I have got my results. Thankfully I haven't got osteoporosis but as a lot of you suggested I have osteopenia. I have been prescribed alandronic acid as some of you are. Doctor said that my chance of getting osteoporosis is 39% and the aa would reduce risk to 15%, which sounds a no brainer but firstly, apparently my last dexascan in 2014 showed osteopenia too and I was never told so I have gone 9 years which included a very nasty, heavy fall on concrete, in the garden 3 years ago with no break and no medication. agreed to try it but immediately googled possible side effects and have more or less decided not to take it. My questions are 1. Has anyone who has Sjorgen's Syndrome taken it and with what result? I haven't had Sjorgen's diagnosed but have many of the symptoms, not least 'choking sensation' when eating and have to have a drink handy when I eat anything dry. 2. Has anyone taken aa and not tolerated it? 3. What was the alternative. I would be most grateful for your replies. Thank you for reading
Update on Dexa scan: I have got my results. Thankfully... - NRAS
Update on Dexa scan
I have been diagnosed with Osteopenia in Nov 2022 but due to taking so much pred I was already on Aledronic and also have Sojourns. I also get choking on food regularly and for me is worse on bad Fibro days too. I just take the AA pill once a week and as it states sit up and drink a lot of water.
My GP checks I am ordering Aledronic I missed a month and got a lecture as just having the 2 chewable colecalciferol a day is not enough. Especially as I take so much pred .
Hope this helps
Lucky you still to be in osteopenia - I can see why you are not keen to take AA especially if you are still in the osteopenia range - you have time to work on your body. It would be worth looking at the Bone Health site on Healthunlocked. You will find out masses of information on there as well as other people’s experiences. Someone has recently posted about how she has done very well with diet and exercise.
I took AA for four months and eventually gave up because of the unpleasant side effects - basically everything apart from gut problems. I must say though that lots of people either don’t have or are prepared to live with the side effects and take it quite happily. I just wasn’t.
The one thing to watch out for is Prolia - once you have started taking that you cannot stop and you must have your next injection right on time to avoid rebound fractures.
For me it’s diet and exercise plus vitamins and minerals. Look on the Royal Osteoporosis Society’s website for calcium containing foods - I try to eat a healthy diet with lots of calcium rich foods, oily fish etc. I eat some cheese but I don’t drink milk and am not keen on yoghurt either.
theros.org.uk/information-a...
I’ve found Margaret Martin the Canadian physiotherapist to be really helpful. She has a good book on Exercises and also a website with loads of information an out all things osteoporosis. She is a very sensible person so everything she suggests is good. melioguide.com/author/marga...
I do an hour of Pilates three times a week and make sure I walk every day for at least half an hour but it’s mostly for an hour or more.
I boost my calcium with a seaweed based calcium capsule, take between 1000 and 3000iu of vitamin D3, take magnesium, K2Mk7, boron and a capsule of algae oil DHA - which does wonders for my very dry eyes.
If you haven’t discovered Bone Health definitely head over there though. It’s a group we’d all rather not be a member of.
Also - has anyone tested your parathyroid glands? If it turns out there is a problem with them then that needs to be fixed or the osteoporosis drugs won’t work.
Wow. Thank you for all this info. It sounds really useful and I have already changed my diet to include more dairy (which is difficult for me because I cannot stomach cheese or butter) and walking every day. I really want to do the best I can naturally as I don't want to add any more medication as I take tablets for other conditions as well as mxt. I was feeling quite down until I read your post. Thanks again. I will look at all the sites.
I don’t eat cheese or butter, but do eat yoghurt every day.
Hi F&N, thank you for all the info you posted as it will so helpful to many including myself. x
Thanks for heads up on bone health site.
Thank you for this very useful information. My most recent DEXA scan showed osteoporosis and the rheumatology nurse has asked the GP to prescribe alendronic acid. I am not keen on this, having read about the side effects. I am keen to learn of other ways to approach the problem.
Great advice.
Yes I have RA & SS & have been taking AA + Adcal D for 3 years now with no problems at all….except sitting watching the clock, gagging for a cup of tea for the 30 minutes you have to refrain from eating & drinking after you have taken it .I often have a shower to make the time pass faster.
I wasn’t keen to take it….but a fall fracturing vertebrae changed my mind & I have no regrets. There are alternatives including infusions…but I thought once you’ve had an infusion…if you have a bad reaction you presumably just have to wait it out….but with a pill you just stop taking it.
Only two more years & I can stop….it’s limited to 5 years for most people. If you do decide to take it…..I hope it suits you,
Thank you for your reply and information. Yes I see that not taking it is a risk and I feel pathetic but I am nervous about it and wouldn't have an infusion either. I think I would like to see how I get on with diet and exercise and have another scan in a year, if they will let me.
We all have to decide for ourselves don’t we..I just think if I ever think it’s having nasty side effects I can stop.
But right now my back is really playing up…so I don’t want any more fractures!
Well, that's as good a result as you could have hoped for considering.
As you know I tried 2 oral bisphosphonates, alendronate (alendronic acid) & risedronate (risedronic acid). Actually, check my reply on your previous post, I’m only repeating myself!
One more thing which I didn’t disclose because I feel a bit silly as it's not really how I go about things but my Dad had oesophageal cancer & the side effect re the oesophagus put the willies up me. As you know I did try them & the side effects I had from both & why I came off them weren’t relative. In all honesty I can’t say I wasn’t relieved to no longer take them, especially since changing my diet has kept me within the diagnosis I’ve always had from the first DEXA scan way back when I was first diagnosed.
I think all you can do is be fully informed & if your decision is not to take them then consider other options such as diet. Then see what your next DEXA scan T-score etc is & if it's been effective then all's good.
I agree. Would you be happy to share your diet with me? You can private message if you wish.
It's nothing mind blowing, just twice daily Adcal-D3 1500 mg/400iu (increased from one a day when I stopped risedronate). That & increasing dairy, going up from semi-skimmed mile to whole & cream (including in my twice daily coffee), butter, full fat yoghurts, full fat Philly & all other cheeses I like, you get the idea. I try & include sardines & similar oily fish once a week but it's a trial as I order shekkfish which I can't have. It has resulted in some weight gain as I'm less inclined to exercise when not tip top but as the weather becomes fairer gardening will at least reduce my midriff somewhat if not ease my hand pain! But that's what wax baths are for!
Thank you for this. Yes I am changing certain things in my diet and increasing some. I am going to see if there are recipe books too as there seems to be recipe books for every illness/condition these days. Just a piece of information for you which you will like. Skimmed milk actually has a little more calcium than full fat. Check it out. That will help with the calories too.
I was placed on alendronic acid tablets for two years. At my last test my bone had increased and my dentist said I can even have implants in my jaw now! I had no side effects. Good luck🙋🏻♀️
Thank you for this. That is a positive result.
that’s good news. I seem to recall writing a lengthy response on your previous post. I used AA fir 2yrs, and developed identical stress fractures in both ankles 18 months apart, which was attributed to AA.
I just take AdCalD3, along with a healthy diet and weight bearing exercise. I managed to change my T score from -2.1 to -1.3, which is close to normal for my age. I stopped in 2016, yet my dentist is still reluctant to do procedures in my mouth. This is due to the risk of osteonecrosis of the jaw. Although I stopped 6yrs ago, it has a very long half life and remains in the system for 10yrs. I’m lactose intolerant so limit my dairy, but do ensure I have calcium from other sources such as oily fish. I think any future decision on trying it again would depend how close my T score was to the osteoporosis range which is > -2.5. You have to be comfortable with the decision, no one can force you to take it, as long as it has been based on informed consent. Good luck whatever you decide 🤗
Thank you for this information. Very inerested in doing it naturally with diet and exercise.
I was told not to increase dairy because of my cholesterol level. Now on D cal tablets from chemist too 😂
I know. It all boils down to which illness/condition we would rather have. Is there a balance? Who knows! I do take 2000iu vit D per day. I did take 4000iu per day during the height of the pandemic then reduced it to every other day. I can't find a calcium tablet that doesn't come with vit D.
Vit D helps with uptake.
I’ve been using this Together brand to top up what I get from my diet - I only take one a day. I tried a couple of calcium tablets prescribed by my GP and I found calcium carbonate really upset my IBS - this one is fine for me and I take a vitamin D3 capsule as well
Morning. I was diagnosed with osteopenia when I had my initial RA X-rays 12 years ago. I take Vit D and Calcium. I am also a dairy fiend so intake from food wasn’t an issue.
I need to lose weight as my R knee can be very painful (OA, RA, Hyper-mobility, Fibro). I genuinely can’t remember if I was offered AA but I know I’ve never taken it..
It’s your decision at the end of the day and you’ve received some good advice.
Thank you. I have and I appreciate it.
bi v useful for me reading replies as was diagnosed with osteopenia last year and have long had diagnosis Hashimoto’s and Sjögren’s plus now also systemic sclerosis. My rheumatologist arranged the dexa and said fultium D3 is fine for now will do another dexa in 4 years. Meanwhile I fell hard 3 weeks ago and fractured a lower rib - second time in five years. Was a bit concerned when pain intensified suddenly after 6 days having mostly just felt pain in my right elbow on landing badly. But after 5-6 days it was lower rib/ liver and couldn’t move and breathe in for pain so phoned 111 as saturday 2 weeks ago. A&E consultant phoned me back quite soon after and got me in for a scheduled appt - examined me and decided to do a CT with contrast to exclude rupture of liver. So ended up 8-9 hours in A&E. Liver and vital organs all fine but she said they had identified a fracture of bottom right rib so be sure to rest and phone if any issues breathing due to pneumonia risk esp as highly immunesupressed. But now here I am in hospital for 3 monthly week of vasodilator infusions and gastro appt yesterday consultant said seen CT results and must have been excruciating? But actually pain was all in elbow and now it is again if I lean or brush it past anything - rib is fine again now?!
So husband saw me fall through glass door and is wondering if having osteopenia means that rib fracture only occurred later due to my elbow going into weakened rib when I landed - sort of spontaneous as honestly wasn’t aware of pain in rib at all afterwards so seems most odd that it came on suddenly 5 days after I fell?
Will ask my rheumy about this if time when I see her a week on Tuesday but it’s made me extra aware of these bone density issues as I’m on a restricted liquid diet and avoid dairy as makes me extra nauseous although I love cheese. Try to put pure peanut butter palm oil and sugar free in my smoothies and have a fortified nutritional supplement ensure plus daily. Very useful post thanks - sorry to ramble but on 4th cannula and can’t move as trying to make this one last the rest of day! Very infusion strict nurse keeps eyeballing me as it goes off every time i move! 🥰🙄😉🥴
Thanks Ted. You've had a rough ride. I hope you feel better soon
Oh dear Old Ted, you poor thing - (((gentle hugs))) to you and I hope you feel a lot better soon. x
I’m interested in this post sorry to hijack. I’ve had Osteopenia for several years probably 10 & never been offered anything other than Calcium tablets. Each Dexa scan has showed more progression. Should I be asking for Allendronic Acid or similar instead. I’m told my calcium is over range anyway. I’m going to look into this. X
If your calcium is way over range then ask your doctors to check you for hyperparathyroidism. That can be one of the causes of osteoporosis and if that’s what’s causing your osteopenia then you will need to fix your parathyroid gland before you start any treatment for osteoporosis.
Thank you. I’m actually hypothyroid but levels currently not good x
Your parathyroids are tucked in behind your thyroid gland. Don’t think they have anything to do with being hyper or hypo.
“Parathyroid glandsThese glands, located behind the thyroid at the bottom of your neck, are about the size of a grain of rice. The parathyroid hormone produced by the thyroid glands helps maintain the right balance of calcium in the bloodstream and in tissues that depend on calcium for proper functioning.
Parathyroid disorders lead to abnormal levels of calcium in the blood that can cause brittle bones, kidney stones, fatigue, weakness, and other problems.”
Great info. Thank you. I will speak to GP.
Studies indicate that having 5 dried prunes daily helps protect bones when you have Osteopaenia. May be worth a try if you are ok with prunes 😊.
Thanks. I love prunes. Can I ask where did read that?
According to the ROS lost of foods Dried figs - 2 (40g) provide 100g calcium.
Found this for prunes lifeextension.com/news/vita...
Great. Thank you. I love prunes but not figs.
I think it was a pub med paper in Oct 22 reporting on studies showing prunes were helpful. I can't find it now. If you put 'prunes for osteoporosis' into search there are many articles about it. Happy pruning!
Hi Sheila_G, I was originally on Alendronic Acid. It did not agree with me. I have a condition called Dermatomyositis, which affects both my skin & muscles. I also have difficulties in swallowing. I have now been on Adcal-D3 for a good number of years to prevent my bones detoriating. Maybe, you can discuss this Medication with your consultant to prevent bone loss! I wish you Good Luck.
Melanoma update
CT Scan...
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