me I could not have it because I had red hair!!! A scan after asking for ten years revealed dreadful osteoporosis. Prescribing Tibolone is the only time I found the GP any use, more to save his own skin, I suspect! Of course, I could have paid for a scan but to be blunt I have paid for almost all my medical treatment and it has not been out of choice. I do not have a bottomless purse.

  • Oh my gosh. I had Endometriosis too. I'm sorry you have bad such a hard time. I'm wondering is "Tibolone" a hormone? Sunrise🌻

  • Just been reading the leaflet. It says: "There are 3 different types of HRT:-

    - oestrogen only

    - combined oestrogen and progestogen

    - Livial which contains Tibolone

    Livial is different from other HRT. Instead of actual hormones (such as oestrogen and progestogen) it contains tibolone. Your body breaks down tibolone to make hormones. Its effects and benefts are similar to combined HRT." Other ingredients are potato starch, lactose monohydrate, ascorbyl palmitate and magnesium stearate.

    Thus, Tibolone gets your body to make your own hormones to which you cannot be allergic. I was allergic to all HRT that I tried and aside from the natural patches they did not help but the patches reactivated endometriosis. There was a break of 20 years from the menopause until I started taking Tibolone so maybe by that time the endometriosis had gone. Also, the GP thought I was so long past the menopause and had been without hormones for so long that there was no possible risk. I am pretty fit without any cardiovascular issues.

    There are some contraindications. Reading the leaflet, you need to be pretty fit in terms of liver and cardio vascular health to go on it. Also, you should not have a history of oestrogen-dependent cancers, eg womb, breast.

    The leaflet says Tibolone has beneficial effects on the brain, bone and vagina. Well, contrary to my GP's assertions, I knew if helped the brain. It does seem to affect the breasts though so you cannot take it if there is any history of breast problems.

    Tibolone is a lot cheaper (£160 pa) than the better bone drugs for ostoporosis so you will not have difficulty getting it on cost grounds. The GPs at my surgery tells me how much it costs whenever I see them.

    Anyway, if you decide not to take Tibolone, definitely do not take Foxamax or any Alenodrate.

    Best of luck and I hope this helps.

  • Thank you Delicateinput, so if I understand this correctly the Livial is the safest one to take? But I did have breast cancer in 2007. Had double mastectomy. It was her-2 positive. I don't think it was hormone related. My liver is very healthy. But as far as exercise goes, not so good. I'm very thin. 5"10 & 125 lbs. way under weight due to so many food allergies.

  • No. it says on the leaflet at point 2.2 Some women should not take Livial

    - If you have or have ever had breast cancer, or if you are suspected of having it

    - if you have cancer which is sensitive to oestrogens, such as cancer of the womb lining, or if you suspected of having it

    Livial/Tibolone is the safest if you have no contraindications to its general effects on the body, eg heart and female organs.

    I think you need to see someone to find out about the more expensive and newer preparations. Some of the cheap products that the NHS used to insist you tried just does not seem to work, Alandrate/Fosamax. It makes the bones denser by making them stick together but it does not stop them breaking. I used to get regular bulletins from an American Osteoporosis Society but they were so time-consuming that I stopped them. They contain a lot of useful information.

    I was never a risk for cancer - none in any near or far relative. Neither was I a risk for stroke/heart disease/thrombosis, which are all risks of HRT, the pill etc as I always had low blood pressure though it has gone up.

    I am surprised you have osteoporosis as most people who get it are short in height and a small frame, ie osteoporosis as opposed to osteopenia. Sometimes if you have a bit of fat, it makes oestrogen which helps the bones. On the other hand, your fragile bones do not have to carry the extra weight.

  • Delicateinput, Ya darned if we do, darned if we don't. Thank you. I'm going to get things going on the website so when I see my RA doc in April I will know what questions to ask. Things are starting to become clearer to me. It's a tough road we're on.

  • Hello can't read well on Kindle (or type well) so apologies if I'm duplicating something that's been said already. But I found the National Osteoporosis Society Helpline brilliant when I had to make a similar decision. It's free to call and you can find the number on their website. The helpline is staffed by specialist osteoporosis nurses and the lady I spoke to was very knowledgeable. Also do you know if your hospital has an osteoporosis specialist or specialist osteoporosis nurse? I ask because in my experience the rheumatologists are not always the "experts" when it comes to osteoporosis. When my rheumatologist wanted me to start a similar drug based on my bone density scan results I asked if he could explain what the results meant to help me make a decision and he said he didn't understand the numbers and I should just take the drugs! But I asked to see the osteoporosis specialist and he was happy to refer me. Good luck - I know it's not an easy decision you are facing - and it's worth remembering that it's not a decision that has to be rushed. I suspect a while longer to give you time to find out more and before you come to a decision will make little difference to the outcome and hopefully help you to feel comfortable that you are making the right decision for you. Best wishes Tillyx

  • Thank you so much Tillytop, I'm going to call that hotline. I also didn't think about asking my RA doctor to talk with a Osteoporosis specialist. I just thought it was part of her expertease. I don't know if we have a specialist here or not. I'm going to look into all of this. I've been taking notes down from everyone's input & I can't thank you enough. I'm so thankful that I have a lot to work with now. Before I asked for help on this site, I had no idea as to where to search or what to search. Thank you & everyone so much for all your information. Also your typing is done very well. Take care. Keep in touch. Sunrise🌻

  • Thanks Sunrise and you are most welcome. The hospital I go to just happens to be an orthopaedic hospital, so it may be that not all hospitals have "separate" osteoporosis specialists. Although the osteoporosis specialist I saw is a rheumatologist, he isn't one of the consultants who sees people in the day to day RA clinics if that makes sense. Really good luck! Kind wishes, Tillyx

  • Thank you Tillytop.🌻

  • I didn't even know there was such a thing as an osteoporosis specialist. Your rheumatologist sounds sadly lacking. Even I can read the Dexa scan and interpret the numbers. Also, I would have thought osteoporosis came under the remit of a rheumatologist as do the 200+ types of arthritis, or does a rheumatologist only deal with inflammatory arthritis. I have only ever seen a GP about osteoporosis and my bone density was extremely low, lol.

  • Yes I too was surprised to hear about a Osteoporosis specialist. I'm going to look into that for sure.

  • Was put on Fosamax a few years ago when I was told I had severe Osteopenia, and I personally made sure I got the Calcium in. A few years later the osteopenia is gone, I have had 10 stress fractures in my spine, but normal bone density. :ave had 2 years of an intravenous infusion lasting 15 mins something like Bisphosphonate but not sure and since fracturing my Humerus in May last year am on Teriparatide (a growth hormone) for 26 months. I would say listen to Drs hear what they have to say, and question them to listen to your concerns. My endocrinologist who deals with my osteoporosis has no idea why bones are fracturing when bone density is normal. I have a very good idea in my mind, using the burger bun as an example. Here goes. If they were to dexascan a burger bun they would see it full of air holes and diagnose osteoporosis. However if you were to compress the bun as if you were going to stuff it in your mouth, then dexascan it it wiuld be thick and dense and no osteoporosis. As I have compression fractures I think I now have the ready to chew burger bun as my bones. They have compressed therefore dexascan says no osteoporosis! Can understand the pain people are talking about - Chronic!

  • Hello Peecue, I'm so sorry to hear u have had those problems. How devastated u must be. That's odd how it didn't show up on your scan that u may have had worst bones then it showed. Unless... Did those fractures & problems all come after u had taken Fosamax & the other treatments for the Osteopenia?

  • Yes, but this is exactly why Biphosphates don't work. It makes the bones stick together but it does not stop them breaking. When I saw my bones (lower back) on an MRI scan there were big holes in them. It is a fat lot of good compressing them so that they stick together. What you need is to build new bone and that makes the bones denser.

  • Is there much I can do on my own to build new bone?

  • Any relatives have similar issues, Any teeth problems like accelerated decay? There are genetic conditions like osteogenesis I'm perfecta that often evade detection, only a genetic test like 23&me would tell you for sure.

  • My mother had a little Osteoporosis on her upper back. I've had horrible teeth & have been taking care of them now. Are u saying that it's possible to get Osteoporosis because of bad teeth? I wish that would mean now that I've taken care of my teeth that my Osteoporosis would go away. But I don't think that's what your saying. For many years I had no insurance. Now that I have it, I'm trying to take care of everything.

  • No, if you had a collagen disorder or you made soft teeth this might be indicative of bones.

    How long have you been in the w/c. That might have a lot to do with it, bones need weight. Astronauts lose 3% a year in the space station

  • Hi Jjnz, I've been in the wheelchair for way over a year now. If I were to stand up, 2 people would need to pull me to my feet & hold on to me the whole time That I stand. Plus my weight would pretty much be on my "better knee" because the other leg won't straighten up anymore. Then I have the fear that if they dropped me I might break something. So I'm not sure what I could do there. I do have a rebounder & while in my chair or bed, I sit up & bounce my feet anyway that I can on the rebounder. I hope that helps me in some way. Thank you for your replies.🌻

  • I'm probably not much help here - Actually I am allergic to that medication. I kept taking it and by the third month I couldn't get out of bed for the day.

  • Hello CaerylUSA, Wow that's awful. Yeah that's why We all have to be so careful about these drugs. Thank goodness your ok now. What medication have. Even working for you? When u say u couldn't move was it because of pain or being paralyzed? Thank you for writing to me.🌻

  • No - just the pain, the dizziness and vomiting... Felt like a massive case of the flu. I haven't tried anything else other than the yogurt I am making every other day called GC-Maf. I take it with D3 and K2, and the last scan I had was good. Just be kind of careful with it. On the other hand, my mother in law took it for years and it seemed to do okay with her. Just depends on what your body will tolerate =).. Take care

  • Oh. That's great that your scan showed improvement. How long did it take to show that your bones were getting better? Also how much K2 do u take? Also how do u fix the yogurt? Sorry about all the questions?🌻

  • Dang - I had my comment almost ready and I screwed it up by moving to another site..., Sheesh.. So, to answer your questions: 1) about a year to show that much improvement, 2) 120 mcg of K2, (along with the D3 - I take 30,000 and my hubby takes 20,000 because we are so low) and the yogurt - here is a link that I started with:

    marsvenus.com/p/gcmaf-bravo...

    I make the mother culture about once a month and then make a second generation every two - three days. Please note that I am not part of anything I am recommending - It is just what I have found in months of research. Please do your own research. There are other options other than the Bravo - they are really expensive. If you want the other information, just PM me and I'll be glad to provide it...

  • If I could count the times I've lost the blogs that were almost ready to send! Anyway No worries, I'm just collecting all the positive info that I can so I'll have a lot to work with & to research. I research everything too. Yes I can use all the info u can give me. I sure appreciate you & everyone. It's so very helpful & kind that u take time out of your day to help others. Thank u so much.🌻

  • Here's what I did.

    Google osteogenic loading and make your own machine (you basically need a pressure scale and a hallway) you'll need to read a lot to make sure you do this safely.

    Google Wolfe's law and osteogenic loading, look at the patents by John jaquesh?. He even has a book on amazon. He makes his own brand of loading machines worth ten's of thousands of dollars but his science holds up, it's actually Wolfe's science but anyhow.... , bones are like muscles, I could take creatine, protein and spend hundreds on supplements, but unless I challenge the muscle it simply won't grow. Wolfe's law tells us the same about bones. YouTube has 2 or three video about osteogenic loading.

    It's actually a very simple thing to make and do, 5 mins/week. The trick is to compress bones (2-3x own body weight-gradually) without moving your joints and to do so in a manner that let's you back out instantly. Weight lifting for example does not allow this because your moving your joints through an arc and you can't just stop, you have weight to deal with.

    But by pushing non movable things (like a solid frame, or a wall in your house) you can create safe compression forces through bone that you can stop instantly.

    Again, you'll need to do a lot of reading before you do this, I have tonnes of links but I can't post them.

    As far as supplements go, take 1200mg of calcium, some vit d, some k2-mk4 or mk7 (dubious about this but it probably won't hurt) 3mg of boron and most importantly 100g (10) prunes per day, seriously, google pubmed prunes osteoporosis. Prunes increase osteoblastic and decrease osteoclastic activity quite a bit. No single drug does this and certainly not without sidefx.

    Hope this helps.

  • Thank u, this helps a lot. I'll look into that. I'm in a wheelchair but it seems like I could do that while sitting. It's very Interesting. I think I understand. How has it worked with u so far in the healing? Osteogenic Loading.🌻

  • I get my second scan in 4 months, but my lower back pain has gone, it's working for others, gains seem dependant on age and how quickly you are loosing bone. Some are getting 10% in 18 months, for me it's something I'll do 1/week for the rest of my life. There are people talking in forums about it.

  • That's so wonderful that your back pain is gone. The Osteogenic Loading appears to be working for you. This is so wonderful. Keep me posted about how your scans turned out. Today I'll start more research. I'll be thinking of u & sending u good thoughts.🌻

  • Jjnz, as luck has it I have contacted a place near where I live called Osteostrong that does the Osteogenic Loading. I'm waiting for a call back from them. I also watched some videos of people using the machine. I think I could slide over onto the machine. It looks like I could do most of the exercises except for the one where u stand up. But anyway I just thought I'd let u know. They will be calling me later today. I sure hope this works out. Thank you so much for telling me about this.🌻

  • No probs, glad to help :)

    Ill let you know how my next scan goes

  • Hello Jjnz, Well I couldn't do the machine. I went & tried it. The only exercise I could do was for the chest & she said it wouldn't be enough to correct anything. So I'm back to square one. She said she was going to talk to her boss & he would contact the man who invented the machine to ask him if there's anything I can do at home to make my bones stronger. So I'm waiting for that call. Thank you for letting me know about it though. You never know, maybe something positive will come out of this. I hope your doing well.🌻

  • That's a shame, I'm sorry.

    Hopefully the jaquish guy gets back to you.

    I'm lying in bed with a broken ankle at the moment after twisting it on a set of stairs, doh!

    Don't give up or get down.

    One thing I am glad of is that I never touched those biphosphonates, I was told they were safe and to ignore the rumours about them making bones weaker, but did you see the news this week. Google biphosphonate And microcracks, I think this is the end for biphosphonates.

    clinicaloncology.com/Curren...

  • Jjnz, as soon as I got your note, I went to that web & read that. So Fosamax is biphosphonates & Micrcracks? I saved that site & Im going to my RA doctor the 1st of April. That's the date she wants to start me on Fosamax. I'm going to show her that study. How scary is that? I don't want to go on that either. I'm so glad U showed me that. Thank you so very much. Yes if I don't hear from Osteostrong in a week or so, I'm calling them back. Because I really need to figure out a way to get stronger. I'm sorry to hear that you broke your ankle. I'm sending u good thoughts of a fast recovery. I hope u feel better real soon.🌻

  • Morning RG. Can I give a word of caution when reading such a limited report of an interpretation of a trial, always search for & read the original scientific paper. It should always be included either at the bottom of the text or, as in this case, within the text itself, in this instance at the end of the first paragraph. In common with general news in newspapers articles in publications can have a swayed opinion so before taking a copy of this particular one & presenting it stating your case to your Rheumy you really need to have the facts. If this, the original, is baffling for you ncbi.nlm.nih.gov/pmc/articl... can I suggest you read this, reading both the Discussion & Conclusion sections carefully nature.com/articles/srep43399

    This was a small trial using a new state of the art x ray machine & whilst it's interesting information there are flaws which, to my mind, could give different results if, say, it had been known the length of time those in the study had been on bisphosphonates other than at least a year. Also it would seem from the results it's only a percentage who wouldn't benefit from taking bisphosphonates (note that's not included in the title!). Another thing to check is the references at the bottom of the report, there aren't any. Any scientific report of note should include at the bottom of the report references, from where the information was garnered. I do think it's valuable reading but it's not quite as clear cut as appears in the Oncology publication.

    I hope you don't mind me mentioning this, it's just it's best to be prepared with answers when questioning so hopefully being properly prepared your argument will be listened to, hope so anyway. 😉

  • Hello nomoreheels, thank you. You've brought up a very good point. I've never been very good at reading medical things & figuring out what the best thing should be that I do. I've always been scared to take medications too. So I'm not sure what I will do. When I asked my RA doctor if Fosamax had a lot of side effects, she said yes, it was full of side effects. So I'm glad she is honest with me. I'm just in a depression not knowing what to do. It's like darn if I do. Darn if I don't. But I will read those webs u gave to me. Thank again for taking the time to help. I love this forum. Hope your having a beautiful day.🌻

  • I know, they can be scratchy head-making! So, as I mentioned you can always search for another publication (PubMed is a reliable one, or one in a related specialist publication), they're more often than not easier to follow.

    I've not had too bad a day thanks for asking, hope did too.

  • Yes my day is pretty good. Glad yours is too. Thanks again for all your help🌻

  • I'm sorry I haven't heard about this drug, is the osteo one of the side effects of any drugs you were taking?

  • Hello, no Osteostrong is a exercise machine that can help people strengthen there bones. Especially for people with Osteoporosis. I hope all is well with you🌻

  • I'm sorry, I think I misunderstood you. This is what happens when I give up coffee. I'm not sure how I got Osteoporosis. Good question.🌻

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