AA

[Madmax100]

Hi, I’ve just started on soluble AA today and wondered how long it took for any side effects to show? I’m really anxious about this medication but with a t score of -4.6 at the spine, I know I need it! I’m 49 years old and am postmenopausal and a coeliac.

[clover-4]

Hi Madmax100. I had a similar Tscore at base of spine and was prescribed Alendronic Acid (70 mg tablet once a week). I was so worried about the negative reports and possible side effects, that I stared at the packet of tablets for 2 weeks before plucking up the courage to take one. I have now been taking them for almost 3 months with no side effects so far. So just to let you know that there are folk out here who don't seem to have any problems with AA, although I know some people do.

[Madmax100 in reply to clover-4]

Thank you - that has made me feel better, I took it at 8.30am this morning and I’ve just felt a little nauseous, when I’ve eaten mainly so hopefully I’ve got away with anything else!

[KidR in reply to clover-4]

Hi, I am coeliac also. Only diagnosed a few years ago. My osteoporosis isn’t quite as bad as yours but you are young and hopefully you have time to work on your bone health and improve your scores. I started taking AA 2 years ago very reluctantly. My score in spine was -2.7. I’m 62 this year. I had no side effects thank goodness.

I’m having a dexa scan on Monday and hope to come off the medication if the results are ok.

There is loads of advice on here from people away more qualified than me. I’ve taken it all. Exercise is very important. I walk a few miles everyday. Vitamin D3 and K2 Magnesium and Boron are some of the essential vitamins and minerals.

Take care and best of luck managing your bone health. Above all don’t be scared you can do this. X

[Madmax100 in reply to KidR]

Thank you - I really hope so. I do online yoga regularly and walk my dogs 3 x daily but I’m thinking that might not be enough now as I stroll rather than power walk!

I’m glad you had no side effects - I’m hoping I’ll be ok, it’s day 2 after taking AA and I feel absolutely fine so fingers crossed.

That will be brilliant if you can come off the meds. Best of luck with that.

I’m scared stiff of falling now - I was actually better not knowing.

The vitamin advice is good - I eat healthy anyway but am on high strength vitamin D3.

Thanks again & best of luck to you too x

[Sunseaandsand]

Hi Madmaxx100,

As with any meds or treatments side effects will usually be in the first 7 to 10 days.

If you have any problems arise whilst taking it don't worry because with a T score like that they would offer you the infusion.

I am very surprised that you have not been given treatment long before now.

You are very young so you have time on your side to increase your bone density.

Look after yourself and avoid lifting or carrying heavy or bulky things.

Bend from your knees (ALWAYS) and no twisting or reaching.

These simple but everyday movments will help you avoid fractures.

Take care.

[Madmax100 in reply to Sunseaandsand]

Thank you so much! It’s been awful - I was ill for ages, it was so gradual I didn’t realise and after about 2-3 years I went to the doctors who diagnosed possible coeliac disease. At the time I was working as a student nurse working at my local hospital literally moving patients around physically hard work and bending, twisting, it’s a miracle I didn’t fracture anything!My boyfriend at the time picked me up messing around and fractured one of my ribs and I broke my left forearm in a fall a few years before this which took 4 months to fully heal.

I went through an early menopause aged 44 when my partner died suddenly. My GP refused to prescribe me HRT and I really struggled as a result, which won’t have helped.

Then Covid-19 hit - I eventually went for a DEXA scan and got the results above. The dietitian said that it looks likely I’ve had prolonged coeliac disease.

I’m also on Hun D3 20,000 units weekly for 7 weeks then back to Adcal twice daily chewable.

I’ve been waiting absolutely ages for the above and obviously the pandemic hasn’t helped, so I think that’s why it’s so bad. I’m now waiting for a bone clinic appointment and possible IV infusion. Oh the joys ☹️

It could be worse I suppose!! The good news is I’ve no side effects of the AA (as yet anyway - day 2)

[Sunseaandsand in reply to Madmax100]

So sorry to hear what you have been through.

You are now on the right track though, and with the proper care and treatments I am sure you will do much better.

Take care and look after yourself well.

[Madmax100 in reply to Sunseaandsand]

Thank you!

[Madmax100 in reply to Madmax100]

And all the best to you too x

[Fruitandnutcase in reply to Madmax100]

Can’t add to the AA discussion but do you know about Coeliac.org.uk? They have a fantastic website and a wonderful ‘bible’ of practicality every known GF food and ingredient. You should also look into taking vitamin K2- Mk7 along with your vitamin D and calcium.

[nellie237 in reply to Madmax100]

Has anybody told you that as Coeliac you should have the pneumococcal vaccination. I don't think the fact that you haven't had a biopsy will affect this. I wasn't given the option of biopsy, even though I fit the new Covid guidelines as I am over 55yrs. I have received a hospital appointment for Gastro in early March.........I'm kind of expecting to receive another letter to tell me that this will be a telephone appointment.

"Based on advice from our Health Advisory Council (HAC), Coeliac UK recommends that everyone with coeliac disease is vaccinated against pneumococcal infection and has a booster every five years, as there is a potential for people with coeliac disease to develop overwhelming pneumococcal sepsis due to hyposplenism."

Nobody medical told me about this, and I have no idea if my spleen is enlarged because I have not had a face to face appointment with anybody titled Dr yet. I had to see the Practice Nurse for a B12 jab (this is new for me, and due to Coeliac) ...so I asked about it, and she just did it for me while I was there. I didn't have any reaction at all.

If your bloods showed you are Vit B deficient NICE recommends 40,000iu per wk for 7 weeks, and you should take these with your 'fattiest meal' of the day, as fat helps absorption. My bloods clearly showed I was deficient........my GP initially suggested that I take 1,000 iu per day, which is barely a sustainment dose.

[Madmax100 in reply to nellie237]

Oh I never knew that, about the Pneumonia vaccine and it’s not been offered to me either. I might mention it when I eventually get an appointment at the bone clinic.

I’m taking Hux D3 20,000 units x 2 for 7 weeks as you state then I’ll be back on Evacal which I was originally prescribed so here’s hoping 🤞 it’ll help

Yes I think your appointment is likely to be a telephone one. I guess mine will be too. The AA hasn’t shown any nasty side effects as yet though I have moments where I feel quite unwell but they are brief and pass pretty quickly

[nellie237 in reply to Madmax100]

I've just emailed the dietitian to ask about Calcium - my initial appointment was really too early. Your reply above indicates to me what I thought - I've got to wait until I've finished the high dose Vit D (I think they compete?)... so thank you for that. I don't think the NHS will offer Calcium until after Dexa - and lord knows when that will be. So, I'm going to have to supplement myself, but want the dietician's input.

I'm glad you are not suffering too much with the AA - my initial research on this .....sounded horrendous, and on top of a coeliac gut - Oh my. Fingers crossed that this stays OK for you.

[Madmax100 in reply to nellie237]

Yes I think you have to wait until you’ve taken the high dose D3 from what I can gather.

Definitely speak to a dietitian- they’re doing zoom meetings. I got told I need 1500mg of calcium per day which is higher than the average because of the coeliac. I think it’s mg anyway! Tinned fish is good, dairy (low fat) products have more calcium in than full fat ones apparently! Cheese/yoghurts/milk.

Fingers crossed you have the dexa scan soon.

I’ve just had a phone call tonight from the hospital - outpatient dept can see me tomorrow about my osteoporosis as they’ve had a cancellation so I’ve taken it. My gp has suggested I might need an iv infusion

[nellie237 in reply to Madmax100]

Oh, good for you, although I'm sorry that you need it in the 1st place- I like your GP. People here seem to be very positive about iv treatment, please let me know how it goes.

[Walkingdogs]

I take AA but not the soluble one. I’ve been taking for over 2 years without any side effects. Good luck.

[Madmax100 in reply to Walkingdogs]

That’s great to hear, and has it improved your bone density?

[Heehaw]

Hi, I've been taking AA 70mg tablet once a week for 3.5 years. I have had no problems until a couple of months ago, I started with stomach pain. I decided to stop taking the AA for a few weeks, to see if this stopped the stomach pain. Indeed the pain ceased within a few days. I am therefore reluctant to restart the AA, although I cannot prove this is the cause of the pain. I have therefore started taking K2 having read a few posts on here about AA. My next Dexa scan is not until November. I also walk a lot and started cycling three months ago.Very best wishes to you in improving your bone health.

[AnnieW55 in reply to Heehaw]

Apologies if you are aware of this, and if you enjoy it don’t stop as the cycling will do wonders for your cardio vascular system. However cycling will not do anything for your bones as it is not weight bearing.

[Heehaw in reply to AnnieW55]

HiNo apologies necessary.

I know the cycling won't help my bone health, not sure why I added that to the post lol. I did start jogging a couple of years ago, but developed pains in my shins, so stopped immediately. Was thinking of trying gentle skipping and adding weight to my rucksack on hikes. Enjoying the cycling with my Dad, who I cannot keep up with. At 78 he is amazing. I am sweating and out of breath and he looks so relaxed 😆

[Madmax100 in reply to Heehaw]

That’s really strange after 3.5 years! I dread to think what it does to your body long term. I’ll have to look at K2 but I’m rubbish with tablets past a certain size, I needed AA soluble as I just spat the tablet out!

Thanks for your comments and best of luck to you too! I need to walk more

[stockport1965]

another one here, who wasn't offered HRT short term to protect against OP! Hope it's still going OK

[Madmax100 in reply to stockport1965]

Shocking isn’t it! I do feel if I’d had it it might have helped...too late now