Looking for advice

[Purplegrey44]

I'm 44yrs old & got diagnosed with osteoporosis over the summer. I read on here that some of you have a consultant & you know your dexa score & where the osteoporosis is . I don't have this , it was my GP that requested my scan & then gave me my results. How do I go about getting this & what's the best treatment at the minute I'm on alendronic acid & calci-d. The alendronic acid I haven't taken for wks as it gives me acid reflux. I'm seeing my GP in the new year, it would be great to have some advice. Thanks in advance

[Purpleypiper]

I'm on same meds as you . Sorry getting acid reflux. Not sure if gaviscon would help? I take this for something else but might help? In terms of dexa scan info I am thinking of asking my Gp for printout of my results. Gp gave me mine well over a year ago and I can't remember. Might be worth a try

[Purplegrey44 in reply to Purpleypiper]

Thanks I'll ask my GP for my results. I take omeprozle daily due to amount of medication I take & I also take gaviscon, & rennies I take them like there sweets & GP doesn't seem bothered by it!

[Rooruby in reply to Purplegrey44]

Don't think it's a good thing to take so many and should never take 2 hours before or after Adcal

[Nadjio in reply to Purplegrey44]

I also take omeperazole, I take my AA with two glasses of water (a pint), I then wait at least 2 hours before taking the omeperazole.With regards to Dexa scan results, if you are in the UK, sign into the NHS app and all your results should be there.

[Purplegrey44 in reply to Nadjio]

Thank you

[Met00]

As the AA gave you reflux, you can ask your GP to refer you for an annual zoledronic acid infusion. That would be a referral to a rheumatologist. You may be asked to try risedronate first, as that may not cause reflux, or your GP might agree to the referral immediately.

[Purplegrey44 in reply to Met00]

Thanks I'll have a chat with GP about both of those

[dcdream in reply to Purplegrey44]

My mom gets the annual infusions due to being that the weekly dose gave her severe heartburn. Unfortunately the infusions did not make the reflux better. She still has acid reflux and takes meds for that as well. Sort of a double whammy due to osteoporosis meds, as she never had acid reflux until taking osteoporosis meds.

[Purplegrey44 in reply to dcdream]

Hello, I have had acid reflux for years & the meds have made it worse it's so frustrating isn't it?

[Teddysamson2 in reply to Purplegrey44]

Hello. I was started on Alendronic acid, and couldn’t continue due to acid reflux and IBS. My Gp tried me on Risedronate, in my experience much the same problems. I’ve been referred to rheumatologist for Zolendronic acid infusion instead.

As far as dexa results go, if you go on your GP’s app, all the results and letters should be there, including the T scores for your hip and spine. There is usually a summary that explains what the T scores, Z score etc means. Hope that helps.

[Purplegrey44 in reply to Teddysamson2]

Thank you I'm going to sit down this afternoon and have a good luck at it

[love42france in reply to Met00]

Having the annual infusion sorted out any problems for me. I have omeperazole as I have GERD and IBS (diverticulitis). Having read all the trials of omeperazole and osteoporosis drugs, they now say they cannot find any reason not to take the omeperazole. I have not taken one today as not needed a specific painkiller that sets the pain off but will take some Gaviscon as I have some indigestion.

[Purplegrey44 in reply to love42france]

Thanks

[corcho]

Hi, sorry to hear that you're having a bad time with alendronite acid. Regarding the Dexa results, I believe that only two parts are scanned, the lumber spine and femoral neck (both sides) this is the hip joint. The radiographer told me that these areas are the most dense so, if these show osteoporosis then it's likely to be elsewhere. You're entitled to your results. I must admit to doing a bit of nagging to get my full results. Chat to your gp about different medications and explanations where you need them. The Osteoporosis Society also has a wealth of information and a support service. Good luck.

[Purplegrey44 in reply to corcho]

Thanks for your advice

[Armagnac]

to repeat you are entitled to see you DEXA scan. More importantly GP’s are generally not knowledgeable enough so you need to push for a referral to a rheumatologist. They will assess you DEXA scan and decide the best meds GP’s don’t do this. It may be that a bone building drug is better than a bisphosponate before then having the bisphosponates. Also no need to suffer with side effects of pills as there are injections or infusions available. Best not to take omeprazole (PPI) if possible. Incorrectly prescribed for my wife and worsened her condition.

[Purplegrey44 in reply to Armagnac]

Thanks for the advice

[agingfeminist]

You are young to have osteoporosis. Your Gp should be referring you to a bone specialist, This is way beyond what a GP should be dealing with, Someone also needs to investigate why you have osteoporosis. Good luck with all this!

[Purplegrey44 in reply to agingfeminist]

My GP hasn't spoke to me about it since giving me my results (I've forgotten them!) & putting me on meds, he didn't give me any information. I agree that it should be looked into why have it at my age. It isn't even in my family

[TFH1]

Hiya If you instal the NHS app on your phone you can see all your medical records there as well as full test results and notes from your consultations.

[Purplegrey44 in reply to TFH1]

Hi I have the nhs app & I didn't know that! I have a look thank you

[Showgem in reply to TFH1]

Not all surgeries put all this information on the app, mine doesn’t.

[Rooruby in reply to Showgem]

If you ask them they will

[Showgem in reply to Rooruby]

I did ask for copies of my old Dexa scan at the time and was given them. This was before the app and the records on it don’t go back that far.

I have seen some things put on the app recently but not everything is added, it seems to be a bit random at my surgery.

[Purplegrey44 in reply to Showgem]

Thanks for the advice

[Nadjio in reply to Showgem]

There seems to be a difference between the GP app...ask my GP, and the NHS app, I only realised this after visiting them both.

[TFH1 in reply to Showgem]

I think you might be confusing your surgery's app with the generic NHS app. It's not up to the surgery what goes on there, it's standard.

[Showgem in reply to TFH1]

I checked the NHS app and read this information:

Asking for a more detailed record.

If you have access to your GP health record, you will be able to see your summary record as a minimum. This contains information about your medicines and allergies.

Most people will automatically be given access to more information added to their more detailed GP record from November 2023 onwards. This includes letters, test results and appointment notes. Some people may also have access to information added to their GP record before this date.

If you only have access to your summary record, you’ll see a message letting you know that you can request access to more information. You can contact your GP surgery and request access to your detailed coded record.

(Most of my details were added from part way through 2019 because I requested access to information before 2023.

I know there are some hospital letters/emails that weren’t added. Not all of my medical conditions previous to early 2019 have been added to the app, including my osteoporosis diagnosis from 2008 which is obviously ongoing.

I did ask ask the surgery about this and was told not to worry as it’s all on our records!)

[Purplegrey44 in reply to TFH1]

Hi I've looked on the app & it seems my drs doesn't put test results on !!

[PoppyPaddler]

I was going to say the same about NHS App. It's quite useful being able to see your results, referral letters etc.

[Purplegrey44 in reply to PoppyPaddler]

Thank you I've just had a quick look & never knew I could get that information on it !

[Sunseaandsand]

Hi,

When my journey with Osteoporosis began things were very different to what they are turning out to be now.

I was sent for a Dexa by a Rheumatologist who was actually investigating for autoimmune disease.

As a result of this the Rheumatologist then referred me to a Consultant Specialist at a Bone Clinic and from there on I was treated for Osteoporosis, given regular Dexa Scans blood tests etc

GPs then had little knowledge or experience surrounding Osteoporosis and it’s complications but also were not able to arrange Dexa’s or treatments.

The Royal Osteoporosis Society have and do work extremely hard to improve accessibility to all aspects of investigations, treatments and care surrounding Osteoporosis for patients.

GPs now work alongside specialists and consultants and have the free hand to arrange Scans and treatments, this enables patients to access everything needed more quickly.

Some areas of the country are still behind on this but you seem very fortunate in having a good GP behind you. ( makes a huge difference)

You can get hold of your Dexa results easily by calling the drs receptionist and requesting a copy of them.

Regarding your problems with the gullet and reflux having an appointment with your dr to discuss it will enable you to request an annual infusion this is offered to patients who have issues with Silent Reflux and similar conditions.

Hope this helps you in some way and a call to the ROS nurses is always helpful, they are the experts and can guide you in all ways regarding Osteoporosis. x

[Purplegrey44]

Hi thank you for your advice. I have an appointment with my GP in a couple of wks so I'm going to discuss it with him I feel a bit better having a bit of knowledge when I go to the drs

[Rooruby]

Hi I to was diagnosed quite young and put on Alendronic Acid my dexa scan is nowv-4.7 which is classed ascseverevand now 62. I refused for years to take meds only Adcal D3 then I tried meds again Alendronic and Rosdrinate I hated them. I was thinking about yearly injection when in 2023 I coughed and ended up with spine fracture which I would not wish on anyone. I am now on daily injection teriparatide to try and build bone. If I had my chance again I would of took the Alendronic to maintain the bones maybe there are newer drugs now you need to speak to nurses at ROS they really are the best. Also don't let anyone push prolia on you which they tried with me but I stated I was far to young for that and it has terrible rebound effects. As for consultant sadly most of us are forgotten I'm lucky where I live to a degree I have a osteoporosis nurse and seen a consultant be it discharged me after I refused a drug he suggested lol. GP are not specialist and always put you on 1st line drug which usually is AA. Asked GP to refer you to consultant or osteoporosis nurse whichever you have at your hospital. Also look into HRT as if I knew then what I know now that would of been my choice. Good luck

[Purplegrey44 in reply to Rooruby]

Hi thank you for your advice it is really helpful & I feel better about what to ask the GP for

[Olliemaya in reply to Rooruby]

Rooruby hi I am also 62 and have a -4 reading on my dexta scan. I had a fall when I was 45 which resulted in a broken wrist. I remember being told then that my bones were not great. I didn't hear anything again until I requested a dexta scan 2023. Waited for over a year to be seen by osteoporosis specialist. The reason I asked for a scan is when my son picked me up to hug me I hurt my ribs. Thankfully it was just a pulled muscle. I was put on alendronic acid for a while but have stopped as I have bowel problems and felt it was making it worse. I have decided not to have any medication for now.Wishing you all the best with your treatment

[Rooruby in reply to Olliemaya]

Hi Olliemaya I understand your decision to hold of meds we have to do what is best for us. I did this for a l9ng time lol until really i fractured my spine the pain tbh changed my mind

Good luck and Happy New Year

[Purplegrey44 in reply to Rooruby]

Thank you

[Maker-of-soup]

I recommend having a conversation with a nurse at the Royal Osteoporosis Society before you chat to your GP. Best of luck.

[Soupsandsmoothies]

The ROS are the best people to get advice about all thing relating to osteoporosis. Also there website is incredible and what’s more it’s free information

[TandemTime]

I could not leave the house on AA as it upset my stomach with no warning!! My Rhemy suggested 'Binosto ' instead, which I have once a week. The Dr asked how it was going ( I have a spine Dexa of -4 out the blue ) and when I said no issue she thanked me and said she will now be recommending it to others ..

[Hairoil]

Hi. I would suggest you ask for a referral to a consultant? I am not sure why this has not happened but maybe the health service is changing. I was diagnosed in 2013 and have regular consultant appts - they are the specialists after all. Its rheumatology. I am also on annual infusions as I could not deal with alendronic acid. I have them for a three year period and then a break. These have proved helpful to managing my osteoporosis and have improved my dexa scores in my hips but not so well in my lower back. However I don't have a lot of pain so think I am quite lucky. Good luck with your next appointment

[Purplegrey44 in reply to Hairoil]

Hi thanks for your reply, I'm seeing my Dr next week so gonna ask him them

[Purplegrey44]

So..... thanks to everyone who replied I really appreciate it. I was going to discuss it at my Dr's appointment I had on Wednesday but I got rushed into hospital last Friday with a chest infection & they only let me out Tuesday night so Wednesdays appointment was me telling him all that had happened. I see my gp a week on Wednesday so will hopefully sort it out then.