 Posted 09/05/2011 18:58:49
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| After long and hard deliberation I decided to have a Prolia injection in early March as a scan had shown a further deterioration in my T scores and spinal fractures. I couldn't tolerate the biphosphonates. So far I can't see any negative side effects and pray this continues. One very noticeable thing though - for numerous years I have had very bad urgency urinary incontinence that has not responded to treatment, and I am currently on the list to have unlicenced botox treatment. However, 2 weeks after the injection there has been a massive and noticeable change in my bladder habits, for the better, improving my life immensely. Yes I still have problems but nowhere near as bad as previously. I know it's a long shot, but I'm wondering if there is a coincidence here - have any others who have had Prolia experienced similar? I would be extremely interested to know.
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Posted 20/05/2011 12:57:15
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| At the beginning of this month I had my first injection of Denosumab (which I believe is another name for Prolia) and was interested to hear of your experiences. For five years I was taking Fosamax but still lost bone density, and was very unsure about taking this new medication, especially as it is a six monthly injection. Thankfully, so far I have not experienced any side effects and am hopeful that this new drug will be helpful. I would be interested to hear if any one else has any experiences to share.
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Posted 21/05/2011 08:55:52
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| I had my first prolia injection in February and was very wary too.Haven't had massive side effects like the alondronic acid just pain in my groin which was instant after the injection and on and off since, I also suffer pain in my rib area which I think is possibly wind but that is a side effect from the Adcal calcium vit D I take too perhaps?I would like to be able to talk to others taking it but haven't found anyone, I didn't realise when I agreed to it that it was so new! I know they have done lots of trials but on 60+ and I am only 50 diagnosed in 2006. I am very fed up as had to have an emergency hysterectomy when I was only 32 but was never told I would be of greater risk for osteoporosis and given no information, it was only when I was suffering severe back pain that I was sent for an xray that it was diaognosed I knew very little about it and even then wasn't told how serious it could be.
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Posted 21/05/2011 11:48:32
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| Hi Elizabeth, I had a hysterectomy when I was 31, then had 10 years of HRT, my problems began when the HRT was stopped at 42. Was diagnosed with OP last September at 51 but who knows how long my bones have been bad. I didn't want the AA which was what I was offered so asked my GP for Strontium which he gave me. I have now been on it for 5 months no real side effects except very loose stools. Luckily as far as I'm aware I haven't had any fractures, have you? What was your Dexa scan scores, did the AA make any difference? Lulu
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Posted 21/05/2011 17:26:00
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Hi Elizabeth. My doctor was very reassuring about Denosumab/Prolia and although it is a new drug he told me that it has also been approved in the United States and that the side effects are very minimal. He told me that any skin infection should be treated straight away as complications could occur and that if I had major dental work I should tell the dentist that I am having this treatment. I was diagnosed in 2005 at the age of 51 and was shocked to find out that I have OP. So sorry to hear that you had other problems earlier on and do hope that this new treatment is positive and side effect free!
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Posted 22/05/2011 11:13:54
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I have worsening urinary incontinence. However i have not had any injections of Prolia. In fact I have just read about it as I hadn't heard about it for OP. My urinary incontinence has been getting worse and although I first thought it was all to do with a prolapse, after the hysterectomy it was no better. I am wondering now whether it is more to do with my spinal fractures and loss of height, squashing all the middle part (very technical) of the body and therefore maybe pushing down on the bladder a bit. I haven't read on the forum whether other prople have experienced this or whether it is something completely unrelated. Hard to know. It seems sometimes as though my whole body is ready to break down. I am 59 and feel too young to have all these 'older' problems. Of course there are a lot younger than me with horrendous related problems. Good luck.
Pippa59 (Aged 59, diagnosed OP January 2011 following x-ray. 4 vertrebral fractures. DEXA spine t-score -2.9. hips -0.9 -1.1. Following hip x-ray severe arthritis and planning a replacement op. Medication: Protelos and MST(morphine) & tramadol for pain.)
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Posted 27/05/2011 16:31:47
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Its good to hear from other people on prolia thanks for the replies. My scores were spine -3.5 and hips -2.5 , it was the spine one that the doctor was worried about as I suffer back pain and my spine is becoming quite curved now due to what they descibe as bone wedging not sure exactly what that means but it showed up on the xrays.At times I can tell something drastic happens in my spine.
I too suffer now from stress incontinence which I had put down to the prolapse bowel which I also have but perhaps its all due to the OP? I think that I may have noticed a bit of an improvement too though since the prolia but hadnt thought about it until I saw it mentioned on here! Im only 50 and don't want to feel old!! This is a great site though as I was beginning to feel very alone.
Thank you
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Posted 28/05/2011 20:29:35
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Hi Elizabeth S. I hope people out there will correct me if I am wrong, but 'wedging' is another medical term for fractures. After my initial x-ray, the doctor I saw said I had "some wedging" and I said, oh my osteopath thought that I may have a fracture because of the curvature of the spine. Then doc said, oh yes that is what wedging is, fractures, you have 4. So, you may want to go back to them and get that cleared up...just thought i'd say that anyway. Good luck.
Pippa59 (Aged 59, diagnosed OP January 2011 following x-ray. 4 vertrebral fractures. DEXA spine t-score -2.9. hips -0.9 -1.1. Following hip x-ray severe arthritis and planning a replacement op. Medication: Protelos and MST(morphine) & tramadol for pain.)
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Posted 29/05/2011 21:29:05
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| Hi Elizabeth, your scores are not that much worse than mine, I haven't noticed any curving of the spine yet, though my neck does protrude forward which is bad posture I expect. I'm very aware and always try to stand straight. I haven't noticed any height loss so perhaps the back pain is muscular and not connected to the OP. I just hope that I can make some improvement on the strontium. Lulu
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Posted 30/05/2011 20:11:52
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Obviously it is spinal fractures then I expect, they took x-rays again in february and blood tests before the prolia injection which are going to be repeated when I go back to the op clinic the end of june I think,so will ask then. My next injection is in August so fingers crossed I don't get any more side effects next time as I will give it one more go at least but am still worried about the long term effects of the prolia or any medication really. I am walking most days at least 30 minutes and excercise on the Wii but find it difficult to do more as work a 42.5 hour week as well as still having family living at home to cook for etc.. I have always eaten well but am trying to think about the alkaline/acid diet which some people have mentioned but need to read more up on it to learn more.
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