Osteoporosis GCA and PMR: wondering who has... - PMRGCAuk

PMRGCAuk

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Osteoporosis GCA and PMR

Ssratha profile image
30 Replies

wondering who has developed osteoporosis on pred? Are they having 6 monthly injections. How is that?

Any other feedback on prendisolone induced osteoporosis and treatment or other strategies?

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Ssratha profile image
Ssratha
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30 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Guidelines recommend bisphosphates (usually oral like Alendronic Acid) be prescribed from get go - particularly for GCA patients on high doses. Were you prescribed anything?

Many find AA is not necessary- we usually suggest a DEXA scan before agreeing to drug. Most find the Calcium/VitaminD supplement sufficient along with bone strengthening exercises to keep osteoporosis at bay.

You’ve probably seen this, but in case you haven’t - msk.org.au/osteoporosis/

Bennijax profile image
Bennijax in reply to DorsetLady

I have been advised to take the once yearly AA infusion for three years but I don't want to take it. I don't want to break my hip or spine either. Not happy bunny.

PMRpro profile image
PMRproAmbassador in reply to Bennijax

It isn't AA, it is a different drug.

Bennijax profile image
Bennijax in reply to PMRpro

Alendronic acid? What is the other drug?

PMRpro profile image
PMRproAmbassador in reply to Bennijax

Annual infusions are usually zolendronic acid.

pomeranion profile image
pomeranion in reply to PMRpro

Any more information on Reclast(zolendronic acid). My endocrinologist is recommending. Side effects, etc. Thank you.

PMRpro profile image
PMRproAmbassador in reply to pomeranion

All the data sheets are available online - the link rxlist is excellent and you can find all their listed adverse effectts by scrolling all the way down - it starts with consumer information and professional stuff is further down

rxlist.com/reclast-side-eff...

pomeranion profile image
pomeranion in reply to PMRpro

Thank you for this link. Very informative.

PMRpro profile image
PMRproAmbassador

I have never taken any bisphosphonates and my bone density has barely changed in 11 years on pred - it was good to start with and it has remained good.

Don't quite understand the rest of your question: how is what?

The bisphosphonates come in various forms. The usually used version is alendronic acid (Fosamax), an oral tablet taken 1x a week. Some people have difficulty taking the tablet and one alternative is a bisphosphonat infusion once a year. There is also a drug called denosumab (Prolia) which is 6-monthly subcutaneous injections. Another for severe loss of bone density is Forteo which I think is daily injections .

Ssratha profile image
Ssratha in reply to PMRpro

"How is that" is referring to the six monthly injections of prolia.

PMRpro profile image
PMRproAmbassador in reply to Ssratha

Because that is the way it is used.

Ssratha profile image
Ssratha in reply to PMRpro

No, i mean how are the side affects. How do people respond to this drug.

PMRpro profile image
PMRproAmbassador in reply to Ssratha

I think you might be better starting a new thread with a clear question: Is anyone on 6 monthly injections of Prolia/denosumab for osteoporosis? Can you tell me your experiences please.

Ssratha profile image
Ssratha in reply to PMRpro

Im Australia and this is how we speak. Some cross culturally training needed here. 😉

PMRpro profile image
PMRproAmbassador in reply to Ssratha

Probably, since while we have a few members in Australia the vast majority are in the UK with some in the USA. But good written English is the same the world over.

Bennijax profile image
Bennijax in reply to PMRpro

with side effects, possible necrosis of the jaw, hair loss, etc etc.

PMRpro profile image
PMRproAmbassador in reply to Bennijax

Not quite clear on the point you are making to me.

If you mean Prolia, can't speak to hair loos, he has very little anyway, but it isn't inconveniencing my husband after having it. Many adverse effects listed were seen occasionally and rarely during the clinical trials and after.

Do you take OTC painkillers Have you read their potential adverse effects? And are you aware of the adverse effects of a broken hip or spinal fractures? It is a balance of benefits versus adverse effects.

I’m one of the unlucky ones who went from osteopenia to osteoporosis ( with accompanying thoracic vertebral fractures) while on prednisone. I get Prolia injections. Have no idea if the osteoporosis would have developed anyhow. My best to you.

Ssratha profile image
Ssratha in reply to

Thank you. So sorry to her that. Mi e sme,. Oestopein to osteoporosis Do you have any side effects from the prolia.

in reply to Ssratha

Only a very slight headache for a couple of days. 🙏🙂

Ssratha profile image
Ssratha

So there is a class action against the manufacturers of prolia in America from pople who have suffered huge side effects . It is called zenusumab here. I am in Australia. Have a read of reviews of prolia and its not a pretty story for many. Clinical trials mean nothing to me, they want to sell the drug. I am seeing a homeopath who specialises in osteoporosis and a TCM doctor who specialises in overall affects of PMR. I have also started specific qi gong routines for increasing bone density. Will report how this all goes, cos i, unfortunately for me in some ways lol, dont trust pharmaceutical companies or modern medical doctors. Medicine is an industry. I have read prolia can build bone density, the way it does it is not great and the bone becomes very brittle and if you do have a significant fall the bone shatters like glass. To decide anything i believe in research research research, both sides of the discussion. And yes it is a balance, re deteriorating bone and a fall and the very high risk of life quality threatening side efgects. Im only 68, fit and healthy other than all this. My system is sensitive to medication and I will make my choices guided by my deep knowing and understanding of myself, my body and the knowledge that we all die. 🙏🏼

PMRpro profile image
PMRproAmbassador in reply to Ssratha

I didn't think that related to Prolia, that relates to the bisphosphonates such as alendronic acid where in some patients the bone that is formed after longer use of it (about 3 years or more) is different in structure and can break spontaneously. However I have NEVER seen anything claiming the bone shatters like glass. The problem with Prolia is different: it builds bone very efficiently and originally the intention was it should be used for a couple of years and then stopped. However, in some patients it seems there is a rebound loss of bone density in the first year after it is stopped that can lead to spinal fractures. As a result, it is either continued indefinitely or the patient is switched to oral or infused bisphosphonates which prevent this loss of bone density.

Cliniucal trials are not done to sell a drug - they are done to establish if it works for what it is intended and to see if it is safe.

It all depends what your dexascan shows - there are doctors who want to use medication whatever the results are. Loss of bone density when on pred is not inevitable - several of us have not had any change despite only taking calcium and vit D. On the other hand, if your bone density is very low and you are at risk of a fractured femur or spinal fractures, the adverse effects of them can be life changing, taking away the ability to live independently and even walk. A single trip and a fractured vertebra has left my husband, the same age as you, unable to live independently for over a year now and for a time he was barely able to walk to the bathroom. He still can't walk much more than a hundred yards and that is with a rollator. It is your choice if you wish to take that sort of risk.

HeronNS profile image
HeronNS in reply to Ssratha

Denosumab is the name of the drug, Prolia the brand name.

baxternoni profile image
baxternoni

I have. Not treating it other than with supplements.

Ssratha profile image
Ssratha in reply to baxternoni

Thank you for encouragement 🙏🏼✨

Ssratha profile image
Ssratha

Some interesting info

centerforhealthjournalism.o...

aboutlawsuits.com/prolia/#:....

PMRpro profile image
PMRproAmbassador in reply to Ssratha

I wouldn't describe that as info - opinions maybe.

Having a black box warning doesn't mean the drug is bad - it means there needs to be care in using it in certain contexts. The Pradaxa I take as an anticoagulant has a black box warning because of an interaction with another drug if I take them at the same time, I space then by 2 hours. So does metformin for diabetes which is taken by millions of diabetics and NSAIDs like ibuprofen, and ALL products containing paracetamol/acetimophen which you can buy OTC in any supermarket warning against taking cold remedies containing it without checking the total dose. Innocent little old Tylenol can kill if you take too much.

The problem leading to the fractures has been identified - like many such problems they are only identified once a medication is out in the public domain and being used in large numbers. The idea with Prolia was it should be used for a couple of years and stopped - but stopping allows a rebound loss of bone density. Now the recommendation is to continue it or replace it with more traditional bisphosphonates.

Don't misunderstand me - I am not a supporter of using these medications unless there is a good reason and they must be used in accordance with the warnings. But I also am very sceptical when I read articles that support an action that will make money for lawyers. Don't believe everything you read on the internet at face value.

Ssratha profile image
Ssratha in reply to PMRpro

I dont. But i think where there is smoke there is usually a fire. I say dont believe everything doctors and pharmaceutical companies tell you. ✨

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Ssratha

But to be balanced, don’t believe everything you read on the internet either.

PMRpro profile image
PMRproAmbassador in reply to Ssratha

Especially when it comes from a group who may be making mmoney when you believe all they say. Pharmaceutical companies aren't innocent but they are subject to much tighter regulation than a lawyer seeking custom and supplement sites looking to make a sale.

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