 Posted 01/09/2012 11:46:18
|
|
|
|
Hi Milly
Your experience sounds remarkably similar to mine. Teriparatide injections were initially suggested to me by a hospital registrar as the best treatment for my very low spine density (the same T score as yours) but the consultant who I subsequently saw vetoed this suggestion. He said that I would need to be over 65 with two fractures to qualify for the funding. He recommended that I take bisphosphonates, but I just didn't feel that this was the right long term treatment for me. It took me another four months to get a prescription for strontium ranelate, and I did find it stressful. I got some helpful advice from both members of this forum, and also from the nurses on the NOS helpline. I also have a very good friend who is a GP in another part of the country, and she was very supportive too (unlike my own GP!).
I hope that your private consultation will help to get you the treatment you'd like. The only other thing I'd suggest is to check whether there are any clinical trials in your area. I found out that there was a clinical trial of teriparatide in Sheffield (this was 2 years ago) and contacted the hospital to find out the details. Unfortunately, it wasn't possible for me to join the research project due to a reason unrelated to OP, but it was definitely something that I would have considered.
Best of luck
Jes
|
|
|
Posted 01/09/2012 13:21:52
|
|
|
|
Hi Jes,
Thank you so much for your kind reply. Can I ask how you found out about the clinical trials for Teriparatide it is something that I would do if it was avaliable. It is amazing that a drug which is known to have fantastic results is not given because of finances. I have been told I can have it if I am prepared to pay for it, sadly not an option 
How did you manage to get Strontium Ranelate precribed ? I cannot believe that you had 4 months to wait before you got treatment ! I thought 1 month and counting was bad enough !!
Many thanks,
Milly
|
|
|
Posted 01/09/2012 18:58:55
|
|
|
|
Hi Milly
There is a NHS website address for all clinical trials
http://www.nhs.uk/Conditions/Clinical-trials/Pages/Gettinginvolvedinresearch.aspx
If you click on the 'Search Trials' tab at the top and type in 'teriparatide' or 'osteoporosis' you'll get a list of all the current trials, and whether they are still recruiting people. I've just checked, and the Sheffield trial does seem to be still recruiting so if you are interested in finding out more, you could email the person listed on that page (which is what I did). They were very quick to respond too.
As to how I managed to get the prescription for strontium ranelate, I think it was just a case of not giving up! I went back to see the consultant who had recommended bisphosphonates, and explained again why I didn't want to take them. Although the consultant didn't agree with me that strontium ranelate was preferable, he was at least prepared to write to my GP asking her to consider prescribing the strontium because he said it was better for me to take something rather than nothing!
Jes
|
|
|
Posted 10/09/2012 14:53:57
|
|
|
|
It's not true that GPs won't prescribe strontium ranelate unless you have a drastic reaction to AA. GPs are all different and mine happily put me on SR because I just didn't like AA and stopped taking it. She knew she couldn't force me to take AA and wanted me to have some sort of treatment. So it's worth asking, every time.
As for "why" we get OP... I wonder whether most women develop it post-menopause but don't know it because we don't get tested unless we break a bone. I had a heavy fall and broke my wrist but I reckon it would have been broken even without OP. My mother's and grandmothers' generations wouldn't have had DEXA scans; none of them said they had OP but my maternal g/mother had a dowager's hump so she probably did. It was seen as a natural part of ageing. People are much more informed these days; we live longer, we have more active lives (therefore more likely to fall) and I think we seek treatment and "reasons" more anxiously.
|
|
|
Posted 11/09/2012 08:15:06
|
|
|
|
| I also only had to say that I didn't want AA and my GP was Harry to prescribe Strontium. I've been on it 2 years now.
|
|
|
Posted 11/09/2012 21:59:07
|
|
|
|
| Hello everyone, having taken AA for ten weeks and ending up feeling like an invalid I was advised by my doctor to give it a rest and make sure that the symptoms were caused by the AA. After four weeks without it I am back to normal and feeling fit again! However I am due to go back to my GP on Friday to discuss options for treatment. Like Milly I live in North Yorkshire and have been told that funding for anything other than AA isn't likely as I have only had one break and am young (early 50s!). I have always exercised but am now doing more weight bearing stuff and am taking lots of calcium in my diet. I am seriously considering just doing without medication and hoping for the best but wonder how sensible that would be?
|
|
|
Posted 14/09/2012 17:18:55
|
|
|
|
| The trouble is we are frightened not to take anything or go against what the doctors tell us. All I can say is I was on bisphosphonates for 5 years and hated every minute of it. Felt sick, unwell and terrified what it might be doing to me. I still broke my wrist in a very soft fall after those 5 years! Until I came on this forum I didn't know there was an alternative - I am now on Strontium Ranelate. Hopefully that, and the exercise and supplements are working. Decide what you want for your body and keep asking.
|
|
|
Posted 14/09/2012 23:47:39
|
|
|
|
suzy45 (10/09/2012)
As for "why" we get OP... I wonder whether most women develop it post-menopause but don't know it because we don't get tested unless we break a bone. I had a heavy fall and broke my wrist but I reckon it would have been broken even without OP.
There is a variety of reasons why people develop OP. Heredity and genes are one cause, but the likelihood of developing OP is increased by use of certain medications like anti epileptic drugs and steroids.
SarahW
Tscore Lumbar spine -3.3, Femoral neck -2.6, Hip -2.2
Alkali diet (+ no caffeine/sugar/salt/rhubarb/spinach) and exercise and supplements of Vit D (2,000IUs daily), Vit K2 as MK7, vit K2 Menatetrenone, Cod liver oil.
|
|
|
Posted 22/09/2012 19:14:13
|
|
|
|
Hi.
I am new to this and feeling very shocked. Am 56 and fit and healthy, so I thought. Having had a fracture of my meta tarsal with no apparent cause, I was referred for a Dexa scan and told that I had OS by the nurse. The next thing I heard was a receptionist from the GP practice phoned me to say there was a prescription waiting for AA and a calcium supplement. This has dismayed me. I've read a lot around the subject and worry about the increased risk of heart attack, although slight of the calcium and feel I could boost this myself in my diet naturally. I have a history of kidney stones and think too much calcium may predispose me to more. Does anyone think some of these supplements / medication could be avoided by optimal calcium/ vit D intake, weight bearing exercise etc. at 56 I think we'll potentially I could need these treatments for another 20 years, who knows. I am afraid of what's in store in terms of side effects and what these medications could lead to in themselves.
Jube
|
|
|
Posted 22/09/2012 22:53:06
|
|
|
|
Jube
It is a shock when you are first diagnosed. Like you I thought I was healthy in every way and was staggered to be given a prescription for AA and Adcal.
When I came on this site I was advised to find out about OP and told about a book by Dr Marilyn Glenville called Osteoporosis How to prevent treat and reverse it. I am really glad I read this book as it gave me hope that I could have a good life and was not condemned to weak bones and a negative life.
There are loads of other books - but this is really helpful as it explains how the body works and what you can do to help yourself.
The consultant I see does not prescribe calcium as she beleives that if you have a diet that contains sufficient calcium you do not need supplements. I had to change my GP and she does regular blood tests to make sure the levels of Vit D/calcium etc are stable.
Have you had a Vit D test? The reason that I have OP is because I take anti epileptic drugs and suppress your bodies ability to absorb Vit D - and as a result of low Vit D your body then cannot utlise all the calciumm you ingest. The Vit D test tht I had to ask showed that my vit D was 14.7 nmol and it should be well over 50 nmol - so I then took a loading dose for Vit D for a year (all with the GP making sure I was not overdoing it).
I refused to take AA and was put on Strontium Ranelate which boosts osteoblast cells into making new bone - but all this info is in the book I mentioned.
SarahW
|
|
|
|