Reversing osteoporosis

[HeronNS]

Having just had an unexpected and devastating diagnosis of osteoporosis I am anxious to find non-pharmaceutical ways to deal with this. My GP has referred me to an osteoporosis specialist, and no one so far is insisting that I must take medicine - just Vitamin D, Calcium, good diet, and exercise. Has anyone out there tried walking with weights? Any other suggestions? I am pretty sure this is pred related as I have been so very careful to do all the right things since I was at least 35, and even had a job for years which required a lot of lifting and sustained although gentle exercise. Unfortunately I didn't have a base line scan when I first started taking pred and although I upped my calcium intake and made sure to get more load-bearing exercise it's obviously not enough. My GP says I have the risk factors of being a small-boned white female post-menopausal. Wouldn't you think she'd have made sure I had that scan earlier? I only had one in September because I asked.

[PMRpro Ambassador]

Have you got your results? All the figures? Is it really osteoporosis or just osteopenia? Were you on calcium and vit D from the start of taking pred - or is that a kneejerk reaction to the result of the dexascan on the part of your GP?

[HeronNS in reply to PMRpro]

She said osteoporosis. I was shocked and said I had been anticipating possibility of osteopenia, and she didn't backtrack at all. Sometimes I think doctors don't believe we know or will understand "big words". My old doctor who retired about 18 months ago absolutely delighted in using the medical names for our ailments, and then, if necessary, defining them for us. He treated me like an intelligent human being with a life other than my medical history. Certainly my current (since June) GP is way better than the other one I went to for the previous year.

I have been taking calcium since I was in my 30s (half my life) and added Vitamin D when that first became pretty big news a few years ago. I upped the calcium when I started the pred and also made sure I got more exercise. My GP asked me about these factors and my diet right at the beginning. I've lived a healthy life which was why I was so devastated on Tuesday.

[dnitzy in reply to HeronNS]

New user, first time replying/posting on this site. PMR sufferer for 17 months, on 8mg Pred now. Also diagnosed with Osteoporosis a few months back and know it's due to the steroids. 62, small boned woman, previously had Osteopenia even though I've also been taking calcium forever. Refuse to go on medication for the Osteoporosis, as my mom did and had devastating side effects (stress fractures in both legs). You posted this 6 months ago.....have you found anything besides weight baring exercise to help reverse? My rheumatologist said I should try Strontium, been taking it since December, but don't expect any immediate results. Looking forward to an update from you HeronNS!

[HeronNS in reply to dnitzy]

I've added a lot of nutrients, notably Vitamin K2. Here's a link to an article which might interest you: authoritynutrition.com/vita...

(note 2019, not healthauthority, it's healthline now. Google Vitmain K2 healthauthority and you'll find it, the link above now gets blocked by my virus protection).

I'm feeling really well these days, but of course it will still be some months before I'm able to have another scan. I also wrote a little essay describing my "journey" and if you are interested I could private message that to you.

Also, if you haven't already, sign up to the Patient forum on osteopenia and osteoporosis, as there's a lot of info being shared there now.

patient.info/forums/discuss...

[dnitzy in reply to HeronNS]

thanks, just read about K2 and will definitely add it to my supplement list!

[dnitzy in reply to dnitzy]

Heron, can I ask what tapering method you use? and is it working? Are you doing dead slow nearly stop? It seems we are on a similar trajectory..........

I'm starting with a new rheumatologist tomorrow, by previous one, who I loved, left her practice, so until I can track her down again (and assuming she'll take my insurance) I start with a new guy tomorrow. I'm at a difficult point right now, on 8mg and having a lot of withdrawal symptoms, and want to talk over options with him

[HeronNS in reply to dnitzy]

Yes, I've been using dead slow nearly stop.  I've used that with success since being at 10 (having had to go back to 10 when 9 didn't work with original 1 mg per week taper) and am now at 5 mg.  I also believe that dietary and exercise changes (mostly because of the bone issue) as well as receiving low level light therapy have been helpful.  If you are interested in the last thing you can look up my profile as I've made a number of posts about alternative therapy.

I only see a GP every few months to get prescription renewed and have basic bloodwork done. She lets me manage my taper according to symptoms.  

[HeronNS in reply to dnitzy]

Just read through this thread again....  Yes, I would say I've come a long way since then.  Hard to believe it's been six months!  I bought a weighted walking vest which I wear several times a week.  Can gradually increase the weights to make new challenges for the bones.  

[piglette]

I had to ask for my scan too. Luckily mine was pretty good. As PMRpro says what are your results? They may not be as bad as you think they are.

[HeronNS in reply to piglette]

The GP was going to give me a copy of the results but I left armed with the medical excuse for jury duty, a physio referral and a request for referral to osteoporosis specialist and we both forgot.

[PMRpro Ambassador in reply to HeronNS]

Oh well - 3 out of 4 is pretty good!

However - if you really are in the osteoporosis range there is no non-medication route that will improve your bone density in the short term - and by that I mean years, not months. As you have never had a dexascan before you can't really tell whether it really was the pred that is the baddy or whether you were already osteopeneic before pred despite the supplementation and exercise. Some people simply are.

The discussion with the osteoporosis specialist will answer the questions you have so there's little point me directing you places to get information - in the UK I'd say call the National Osteoporosis Society but I know that doesn't apply to you and anyway it is a bit pointless without knowing the scan results in detail.

"Sometimes I think doctors don't believe we know or will understand "big words"" - yes, this is the second such conversation I've had within a few days. Someone was told she has GCA in the aorta - on detailed questioning it turns out there is no inflammation in the aorta, it is in the subclavian and axillary arteries. Really NOT the same thing. The doctors present at the consultation were fudging answers and when it got to more complex stuff blatantly obviously didn't know an answer.

My feeling? I don't mind you telling me you don't know an answer, I do realise it goes badly with the god complex you were taught at medical school - but excuse me, I too am an intelligent human being and you have no idea what I learnt/did in my real life before being "a patient".

[HeronNS in reply to PMRpro]

So I've started lugging a weight around in a backpack when I go for my walks. Can't hurt (it's only a 5 lb ankle weight for starters). February '14 I was standing on ice (very uneven surface), turned to leave the danger zone, left foot slipped, knee bent at bad angle, heard a snap. Thought, "that didn't sound good.' Unable to put weight on leg, at least in part from the wrenched muscles. It was a tibial plateau break. No displacement so no surgical intervention. Healed very well and quickly. I knew there was a risk that the slight OA in that joint would be worsened because of the break, but there was no indication that there was anything else wrong with my bones.

BTW I read somewhere that this is the single most common type of fracture in Canada!