I was firstly prescribed alendronic acid tablets but after a fracture was discovered on my spine - was given an aclasta infusion (it is yearly)
Unfortunately I suffer with many problems with my teeth and during the year I had the infusion had to suffer dreadful toothache for 3 months before I could get appointment at hospital for extraction. My dentist would not extract it due to the aclasta infusion. The Consultants, nurses etc all quite happy to prescribe these biphosphonates but they don’t inform you of the possible problems with teeth. I was in agony and very depressed waiting for the extraction. I have now come off the drugs and I just take my Adcal. I realise I am at risk doing this but I cannot face the possibility of going through all that again as my teeth are my worst enemy.
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OldCrumbly
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Oh dear, OldCrumbly, so sorry to hear all the problems with your teeth on top of fracturing. I can fully understand you not wanting to be on bisphosphonates; one of the reasons I told my GP I won't go back on them is because I'm likely to need a lot of dental work (I took risedronate for a year, but gave up due to side effects). When I enquired about an implant earlier this year, the dentist told me he wouldn't do it till I've been off bisphosphonates for 3 years!!! He also said I'd have to have any extractions done in hospital, take anti-biotics and have the wound packed!! When I first started bisphosphonates my GP at the time didn't tell me I was supposed to have a dental check-up first and get any necessary dental work done before starting the meds. There are other drugs you can take though, that don't terrify dentists, so it might be worth enquiring about those. Of course they all have side effects for some people, but most people are fine with them. If you phone the nurses on the NOS helpline (nos.org.uk) they'll be able to explain the different options to you.
Poor you! I can well understand how you became very depressed. These OP drugs do appear to be an utter nightmare for so many OP sufferers. Not enough is known about them in the long term either so I believe. .....
You have obviously given it a lot of thought regarding traking meds or not, as many of us have too. I hope that just taking the Adcal will be enough in your case. Do you know your Vitamin D levels in both summer and winter as we do not store Vitamin D? Are you able to do exercise daily? Do you take any supplements like magnesium, K2, cod liver oil? Do you follow a good diet regime?
I do not take any calcium tablets, only prescribed Vitamin D. I had a chat with my GP and we both agreed that I had enough calcium in my daily diet so extra calcium in tablet form was not necessary.
Do you have a copy of your report from your latest DEXA scan?
I don’t have any of the information - no copy of decay scan - diets is reasonably sensible. I refused to become paranoid about what to eat etc. I take cod liver oil capsules and do a fair bit of walking and some cycling.
If you would like a copy of the DEXA scan report, ask the receptionist at your surgery to run you off a copy. You are entitled to have a copy should you wish to have one.
Thanks for that Karina but it wouldn’t really mean much to me if I saw it. My GP probably would be annoyed with me after he referred me to the Consultant and I have discharged myself from the Clinic anyway. Thank you for your comments though. Note: should say Dexa not Decay ! But the latter is probably more apt !!!😁
Hi. I am in the US. I had been receiving Prolia injections twice annual for 5 years but stopped for a few months because it caused immune system problem. This led to multiple vertebrae compression fractures. I am now scheduled for a Reclast infusion but was warned in advance to have all possible dental work done. I located a dentist with knowledge and experience regarding the possibility of necrosis of the jaw. We discussed my teeth and I made the decision to remove all my remaining upper teeth. I am now working on having the denture fitted. I can't advise you of the best course but I can tell you that I decided to go with Reclast as a treatment since I have concluded it is my only hope for some mobility. I was already limited because of polio as a child. I am 66 years old.
Wow! Sounds like you're between a rock and a hard spot, Birdmama! I won't take any bone meds...they're dangerous, I believe. I had my doctor put me on HRT instead to help my bones. I'd rather take my chances with them than with those crazy bone meds.
Phew - all teeth extracted that is a drastic decision ! But brave you. I had to have an extraction in December (just before Christmas - so remember it well !) my Dentist agreed to do it as I had not had the infusion for some 18 months or more. The tooth had split down to the root - I had 3 injections as they didn’t seem to take !! I have never ever had such pain with an extraction - I remember shouting to him - hurry ! - but as he had to keep the tooth together he had to pull it slowly - I just wondered if the pain was due to having had the bisphonates! Although the one I had removed at the hospital I felt no pain whatsoever. Dentist said the injections didn’t take due to an Infection - all I know is if I have to have another extraction I will dread it. I am not a wimp - I used to prefer extractions to fillings but now if I get a twinge in any of my teeth I worry a lot !!
I came across some studies indicating that alpha-lipoic acid is thought to help prevent bone loss. If you will type alpha lipoic acid and bone loss in your browser, you should see some of that information. I actually began taking ALA to aid in post herpetic nerve pain from a recent Shingles episode and found that ALA is good for many health issues including type II diabetes! Alpha lipoic acid can be purchased easily. The recommended dosage is 600 mg a day. I take one 300 mg around noon and one after dinner. I do not take in the AM as you need to keep 4 hours between ALA and thyroid medication. Hope this helps.
Hi, I am new to this forum and I am in Canada. I am on prolia for 3 yrs already, since 2 yrs ago I started having gum problems despite my best efforts to keep my teeth clean. In this 3 months period I had 2 molar extractions, and the periodontal exam yesterday showed I will lose more soon. She gives me choices if I want to keep my remaining teeth I must undergo gum surgery and intensif periodontics cleaning every 3 months which “hopefully” will let me keep my teeth. It’s all a very expensive spending and my extended insurance only cover a little part of the costs. I am so depressed with this side effects, if only I knew before starting the prolia. I read your post in which you’re so brave to let go of your upper teeth and now I am thinking the same. My question is, how’s the process of removing multiple teeth? Did you do it in several procedures? How much time needed to get a denture fitted? I am 63yrs old, and I am feeling down after my visit to the periodontist. I hope to learn from other people’s experience... thanks so much !
I had only seven upper teeth left. I have had bad teeth all my life because of high fevers as a small child. I had Polio at age 3. The dental extraction was done in my Dentist office but I had been off Prolia long enough that the Dentist felt confident in doing so. You may need to consider a dental surgeon for the extractions. Many people have all teeth extracted ar once. If you decide to go that route feel free to reach out to me and I will share any experience that might be helpful to you.
Thank you so much for your reply, it seems that I may have to go into that direction, and I would appreciate your sharing of experience dealing with teeth problem. Besides teeth I am struggling with this icthy skin that’s been going on for 4 months now, I am seeing my GP next week and asking his opinion regarding my teeth as well. By the way, you’re not on Prolia anymore? Do you use other medication to prevent the rebound effects of Prolia? I do regret taking this Prolia, the side effects is hard on me.
I am having a problem submitting so I will keep it short. Please make arrangements to take an alternative treatment because stopping Prolia will most likely result in spinal fractures.
Dear OldCrumbly I can fully relate to you. I had to have a tooth extracted which my dentist refused to remove as I am on Prolia. I ended up paying privately as there was too long an NHS wait. I had stitches and antibiotics afterwards. Just hoping I won't have any more problems ! Likewise for you as well.
I had a tooth extracted this past June, after having had 3 shots of Prolia. I have doctor confirmed ONJ (Osteonecrosis). It is now mid December and I am not fully healed. I have had to cancel my February hip surgery due to risks, and am now with a Rheumatologist to monitor the adverse effects of stopping Prolia. I am finding out that you can't just stop Prolia without some alternate medication. You will likely experience rapid reversal in bone mineral density (BMD) , increased risk of fractures, and suffer a rebound effect where you are worse off than you were before you began! Isn't that special!!!! Most of the alternative drugs are Bisphosphonates (Fosamax, Actonel, Boniva and Reclast) that also cause ONJ so I cannot change over. Three years ago I was an athlete - now I can hardly walk around the block!
If anyone hears of a class action law suit on Prolia please notify me.
Hi I am sorry to hear that you have problems with osteonecrosis. I hope it isn't too long before you are better and can have your surgery. You are quite right that you can't just stop prolia and must have an exit strategy.
I much prefer to take my chances rather than EVER take those bone meds. I believe they should all be taken off the market. I'm 70 years old and I talked my doctor into putting me on HRT to help my bones. He agreed to do that, which is very unusual! I'm feeling so much better now.,.just generally, because I know have hormones again! I would suggest going on HRT if you can talk your doctor into giving them to you.
Hi - thanks for that. - glad you have taken the alternative option to the bone medication. Hope all works out ok for you. I too am 70 but not sure if my Doctor would prescribe HRT at this age but thank you anyway.
I know..they really don't like to prescribe it for the old folks, but I would ask him over and over again. He finally relented and I feel great now! Just tell him you'd like to try it for a few months, to see how you feel...ask him how he would like to be told at age 70 that he couldn't have his testosterone replaced! That worked on my doctor!
Oh I so much wanted to go that way, but GP wouldn't - mentioned risk of stroke etc. Would love to hear other thoughts on that. There is a consultant in London who prescribes this for bone health and general health, but he's Harley Street and costs arms and legs. Am in the same age group as you.
New information regarding strokes..heart attacks...etc. Now they're finding that those big studies were skewed and HRT is not as dangerous as they thought.
Hi sweetsusie, are you able to provide us with a link with the new information regarding HRT and strokes/heart attacks now not being as dangerous as previously thought, please ?
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