Worried about Osteoporosis diagnosis and weather to take Alendronic Acid

[DeeDree]

Hello, I’ve just been diagnosed with Osteoporosis in my spine. I have no figures of the Dexa scan. My GP spoke to me on the phone. Feel upset and cross about it. Should I find out more before going on the medication?

[Fruitandnutcase]

Yes, you definitely should do some research into osteoporosis before you talk to your doctor.If you haven’t already done so look at the information provided on the ROS website theros.org.uk. That covers everything from bone friendly diet to exercise to osteoporosis drugs.

There are a lot of books written about osteoporosis and you will find a lot of information on this website. Bear in mind though that often people who use websites like this do so because they are having problems - you may never hear from the people who are quite happily taking osteoporosis drugs.

You will want to know your scan results and your T scores. If you are in the U.K. you are entitled to copies of all your test results so be sure to get them for your own records.

Make sure your doctors have done blood tests to rule out secondary causes of osteoporosis ncbi.nlm.nih.gov/pmc/articl...

If for example you have parathyroid problems then it is a waste of time taking osteoporosis meds unless that is sorted out first.

I would just say, don’t panic and don’t make any rushed decisions

[DeeDree in reply to Fruitandnutcase]

Thank you for these tips, especially for the one to get a blood test for Thyroid.

[FearFracture in reply to DeeDree]

Thyroid issues, especially hyperthyroidism, can cause low bone density, but FruitsndNutCase mentioned getting you parathyroid glands checked. The thyroid gland and parathyroid glands are completely different. Your parathyroid glands are responsible for regulating blood calcium levels.

[Fruitandnutcase in reply to FearFracture]

It is strange isn’t it - an overactive thyroid can contribute towards osteoporosis as can hyperparathyroidism - both have the word ‘thyroid’ in them but both are completely different.

[Stayloose in reply to Fruitandnutcase]

Do the Dexa reports come from the GP or scanning unit? Do they have to be requested specifically?

[Fruitandnutcase in reply to Stayloose]

Mine was carried out by my local hospital after I broke both bones in my wrist. Many years ago - 25 years plus probably - I asked my GP to refer me for one as I have a family history of osteoporosis- and she did. Unfortunately I knew nothing about asking fir results and I made no enquiries as to what the results were. Can’t believe that now.

I suppose that is still possible for a GP to refer you but with waiting lists etc as they are I have no idea how long it would take.

[FearFracture in reply to Fruitandnutcase]

Does anyone know if taking alendronate can cause throat or esophagus issues after taking it for 4ish years. My mother has been taking it for a little over 4 years and has never had any issues. Early this month (July 2022) her throat starting bothering her. She is having a hard time eating because many foods now bother her throat or leave her with an upset stomach, so she has switched to a mild, soft food diet (yogurt, eggs, toast, etc). She was tested for COVID and strep and both tests came back negative. I told her that I thought alendronate could possibily be causing the issue so she skipped her last dose and doesn't plan on taking it again until she is able to get an answer from her doctor.

[Fruitandnutcase in reply to FearFracture]

I don’t know the answer to your question but I think it’s quite possible for alendronic acid to have that effect.It’s definitely not good that your mum is having to adapt her diet like that so . I think your mum should speak to her doctor or it might be better to call her rheumatologist or endocrinologist depending on who it was started her on the alendronic acid. Sooner rather than later.She could call the consultants secretary and I’m sure they will be able to help her.

[Kaarina in reply to FearFracture]

I am afraid that AA can cause throat or esophagus issues: See here: drugs.com/sfx/alendronate-s...

Check with your doctor immediately if any of the following side effects occur while taking alendronate:

Stomach pain

Difficulty with swallowing

heartburn

irritation or pain of the esophagus

muscle pain

[Kaarina]

Hi DeeDree,

Yes, it is a shock to be diagnosed with OP especially over the telephone when you have not even had a copy of your report and that is wrong. You have every right to feel cross and shocked. Please take your time. Nothing is suddenly going to happen to you if you do not take the medication for a while until you have sorted things out more in your mind.

In the end, it is your decision but only after you have gleaned as much information as possible. There is lots of excellent advice on the forum as well as the ROS website and you can always call the ROS helpline and speak with a nurse after you have your Dexa scan report. Many of us decide to go down the route of exercise, good diet and taking supplements but there are others that do well on the OP medications available to us. There are of course others where the taking of the OP meds have caused lots of problems too. It it so important to be well informed first. GPs are, unfortunately, not always up to date with the latest OP information. GPs know a little about a lot of conditions. If you are lucky you can be referred to an endocrinologist or rheumatologist (I did but I had to ask my GP to refer me and it took a long time) who usually know much more about OP but often it is managed by the GP. I wish you all the best.

[MWZ3]

Definitely! No way just take it without a lot of research. If you small boned and never broken any bones then don’t risk the drugs. Try other ways to be healthier by eating fresh veggies and fruit, yoghurt, wild salmon, etc. If you can walk, then walk. Know your numbers and make a plan from there.

[mollysuki in reply to MWZ3]

You have no knowledge of this person’s medical history but suggests she tries a healthier lifestyle! Could be she’s already leading a healthy lifestyle.

[MWZ3 in reply to mollysuki]

It’s a general suggestion. We can all always tweak our diets. There is a diet for osteoporosis and we all keep adding things to it. You’re being rude making out I said something bad and judgmental. Diet and exercise plus other research is best rather than diving into these drugs.

[DeeDree in reply to MWZ3]

Thanks for your advice. At the beginning I had a pain in the centre of my back since last September, which didn’t go away; I decided to lose weight (10st 7) at this time as thought the weight wasn’t helping my sore back. Also researched healthier diet and what was good for bones. I started taking Glucosamine HCI liquid and Vit D3, more veg, even ate veg on its own as a snack lol. But I decided to go the Dr to find why my upper back was painful. She did not take bloods just sent me to X-ray which showed a less density in my spine. If I hadn’t asked about my pain (probably from a branch hitting me) I would never have known unless I got a fracture I have osteoporosis.

[DeeDree in reply to MWZ3]

I am small boned. I’m going to find out my T scores today. This I need to do.

[MWZ3 in reply to DeeDree]

Good, go from there. All the best.

[MyCatsNameIsMouse]

Most definitely. I'd also look at having an independent REMS scan and appointment at OsteoscanUK. GPs are strongly pharma-led and that sometimes isn't the best path

[mollysuki in reply to MyCatsNameIsMouse]

Why would she have to a REM scan at a cost of £160 when she doesn’t have her T scores yet? Perhaps you have a vested interest so that’s why you’re recommending it?

[MyCatsNameIsMouse in reply to mollysuki]

Not at all. I had a similar thing with my GP and I decided to take control and felt disillusioned with the NHS so did some looking around and found REMS. Instant results, instant diagnosis and a chance to actually speak to the consultant there and then. These days you struggle to get a face-to-face appointment with anyone in the NHS. Of course I'd much rather not spend the money, but my bone health (and how I go foward with it) is important to me and I wanted answers

[DeeDree in reply to MyCatsNameIsMouse]

I get phone call consultancy with a Dr. Not ideal. The Dr that referred me for the Dexa after the X-ray was off this week. She did see me for the initial query about the pain in my back.

[MWZ3 in reply to mollysuki]

Again with the negative on someone else’s comment.

[mollysuki]

Hi DreeDreeVery sensible advice from fruit and nut and kaarina. Find out more about why you have osteoporosis and what your scores are before making any decisions. Talk to the nurses at ROS. It would be useful to have that information before you speak to them. They can also help with questions to ask your GP.

[DeeDree in reply to mollysuki]

That’s a good idea! When I was first told I was flamoxed about it. I only went to the GP as I was sick of the pains in my back. Wanting to know why. I have had falls over years through stupidity more or less but no fractures. Perhaps trauma from those falls and menopause was the cause? I’m 64 now.

[MWZ3 in reply to DeeDree]

Very important that you haven’t had fractures. All the pieces inform your decision.

[DazzleP]

Hi DeeDree. I was diagnosed with Osteoporosis last October and you need to know what your T score is from your DXA scan. This will show how severe your condition is. Have you have spinal fractures? I have had 3 so far and 3 pelvic fractures because my T score is really bad. The whole point of the medication is to prevent future fractures and in particular a hip fracture which means a major operation and long stay in hospital. A lot of older patients don't survive this or need long term care so I would advise you to go onto the best medication that is right for you

[Mistydawn]

Yes, definitely carry out research before committing yourself to medication! I'd also find out how bad your osteoporosis is (ask for a copy of the results) and take into account your age and your build. There are a lot of self-help things you can do in the mean time such as look closely at your diet, weight bearing exercise, supplement with bone health vitamins and minerals such as calcium, vitamin D and vitamin K2. And I agree with Fruitandnutcase below, don't panic and don't rush into making a decision. I know it is devastating when you first find out...

[mollysuki]

Hope you’ve found the advice useful. It can all be a bit overwhelming when first diagnosed and there’s lots to think about. Take your time to get your head around it all. There’s a very good support group on Facebook. Osteoporosis Support Group (UK Only). You don’t say what age you are but the group has an age range from teenagers up to the young at heart 80’s. Good luck x

[Jaynesh]

Hi just thought I’d add my story to this one although many have already commented and given sound advice. I was told I had very bad Tscores (-2.5 -3.1and -4.1) but it also commented on the report that spine not confirmed due to scoliosis. I did a serious amount of research and refused to take bone meds while going so. Amongst my research I found out that scores need to be similar in different body areas and mine were way out. I also learned about operator error and I remembered he was really struggling to position me. I took daily Vit D (3000) K2 Zinc Magnesium Calcium and Boron (all gleaned from this site and research as no information that the GP could give me) and also took up Nordic walking. A year later I paid for a REMs scan and my scores were as I thought way out (all -1.6) and I have osteopenia and not severe osteoporosis. REM also gives bone strength and mine are strong. My Frax score had been miscalculated at the hospital too. So don’t rush in. I spent a year living in fear of fracture and now I’m back on my bike! So glad I challenged this. I now have the task of getting this wiped diagnosis from NHS records as of course the REM is yet to be fully recognised in the UK. Hopefully this will happen soon and prevent lots of misery and unnecessary medication.

[mollysuki in reply to Jaynesh]

How does REM’s measure bone strength? I’ve looked and done some research on this but no one seems to be able to answer this question. I’ve also emailed Nick Birch and as yet have had no reply.

[Hidden]

I take raloxifene as I lost a lot of bone in my spine and hips. Raloxifene only builds bone in your spine and I will not go on Prolia. I also hired a personal trainer who specialized in building bone, and have a very strick diet, including drinking a cup of bone broth with jell every day. My first year I gained 23% bone, which also included building bone in my hips. I've had no problem with raloxifene. I do strength training 3 times a week and concentrate on spine and hips. The doctor was very happy and so am I. Just to let you know I'm on a very strict diet, which I got from a dietrician, and training. Blessed to have it working. Take care of yourself.