Advice please - joint pain following Denosumab... - Bone Health

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Advice please - joint pain following Denosumab/Prolia injection

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I have had Prolia injections since 2015 with no side effects and good results with my bone health according to my last Dexa scan. Almost 2 weeks after my latest injection I had severe pain in my back, my side and stomach in the area where I'd been injected. It has settled now but could this have been due to the drug or is it just coincidence? I know joint pain can be a side effect but would this happen a while after it was administered or would it have been quicker reaction if it was due to the Prolia? What are people's experiences?

34 Replies
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Hi onoodle

I did seem to have a bit more muscle pain after my last Prolia injection. It is a common side effect. I do some stretching exercises and that seems to alleviate it.

Take care

Hidden
Hidden in reply to Deb18

Thanks for you reply. I'm not sure I had muscular pain but it was bad enough to have to take strong pain relief. I also have rheumatoid arthritis & was in the middle of a flare so it could've been something to do with that.

Hi I have had 6 Prolia injections now. I have not experienced exactly the same problems as you but I do get upper abdominal pain about 2 days after injection which goes on for 3to4 weeks after. It seems to provoke an existing problem I already had. I find I get back pain when my injection is due and that became very severe when I went 5 weeks overdue on it earlier this year. But once I got the injection it went after a few days. Can I ask you how long have you been told you can stay on this for. I was told about 10years it has been licensed for. I'm hoping some new treatments might be available by then.

Hidden
Hidden in reply to jimister

Thanks for your reply. I don't recall being told how long I would be on Prolia. My rheumatologist prescribed it & said i would need regular dexa scans. Provided they showed that the drug was effective i could stay on it but if it failed to work it would be stopped.

HeronNS
HeronNS in reply to Hidden

Just a reminder that Prolia must never be stopped without you being put on a different drug as Prolia is implicated in severe rebound osteoporosis if discontinued without back-up medication being provided.

Hidden
Hidden in reply to HeronNS

Yes I am aware of that. This is my third treatment for osteoporosis, all prescribed by my rheumatologist, in whom I have complete faith. My GP is also aware of these recent symptoms.

JGBH
JGBH in reply to HeronNS

A friend of mine has been put on prolia/Denosumab but has been told no more than for 3 years. Denosumab, when stopped has ruined my life, having had sacral insufficiency fracture of the altar of the spine (the altar is the triangular bone in the lumbar area of the spine) causing incredible pain and I am losing my mobility. Had I known all the rebound problems associated with prolia at the time of being recommended it I wouldn’t have had the treatment.

HeronNS
HeronNS in reply to JGBH

I'm so sorry to hear this. Sounds like Hidden has been lucker than you.

Thyb
Thyb in reply to JGBH

So agree....Prolia from my research could be classified easily as a 'NO GO' especially if people are Allergic to Alendronic acid as I am so cannot take any medication for Osteoporosis xx

JGBH
JGBH in reply to Thyb

How did you find you were allergic to Alendronic acid?

Thyb
Thyb in reply to JGBH

A Nurse gave me AA in Hospital 3 Years ago. My arm swelled up to double its size and went bluish, she called the Dr to the ward.....It was concluded that I was allergic to it. 👀 🤫

JGBH
JGBH in reply to Thyb

My goodness! Hope you recovered quickly. I noticed you had cervical, thoracic and lumbar fractures. Do you have any problems walking and standing up? What treatment are you on?

Thyb
Thyb in reply to JGBH

No treatment. I looked into prolia/zolendronic etc etc and decided not to take any as 'Long term', would need a Bisphosphanate like AA after ceasing Prolia etc (nasty drug) from what I've researched.....I take 4000 iu vitD3, 75mcg k2-mk7, vit B Super Complex, magnesium topical spray.

I can walk/stand etc, I just wear a support brace (ltso) if I'm going to be on my feet for a while.

🙂 👍

JGBH
JGBH in reply to Thyb

Thank you. The endocrinologist suggested I should receive AA infusions.... not sure whether I will go ahead but my risk of hip and femur fractures is high, so not an easy decision to make. Since I have had sacral insufficiency (apparently very rare fracture) I have serious problems walking (with help of a stick), cannot stand up for long, so cooking is difficult and exhausting. I can't do any gardening anymore, yet I used to do so much, enjoying it tremendously, can't clean the house anymore, so life is somewhat restricted and depressing. Am only 74, and used to be very active, although I have had RA since my late 30s, it was somewhat controlled, but not so much now so am nearly always in pain. Sorry about your brace... To be reasonably healthy is wonderful!

Thyb
Thyb in reply to JGBH

I cannot do Housework either which is a huge issue for me (previously) OCD with regards to cleaning.

Fortunately, I have a cleaner once a week, and someone to Hoover daily.

I'm 65....wish I had thought about taking vitamins/supplement many years ago.

I was diagnosed with Hypothyroidism 9 Years ago, but, turned out to be Hashimoto's with very high ANTIBODIES.

I know now that a low/or high ft3 can cause Osteoporosis, just wish I'd known that years ago

I 'thought' AA was only administered weekly?

When you say AA infusion do you mean zolendronic acid or strontium ranelate?

P.S. I will receive my 'T scores' via a phone call from a New Rheumatologist on Friday. I refuse to see the previous one as he 'speaks at one', not 'to one' so I told him to take Prolia and let me know how he gets on with it!!!!! 🙃🙃

I know that sounds cheeky, but, I have no time for 'medics', who just want to dish out pills without giving evidence 'for and against'.

However, I do have a good GP and Endocrinologist who are knowledgeable and polite, so I'm lucky in that respect

🤗😊

JGBH
JGBH in reply to Thyb

I mean Zelendronic Acid, an infusion once/year, in hospital.I have hypothyroidism since my thyroid gland was removed in 1980 because of papillary carcinoadenoma. Was only put on Levothyroxine and became quite ill. I should have been given T3 but that was not done.... Unfortunately, I did not know and no Google in those days. I had to fight to get the T3 in combination with T4, after seeing a consultant privately first. So Levothyroxine does cause osteoporosis as does T3. I also have GERDS so have been taking PPIs (omeprazole) for decades and that can also play a role in osteoporosis.

A few years ago I was told my Vit D levels were SO low, although I was always outside, walking and gardening. I take a Vit D3 spray with K2-MK 7.

I had to have a cleaner too and a gardener. I would much rather do my gardening.

Thyb
Thyb in reply to JGBH

Do you take the Betteryou vitd3/k2 mouth spray? Does taking levothyroxine cause osteoporosis?? I did not know taking levothyroxine caused osteoporosis?

I was only aware that low ft3/high ft3 can cause osteoporosis??

I thought levothyroxine was a replacement for the thyroid when it doesn't work? I'm confused now

JGBH
JGBH in reply to Thyb

Yes I have read that both T4 (levo) and T3 (lio) can contribute to osteoporosis. However these drugs are needed , it’s a question of being monitored well, which is not always the case here in the UK. Do you live in the UK.?I take the Betteryou combination.

Regarding my Free T3 levels they were incredibly low for many many years. Much improved since I have added T3 to my T4.

Thyb
Thyb in reply to JGBH

I live in the UK.

My ft3 is only 3.1, ft4 hovers around 11-12.4. TSH around 3.5-4.5. I've had numerous side effects from all levothyroxine tablets.

For a few weeks I've been taking liquid levothyroxine so I'll see how it goes.

I need my ft4 to raise substantially before I know whether I convert ft4 to ft3 (so to speak)...

The highest daily dose of levothyroxine I've ever been prescribed is 50mcg (5mls liquid levothyroxine) daily just now then repeat blood test next Month.

No doubt I'll need to raise dose to 7.5mls (75mcg) next Month.

My Endocrinologist won't give me t3, he said it would make me ill! I know my cortisol is low.

I'm glad your Free T3 levels are much improved.

I was lead to believe that levothyroxine is a 'hormone', hence, how can it contribute to osteoporosis? Do you have any research about it?

JGBH
JGBH in reply to Thyb

Sorry I can’t give you a link to any research paper re: T4 and osteoporosis. I read so many papers about many health issues that I have, I simply can’t remember. However what I found odd is that the Endo who is dealing with my osteoporosis has written to the Endo who looks after my hypothyroidism stating T3 (which he prescribed for me) is a factor in osteoporosis! So if T3 is a factor so must be T4. My local hospital refuse to prescribe T3, they even refused to see me knowing I wanted a T4/T3 combination trial! That’s where the osteoporosis Endo is based. Clearly it’s all because of money and nothing to do with what’s best for the patients. The thyroid Endo works at another hospital so I went to see him privately and he transferred me under the NHS. He was rather shocked I was never given T3 after the thyroidectomy all those years ago. My surgery refused to carry on prescribing (cost again) so the Endo carries on prescribing it because I really need it. Of course they always say how dangerous T3 is! It’s all because of cost. However one needs to be aware T3, being the active hormone is much stronger than T4 and one needs to start on a low dose, increasing slowly, up to a point and decrease the T4.It has helped me but I am not wonderful... having so many health issues doesn’t help. Like with any potential drug one has to be careful and be monitored.

Hope the liquid levo works for you.

Thyb
Thyb in reply to JGBH

I've had 3 thoracic fractures and cervical/lumbar problems for Years.....🙂

Hi: I, too, have had no real problems with Prolia injections. You complained of pain where you had the injection. I receive the injection in my left arm and it hurts for a moment that's it. Did I misunderstand?

Hidden
Hidden in reply to henworth

Thanks for replying. The worst part was pain in my middle & upper back although it moved about. I am always injected in the stomach & on this occasion also had pain in the area where I'd been injected which was ironic when I never felt the injection at the time. I also have rheumatoid arthritis & was in the middle of a flare so I wasn't sure if it was to do with that or the Prolia.

If this is a new symptom you should not dismiss it but inform your doctor. Remember not to discontinue Prolia without another bone drug being substituted for a time (two years? not sure). Prolia has quite a strong effect on the immune system which is one reason why there should be constant monitoring of patients who are on this medication.

JGBH
JGBH in reply to HeronNS

Indeed there should be constant monitoring of patients on prolia but this was never the case with me, in the UK, although I have a few autoimmune diseases, RA being one of them. It is shameful.

HeronNS
HeronNS in reply to JGBH

Frankly I think the whole business of osteoporosis and dangerous drugs is mishandled worldwide. And I use the word "business" quite literally.Why we are not from an early age taught how to look after our skeletons the same way we are warned about the dangers of smoking, how to preserve heart and brain health, how to avoid diabetes, I don't know. Instead all of a sudden we are told your bones are thinning out, take this medication.

JGBH
JGBH in reply to HeronNS

Indeed, I totally agree with you. What I find hard to understand is that none of the drugs used to help with osteoporosis are not actually helping with the growth of new strong healthy bones but only somewhat repair the old damaged bones and once the drug is stopped rebound fractures occur. Apparently fractures can occur while on the treatment.As you say it is a business! Big pharma making money at the depends of patients.

Take care.

HeronNS
HeronNS in reply to JGBH

Osteoporosis is considered a disease of (mostly) older women and we are a vulnerable and exploitable demographic. i am sure there is a place for the medications, but certainly not to the extent they are used. The companies went so far as to create an entirely new "illness" - osteopenia, which is actually only the normal decrease in bones density we experience in later life, and should more accurately be looked at as a warning to up one's game regarding exercise and nutrition, not an opportunity to be given questionable drugs. Osteopenia may even be a signal that there are other things going on with the body, like the parathyroid issue which causes calcium not to be properly utilised by the bones. I am so glad I did a lot of reading before agreeing to my doctor's advice that I take alendronic acid as a preventative when I first started taking prednisone for another ailment. I learned so much and will never take osteoporosis medication!

JGBH
JGBH in reply to HeronNS

Of course I am in agreement with you. But what to do when the osteoporosis is so bad one gets fractures? It leaves one feeling pretty useless and overwhelmed by the on going progression of the disease.

HeronNS
HeronNS in reply to JGBH

Exactly. Which why as young adults we need to be told what to do, especially as we now live longer and have generally led less physically acive lives than our ancestors.

Thyb
Thyb in reply to JGBH

Big PHARMACEUTICAL COMPANIES AGAIN KILLING US!!!!!!!!!!!!!WITH THERE LOUSY MEDICATION 🤔👀

Hi Onoodle I have been on Prolia injections since 2016 I always have injection in leg according to consultant (who is newly appointed have had telephone conversation with her ) I will have had six injections (had injection yesterday) I do get a lot of stiffness in arms and legs I also get pain down shin bone of my left leg (not the leg I have injection in) during the night I find the pain gets worse about two months before I am due for next injection when I have spoken to consultant she more or less dismissed it and said I was laying on a nerve I have since found out that one of the side effects of this drug is pain in legs plus stiffness I have not had none density scan since 2016 so don't know what my score is I am hoping when I speak to consultant in January she is going to arrange a bone scan for me I suffer from severe pain in my back I am unable to stand for any longer than 4/5 minute s but I put that down to the vertebrae fractures I have sustained I didn't think that it could be caused by Prolia but you have made me think that Prolia could well be the cause of pain as since I sustained fractures the pain has never improved and get my previous consultant ( who was absolutely great ) told me that it would improve.

Now that you are on Denosumab you must not leave it off for fear of rebound fractures, a warning given by the FDA in January 2017. Hopefully the pain will go away.

fiercepharma.com/pharma/con....

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