Denosumab side effects?

[Boneness]

I was diagnosed with Oesteoprosis in 2009, and been on bisphosphonates and zolendronic infusion for the last 3 years with no problems. However, I have been taken off the infusion now and my consultant wants me to have Denosumab injections.

I am very concerned about common side effects, as I suffer from 3 of them anyway. Constipation and Hair Loss are worrying me, also stomach pains mentioned!

How many people can tell me that hair loss is not an issue please?

Such a pity the infusions are no longer working for me.

[ABwn]

Started on denosumab last June no problem with hair loss. However I'm already on folic acid for hair loss. Suffered from that when put onto methotrexate. Good luck

[Zumbablue]

I’ve had one injection with no side effects.

[Fairline in reply to Zumbablue]

Me too

[hamburger2007 in reply to Zumbablue]

are you injecting yourself if so is it easy . i have never injected myself and hoping i will cope.

[Zumbablue in reply to hamburger2007]

Yes. It’s very easy and not uncomfortable. Hope you get on well. I finished my course last year. Had my first injection of Denosumab without any side effects. Next one due in May. Fingers crossed that this will be side effect free.

[questionably]

Hi, Boneness, hair loss wasn't signaled in the clinical trials with Prolia, but has been reported frequently by patients in real world use.

The worse thing about Prolia is the way that it works. It stops the process of bone repair first by preventing the final stage of development in the cells that break down bone--the osteoclasts. Since the cells that build new bone--the osteoblasts are stimulated into production by the osteoclasts, your bone becomes senscent. This bone becomes avascular putting you at risk for atypical fractures primarily in the femur but also in the small bones of the ear. And puts you at risk of osteonecrosis of the jaw.

But then if you have to stop taking Prolia those cells that were stopped in their final stage of developmen, mature suddenly and in greater numbers than your body can handle. When stopping without a replacement drug, patients suffer multiple fractures mainly in the spine.

You've been on antiresorptives for some long time. If you can take an anabolic, it would be better for your bones and safer.

Some people do take Prolia without side effects. I hope that will be your experience.

[Showgem in reply to questionably]

All of the replies so far seem to be from those who are still continuing to take this. I’d be interested if anyone has experiences of stopping it after a few years?

[Boneness in reply to Showgem]

Yes that is what I would like to know, and a very good question? On research it is very alarming, and certainly puts me off starting Denosumab. I really do not know what to do and loosing sleep over it, having just a few days got clear of cancer. I thought things would be getting better!

[Showgem in reply to Boneness]

It’s a very difficult decision to make isn’t it? You’re doing the right thing to research before starting but it does seem that most people do well on it.

So pleased you’ve had the all clear regarding your cancer x

[Showgem in reply to Boneness]

It’s a very difficult decision to make isn’t it? You’re doing the right thing to research before starting but it does seem that most people do well on it.

So pleased you’ve had the all clear regarding your cancer x

[Boneness in reply to Showgem]

Thank you, I get my stitches removed next week, having had 2 procedures and reconstruction.

[questionably in reply to Showgem]

I haven't even taken Prolia. And I think that more people have taken it with success. It has definitely prevented more fractures that it has caused.

For those that experience bone death or fracture because of Prolia, there isn't good help. Reclast is the drug of choice to prevent rebound, but it has the same risk of necrosis and avascular bone. Those are in the "prolia trap."

I'll avoid Prolia for as long as I can. If I have to take the risk, I will. As long as I have a choice I'll choose a medication that works by building strong bone.

[Showgem in reply to questionably]

This is what I’m trying to do as well, if I was younger I’d try to get HRT. I’m sure my osteoporosis is caused by having a hysterectomy at 40 and not being put on HRT as I was told it wasn’t necessary as I kept my ovaries.

[Boneness in reply to Showgem]

I think you are right there, as my mother was exactly the same as you.

[DianeG52 in reply to Showgem]

I started HRT at the age of 58. My endocrinologist is happy for me to stay on it . He says it does more or less the same job as alendronic acid - but with less side effects.

[Showgem in reply to DianeG52]

Sadly at nearly 74 I don’t think my GP would put me on it now

[DianeG52 in reply to Showgem]

Why not ask? Do your research first though and be firm. My friend recently went on it when she was just over 70

[Boneness in reply to questionably]

Hello, you seem very experienced in the medical information, and when you say anabolic do you mean a pill form of drug for oesteoporosis? I started off on these bisphosponates but could not tolerate it because of my acid reflux. I am thinking of not starting on Denosumab now, because of the rebound when you are taken off, but not much out there as a second option as cannot have infusion again? What have you taken and how have you tolerated it? Thank you for your information.

[questionably in reply to Boneness]

Hi boneness, I only have experience with Forteo, but I enjoy reading pubmed.

There are two basic types of osteoporosis medications-- anabolic and antiresorptive.

The anabolics (bone builders) accelerate the normal process of bone building by stimulating osteoclasts (cells that clear away older fissured bone), and osteoblasts (cells that lay down new bone). Until Forteo 23 years ago, the only way to slow osteoporosis was to block the osteoclasts. The bones became more dense by collecting that older bone. This bone becomes avascular--losing blood and nerve supply and becoming more brittle. Still it prevents fractures. We aren't advised to take it long term because it incurs a small percentage of risk of becoming brittle enough to break and without a blood supply there is no protection against the decay of the bone, so you might get osteonecrosis of the jaw.

There are the two newest medications which work primarily by antiresorption They are both monoclonal antibodies that block the production of osteoclasts in different ways. They also add bone called modeled bone because instead of clearing away the fissured bone they add bone to the outside of the bone sort of like a scaffold. They both icur the risk of osteonecrosis and atypical femur fracture. They can add density to the bone quickly. Romosozumab Evenity is new and a full disclosure of disadvantages won't be evident for another decade as we conduct real world trials. Prolia has proven value except for those who experience the prolia trap or those who have adverse reactions to it and those who don't follow it with an antiresorptive.

The standard now with osteoporosis is to use the anabolic drugs first and preserve the gains with antiresorptives afterward, though it is becoming apparent the using the bisphonates first works only makes the anabolics less effective in the first 6-12 months.

Tymlos is seeming to be slightly more effective than Forteo, with alterations in the amino acid sequence.

You'll very likely have a good experience with Forteo or the generic. I'm hoping.

This is my favorite video on osteoporosis youtube.com/watch?v=Cd0YT-O...(Not working as expected?)

[hainses]

I have been on Denosumab for coming up to 10 years and have had no side effects. Just remember that once started you can't miss or even delay an injection in case of rebound fractures.

[Purplemallu]

Hi! My treatment with Denosumab started 10 years ago so I've now been moved on to Zoledronic infusion. I have nothing but praise for Denosumab & sorry I had to take a break from it. My bone. density scan shows I'm now osteopenic & that was 2 or 3 years ago. I cannot honestly say I had any bad side effects from the 6 monthly injections. My first infusion of Zoledronic acid was a month ago, I had awful side effects for 3/4 days afterwards & don't like the idea at all.

[love42france]

I use Plantir for my hair as I have suffered with alopecia all my life and have been on zolendronic infusions for the past two years. My hair is reasonably thick and looks in good condition. Various patches bald patches I have had have grown back. Plantir also lasts a long time. You can also get a lotion that you rub into your hair daily but I never got on with that.

[Mavary]

Hi I’m on Denosumab and have been for four or five years. I’ve got no problems at all. Of course we are all different and what one can have another can’t. Unless you try you will never know.

[dedeottie]

I have had denosomab injections every 6 months for 3 years and have had no side effects at all. Specifically no hair thinning. Everyone is different though. I am worried about coming off denosomab and having zalondronic infusions to prevent rebound fractures so I do understand your concerns. I am always worried about starting new medication for anything but to date I have never had problems. Good luck. X

[Boneness in reply to dedeottie]

Thank you for replying. That is good to know you had no side effects. If I go ahead with Denosumab I am very very concerned about eventually coming off, as the rebound oesteoporosis is very alarming! There does not seem to be a more suitable drug though for me at this point, as I have reflux so Boniva did not suit me at all, but the infusion was fine. I am tempted to have no drugs for a year and think about what to do.

[dedeottie in reply to Boneness]

Yes, that was why I went on to denosomab too. Alendronic acid really exacerbated my acid reflux. Why are you coming off the infusions if you don’t mind me asking. X

[Boneness in reply to dedeottie]

Bone density improved over 2 years but now not working for me, so told I have to change unfortunately.

[dcdream]

why did u have to stop your infusions if you were doing fine on them? Did they not work anymore?

[Boneness in reply to dcdream]

Unfortunately it stopped working with no further benefit. I am not liking the sound of the effect after being taken off Denosumab as rebound oesteoporosis is high with fractures and jaw issues I have read.

[dcdream in reply to Boneness]

Yes, that is a real issue for you to deal with. I read this site daily and it astounds me how these meds stop working and then you have to go onto other drugs and it's non stop until you are deceased. It seems to be a common problem for most of my friends who have been taking osteoporosis meds.

[Boneness in reply to dcdream]

Unfortunately this osteoporosis was past on from my mother who had hip replacements 5 times due to brittle socket. I just don't want to end up like her.

[agingfeminist]

I have had prolia for 5 years. No problems. You mention the problem of coming off it...whatever you take is probably for life...you can come off prolia and then take something else.

But are they investigating why you have osteoporsus so young? By the way, having a good diet etc is always important but it won't be enough. I hope you find a good specialist that you can speak to about all this. sending you good wishes

[ROSModerator Partner]

Hi Boneness ,

We're just popping in to wish you a very warm welcome to our community It's great to see you already connecting with our wonderful members!

It's really understandable to have concerns about side effects. Just in case you haven't already checked it out, we have information about Denosumab on our website: theros.org.uk/information-a...

Hope to continue to see you sharing here

Wishing you the very best,

Lulu

ROS Moderator

[Trec]

Thank you for opening this discussion. I am trying to decide on my best course of action re osteoporosis and medication. I cracked my Pubic Rama bone in my pelvis last July, after I tripped in my kitchen doorway carrying heavy bags. I was convinced it was the weight of the two bags that caused the break. After being started on Alendronic acid tablets while in rehab,I had dreadful abdominal pain and diarrhoea and after taking the 4th one at home I ended up in hospital with Colitis. I took no more tablets and asked my GP for a scan as wasn’t convinced I had Osteoporosis and needed medication. I had it in December and of course proved that I do have Osteoporosis. The GP said to try the Alendronic acid tablets again but confess I’ve not yet been brave enough to do so as I felt so ill while taking it but the alternative is Denosumab which doesn’t sound great either. I really don’t know what to do.

[Boneness in reply to Trec]

You could look into zolendronic acid infusion twice yearly? It certainly worked for me for 3 years, until it stopped working. I suffer with acid reflux so swallowing pills is not suitable.

[Trec in reply to Boneness]

Thank you, yes I’m looking into all the options though understand some medication is only approved in special circumstances in England yet freely available in Scotland. I don’t think there is a simple answer as all seem to have the ability to cause problems. I might even summon up the courage to take an Alendronic acid pill one morning even if just to discount it though maybe an infusion being so much stronger might cause more of a problem! Good luck with however you move forward,

[ABwn]

Hi boneless. When I was put on mtx for RA it caused hair loss. Rheumy specialist added folic acid -1 tablet a day for 6 days not to be taken on the same day as mtx. Still take it and it does stop hair loss. Good luck