Just discovered that my bone density is abnormal so need to take drugs to rebuild my bones. I’m terrified of the awful side effects mentioned in relation to this problem.
Can anyone give me the benefit of their research to find the best bet in this department?
Thank you in advance for any advice. X
Have they told you the results of your scan?
Only that it’s abnormal, no numbers but I plan to find out ASAP. THANKS X
Good idea. You may find it is only osteopenia. My GP has been pushing Alendronic Acid on me for about 4 years and we have a fight every time I talk to him!
I take Alendronic (sp?) Acid and have done for several years and still ache like 🤪 crazy
Sorry to hear that David, maybe time for something different? X
There is supposedly a limit of 5 years on Alendronic Acid although some doctors are suggesting a shorter time.
Hi all.. I think I have some good news. Surgery pharmacist phoned me today to try persuading me to take the bone medication. AA or similar. She had no knowledge of the drugs mentioned by kind advice on this forum so I asked her to find my scan results, although she didn’t understand them herself I persuaded her to read them to me. It turns out none of the numbers were under -1.5 and quite a few in the plus brackets..I’m no expert, only learning about these things but I believe this would put me in the osteopenia region. Please correct me if I’m wrong.This being the case am I right in thinking that the drugs suggested are rather overkill?
I’m thinking of trying the natural approach, at least to begin with. Xx
Did you get a copy of the information? It sounds like it possibly may not be as bad as you thought. Some people on this board have managed to improve their readings by weight exercises.
Yes Piglette I was rather relieved by the information and plan to get a printout when I see tha doctor next week. I’m trying to keep moving more , taking a walk each day and go a bit further each time. Completely changed my diet and am rattling with supplements.Thanks for you encouragement. Xx
Please read my story. It will give you some ideas about how to start to preserve (and improve) your bone density without drugs.
HeronNS really knows about fighting osteoporosis without medication. I should be careful of the supplements as around 96% of those bought are not needed. Some are, but be careful not to waste your money.
Hi Piglette… thanks for your massage.I’ve read HeronNS and think I must be on the right track, already taking supplements recommended.
I took my first and last AA tablet last Sunday and started side effects within hours of taking it, still suffering severe pain in my shoulder blades, even Dyhidracodeine won’t shift it, am walking around with heat packs stuffed in my clothing.
So it seems that type of drug is out for me. Xx
Hi. I can’t give any medical advice but I have problems with osteoporosis and osteopenia and have had Zolondronic acid infusions with no problem. I had to discontinue taking bisphosphonates orally because they damaged my oesophagus. Sometimes the possible side effects do sound scary but even paracetamol has side effects! Best wishes
Like Ana-16 I had a Zolendronic acid infusion last November after refusing it the year before because I had read of the side effects. Long story short I developed Osteoporosis due to Pred and had 3 spinal fractures so reluctantly went ahead with the infusion. Absolutely no problem with it, the day after I experienced some acid reflux and a slight temperature, that's all. I have been told that its already working but full benefit is after 6 months. The infusions were given annually for 3 years but following trials and investigations its now given every 18 months that gives full benefit with less side effects. Hope that's helped you with your decision.
Thank you all so much, I’m going to research zolendronic acid.I’m new to this forum so hope I’m doing it right. X
Should have said that the Specialist Nurses at the Royal Osteoporosis Society have a free helpline and will gladly talk over anything with you, might we worth a call. Good Luck
I was very interested in your inquiry, because I'm in a similar situation. Only my rheumie is trying to talk me into the Prolia infusions. I'm in the US, so things might be a bit different from the UK, but I'm told that once you get on the infusions, you are on them for life! There's no getting off. And if for some reason you MUST get off, then you would have to immediately begin using one of the other oral meds that are out there. I'm told that's because once you stop the infusions, your bones immediately start crumbling. My problem is I have been on Evista, Actonel, and Fosamax for lengthy periods of time. They do have permanent side affects in some cases, and my various doctors let me got on them way too long. I eventually took myself off the Fosamax on my own and am now only using calcium and D3. I have DEXA scans every two years, and seem to be doing fine, and in some areas, I am improving slightly. However, I am still considered very high risk for a major fracture (not sure why). So anyway, I'm reading everything I can about the Prolia, but I certainly understand your reluctance. Will be watching to see what your decision turns out to be. And best of luck to you from NorCal.
I have osteoporosis but refused to take any of the pills mentioned above as prescribed by my GP. However My mother who is 97 had been taking them for years but switched to Prolio and little did she know that it causes the loss of jaw bones hence she now has no teeth and can only eat liquidised food. Exercise such as pilates, osteo blast and a good diet can rebuild the bones and increase density.
Oh, your poor mother! My mother lost all of her teeth in her 70's and lived to 83, but same thing. All of her food was mush, and eventually a stomach tube. This osteoporosis thing is a challenge! And if the doctors aren't willing to have an honest discussion with you, it's even worse. I'm seeing a new rheumy next week. I sure hope she's different from the one I've been seeing! Take care of yourself!
It does not "cause the loss of jaw bones" any more than bisphosphonates-type drugs of any sort - that is a very sweeping and inaccurate statement. It is a VERY rare occurence and could as well be due to the previous medications she had been on.
There does come a point where diet and exercise cannot achieve enough reversal of bone density - and then even I say bisphosphonates or Prolia/denosumab my be justified.
Interesting - haven't seen that.
Apparently the trials were started in Scotland, not every hospital has implemented it yet but mine has and their Specialist Nurses help and work with the ROS as its local. (Their Physios are the ones on the exercise videos as well I believe) Got to be a good thing, cheaper for NHS, better for patients and 3 infusions cover 4.5 years instead of 3.
Definitely! Where are you?
I live in Somerset and treated by RUH Bath in a new rheumatology building built to replace Bath Mineral Hospital. Honestly cannot praise them enough I feel so well taken care of by the whole team. Treated very kindly and not waited for anything I needed.
They do have a good name.
That sounds an excellent response to patient fears, with a real nurse too.
I was put on prolia. I know it has a bad press but the director of the bone clinic here has had very good experience treating patients with it. I have had 5 injections (one every six months) and I haven't had any side effects. I eat a calcium rich diet and take vitamin D3 and K2 supplements and increase my boron intake with a few prunes a day. Just another option...much more scary than the treatment is osteoporosis!! Good luck with whatever you choose to do ...but don't forget to optimize your diet
Thanks so much for your advice, I have already optimised my diet to within an inch of its life ,and laid in every supplement recommended in an effort to do as much as possible naturally. I will take a prescribed drug, just not sure which yet. I’m amazed by the kind response to my question on this forum and already feel supported here. Xxx
You may have good results while you are taking it. The point to beware is if "they" decide you don't need it any more. Rebound osteoporosis can be worse than the original condition it treats. So must be replaced with another bone medication. I am sure you are aware of this, just pointing out the issue for those reading the thread.
It is a very important point. My consultant made it clear it is not something they intend to stop. If it saves my bones as I get even older it seems a good deal...I don't take any other medication (except my pred of course). But you are absolutely right people taking this have to realise exactly what they are committing to. I live alone and the prospect of a broken bone is one of my dreads. ...there are a few others but no point dwelling on them! On we go!
Exactly. I think the main issue with Prolia was in the beginning people didn't know about the problems with dicontinuing it, and even today patients (and doctors) are not always properly informed. When it works it apparently works very well. Best wishes.
Hi there . I refused all bone meds initially because I was terrified of the side effects .
After mri scan followed later by a dexa scan with a score of minus 3.8 I knew I needed to consider something at the time I had 4 fractures , I now have 5 .
So I tried teriparatide ( injection daily ) . My reasoning rightly or wrongly was that I needed to be in control so felt if it was daily any problems I could just stop .
It turns out I did have problems with it so I spoke to my osteoporosis nurse as no way was I carrying on with it .
So after some discussion and argument I decided on risedronate a pill once a week .
Fingers crossed so far so good I have been on it since December. I follow the instructions to the letter ( gagging for my cup of coffee for 30 minutes lol )
Unfortunately there is no one size fits all with this .
Everyone reacts differently.
Until my bones are stronger I cannot have any physio so I had to have something .
The royal
Osteoporosis site is very informative.check out all the different options . Hopefully you will find one that’s right for you .
Hope this helps 😊
I was put on weekly Alendronic acid in September 2021 when I went on pred as I already had osteopenia. I haven't had any issues with it at all, but I do take care to follow the instructions exactly.
I have osteospirosis and fractures of T6 and T7. I have a yearly infusion of Zolendronate with no problems. Told that the steroids had caused it. Other things can. Iate puberty, early menopause and lack of weight haven't helped me. Spent most of my life heaving bags of animal feed etc so was weight bearing all of the time. To be honest I don't think about it but do ask for help when I need it with heavier tasks..
Good luck with getting sorted.
Hello. I took alendronate tablets for a few years but I am now under the hospital and I have given myself a daily injection since last September this will hopefully build my bones up. I have to have a blood test tomorrow to see if my bones have improved and another scan at the end of my treatment, the treatment is for 2 years. I am in the u k
I too was frightened of side effects but decided to go with the recommended Zoldronic Infusion, feeling the hospital knew best. Absolutely no side effects, it was just after lockdown and the nurse came to my house to do it, so the risk of Covid visiting hospital was reduced. Fantastic NHS care.I got lots of advice from The Osteoporosis Society too.
The trouble is people are quick to post side effects and scary stories but less so on positive outcomes. It scared me so much reading things on here that I actually stopped visiting for a longtime. 🙁 I’ve only recently ventured back and I want to offer you some positives 🙂
My advice is to visit your dentist before going on bone meds as any invasive treatment, such as extraction, while on them carries a risk of problems but my dentist went through everything with me and reassured me that there were lots of other options to extraction IF I did have problems.
Try not to Google stuff and if you do only visit reputable sites.
Good luck.
Many thanks for your advice. I’ve had a lifetime of oral problems so need to take your warnings very seriously. Xx
Last year my daughter, who is in her early 50s, broke her ankle. She subsequently underwent a DEXA scan which showed she had osteopenia and osteoporosis (just) in her spine. The fracture clinic and her GP advised Alendronic Acid and she decided to go for it. She takes it every Saturday morning and follows the instructions to the letter and so far (fingers firmly crossed) has had no problems. She has also increased her walking and exercises recommended by her physio.
As you read about the side effects of the drugs you need to also think about the side effects of osteoporosis. I've broken 10 bones (7 in my back alone) because of osteoporosis. I tried Alendronic acid and it made me very sick with flu like symptoms. This is a common side effect lasted about 3 days. I now use Denosumab injections every 6 months. Since beginning treatment 2 years ago I've only had 1 fracture and that was early on in the treatment.
Thank you Amkoffee… you are right all angles need weighing up . I am adding your injections to my possibles list. Xx
I have also had no problems with Denosumab
The worst problems may arise when you STOP it as there is a rebound effect. While using it it seems to have few problems.
Sorry to hear about your bone issue. I know it is very scary to think about taking some of these drugs. I can only tell you what I take. You need to do your research and find the best remedy for your problem. I take AlgaeCalPlus and Strontium for my bones and I take a collagen supplement 2-3 times a day. I have read there is more collagen in your bones than calcium.AlgaeCal has a very informative site and you can read all about their product.
I went from osteoporosis to osteopenia in about 10 months. My dexa scan improved wonderfully. I can't wait for my next dexa to see if it continues to improve.
I have a history of broken bones and ligament problems so making this decision was very hard for me but so glad I went with the supplement instead of the bone med. But that is me and everyone is different.
Good Luck
Seeing a doctor next week and expect to be thoroughly educated in all matters relating to bones ,thanks to you kind people. Xx
Be careful if you take Prolia. After 5 years my femur broke and now I have a rod in my femur from top to bottom. "Unusual thigh fractures may occur". Dr. said it was caused by Prolia.
Consider just how bad your bones are before making drug decisions. Research what your scores are and what risk that puts you in. Osteopenia usually does not warrant the heavy duty drugs but many Drs. will go ahead and prescribe them. I did Forteo injections for 2 years, which didnt help my bones. Did Reclast (zolendroic acid IV infusion) last summer. I seem to be doing better walking (osteop. causing major foot issues) since the reclast. Have not had another DEXA yet but definitely pleased with my improvement since the Reclast. No side effects and sure beats taking pills. Next i may try Evenity injections which is supposed to grow new bone. Then back on Reclast after that. My Dr. is an osteo expert so I am going with his guidance. Personally i have found that most endocrinologists who treat osteop are not really in-depth experts in osteop, and just prescribe the standard old treatments (fosamax, etc.) as a "one size fits all" for patients. I researched and read various doctors' credentials before choosing the one I am hoping has the most expertise.
Thank you, I’m learning such a lot from you kind people and gaining confidence because of it. Xx
Evenity is one of those drugs which comes with a black box warning, so be very careful. It is relatively new so all the worms won't have crawled out of the woodwork yet. Brought to us by the folk who brought us Prolia.
Hi have been on A A 4 years no problem iam just now taking it sometimes but all good .x
I had 3 zolendronic infusions was bit out of sorts with 3rd one,i take fultium d3 every day.good luck.xx
When I first started taking steroids due to GCA I was put on aledronic acid but after 2 years I stopped because of feeling grotty every time I took it, also researched into side effects of it & just didn’t like what I read about bisphospates. But after my second DEXA scan, which showed a spinal fracture & a very high risk of hip fracture I was very strongly persuaded by the consultant at the Osteoporosis Clinic at the hospital in Bristol to have a zoledronic infusion which is given annually for a max of 3 years. I was dreading it but it only took under an hour & I had no side effects at all. I would request a referral to your local osteoporosis clinic for advice.
Thank you so much, xx
My wife has Osteoporosis as did her mother and grandmother. My wife went on a drug that is shot in the arm every six months. Originally, when it was new, they thought it would be 5 years. She's been on it for about 8 years. Her bone specialist says it has been a miracle drug and that my wife is the poster child. He has been surprised that it has worked amazingly and she has never had any side effects at all. Not even a sore arm from the shot. The reason she is still on it this long is that her one hip can still use some rebuilding. We live in Canada and the drug is called Prolia here. She also takes 5000u of vitamin D each day as do I (I'm allergic to the sun)
The current advice is that Prolia/denosumab should be continued indefinitely or the patient switched to oral bisphosphonates because there is a rebound loss of bone density, especially in the spine, in the first months after discontinuing Prolia which can result in spinal fractures.
A lot of great info in all the posts for you. I won't go into my lengthy story but just want to emphasize that if you choose medication for OP, absolutely consider your dental/oral health and have all dental work done prior to starting medication. Good luck with this crazy journey with us.
😘
Good point which I am already wary of , thank you. X
I've been on pred for 10 years. Now on 4mg, but have been on 30mg twice. I take HRT. Last scan was -8. Never broken a bone in my life even though, when PMR flared twice, I fell down the stairs twice on each occassion. Covered in bruises, but bones fine. Pats.
I have thought about HRT, I used to take it years ago and always felt great on it. Dr took me off it when I was 60 so 20 years ago now. I plan to mention it to doctor on my Thursday appointment. X
Sorry about this late reply. Eostrogen is the gold standard for laying down new bone. It keeps our bones strong when we're young. After the menopause, it's downhill all the way for renewing. I am unable to take biphosphates, which, incidentally, make one's body hang onto old bone. This is why it cannot be taken continually for the rest of one's life. Bones would just start fracturing, especially the jaw. I am light boned and at high risk of developing osteoporosis. I would suggest you see a female GP. If you're not overweight, have no history of breast cancer in your family, have a healthy heart and your blood pressure is good, under control, then there's no reason not to put you back on HRT. Incidentally, being overweight is 4 times more likely to cause BC than taking HRT. Pats
Thank you pats555…. I must admit I am terrified of all the Biphosphate treatments mainly for the long term side effects, oral imparticular.I have suffered tooth abscesses and other dental problems all my life maybe due in part to other autoimmune conditions that I have, so the thought of a disintegrated jaw bone is a worry as I know my jaw has already suffered bone loss.
I have a telephone appointment with a rheumatologist in June and will listen to all he or she has to say on the subject but at the moment I am favouring the natural approach, costing a fortune in supplements but you can’t take it with you, can you?
osteoporosis
Osteoporosis 
Osteoporosis and Steroids
