Low bow density : Hello My dexa scan came back with low... - NRAS

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Low bow density

linziej profile image
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Hello

My dexa scan came back with low bone density for my age (39) due to steroids. I have been prescribe Adronic acid ( I think that's what it's called) but the reviews are quite horrific. Is there a natural way I can rectify. I take accrete with d3 (calcium) and bought a treadmill as walking is good. The doctor said I need to take this acid as the bones need it to take the calcium to it.

Any advice would be heartily appreciated.

Thanks

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linziej
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Simba1992 profile image
Simba1992

One bad side effect of steroids is the effect it has on bones☹️How dependent are you on steroids? Another thing to check is thyroid function. Hypothyroidism is often an underlying culprit in poor calcium metabolism and also common in RA. An other thing worth checking is estrogen-progesterone balance which is also often affected in favor of estrogen wich effects negatively the function of the thyroid and adds to the inflammatory state.

Do talk to your doc and insist on a compleate thyroid panel and test your hormone balance. If deficiencies found it can be treated in a right way without toxic meds and it's always better to treat the causes than the symptoms. Good luck👍🏻😊

linziej profile image
linziej in reply to Simba1992

Thank you Simba.

I had a thyroid blood test in March along with loads of others. They were fine. I've not heard them talk about hormones so will look into that. As I had fluid in my lung last year I have to stay on steroids until they find a treatment that works due to my esr being over 70 while on steroids. Now on Simponi just had second injection. This is my 5th biologic.

I have also started LDN. No improvements yes as early days.

Thanks

Simba1992 profile image
Simba1992 in reply to linziej

Did you have a compleate panal? Ordinary test often misses. Here something you might want to read:

precisionnutrition.com/thyr...

Simba

linziej profile image
linziej in reply to Simba1992

Hi Simba

Thank you for that. I am unsure of what thyroid tests were done. I was just told they were fine. I shall find out. I have quite a few of those symptoms. Thank you for that.

oldtimer profile image
oldtimer

I took alendronic acid for the five years recommended. No problems except having to make sure I was upright after taking it once a week in the mornings. There are alternatives like an infusion - I think once a year or something like that - look it up!

I did a risk benefit balance about alendronic acid & decided that for me it was worth it.

linziej profile image
linziej in reply to oldtimer

Hi Oldtimer

That is good to hear. My biggest concern is osophagus cancer. I was misdiagnosed with cancer last year. For 3 months I had every scan/test possible. I now have a real fear and research brought up this. I too was told I need to take it for 5 years. Very difficult to know what to do.

Thank you for your reply.

ITYFIALMCTT profile image
ITYFIALMCTT

HeronNS over in the Bone Health forum regularly describes her routine for improving bone health (from osteoporosis perspective) on the Bone Health forum here at HT (and mentions parts of her medical/medication history that might be relevant).

E.g., (might be hidden from you if not a member), HeronNS in the comments: healthunlocked.com/boneheal...

linziej profile image
linziej in reply to ITYFIALMCTT

Thank you for that. I have joined and am away to read and take notes.

Thanks again.

hawker955 profile image
hawker955

Stopping steroids if possible would be a major help. Steroids make the body excrete calcium instead of keeping it in the body. This is why osteoporosis is a major side-effect of long-term steroids. Otherwise, Calcichew tablets, and weight-bearing exercise. The exercise is the most natural way to increase bone density. Swimming and cycling are not so good because your weight is supported. Gym-work, running, anything that involves carrying weight.

hat side-effects are you worried about with the Alandronic acid? The biggest nuisance for me is having to wait 30 minutes in the morning until I can eat my breakfast! I get hungry!

linziej profile image
linziej in reply to hawker955

Hi

Stopping the steroids is not an option just now as my inflammation levels are high.i bought a treadmill for weight bearing exercise and I take accrete with d3. The doctors prescribed it.

The side effects are the oesophagus cancer risks.

I read in a forum that you are opening yourself up to it.

Simba1992 profile image
Simba1992 in reply to linziej

Hope you're taking the vit. K2 with your D. Essential for calcium metabolism. Coral calcium I've heard has the best absorpton. Progesterone also central. Boron supplementation is also recommended to strengthen bones.

linziej profile image
linziej in reply to Simba1992

Hi Simba

I have just ordered k2 and boron supplements. But how do I get the Progesterone?

Thanks again for your help.

Simba1992 profile image
Simba1992 in reply to linziej

I think you should have your progesterone-esrogen balance tested first. Natural progesterone cream can be bought at any pharmacie or amazon. Before menopause the cream should be used under certain days of your cycle so would be a good idea to speak with your gyn. Knowing your estrogen-progesterone balance is very useful information so I would recommend you start with that.😊

Simba1992 profile image
Simba1992 in reply to Simba1992

I forgot to mention a very important mineral for bone health that RA patients usually have a deficiency of, potassium. Here some reading that may interest you.

betterbones.com/bone-nutrit...

nomoreheels profile image
nomoreheels in reply to linziej

Please check with your initial prescribers before starting any supplements Linzie. We're not medically trained, don't know your history, neither do we know if any you choose to buy would be contraindicated with your meds. Simba's recommendation is a good example, before you buy progesterone you should ask your GP to do a PGSN test & maybe ask for your Vitamin D to be checked at the same time, though as we're coming into summer it may not be as necessary. I have mine taken annually & last September & it was bob on. He/she may also be able to advise what you could & what you shouldn't take or even have recommendations for you. This from the British Dietary Association may help determine which vitamins & supplements may be helpful & which may not, bda.uk.com/foodfacts/Arthri..., you could print it off or maybe write a list if you do see your GP.

Gigi71 profile image
Gigi71

Hi Linziej. I have had OP for many years and was on Fosimax(Alendronate Acid, far too long, I believe it caused my HH, I went on to prolia injectons for 3 years, then prescribed Alendronate last August, have come off them as they were causing a pain in my chest. I am to go on Zoladronate infusions shortly, one a year for 3 years, all this as a result of long term steroid use, as well as calseos tabs I have Vit K2 tablets as recommended on Bone Health. I have a good diet and exercise as well. Good luck with how you proceed . X

linziej profile image
linziej in reply to Gigi71

Thank you Gigi

I am not keen on taking these acid tablets at all but don't want to get osteoporosis neither. Don't know what I should do.

Gigi71 profile image
Gigi71

Hi Linziej. I can understand your concern, way back I did all I could to not take them, in the end another low density scan meant I needed to go on them. We are not medically trained, so hard to advise which way you should go. We are all different anyway. As advised to you, look carefully on the Bone Health forum. May help you to decide. I definitely am not happy with the tablets, so hopefully the infusions will address that for me. We also have to be careful with our teeth, I have 6 monthly check ups, due to age my 2 lower front teeth are a problem so will be taking extra care. I also have erosive RA and had many surgeries on my feet and hands, I am on Humira which is controlling the inflammation. I do hope you find a solution for you. Hugs X

I was asked by my GP last week about a dexa scan and I didn't know they had done one 7 years ago with a 3-5 year review, which was before I was on the spinal steroid injections, quick panic and I have an appointment tomorrow. It was interesting because I now have a copy of that confidential report and it was showing osteopenia back then in my left hip amd lumber spine. I have now written the results of the report in a table form so they are readable and easy to compare with this weeks. As others have said the cure doesn't involve toxic medication and I would hope that my normal calcium rich diet, I am naturally skinny, will have done the job and kept it at bay. I will let you know how I get on.

nomoreheels profile image
nomoreheels

I have osteopenia/borderline osteoporosis & have remained at that state for 6+ years. I was prescribed Alendronate (alendronic acid) & risedronate when I failed to tolerate the A but then the R became a problem, in both cases migraines. I admit I was concerned about the detail of how to take them & the possibility of oesophageal cancer with good reason (family history), this is one of many case-control studies but this one in particular is a large one bmj.com/content/341/bmj.c4444

I've been on low dose steroids since 2013 & I've not taken anything other than AdCal-D3 (1500mg/400iu) but my diet includes dairy. My GP who prescribed the bisphosphonates at the request of my Rheumy suggested when I stopped them I ask my Rheumy to ok infusions which I duly did. She was of the opinion the side effects I had on tablets would be worse on the infusion which I did question & my GP thought unlikely but anyhow because of my Rheumy being absent for over a year it was never ok'd.

I have a DEXA scan biennially & last my FRAX score (calculation from results of the scan of 10 year risk of fracture due to osteoporosis) was better than my previous one. I intend to continue without bisphosphonates & keep taking the AdCal-D3 & enjoy by butter, cream, yoghurt & semi-skimmed milk until my score determines otherwise. As an aside at my first cardio examination to check if I was ok to remain on my NSAID (etoricoxib, a COX-2 inhibitor) I had slightly higher disease-related cholesterol result (unmedicated) which statins now work well for, last test was normal for higher risk group, which we with RD are. I've never had a fracture.

This is my experience, yours may be quite different but I think all you can do is take advice from your Rheumy taking into account your FRAX estimated fracture risk, ask for experiences of AA, which you've already done here, & research to draw your own conclusions.

Good luck & I hope you make the right decision for you.

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