Thank you, Lulu. That’s very kind. I’ve checked some of these but will see if I’ve missed anything.
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Hi Lizzie, thank you for your helpful advice and I hope you can find a rheumatologist and bring your apointment from UCLH forward. I live on the South Coast near Brighton so maybe this is the wait time for another Dexa scan. I think I might investigate either seeing someone privately or trying to get a second opinion and seeing if I can get a referral.
Hi Lulu, Thank you for these links, they are very helpful.
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My understanding is that most of us get enough calcium from our diet but worth taking Vit. D. If you get a bone scan every 2 years you are lucky, generally it seems to be every 5 years.
Hi Rose, thanks for getting back to me. I have certain defiencies and wonder if my osteoporosis is related to that but haven’t got far with that yet. I had no idea that you’d generally only get a scan every five years. My GP could be wrong or I may be more fortunate.
Hi Horsehugger.
I’m based in Deal. Could you pass on some information about the satellite clinics you mentioned. I think these would be something l need to attend. Thanks.
Hi Susan, this came to me not Horsehugger (as I originated the post). Horsehugger may spot your message but letting you know in case you don’t hear back and need to originate a new post re the satellite clinics.
Thanks Lizzie.
I’ll see if I can get it right this time.
Hi Lizzie, thank you for your support. I am under rheumatology for PMR and inflammatory arthritis and it was my rheumatologist who sent m for DEXA scan and discovered I had osteoporosis. Unfortunately, they then decided that my GP should treat my osteoporosis. I mentioned to my rheumy that AA does not agree with me (I have hiatus hernia), but they said to work with my GP first and maybe try risedronate. GP also said that before rheumatology would consider anything else they would want me to try risedronate. I am starting it this week. Hope for the best. If that does not work (if I have side-effects) then rheumy may take over. A friend of mine who lives in Canada takes slow-release risedronate that is kind to stomach and can be taken with food. Unfortunately, we do not have it available in the UK (cost?), so we have to put up with the risks that oral bisphosphonates present. Keep pushing for answers. Hope your treatment plan is explained to you properly and works well x
Hi Gala, no problem. I’m sorry you’re having all these issues and I hope you find that risedronate helps and doesn’t give you any side effects. If it does I’d push to see a rheumy who’s specialty is osteoporosis (if possible), especially as slow release risedronate isn’t available in the UK. I’m surprised that your rheumy (for arthritis?) didn’t suggest this. I wonder if this slow release treatment is available if you go private - if you can afford that? Either way you shouldn’t have to put up with treatment that doesn’t suit you. I’m still hunting for a private rheumy and will also see if my NHS appointment with UCLH can be brought forward (maybe via cancellation?). Wishing you luck! x
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Good luck, Susan!
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Susan24 I will share the link but you can Google Dr Birch and it gives details of his clinics.
I have heard on the forum that he is not taking on new clients but he has an associate who is apparently good too. I had to wait over 6 months for mine and got the last appointment other wise it would have been a year.
Osteoscan UK Ltd
Horsehugger.
Thank you for that.
Susan24
I did look at the details for the Deal support group, but unfortunately I am away when they next meet later this month, but im hoping to attend in the future.
Hi Horsehugger.
Hopefully see you in June.
Susan.
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You’ll be lucky if you get a DEXA scan in 2 years, where I live you can only get every 5years!
I have a mark on the wall for my height, and monitor regularly to see if my height has changed. To me that’s a good indicator.
But I’ve very recently paid for a REMS scan which is reported by some US doctors to be more accurate than DEXA. You can get from an organisation called ScreenMyBones, they have centers at various locations. I’ve decided to have a scan every year so I can keep check as I’ve gone from 5ft 1in to 4ft 10in so very concerned; don’t want to loose more height!
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Thanks for this, Denise. It’s good to know. Aren’t you getting any care from your doctor or rheumatologist?
Other than medication on repeat, no. I request a blood test every year to check calcium levels but that doesn’t happen if I don’t ask for it.
Would say my t scores are only just in osteoporosis at -2.7 but I’ve had a spinal fracture following a fall.
Get your height checked elsewhere as I wasn’t given time to get out of my wheelchair and stand up properly, so they read my height at 5 inches shorter than it actually is.
I asked to get my Vitamin D and magnesium checked, too. Plus they threw
in parathryroid hormone, which I gather is also relevant. The ROS make a big point of saying that the calcium blood test doesn’t show if it’s being utilised by the bones, so maybe having these other tests too will help gauge how you’re really doing?