Osteoporosis : Just discovered that my bone density... - PMRGCAuk

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Osteoporosis

Pandora2 profile image
70 Replies

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

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Pandora2 profile image
Pandora2
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70 Replies
piglette profile image
piglette

Have they told you the results of your scan?

Pandora2 profile image
Pandora2 in reply topiglette

Only that it’s abnormal, no numbers but I plan to find out ASAP. THANKS X

piglette profile image
piglette in reply toPandora2

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!

in reply topiglette

I take Alendronic (sp?) Acid and have done for several years and still ache like 🤪 crazy

Pandora2 profile image
Pandora2 in reply to

Sorry to hear that David, maybe time for something different? X

piglette profile image
piglette in reply to

There is supposedly a limit of 5 years on Alendronic Acid although some doctors are suggesting a shorter time.

Pandora2 profile image
Pandora2 in reply topiglette

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

piglette profile image
piglette in reply toPandora2

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.

Pandora2 profile image
Pandora2 in reply topiglette

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

HeronNS profile image
HeronNS in reply toPandora2

Please read my story. It will give you some ideas about how to start to preserve (and improve) your bone density without drugs.

healthunlocked.com/pmrgcauk...

Pandora2 profile image
Pandora2 in reply toHeronNS

Thank you H, your story is very interesting to me as it seems I have already adopted some of your advice re supplements. I now know I cannot cope with AA tablets as I’ve explained to Piglette so drug options are already narrowed down. Xx

piglette profile image
piglette in reply toPandora2

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.

Pandora2 profile image
Pandora2 in reply topiglette

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

piglette profile image
piglette in reply toPandora2

I am none to keen on taking it, unless it was proved to me it was absolutely necessary!

Ana-16 profile image
Ana-16

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

HappyDiamonds profile image
HappyDiamonds

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.

Pandora2 profile image
Pandora2 in reply toHappyDiamonds

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

HappyDiamonds profile image
HappyDiamonds in reply toPandora2

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

orangemax profile image
orangemax in reply toPandora2

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.

Thirtynine39 profile image
Thirtynine39 in reply toorangemax

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.

orangemax profile image
orangemax in reply toThirtynine39

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!

PMRpro profile image
PMRproAmbassador in reply toThirtynine39

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.

PMRpro profile image
PMRproAmbassador in reply toHappyDiamonds

Interesting - haven't seen that.

HappyDiamonds profile image
HappyDiamonds in reply toPMRpro

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.

PMRpro profile image
PMRproAmbassador in reply toHappyDiamonds

Definitely! Where are you?

HappyDiamonds profile image
HappyDiamonds in reply toPMRpro

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.

PMRpro profile image
PMRproAmbassador in reply toHappyDiamonds

They do have a good name.

SheffieldJane profile image
SheffieldJane

That sounds an excellent response to patient fears, with a real nurse too.

agingfeminist profile image
agingfeminist

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

Pandora2 profile image
Pandora2 in reply toagingfeminist

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

HeronNS profile image
HeronNS in reply toagingfeminist

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.

agingfeminist profile image
agingfeminist in reply toHeronNS

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!

HeronNS profile image
HeronNS in reply toagingfeminist

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.

Looby60 profile image
Looby60

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 😊

Broseley profile image
Broseley

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.

Uke1 profile image
Uke1 in reply toBroseley

My experience exactly.

Miserypants profile image
Miserypants

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.

Sandidee profile image
Sandidee

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

RunRabbitRun profile image
RunRabbitRun

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.

Pandora2 profile image
Pandora2 in reply toRunRabbitRun

Many thanks for your advice. I’ve had a lifetime of oral problems so need to take your warnings very seriously. Xx

LogansNan profile image
LogansNan

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.

Amkoffee profile image
Amkoffee

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.

Pandora2 profile image
Pandora2 in reply toAmkoffee

Thank you Amkoffee… you are right all angles need weighing up . I am adding your injections to my possibles list. Xx

Sharitone profile image
Sharitone in reply toPandora2

I have also had no problems with Denosumab

PMRpro profile image
PMRproAmbassador in reply toSharitone

The worst problems may arise when you STOP it as there is a rebound effect. While using it it seems to have few problems.

Amkoffee profile image
Amkoffee in reply toPMRpro

My rheumatologist warned me about this too.

PMRpro profile image
PMRproAmbassador in reply toAmkoffee

They just keep using it - at least they have come round to that idea!

Linny3 profile image
Linny3

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

Pandora2 profile image
Pandora2 in reply toLinny3

Seeing a doctor next week and expect to be thoroughly educated in all matters relating to bones ,thanks to you kind people. Xx

Pandora2 profile image
Pandora2 in reply toLinny3

Glad to hear you’re on the road to recovery. I’ve been collecting supplement advice and am taking Collagen already. We’ll beat this thing yet! Xx

MB2016 profile image
MB2016

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.

Pandora2 profile image
Pandora2 in reply toMB2016

Thanks for the warning. I’ll certainly avoid Prolia. Xx

HeronNS profile image
HeronNS in reply toMB2016

Were you still taking Prolia at the time?

purpleraindlk profile image
purpleraindlk

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.

Pandora2 profile image
Pandora2 in reply topurpleraindlk

Thank you, I’m learning such a lot from you kind people and gaining confidence because of it. Xx

HeronNS profile image
HeronNS in reply topurpleraindlk

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.

Harrywogan profile image
Harrywogan

Hi have been on A A 4 years no problem iam just now taking it sometimes but all good .x

scottygirl73 profile image
scottygirl73

I had 3 zolendronic infusions was bit out of sorts with 3rd one,i take fultium d3 every day.good luck.xx

Sho-Sho profile image
Sho-Sho

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.

Pandora2 profile image
Pandora2 in reply toSho-Sho

Thank you, Zolendric infusion seems to be recommended by quite a few people. Just don’t know if my GP will favour it, it seems to need a hospital recommendation, however I will be mentioning it to him. Xx

Pandora2 profile image
Pandora2

Thank you so much, xx

kewl1 profile image
kewl1

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)

PMRpro profile image
PMRproAmbassador in reply tokewl1

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.

kewl1 profile image
kewl1 in reply toPMRpro

Thanks. Now that you mention it I may have heard my wife say that before

Spanky2019 profile image
Spanky2019

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.

😘

Pandora2 profile image
Pandora2

Good point which I am already wary of , thank you. X

pats555 profile image
pats555

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.

Pandora2 profile image
Pandora2 in reply topats555

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

pats555 profile image
pats555 in reply toPandora2

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

Pandora2 profile image
Pandora2 in reply topats555

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?

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