Hi, I’m trying to find the reason for my osteoporosis, and get the right treatment. So far I’ve been offered what seems to be the standard initial treatment of once weekly alendronate acid. Trouble is that that and all osteoporosis treatments seems to need higher than usual calcium/vitD/magnesium etc, and owing to metabolic issues I don’t think I’m getting sufficient already - despite a good diet and supplementation. I don’t want to make things worse but when I asked my GP about how to monitor the medicine he simply said the Dexa scan every two years! Is there any other way you can monitor how well you’re doing - I know that the calcium blood test doesn’t show if the bones are utilising it, just the level circulating in the blood. Thanks!
I don’t have answers for you, just wanted to express similar concerns. I also have absorption issues due to other medication that I am taking. I saw my GP today and asked exact this question and was left with no answer. Moreover, I just read the record they made of the appointment and it is stated that I took too much time asking allegedly unrelated questions! I am still fuming. All my questions were directly related either to osteoporosis or to OP medications. I would say your best bet is to call ROS helpline.
Thank you for getting back to me, Gala. I’m sorry to hear you have similar issues and also that your GP was so unhelpful. A real nerve to say you spent too much time asking allegedly unrelated questions! Have you thought about getting a second opinion? Maybe another GP will be more sympathetic and helpful. Have you had a referral to a rheumatologist? If not I think you’re entitled to that and that might be worth trying, too. I’ve spoken to one of the ROS nurses already but didn’t cover everything so will call again.
Interesting, I was diagnosed just over a year ago and put on Alendronic Acid and Evacal D3. My gut rebelled after two doses of the later, I was taken off it and told to get the calcium via food. Not easy as I am gluten intolerant and lactose intolerant and have various other intolerances. When I went for my annual blood tests I asked the technician how I knew if I was taking enough calcium, was there an annual check as for my other medical problems? She said that she would find out for me. Fifteen minutes later I had an email, she had asked a doctor and I had to wait two years for another Dexa scan. My reaction was if I am not taking enough calcium now, then I am wasting two years of potentially not increasing my intake. I know that doesn’t help matters but, at least I know there is someone else sharing what feels like a ruder-less boat with me.
It certainly sounds as if you’re in the same boat as me - a two year wait for another scan! - though at least I’ve been referred to a rheumatologist (the appointment’s not for several months though so I’m thinking of paying and getting one much sooner). Have you? It might be you’d get further that way. I read an article that said it was important, once diagnosed, to find the reason for the osteoporosis. I’m post menopausal and I suspect it’s assumed that that is the reason for my and other post menopaual women’s osteoporosis. And yet there are many causes and it would seem sensible to find the cause. I’m sorry you’re having so many intolerance issues. I take Better You D3/K2 spray, which is absorbed through the mouth. It wouldn’t give you the extra calcium you need but it might help with the D3/K2? (I’m not sure if we’re meant to recommend medicines but it does seem - I think! - to help me.)
My GP said I would wait 3 years for the next scan. At my age, I don’t know if I even have another 3 years, so not impressed.
That’s not good. Are you under the care of a rheumatologist?
A really interesting thread, and one I have been wondering about too. I find the Calci-D tablets i have been prescribed upset my stomach so am trying to get calcium from diet and just take vit D separately.
I have a private appointment with Dr Birch next week so will ask that question.
Thank you! Have you seen Dr Birch before and is he London-based? I may have said that I’m looking for a private rheumologist now - on the NHS the wait is too long - and am hoping he or she will look into the cause of my osteoporosis rather than just treat the symptoms - which in my case might not work anyway! I hope your appointment with Dr Birch goes well and will be interested to hear his response. I hope he can find a solution for you - either a tablet that doesn’t upset your stomach or reassure you that your diet provides sufficient calcium.Best of luck!
When I stopped taking the Evacal D3 the GP told me to take 800 ių of Vitamin D per day and get it from the chemists, that has magnesium. I found the pharmacist extremely helpful, she made various suggestions and we made a plan. I started taking 500mg of calcium two days a week for four weeks, then added a third day and repeated this until I was taking it daily. The idea being if I had a problem that I knew where my tolerance level lay. The plan is to build up to 800mg a day, a long way off the daily 3000mg prescribed. I also have potassium in the mix. So, apart from dietary intake I know I am taking some but and it is a big but, is it enough?
The reason for my osteoporosis? As you will know you have to meet certain criteria to have a DEXA scan, I started the menopause at thirty nine having had a hysterectomy. Then I fell and broke my shoulder in my seventies. First doctor blamed the hysterectomy, second said no - early menopause. As the second was the result of the first … Now I wonder just how long I have had osteoporosis, it is definitely silent.
One thing I don’t know, maybe somebody does know the answer? Are you recalled by the hospital for your second DEXA scan or are you referred again by your GP? I have put a note on my To Do List but it would be useful to know who one needs to chase, just in case the need should arise!! Definitely feel abandoned by the NHS which is why I find reading these entries in the Community so helpful.
It sounds a good plan and also that you have a supportive pharmacist. I know just what you mean about the NHS. You have to be so proactive these days. I really miss the days of the family doctor, who knew you, and - if any good of course - you felt was routing for you. I wanted to know if there was any way of monitoring my treatment and the GP said that it would be by Dexa scan, in two years’ time! And that it seems is all. But whether or not they will arrange that or leave it up to you I’m not sure. Maybe someone in the community will know. Are you not under the care of a rheumatologist or hasn’t that been arranged for you? I have at least got an appointment with UCLH rheumatology but not till October so I’m investigating private, preferably private that will let me transfer back to the NHS to keep the costs down. I think it’s great there’s this community and the ROS nurses have been so kind and helpful, too. There’s also an online meeting on 20 May 2-3 pm if you can make that. I heard about it recently. Hopefully you’ll be able to find info about that online or via the nurses. It might be a good opportunity to ask questions ie about booking Dexa scans.
Hi Lizzie3, no i haven’t. He was recommended on the health unlocked forum when I first joined. Like you I was struggling to get any answers so booked an appointment with him, this was last September/October. I got the only appointment available in my area until Autumn this year!!
He is based somewhere North in England- i am extreme South East (Dover) but he does satellite clinics which is what I am attending.
I have heard he is now booked up but has someone working with him who is also good.
Google him and you get the clinic details. I cant remember the name.
Since I booked it i have now started Teriparatide but have yet to see anyone f2f so still have questions so didn’t cancel the appointment and there was no referral available down here to a rheumatologist.
Let me know if you need anymore info. X
I was told the reason was my weight and body build. I just wish I’d been told when I was healthy and could have done something about it. I suffer from CRPS affecting my leg, arthritis in both wrists, and I’ve had a SAH leaving me with chronic neuro fatigue, how on earth am I supposed to do weight bearing exercises I have no idea
Referral to a rheumatologist has never been mentioned, I must admit that it had never crossed my mind before now. I am not really technologically minded enough to do on line meetings, I prefer the old fashioned face to face, but thanks for the suggestion anyway.
I am sorry. It sounds very diffiucult. Have you tried asking the ROS nurses if there is something they could suggest as an alternative? They will hear from so many patients and may well be able to suggest something that could help. Also, a physio. That may sound counter-intuitive but they can be pretty good at finding solutions. Best of luck.
Thanks! That’s a long way for me though I take what you say about satellite clinics. I’ll try nearer but if get stuck will look into this doctor further.
I’m surprised to hear you’ve not been referred to a rheumatologist. When my GP told me he’d made the referral I was surprised, not having a clue about anything. But I would push for that if I were you. The online meeting was just a suggestion and it’s really easy signing on and just listening to what others say and often you can put questions too, either then or written beforehand.I can’t remember now but it maybe it is a mix of online for those who can’t get there and in person for those who can. And of course I may have got it wrong and it may be in person! (I’d better check, too!)
I’m sorry to hear about your GP experience. I was diagnosed with severe osteoporosis 21/2 years ago and was put on Alendronate acid and Adcal D3 1500mg, both of which really upset my gut. I was told by my GP to remind him in 5 years time for a Dexa scan and that’s it. I’m 55 and have asthma. I’ve taken a lot of Prednislone oral steroids over the years for my asthma as it’s difficult to control and I have a family history of osteoporosis, so I think that’s the reason why I have it. I’ve since decided to not take the Adcal as I was so bloated and had stomach pains so I’m trying to get calcium from my diet and take a calcium supplement made from algae and a separate vitamin D and K2 supplement. I feel like I’m just left to it, so thinking about going private but not sure who to go to?
Hi everyone,
Warmest welcome to the new members here, thank you so much for joining.
There are some really important topics that have come up in this thoughtful conversation, and as noted here, it’s important we feel informed about our health so we just wanted to drop in some links to further information for those wanting to find out more. 
Causes of osteoporosis
Nutrition for bones
Exercise for bone health
Our BoneMed Online free service offers tailored information to those starting or changing osteoporosis medicines.
Also, as kindly mentioned in the thread, there are face to face and online support groups where you can connect with others living with osteoporosis. On the ROS website, you can see your nearest support group and upcoming support group meetings.
We hope you will keep reaching out and connecting here
Wishing you all the very best,
Lulu
ROS Moderator
Hi Katty, I think my experience is like many others - worse than some, better than others. Five years’ wait for another Dexa scan seems far too long though. Were you given any reason for that? I was told 2 years. I guess it may also depend on where you live and a shortage of scanning machines/operatives? I’m in London which should help re finding private care but it’s difficult when you don’t know who’s good. Also it’s expensive so I’d prefer to find a rheumatologist who also sees NHS patients so I could transfer on to their NHS list. Not having much luck there. I think I’m also going to try and bring my appointment at UCLH forward - maybe via a cancellation? That might be worth your trying. I think UCLH see patients from a wider area than their immediate catchment and they’re mean to be good so if that’s possible for you, maybe try and see if you can get a referral there? It’s awful feeling abandoned - you need to find a supportive GP (second opinion?) and see if you can get a referral,especially given the problems you’ve had with medication.