Kaarina5 years ago

If it was me I would give the NOS helplines a call and have a chat with one of the nurses. This link is a list of the OP drugs available at this time and information about them. nos.org.uk/about-osteoporos...

By the time you have looked through that and had a chat with a nurse you will know more about it than your GP.

You can ask the nurse at NOS if you can continue with Prolia even though you have fractured.

Do let us know how you get on at your appointment with your doctor. I wish you well.

Gemini71 in reply to Kaarina5 years ago

Thank you Kaarina,I gave the nurses a ringand she said it's quite alright to request to go back on Prolia,so that's what I shall probably do.

Your right there is a lot of information there,still reading it.👍

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Kaarina in reply to Gemini715 years ago

So pleased you gave the helpline a call. Sounds like you have a plan and you have the back up of specialist nurse advice too. Knowledge is power! Do let us know how you get on.

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HeronNS5 years ago

I'm by no means an expert but I think the main problem with stopping Prolia is the risk of rebound fractures. This is why you do need something. Whether continuing with Prolia indefinitely is the best course I don't know. The risk of microcracks increases after a few years on this drug. I know you'll need to carry on with medication now that you're on Prolia, but are you also doing all the natural things we go on about? Appropriate exercise, healthy diet and a few supplements (Vitamins D and K2, and magnesium as well as adequate calcium either through diet or supplement)?

Kaarina in reply to HeronNS5 years ago

I was told this by a doctor I see about my osteoporosis too, that rebound vertebral fractures can occur after discontinuing Prolia.

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Gemini71 in reply to HeronNS5 years ago

Are you saying micro cracks increases,even if your on Prolia.

As for vit D etc I will have to see,because since she took me off the Prolia my bloods are all over the place. Exercise is also difficult as I suffer Emphysema,( I know I'm falling apart😂) but I don't sit around a lot,it's just short burst.

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HeronNS in reply to Gemini715 years ago

Sorry, I live in a different time zone and only just seeing this. I hope your appointment went well and you got the reassurance and a way forward with your treatment. Really glad Kaarina was able to give advice as I don't know any more than I said yesterday. As Kaarina said, the fact you've been off medication for some time without issues is a good sign. I do know someone else had to come off Prolia and she was offered the medication which encourages the bone building cells (osteoblasts) rather than damping down the bone remodelling cells (osteoclasts). It's teriparatide, and this one really can only be taken for a couple of years, but I think doctors believe it's a good bridging medication as it should counteract effects of Prolia withdrawal. Of course, like everything, there will be contraindications for some people. So there are options out there, and the experts should know about them.

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Gemini71 in reply to HeronNS5 years ago

Hi Heron,I started teriparatide,last July,but I suffer with chronic stomach pain,and it enhanced the pain. That's what my problem was. But all the same thank you for your reply,it did encourage me to give the NOS another ring.

But I've seen my nurse today and after a blood test this afternoon she will start me back on Prolia next week.

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Gemini715 years ago

It's not that I don't want medication for my Osteoperosis,it's just that I would like to go back to Prolia. So I'm now a bit confused,are you saying that since I've stopped taking Prolia,I'll get fractures.

Or do you mean it would not be any good me going back on Prolia. Which was my plan ,because I no I have no side affects from it.

Please put me right as I have my appointment this afternoon.

Meaning in case I'm not making myself clear. I want to go back on Prolia.

louisewj in reply to Gemini715 years ago

I was told at City of Hope (repeating myself) I had been on it for three years and they now find you CAN have side effects staying on it longer and need to change to something else (I don't have any yet either). I do not yet know how long you have to stay off to go back on and that is something you need to talk to your medical professional about. I'm surprised they kept you on for five years.

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Gemini71 in reply to louisewj5 years ago

To repeat myself,like I said to Mystical unicorn, in the US you probably do things differently to the UK.

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Kaarina5 years ago

I appreciate that you do wish to take medication and it was taken out of your hands to have a prolia injection because of your wrist fracture after a fall.

You have been without any op medication for quite a few months now and have not had any vertebral fractures. I cannot advise you but you could call the NOS nurses again and ask about possible rebound vertebral fractures on stopping prolia and not going onto another medication very soon after. Also mention if you did not yesterday that you have already been on Prolia for 5 years. This may be fine but I was of the opinion one usually took it for around 3 years.

I can understand your predicament and appreciate that you wish to have the prolia injections as you had no side effect from the drug.

Gemini71 in reply to Kaarina5 years ago

Hi Kaarina,I've just rang the NOS nurses again,and I must say the one I spoke to sounded much more professional The the one I spoke to yesterday.

She said there's no reason at all for me not to go back on Prolia. It used to be 3yrs,but trials have now put it up to 10yrs,and it may even advance further in the future. But she put my mind at rest,so as long as I'm on something Prolia will be fine.

Thank you for your quick response and patience Kaarina ,you've also been of a great help to me. I will let you know how I get on later.👍

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Kaarina in reply to Gemini715 years ago

You are more than welcome, Gemini. So pleased if I have been of help to you. Yep, as said yesterday, you have a plan, with backing from the NOS helpline. You feel comfortable with your decision - go for it.

I have learned something too today, regarding it is reasonable to stay on this drug for 10 years instead of 3 years.

Speak laters!

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Gemini71 in reply to Kaarina5 years ago

Hi,Kaarina,Alls well I'm back on Prolia,she did suggest the infusion but I said for the time being I would rather go back on Prolia.

So once again thank you for your help especially by putting me in touch with the NOS. good to know Take care of yourself.

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Kaarina in reply to Gemini715 years ago

So pleased that you were listened to and are back on the Prolia as you wanted. Better the devil you know than the devil you don't, as they say. A good appointment for you and you probably felt confident because of what you had learned from the NOS helpline. Look after yourself.

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KidneyCoach5 years ago

I had one dose of prolia and refuse any more. I did have a break in my leg, just walking. I personally would never recommend it for anyone. Here in the USA, we are told the MAXIMUM is TWO (2) years then must follow a 3-5 year break in time before resuming it. Blessings

Gemini71 in reply to KidneyCoach5 years ago

I think the USA work differently to us. I'm quite happy with it. Maybe if your bones are in a bad way to start with ,Prolia,wouldn't be good enough.

Just a thought.

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Kaarina in reply to KidneyCoach5 years ago

I would not recommend or recommend any of the OP drugs to someone else. It is something that we have to find out for ourselves, depending on our age, how severe our OP is, other conditions we may have and so on. We are all different and what may suit/work for one person will not suit/work for another, as we read on this forum.

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louisewj5 years ago

When I was at City of Hope last December, they informed me I had been on Prolia for three years. Also, they have learned that after three years you will start to have rebound having the side effects and need to go off Prolia and go to another medication. Will find out in June what that is when I go back. Also, once Prolia is stopped you start to lose any benefits gained. Ain't that great news!! You see the ad and sounds like you'll do wonderful things building your bones. Actually, one side was barely helped and other wasn't.

Gemini71 in reply to louisewj5 years ago

Well I took Kaarina advice and rang the NOS,and that was not what I was told,neither was I told that by my nurse today.

Also paying private in the US,they will tell you anything for money.

I have friends in the US.

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yogabonnie5 years ago

just curious.. what is was your last dexa score?

TommyJohn5 years ago

There are so many different stories about Prolia coming from the US. I'd be inclined to listen to what the UK NOS nurse has to say. Also it is my belief that the Canadians are fairly far advanced in OP treatments.

I've gone through the 2 years of Forsteo and I am due to get my 10th Prolia next August (I'm in Eire). The consultants are going to have a discussion with me sometime after that, probably around next November, as I will have been 5 years on the Prolia. They are of the opinion that I may do another 2 years of Forsteo - or I can take the annual infusion. This is in the future and things are changing so fast that I may be 'eligible' for a further 5 years of Prolia, depending on the outcomes of research that is ongoing.

My DX scores started out at -4 to -5 and have not improved... but neither have I had a fracture since I started treatments over 7 years ago. Unfortunately I don't eat well as having lost 5 inches in height, my internal organs are 'squashing' my stomach reducing the room for food, hence diet doesn't improve things either

I am one of the lucky ones that never get side effects, my heart and lungs are still working well (for my age) so far. I learned to live with the discomforts and am always aware of the pure agony of the 4 vertebra fractures I went through before diagnosis.

Its a bit of a dilemma, I can take anti-inflammatory medication, combined with anti-gastric for relief, but because of the damage that can do to the osteoclast/blast, it is not recommended for long term use

Cheers

Tommy

Gemini71 in reply to TommyJohn5 years ago

Hi TommyJohn,Just to reply to your post. Have I got this right,you were on Forsteo,first,then went on Prolia.? I might have read this wrong.

I was only on Forsteo for about 2 maths due to stomach pain,not due to forsteo,I already suffer chronic stomach pain,but the Forsteo just enhanced it to unbearable. I didhave 5yrs of Prolia,but due to a broken wrist,which was a really bad fall on my hand,which anyone would have done. I was put on Forsteo. The NOS nurses say you can be on Prolia for 10yrs. I always think stick with what suits you,but it's not always the one doing any good.

Because I have such a lot of health issues,I think they find me complicating.RH being another problem for me,because I'm taking anti inflammatory tablets as well.

I don't think I've ever been sooooo confused,I don't even know my DX score,I've just took it for granted they know what there doing. 🤔🤔🤔

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Kaarina in reply to Gemini715 years ago

Hi Gemini

If you have had DEXA scans you are entitled (it is your right) to copies of them. The easiest way is to ask a a receptionist at your surgery to run you off copies for you. If you have had more than one DEXA you can then compare them. If you have had one DEXA you will be able to see for yourself your report and T scores etc.

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Gemini71 in reply to Kaarina5 years ago

Hi,Kaarina,My hubby asked the receptionist at my GPs,and she said we haven't got any,just a letter from my nurse,so he asked for the copy of that,and it stated that my bones were doing ok. So strange because I had a bad fall,there suddenly not ok.

Still my hubby said he's going to ask her on Wednesday for a copy.

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TommyJohn in reply to Gemini715 years ago

You got it right Gemini... I did 2 years of Forsteo and it didn't bother me. Then went straight to Prolia. I wonder if its recommended or allowed to take the Prolia for 10 years. I get a reminder phone call from Amgen (the makers) and I have asked them to find out for me what is the recommended length of time to take it. I can't get an answer. One other thing, a broken bone is not the same as having a fracture - as you more than probably know - I wish I knew when I fractured my elbow from a slight fall, many years ago. I mightn't have had to endure the several vertebrae fractures I did have

I'm not going to bother much till next November, then I have decisions to make. I believe that having the knowledge to ask the proper questions when dealing with the consultants is paramount.

What Your T-score Means. According to the World Health Organization (WHO):

A T-score of -1.0 or above is normal bone density. Examples are 0.9, 0 and -0.9.

A T-score between -1.0 and -2.5 means you have low bone density or osteopenia. Examples are T-scores of -1.1, -1.6 and -2.4.

A T-score of -2.5 or below is a diagnosis of osteoporosis. Examples are T-scores of -2.6, -3.3 and -3.9.

The lower a person’s T-score, the lower the bone density. A T-score of -1.0 is lower than a T-score of 0.5 and a T-score of -3.5 is lower than a T-score of -3.0.

Cheers

Tommy

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Gemini71 in reply to TommyJohn5 years ago

Thank you TommyJohn, That's useful information,and you have put mind a rest. I will ask my nurse on Wednesday for a copy of my scan,then I'll check it out. However I did get a letter she sent to my GP,that states the first 5yrs on Prolia have showed some improvement with BMD,and my consultant recommends another 5yrs on Prolia. But of course in between I had a bad fall and broke my wrist. The fall I had anyone would have broken a bone.

But thank you for your reply. All the best.

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Kaarina in reply to Gemini715 years ago

Hi Gemini, I hope you get a copy of your DEXA and report very soon from either the receptionist at your surgery, your GP or your nurse when you see her on Wednesday. Your report is somewhere and you are entitled to a copy. All the best on Wednesday.

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