Osteoporosis and Denosumab: HI all. I wrote... - Bone Health

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Osteoporosis and Denosumab

Danni54 profile image
19 Replies

HI all. I wrote not long ago asking for advice and people here have been wonderful but I have another couple of question's! I have just read that Denosumab is not advised for people with dental problems. The cancer misdiagnosis affected my teeth very badly and I lost a few and have denture's for my top teeth but also have problems with my lower teeth. I can't go to the Dentist but she does do home visit's. The articles I have read have advised that we need to have dental checks before being given Denosumab .I go on Wednesday afternoon to have a bloodtest to check my calcium and Vitamin D levels so I will check with the Nurse but if anybody here knows of any information I would be grateful. So many mistakes have been made with me that I have ended up with multiple problems so I really don't want any more if the Denosumab injection will be bad for me and potentially, do more damage! I also have what the Gastroenterologist said was a "massive hernia " which they can do nothing about partly because of having a Lobectomy 4 year's ago .My hernia is causing me a lot of pain just now and all I want is for my Dr.s to help me . They don't and it's only because I have begged them for help that I am now being offered Deosumab. I am worried about it though . Thank you for all the previous responses.

All the very best to you all.

Danni

19 Replies
MWZ3 profile image
MWZ3

That’s prolia which I wouldn’t touch with a 40 ft pole. You can’t just go off it once on it for a while for a start. I researched this a few years back but once the final decision was due, I decided it was just too risky. How bad are your tscores? Have you broken any bones? I was at the osteo last week and she said they are bad drugs for osteoporosis and counterproductive. It seems irresponsible of doctors to be pushing these drugs but many still are.

Danni54 profile image
Danni54 in reply to MWZ3

HI. Thank you so much for your reply and advice. I have 2 fractured vertebrae at the base of my spine and when I had the the DEXA Scan the Radiographer told me that the next 2 up are very thin . There is Osteoporosis in my hip's , shoulders, the upper spine ,Pelvic bones and Osteoarthritis in other areas . I do have T scores but I haven't had that explained yet and when I got the results from the hospital the Radiographer from our main hospital said that there is only 1 vertebral fracture but I have had 3 Xray's which have shown 2 and another Scan which has also shown 2 and a big lump at the base of my spine. Considering it was Radiography who didn't let anybody know for 15 month's that I had a tumour on my right lung, I have no faith in any of them. My teeth are a mess and that all happened when the tumour was ignored. I will speak to the Dr. when I see her. Most of the medic's here have been appalling and my family and friend's are furious with what they see as negligence and very cruel lack of support and treatment which is why I now have so many problems including a " massive " hernia . No , I don't go around suing the NHS, just in case anybody thinks that I am planning to do that!

The pain from the vertebral fracture's is excruciating despite having been given Opioid's, Oramorph and Fentanyl patches ! I still get breakthrough pain and what with that and the Diverticulitis and " massive " 10 cm hernia at the front , the pain back and front is unbearable a lot of the time. I used to be active, walked our dog's twice a day and tutored adult Art Classes and so much more but now I'm in bed every afternoon because of the pain and the worst thing is that I can't have a dog!!

The blood test on Wednesday is to check my Vitamin D levels and calcium and I can't remember what else. The Nurse is doing the blood test but I am going to make an appointment with the Dr. because I really need to speak to her about everything! I must admit to being very depressed just now and as I write this I have awful pain from an abcess in my lower jaw and I need the remains of a tooth taken out there as I had antibiotics for it a month ago and now I need more. I am so grateful to you for your advice the warning and I'm incredibly grateful to everybody who have written with their advice. The forum's here are amazing as I found out with the lung cancer forum.

Please take care and I hope that you have a good Consultant and I am wishing you all the best.

Danni

MWZ3 profile image
MWZ3 in reply to Danni54

Oh you poor lady you are dealing with so much. I have diverticulitis too and osteoarthritis everywhere. Have you had any falls?

Danni54 profile image
Danni54 in reply to MWZ3

Thank you for the sympathy but we keep going don't we! I hate to sound like a wimp but I get scared sometimes when the pain is overwhelming. I don't go to the hospital when thing's are really bad and I don't phone the Dr. very often because they have done nothing for me except make thing's worse apart from my Thoracic Consultant who found my lung tumour when I was rushed in with Pneumonia. He came round the next day and asked why I hadn't had anything done 15 month's previously because the tumour was on an Xray that I had then. I told him that I didn't know that I had a tumour! He is my hero! However, the Gastroenterologist rang me about 4 month's ago and he is more than useless! He asked whether I was better because he hadn't spoken to me for 2 year's because of Covid. He hadn't bothered to read my notes before he rang because he then said " Oh! I see that you have a massive hernia! They won't operate on you because of the Lobectomy and the operation would probably take 4 and a half hours! "He told me 2 year's ago that there was a thickening in my Colon which might be a tumour and then did nothing. I was a bit grumpy with him! I could write a book !

However, I know I'm 69 but I still wear dragon tshirt's and have a fairy garden which children and adult's love....my husband hates the ornament's! My head hasn't caught up with my body !

You haven't had an easy time either and I really wish I could wave a magic wand ( sorry !!!) and make you better and everybody else! How long have you had Osteoporosis and how many fracture's do you have? It's so strange but other people have said that they have Diverticulitis and Osteoporosis. I had a fall on the ice about 3 year's ago and fell on my back and it was really painful but I didn't go to the Dr. for about a year when the pain kicked in and the lump in my back got bigger! I begged for an Xray but didn't get one till I begged for the 3rd time ! The list goes on!

Please take care. All the very best,

Danni

MWZ3 profile image
MWZ3 in reply to Danni54

To my knowledge I’ve had no fractures since childhood. I do have bone on bone everywhere and degenerative disc disease. My tscores are around -4 so that’s considered severe. I know I have small bones but they may be strong hence no fractures. I use a Walker that can convert to a wheelchair as needed. Today I had fresh X-rays of my shoulders, neck and back. I’ve had both shoulders reconstructed. I can’t stand for any length of time. I think the stomach with the diverticulitis and crohns adds to my whole disability. I can avoid pain by not doing much. I try to walk a bit like 4 minutes which is actually hard for me. Thanks for your kind words. You sound worse off than me.

MWZ3 profile image
MWZ3 in reply to Danni54

I got the results of the X-ray and I have a fracture on my back. So much for being positive. That’s changed but can’t see the drugs are the solution. I keep investigating them but they are terrible. I put up the written result from the X-rays. Click on my name and you can see my posts.

jimister profile image
jimister

What does your Dentist say about you having this drug? Are you going to need a lot more dental work in the future more extractions? Most of the drugs for osteoporosis have the risk of causing problems if you need dental surgery not just Denosumab. I did had dental surgery done at the hospital while on Denosumab and i was ok and did'nt have any problems. I guess i was just lucky.

Danni54 profile image
Danni54 in reply to jimister

HI. Thanks for replying. I do need a lot of dental work and will have to go to hospital to have it done. I'm so grateful for the warnings because I didn't know any of this. Why are Dr.s not telling patient's about any of this? I am truly horrified and how many people are having this medication without being told of the potential dancer's? So strange that my abcess seems to have returned today ! The dentist has to come here quite often since I had lung cancer because I have become quite ill but I will have to go the hospital now for further treatment. It just seems to go on and on.

Before I become maudlin (!) I would just like to say thank you so much again. Please take care . All thhe very best,

Danni

jimister profile image
jimister in reply to Danni54

What a terrible time you have been and still going through. It sounds awful. The way you have been treated by the professionals is not good. Suffering pain every day is so exhausting and makes you feel so down and helpless. I do hope that things will improve for you at some point.

Danni54 profile image
Danni54 in reply to Danni54

That should have been danger's but the stupid Predictive Text keeps putting in dancer's ! I can't imagine anybody with our problems wanting or being able to dance!! Mind you I can't help but jig about a bit when I listen to Santana's Smooth etc.! Then I end up in so much pain but it's worth it !!

Danni

Valerie0106 profile image
Valerie0106

Bisphosphonates can lead to problems with the jaw bone so if you are to begin taking them you should have good dental health with any necessary work done first. Its worth researching side effects so that you can make an informed decision.

Mavary profile image
Mavary

Hi! I’m on Denosumab and have been for more than two years now. I didn’t get told go to the dentist before I had the Denosumab but I do go for regular check ups now. I’ve had a tooth removed since being on it. I’ve got a Cousin that has been on it probably five or six years now. Non of us has had any problems. I’m on it for life but that doesn’t worry me if it stops me fracturing. I’ve had seven spinal fractures so if it helps I’m fine with it. No nasty side effects or anything. And I haven’t had any more fractures for over two years. It’s up to you to decide what to do but you can get good advice from The Royal Osteoporosis site. They are trained in all these things and I’m sure they would give you very good advice.

buddy99 profile image
buddy99

I was concerned about the administration of Prolia after my doctor strongly recommended it the reason being reports I found of various lawsuits and bone specialists in Switzerland apparently voicing strong concerns. I called Amgen, the producer of Prolia, and had a 20 minute "consultation" giving them all my data, which, I was told, were shown to their medical advisor. It turned out that Amgen "cannot recommend Prolia for your (my) case". So, I did not agree to have it administered. It looks to me like it is a case-by-case decision and that in severe cases Prolia might have a role. Overall, I feel, caution and collection of sufficient information is advisable (as with everything we put into our bodies ;) ).

Nannie-C profile image
Nannie-C

did Dr fully discuss an exit plan and ensure you can safely take a bisphosphonate drug like alendronic acid, risedronate or zolendronate for when you stop, delay or miss a dose of denosumab (Prolia)? If he didn’t then he’s putting you at risk of no protection from rebound phenomenon and real risk of multiple vertebral fractures occurring during the around a couple of years of rebound. This happens when anyone comes off the drug and if you can’t take that relay or need certain dental treatments ot other reasons then you have no protection. Knowledge is so important with this medicine.

I’d really want to have parathyroid sample taken along with the samples for vit d and calcium as parathyroid gland issues are common cause of bone changes and sadly many body symptoms. They must all be done together as it’s their relationships at that moment, not just levels, that can diagnose this easily treated condition allowing bones and body start to heal. If they say no than that would tell me their knowledge base is poor.

Do more research on this drug before committing, plenty excellent reliable Facebook groups too.

Danni54 profile image
Danni54 in reply to Nannie-C

HI. Thank you so much for your advice. It is so helpful and the Dr. has not discussed much with me except to ask me to go for a blood test . I have, amongst other thing's, an Underactive thyroid and I'm on 100 mcg for that but don't have regular blood test's for that ! Our medical situation here has become pretty diabolical and a lot of people are scared and have no faith in the medic's. That applies to me even before my cancer misdiagnosis. It would take too long to write down the mistakes.....some are in my profile!

I have my blood test on Wednesday to check for Vitamin D levels and Calcium. Apart from that I have had no help or advice from any of the medic's! How many people are going into this with no help or advice? It's frightening! I will, definitely, talk to the Dr. about all of this although when I gave 1 of the Dr.s a ROS leaflet he wasn't at all interested! I had to research lung cancer, Diverticulitis, " massive " hernia, spinal fracture pain and more because since Covid, it's difficult to get a face to face appointment. This may sound self pitying and I don't mean it to but I am really fed up with all the pain, drugs and lack of help and support except HealthUnlocked has been wonderful. It's like a constant battle!

Thank you again. Sorry to moan! I will bring up all the points that all of you amazing people have brought up....Will write them down so that I won't forget anything! Please take care.

Danni

Nannie-C profile image
Nannie-C in reply to Danni54

I find now due to para brain fog I have to write everything down too plus I try and take someone with me as two sets of ears are better than one plus I don’t feel so intimidated. Good luck🤞🏻

Cappuccinobaby profile image
Cappuccinobaby

hAve you had hyperparathyroidism ruled as the cause of your calcium? I wouldn't touch any bisphosphanates until that's been done. Infact I wouldn't touch bisphosphanates full stop.....you need to research it.......

FearFracture profile image
FearFracture

Are you aware that unless you have parathyroid issues, your calcium will pretty much always show level in the acceptable range? That calcium blood test is very misleading in my opinion, mostly because doctors fail to explain what it’s really checking/showing. Your parathyroid glands work to keep calcium levels w/i the normal range. If you don’t get enough calcium via diet/supplements your parathyroid glands release PTH to go “find” or “get” calcium from other sources, which often means taking calcium from your bones, and this process keeps your blood calcium levels in the normal range.

If you bloodwork shows that your blood calcium levels are outside the normal range, your doctor should be looking at your parathyroid glands to see what is going wrong.

Bisphosphonates and Denosumab can cause issue with your jaw—ONJ. These issue are supposedly “rare” but if you already have dental issues you are more likely to have problems. You definitely need to discuss this w/ your dentist before starting any osteo-meds.

Also, I saw that someone already mentioned this but you need to have a long term plan before starting Denosumab. You can’t just stop getting Denosumab injections and you even need to make sure you get them every six months.

mravazhamier profile image
mravazhamier

hello I had had 3 d'mab injections and then I had to have a tooth extraction - done at a dental hospital - and yes my gum did take a while to heal over completely - though it must be noted that my body still contained alendronic acid which I had been taking previously. However I must say that my t-score - which had gone as low as -5 in my spine - is now -4.3

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