Alternative to Denosumab??
Posted , 8 users are following.
I have been diagnosed with osteoporosis for 5 years now t scores -4:3 and -3:7. I was not happy to take alendronic acid as I have gut problems and tend to be allergic to lots of things so have managed to keep t scores same for 5 years with diet supplements and exercise. However in last scan there was vertebral wedging so consultant wants me to take Denosumab injections . I almost agreed then looked up side effects and have decided not to-i have another appointment at end of month with the consultant - not sure what I can say to her any suggestions for alternatives/ experience of Denosumab?
1 like, 21 replies
sue94147 barbara98742
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I could'nt take AA or Risedronate due to stomach ulcer. Hospital advised me to have 6 monthly injections of Denosumab. I had first injection beginning of October, so far have not felt any side effects so hoping all ok. Ideally would rather not take any medication but have been persudaded its for the bests
barbara98742 sue94147
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jennifer1946 barbara98742
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Hello! I am due to have my fourth injection next month..Like you I was very apprehensive about starting it and every time I felt off colour I blamed it on the injection!But I really don't think I've had any side effects. I was really more worried than anything about jaw necrosis! Honestly,the internet scares you to death sometimes! I asked my dentist and she said that the medication only stay in your body for 6 months unlike Fosamax etc which stays for years so I intend leaving a month in between the time for my next injection and getting a full dental check up so that if I need work I can get it done before the next dose of Denosumab!...Also my orthopedic surgeon said it will take 4 years to see if there's any difference in my bone density so I am going to carry on for 2 more years and if there's no difference I will stop it! It's so difficult to know what to do but at least we have this forum where we can share experiences! Stay well and good luck. X
barbara98742 jennifer1946
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Thanks for this Jennifer-osteo necrosis of jaw is one of my big worries also risk of long bone fractures increasing! Internet is a blessing and a curse giving us so much information! I also read it affects immune system-mine isn't great after having chronic Lymes and I am hyper sensitive to chemicals/preservatives etc! Wonder if anyone out there has taken Denosumab after having Lymes?
kathleen65757 barbara98742
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I am just doing natural and hoping it sees an improvement in next can.
kathleen65757 barbara98742
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barbara98742 kathleen65757
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I am worried that having had Chronic Lymes for so long it will affect my reaction to any drugs!
kathleen65757 barbara98742
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I just recently read a bit about Lyme disease. How does that affect you?
Did you feel the wedging? Was there a sensation?
Everyone is different so one treatment may not be good for all.
Maybe a physician could advise you or at least refer you on.
diana57263 barbara98742
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If you google 'denosumab legal cases' - it will reveal more info as to whether there are ongoing cases - it seems there has, check this out!
Juno-Irl-Dub barbara98742
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Hi Barbara, have just seen your posts. I had T scores very similiar to yours and was prescribed Forteo (daily pen injection for 2 years). It worked very well (last scan showed improvement of 11%) and had minimal side-effects.
No fractures.
As you say your wedge vertebrae could indicate compression fractures so do consider medication as it has never been shown that diet, vitamins, and exercise could result in result in any improvement significant enough to reduce your fracture risk, though may benefit those on the margins of an OP diagnosis. Forteo has an 'edge' over Denosumab as it does not affect the immune system. I have PMR and it was for exactly this reason that my Rheumatologist prescribed Forteo. Both these medications are the main choice for those with severe OP.
Discuss all this with your doctor or specialist.
All medications have side effects - I have a close friend who went into anaphylactic shock having taken aspirin and would have died had she been alone at the time.
OP meds are no different but severe side-effects are rare. However, severe effects from spine fractures are certainly NOT rare and can have life- changing consequences.
Kind regards, J
barbara98742 Juno-Irl-Dub
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Juno-Irl-Dub barbara98742
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Hi Barbara, I'm in the ROI, your nest door neighbour! I know that Forteo is available on the NHS but, because is is expensive, it's reserved for those who : 1) have severe osteoporosis 2) cannot take the bisphosphonates (BFs) because of stomach problems and 3) have fractured while on BFs or other medications.
Prolia is also costly though cheaper than Forteo. If I were you, I'd argue the 'compromised immune system' angle . . . J
barbara98742 Juno-Irl-Dub
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Anhaga barbara98742
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Trust your instinct. Osteoclasts are part of the immune system and denosumab is even harder on the osteoclasts than AA and co. Forteo is supposed to be particularly good for improving spine density, and because it's only approved to be used for two years you won't have any doctors trying to keep you on it indefinitely, which happens with bisphosphonates, and that's when most of the serious side effects occur.
kathleen65757 Anhaga
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If the bones are a living thing it stands to reason we should be able to support them naturally.
Anhaga kathleen65757
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Yes, I read that more than interfering with the action of the osteoclasts (bone remodelling cells), which the bisphosphonates do, denosumab actually poisons them. I believe Forteo (teriparatide) acts to encourage the osteoblasts (bone building cells). Like the other meds it has serious side effects and is only allowed to be taken for two years. I think it's a case of weighing the risks, if one has a spine which is already fracturing it could be the lesser of two evils. Of course the best path would be much better education when we are in our bone-building years, and prevention of bone thinning as much as possible so that none of us get to the condition where we are faced with these terrible choices.
Juno-Irl-Dub Anhaga
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Hi Anhaga, have there been recent reports of notable " serious side effects " with Forteo ?
If there has, I've completely missed this important information?
The most concerning possible side-effect when Forteo first came to the market in 2002 (?) was of osteosarcoma. This was reported in some of the laboratory rats who were tested the drug.
Then started a 15 year follow- up by independent researchers involving hundreds of thousands of patients using this drug in the US and Denmark. This survey, now over halfway through it's duration, has found NO increase in occurrence of osteosarcoma in patients using this drug as compared with those who never used it.
Also the the ' maximum two-year use' advice is now under review.
I used Forteo for two years and had some mild side-effects in the first three months only.
I followed up with Actonel, in my case advised for 3-5 years. Also no problem with side effects here.
Juno.
Anhaga Juno-Irl-Dub
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As far as I know the issue is with potential for osteosarcoma. However if you look up side effects there are many, some of which are potentially serious, like fainting, impaired thinking and reactions, and many others. So it's not a benign substance and some people are going to have a bad reaction so it's good to be aware of the possibility. If you don't have any side effects, that's great. For you. Like prednisone for polymyalgia, some people have virtually no side effects, other people suffer a lot, and there's everything in between. Like all these meds, you weigh the risks.
barbara98742 Juno-Irl-Dub
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Juno-Irl-Dub barbara98742
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