 Posted 10/07/2010 17:43:28
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| I've had to stop taking Alendronic Acid after it making me very ill for almost four weeks with vomiting, acid indigestion, dizziness, I was also experiencing feelings of anger/anxiety that have now gone since stopping the meds. My GP referred me back to my rheumatologist (whom I see for Sjogren's syndrome) for advice where I saw the nurse clinician. She recommended the Strontium and said she would write to my GP to prescribe it. When I went for a follow up appointment with my GP she wrote me a prescription for resedronate which I took to the pharmacist. I then discovered that this medicine is almost the same as Alendronic Acid so I gave it back to the pharmacist as I absolutely refuse to take it due to been so ill previously. The pharmacist also said it is unusual for Strontium to be prescribed now. I rang the hospital to speak to the clinician but was put through to the secretary who confirmed that the letter was requesting resedronate, and that was also stated in my notes. The clinician has rang me back this week, I asked her about the Strontium and she said it's not suitable for everybody, perhaps due to my age (47), and as the rheumatologist is on holiday suggested I go back to see my GP. Does anyone truly know anything about these meds?, I am absolutely loathe to take another if there's chance of it making me so ill for so long again, but it seems the powers that be aren't interested unless you follow their protocol of meds in a particular order. Yet both the clinician and my GP have both stressed how important it is for me to be on medication due to my T Scores and my age. To be honest I think I'll take my chances with no medication and the fractures, after all it's usual to have a break if you have a serious fall anyhow, but it's not normal to poison your system with meds that make you so unwell for weeks on end even after you have stopped taking them. That's my personal belief. I am even more confused than ever over this issue, and can't help wondering if it's a lot of fuss over nothing, any help, advice or opionions would be greatly received. Thank you all.
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Posted 10/07/2010 20:52:33
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| Hi Mrs W.......Thank you for putting into words all the feelings I too have about Osteoporosis medicines. I am 54 and have just been diagnosed with Osteoporosis. After reading about Actonel and other similar medications, I am very wary of taking them. I may have Osteoporosis but the last thing I want to do is damage my body further. These medicines also change the way your body makes bone and there is some suggestion now, that after many years taking them, your bones may become more brittle. I discussed this with my GP and she listened carefully to me. I explained that my Aunt now 81years old had Osteoporosis and had back pain and lost height but she has had a long and active life and there is nothing to say she didn't have the problem at the same age as me, it's just she was never tested. She said she would back me in not taking these drugs until my next scan in two years time, in the hope that with exercise and Adcal I may be able to halt the deterioration of my bones, if this does not turn out to be the case, I will reconsider then. It's scary but starting these drugs at 54 and taking them for years, may just make things worse in the end. Good Luck as you try to decide what to do.
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Posted 11/07/2010 09:51:49
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Hi Mrs W,
Sorry to hear you're having problems with your medication. I think it's always best to be upfront with doctors even though I know that can be very difficult and sometimes it's easier to put these things in writing to them. If you're not sure about a particular medication then you should let your doctor know that you are not happy about taking it and discuss with him/her other medications. My consultant once told me that it's very important that doctor and patient work together and that it's no good a doctor prescribing something a patient refuses to take ! If a doctor gets what they call a "non-compliant patient" it's the doctor's fault if they're not prepared to listen and discuss with the patient....well that's my personal opinion. I hope you find a solution.
Osteoporosis - Strontium Ranelate, Dekristol vitamin D3 20,000 IU/week, weight lifting, walking and vibration platform exercise, alkaline loaded diet, vitamin K2 MK-7 100mcg/d, K2 MK-4 5mg/d. Diabetes - Repaglinide, low carb diet and exercise. Congenital heart defect - Omacor and CoQ10
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Posted 12/07/2010 05:08:59
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Hi Heather, You sound just like me. When I was told I had osteopenia two years ago I was 48 and had had an early menopause. Because I was always thin with a BMI of 17.5 I wanted to try and improve things myself without taking drugs - so I increased my weight and did a lot of weight-training and improved my diet with at least 1,500 mg of calcium a day. I couldn't believe that all my hard work for two years resulted in even more of a dramatic loss of bone on my dexa scan. I couldn't work out if I was doing something wrong - but perhaps if I had looked more at my Vitamin D3 levels I may have done better, as a recent first test showed I have low levels, so the calcium was not being metabolised properly. I did refuse HRT and biphosphonates - the first because my mother had cancer and so did my sister last year; and the second because of its side-effects. Really I didn't want to take anything but my doctor said that if I tried exercise for another two years just with supplements of calcium and vitamin D there was a high risk of me fracturing a bone especially as my lower spine has deteriorated significantly. As I am at the start of my 50s I still want to enjoy things like hill-walking and cycling and I don't want to worry about falling down and fracturing bones. Therefore I have decided with trepidation to take strontium ranelate. I believe that if you find a doctor who is well-informed and does not feel threatened by you having an enquiring mind and doing research on drugs - the pros and cons that he is willing to discuss with you, you will feel more confident about taking one of these drugs. I am prepared to try this drug out for a few years.. see what happens to my DEXA scan.....rather than risk a hip or spinal fracture and maybe... just maybe... be able to go skiing again without being frightened of a consequences of a fall.
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Posted 12/07/2010 15:09:37
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| Hi Mariannehk.... Thank you for taking the time to share your story. Two years ago, it does sound as if you went through the same thought process as myself. I am so sorry the outcome was disappointing and it does make me wonder now, if I will be able to improve my situation. I did read about Strontium Ranelate but was concerned about the increased risk of blood clots, as both my parents have had strokes. Like you there are so many things I want to do in life. I have a daughter living in Switzerland and would love to try skiing!
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Posted 12/07/2010 18:28:59
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Hi Heather,
When I read about the blood clot (deep vein thrombosis) risk with strontium ranelate I must say I initially found that rather scary, but I discovered the incidence of them in the trials by Servier (the manufacturers) were: "2.7% in the Protelos group and 1.9% in the placebo group." So that's nearly as many blood clots in the placebo group, ie in those taking a dummy pill.....which also shows, I suppose, the incidence of blood clots in 'normal' postmenopausal women. But Servier suggest that anyone with a history of deep vein thrombosis should use strontium with caution.
I do lots of hill/mountian walking when I'm on holiday - it is one of my favourite things to do ! I would feel devastated if I fractured my hip or spine so I couldn't clamber up and down hills anymore.
Osteoporosis - Strontium Ranelate, Dekristol vitamin D3 20,000 IU/week, weight lifting, walking and vibration platform exercise, alkaline loaded diet, vitamin K2 MK-7 100mcg/d, K2 MK-4 5mg/d. Diabetes - Repaglinide, low carb diet and exercise. Congenital heart defect - Omacor and CoQ10
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Posted 13/07/2010 03:04:50
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Hi Heather, As Annabel says in her post, the risk of DVT's is low and a family history of strokes suggests you should bring this up with your doctor before deciding which is the right drug for you. Family history-wise my sister who is 52 had a couple of strokes in 2000 after a long 20 year history of migraines and FINALLY it was investigated and found to be caused by a patent foramen ovale... a hole in the heart that has now been closed.... after years of her being told it was emotional stress! I take Vitamin E every day rather than aspirin as a precaution as I used to have terrible headaches and chest pain on the Pill in the past (25 years ago)and my doctor is fine with that, Vit E also helped reduce my hot flushes which were driving me nuts in this hot climate
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Posted 13/07/2010 22:13:08
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| Thanks Mariannehk and Annabel Lee for your helpful comments. Will take them all on board. Lets hope we get the help we need, make good progress and enjoy life to the full !!
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Posted 14/07/2010 08:48:24
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| Thanks to all for sharing your stories and voicing many of the things that are running through my head. I am so young to have this disease (35, and possibly have had it longer - who knows?) and right now can't afford medications. But after doing so much research, I don't feel that any of the drugs offered seem effective enough to be worth their risks. That is terrifying! It's so horrible to have a lifelong disease with no cure. I am also someone who enjoys walking and being active, and it's doubly frustrating that all of my weight training and other activity did not save me from this disease.
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Posted 14/07/2010 09:05:19
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emmera (14/07/2010)
Thanks to all for sharing your stories and voicing many of the things that are running through my head. I am so young to have this disease (35, and possibly have had it longer - who knows?) and right now can't afford medications.
Hi Emmera,
I am wondering if you don't live in the UK as you also wrote in an earlier message:
emmera (09/07/2010)
I have no primary care physician and no health insurance so for the moment I have to just sit around in fear and wonder if there's anything I can be doing on my own..
If you're in a country with no national health service then I can understand some of your fears in that you cannot even see a doctor. A lot of the medications we have been writing about are only available for post menopausal women. I would have had osteoporosis from when I was in my early twenties as I had serious anorexia in my teens and twenties and no periods for many years, but they didn't have DEXA scans in those days so I only found out I had osteoporosis when I had a scan in my early 50s. I had been living with osteoporosis and had never fractured - I put this down both to not falling and to gaining a normal weight and resumption of my periods in my 30s. Is there a helpline in your country who you could contact to get specific advice ? The forum moderator here the other day wrote that people sometimes contact the NOS helpline from abroad too.
Osteoporosis - Strontium Ranelate, Dekristol vitamin D3 20,000 IU/week, weight lifting, walking and vibration platform exercise, alkaline loaded diet, vitamin K2 MK-7 100mcg/d, K2 MK-4 5mg/d. Diabetes - Repaglinide, low carb diet and exercise. Congenital heart defect - Omacor and CoQ10
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