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How many or who is on Prolia

Posted By Tommy 3 Years Ago
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How many or who is on Prolia

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No
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35.71% - 5 votes
I know someone who is on Prolia
35.71% 5 votes
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Tommy
Question Posted 3 Years Ago
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I seem to be the only one posting who is taking Prolia -even though I see it mentioned quite a lot

I asked both pharmacies in my district if they were prescribing it to anyone else and neither of them were.

Just wondering how long I can be on it, and if anyone has any experience -
PS I get bloods done regularly and am not due another DX for 18 months
Cheers
Tommy
Gwendoline
Posted 3 Years Ago
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I had one Prolia injection a couple of years ago but I am now on Forsteo. However, when I finish the course of Forsteo next year I intend to go on Prolia.
I think its use is becoming more common as within the past three months I know two people in my circle of friends who have had their first Prolia injection, one man and one woman, both in their sixties. Unfortunately neither of these people belong to NOS or are even bothered to hear any information I pick up and try to pass to them, so I can't refer you on. I also know someone else who is about to see a Rhematologist and is hoping to get Prolia. Not much help to you Tommyjohn, but at least you know there are other people out there having Prolia. Why don't you ask your Rheumatologist what proportion of patients are now on it or, indeed the NOS? I gathered from my own Osteo Nurse that it is quite common now, more so than when I had it a few years ago. Gwendoline.
Tommy
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Thanks Gwendoline :-)
I'm just curious about others opinions on it.  I did the 2 years of Forsteo - didn't bother me in the least.  I knew or at least I read up and found that it was just perfect for me. I've put on 8 lbs over the past year (I'm skinny) and don;t know whether to put this down to building muscle or a late arrival of the middle aged spread.  I have a belly on me today.  I'm a 36 inch waist and a 30 inch arse, but my wide waist is due to losing 5 inches of height so my internal organs have less room in there, so my tummy sticks out and this also restricts how much I can breathe heavily, as it is tightening my bottom lungs

Aw well onwards we go
Cheers
Tommy
Gwendoline
Posted 3 Years Ago
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Yes I've lost 5 inches too so am only 4ft 9 inches now. Like you this reduction in height has resulted in a big middle and squashed up insides! In fact the discomfort in the front of my body above the waist is the worst thing at the moment. For me, a woman, this change in body image and clothes shopping has caused me a lot of depression. But I guess there are worse things and it has taught me not to be vain......
Tommy
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I'm sorry to hear that Gwendoline - my mum got the Dowagers hump, and her throat was restricted for swallowing - her food had to be beaten in a food mixer - oh my god did she get cranky,  Her poor tummy was huge, and she got bed sores and belly sores etc.. 
She had been on treatment and was doing ok, but my other aunt got sick and she went to California to look after that aunt.  The aunt lasted 8 more years, and its so expensive out there that Mam couldn't afford the treatment.  So she eventually came home here to a nursing home.  But it was too late to intervene, her body had suffered too much and her organs had gotten weaker, especially her heart muscles.  This was 20 some years ago, and tell the truth the doctors hadn't a clue what or how to treat her.  Thankfully its a bit better today. 

One good thing is that I know how hereditary OP is and have been able to warn my family on every side to get flipping-well checked and not to take no for an answer.

I'm ever so grateful I found this forum too - others' experiences are kind of like a support group meeting

Cheers
Tommy
OJ
Posted 3 Years Ago
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Hi Tommyjohn and Gwendoline, thanks for posting your experiences on this drug.

How are your friends doing after the first injection Gwendoline?

So sorry you have had such difficulty Gwendoline, has there been any improvement for you on these drugs (Prolio and Forsteo) ?

I do hope for all there is some improvement on the bone meds.  Its worrying to hear people on the bone meds still losing inches in height, but we cannot know the circumstances for each individual.  

Do hope things stabilise for you both soon.

OJ x x


PS I've not experienced Prolia personally or Forsteo but I do wonder if for some the selective estrogen receptor modulators are more user friendly that the bisphosphonates.  https://www.nos.org.uk/health-professionals/~/document.doc?id=385  Perhaps it is that some tolerate better one or the other med.
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OJ - Diagnosed 2010, current T scores Spine -2.6, hips Left -2.5 and right -2.3.  Prescribed Calcichew D3 Forte, (I take one tablet a day)+ 1000iu minimum supplement of D3 colecalciferol summertime and during winter dose increased to 2000IU D3 daily


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3 Years Ago by OJ
OJ
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Gwendoline - I have just been reading about Forsteo, it says in the leaflet about depression:  https://www.nos.org.uk/newsite/document.doc?id=1665  see page 2, side affects.

Tommyjohn in the leaflet on Prolio it says about duration of the drug treatment (see Page 2, no. 5), suggesting a review with doc every few years.   https://www.nos.org.uk/newsite/document.doc?id=1658






OJ - Diagnosed 2010, current T scores Spine -2.6, hips Left -2.5 and right -2.3.  Prescribed Calcichew D3 Forte, (I take one tablet a day)+ 1000iu minimum supplement of D3 colecalciferol summertime and during winter dose increased to 2000IU D3 daily


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Gwendoline
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Hi OJ. My friends who had Prolia injections are fine, no side effects at all. One had theirs about two months ago and the other in the last month. I wasn't so sure about it when I had Prolia a few years ago as I had no energy at all afterwards, but just prior to having the injection I had had two spinal fractures and now realise those feelings of weakness and no energy may have been a result of the recuperation after the fractures.
I know about depression being a possible side effect of Forsteo. I admit I was in a bad place a year ago but am much more my normal self now following counselling at the Pain Clinic. I think if it had been the Forsteo I wouldn't have improved so vastly. It's often too easy to blame our medication for everything. I think my depression was just linked to a completely changed life following what is now four compression fractures and an insufficiency fracture of my pelvis. Then immobility resulted in blood clots on my lungs, so you see I had a number of life setbacks in a short period of time. Also, I was on morphine (am still on a low dose) and I am sure that affected my mood. I'm glad to say that I am now having weekly hydrotherapy, which I fund myself, get out for a walk each day and feel much better emotionally. I am now 16 months into Forsteo and had a bone scan at one year - no increase in bone density at that point. I was disappointed but my Consultant wasn't worried and said to carry on! I guess it's just wait and see as bone quality is hopefully improving. Gwendoline.
OJ
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HI Gwendoline, poor you that must have been an awful time to go through and depression in those circumstances wouldn't be unusual.  Bless you, thank goodness you are now experiencing an improved lifestyle, and the good news is your bones haven't got any worse but hopefully your bones are improving gradually with the increased activity walking etc and come next dexa scan I will keep fingers crossed you will have new improved bone density. :) x x

Thank you for giving feedback on your friends experiences of Prolia, it helps a lot, hope they will both have good results :)

Best wishes Gwendoline and to your friends.

x OJ x

OJ - Diagnosed 2010, current T scores Spine -2.6, hips Left -2.5 and right -2.3.  Prescribed Calcichew D3 Forte, (I take one tablet a day)+ 1000iu minimum supplement of D3 colecalciferol summertime and during winter dose increased to 2000IU D3 daily


Tommy
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Just to be straight OJ.  My loss of height and extending tummy came prior to my starting Forsteo - or maybe it was so gradual that I wasn't aware of it happening.  I did notice my tummy getting bigger and put it down to not being so active in the gym - but until the first set of measurements 1n 2011, I seriously didn't notice that I'd dropped 4 1/2 inches

However, I consider myself one of the luckier ones that I'm not allergic to anything it seems, or at least I don't get bad reactions from any medicines so far.

My biggest, actually one of my only complaints is the uncomfortableness (sic) in my tummy for the first 2 hours or so each morning.  I'm sure most of us with OP that have lost height will understand this nuisance :)
When I am King I want everyone to be able to take Prolia without side effects
Cheers
Tommy. 


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