"Severe Osteoporosis" diagnosis. Now significant improvement.

Bones, joints and muscles
1

Four and a  half years ago I got this diagnosis (age 62) out of the blue. I had no symptoms, no fractures, and the GP had suggested a Dexa scan. All of a sudden I changed from a person who was really active, (even used to rollerblade!) to one who felt fearful and delicate. 

I read about people who fractured turning over in bed, sneezed, or were the recipient of a 'bear hug'. Awful stuff. 

I sought out a good Rheumatologist and found one who had trained in Harvard and practiced quite close. After ordering a batch of tests, I attended for a review. She said that no specific cause was found but perhaps my acknowledged pretty 'woeful diet" in the past   (I'm vegetarian and my protein intake was really poor) was relevant.

She straight away prescribed Forteo and said there was no other medication that would come close to being as effective as this as my spinal T-score of -4.5 placed me at a very high risk of fracturing. So I consented. 

Two years later I finished Forteo and was then prescribed Actonel " to consolidate any gains  I had made"  and to continue the protection of an anti-fracture medication  

I had no troublesome side- effects from either medication.

Last week (four and a half years later, I had a further Dexa scan. My T-score had reduced to  -3.7 and I have had no fractures. This represents a significant 17.7% improvement in my bone density. A few weeks ago while clipping the hedge, I stupidly over- reached and toppled off a 5-step ladder on to the grass. Thankfully I was unhurt, nothing broke. . . .

Briefly, what ELSE was I doing to help myself?

*** Exercise - I'm not great on exercise, though I'm pretty active. I walk the dog each day for max. 30 mins. with a lot of stopping and starting for pee breaks!

Once a week I attend an Osteo Pilates class with an OP physio and then for 10 mins. each day I practice 3 or 4 of these exercises at home. 

*** Diet  - A lot better than in the past, plenty of cheese, milk and yoghurt. Not a lot of 'greens' as I have IBS and they can set it off. 

*** Medication - Was on a reducing dose of  Prednisone for another condition, now stopped.

Forteo, now stopped, and Actonel continues.

Vitamin D, and calcium supplements if needed. 

*** Supplements - Multivitamin only.

The Rheumatologist last week was really pleased with such an improvement and advised me to continue with the Actonel for another 3 years when I have another scan and full review.

My message to others - 

My conclusion from all this: MEDICATION WORKS!  I truly believe that my own paltry efforts and my Pilates sessions contributed maybe 5% of this improvement, no more. 

I completed the FRAX risk of fracture tool and keyed in my scores before starting medication and then the most recent result:

After diagnosis, my risk of 'major osteoporotic fracture' in the next 10 years was 54%( with a T-score of -4.5).

Last week, my 'risk of major fracture' in the next 10 years was 22% (with a T-score of -3.7).

I am well aware that my bones are still in poor shape but I'm confident that I'm doing the very best for my condition and managing pretty well. 

Juno

 

 

2

Hi Juno.

You are very brave to share this on here. I am over the moon with happiness for you. Well done & keep it up. I too have excellent results on medication & doing everything else right too. It's the only sensible way to go. 👏😀

3

I'm glad you are doing so well.  What you are demonstrating is that the wise use of medication can really help people who are in a poor condition, plus the improvements in your diet, etc., will do a great deal to further consolidate your gains.  i look forward to hearing from you in a couple more years to say that you are now able to carry on with the exercise, nutrition alone because your bones are healed enough!  It's a lifetime commitment isn't it?   

I think this is the best way to use the medication.  What we get annoyed with are the doctors who prescribe them when people are not a level which requires meds or "just in case" if a person is taking steroids for another condition, but has reasonable bones.  

4

What about vitamin K2 Juno? I think it is important because it aims the calcium onto the bones. Magnesium is another one. Some can be measured in our blood tests.

I can’t manage the exercise you can unfortunately. Other issues for me!

Lucky that you did not break anything falling off a ladder. My neighbour wrecked her shoulder doing that, not a break but awful damage to rotator cuff, etc. 

I am still resisting the drugs and that is my choice but glad for you that you are improving and happy with your decision. As I have said many times, we don’t have to agree, just respect each other and know that by disagreeing we show a diversity of ideas and views. 

Hope you continue to do well, Kathleen.

5

Brilliant news! Like you I read such scary stuff about taking medication but after having 7 spinal fractures I felt I had to do something. This gives me hope that I've made the right decision. 

6

Hello Juno,  I'm happy for you about your bone density improvements.  Well said re the medication.  I had a recent DEXA scan and was horrified: from -1.6 it has gone done to -2.2, that's a 40% decrease in bone density!  I used to be on Actonel and other medications and lastly Prolia.  Had my last Prolia injection February 2017 and decided not again as I seemed to get far more back aches, and pains.  I eat a very healthy diet, no carbonated drinks, hardly any coffee, I supplement with calcium tablets containing vitamin D3 and my vitamin D3 levels are exceptionally good, I also started taking vitamin K2.  I also walk 2 miles every day with my dogs and mow 1/2 acre of garden with a petrol push lawnmower.  So to see such a dramatic drop in bone density over only 2 years, was devastating.  I know -2.2 is still quite good for a 62-year-old, but I worry about the future and will probably have to go back on to medication, it does indeed work!  Regards, Stefania (living in Waterford). 

7

Hi stefania,  First of all, I would say to you that a T score of -2.2 is not a score I'd be "horrified" about at all!

Apparently, (I can be corrected on this), a woman looses apx.1% of bone density per year after age 50 and, since you've stopped using any meds.,maybe you're just seeing normal bone loss. . . 

Why were you on meds. in the first place?  Have you had some fractures, or were your earlier scores much worse than your present ones? Prolia seems to be a pretty strong drug as first choice for scores in your range (Actonel less so) as some people are able with a lot of effort to bring readings at THIS level back to the normal range. . . 

Are you being treated by a GP or did you attend a Rheumatologist or Endocrinologist for an overview and have you been thoroughly investigated for all possible OTHER causes of your borderline OP? If you did, what did they say?  If you did, you can also get a second opinion. If you haven't seen a specialist,  I definitely would beg or borrow to see one. . . . if only for your peace of mind.

Stop worrying. It looks to me as if you're making loads of effort to improve things and they may well work, though slowly. If not, there still meds, there for you in the future - maybe much improved and more effective ones!

J

8

Hi Kathleen, I actually asked the consultant last week about K2 and should I take it -  and she simply said that she doesn't recommend it for anyone. Unfortunately, this was at the end of the consultation and there was no time to question why. Before that, I had asked her -  can someone with OP who makes serious efforts with diet, exercise, supplements etc., but NO drugs, improve their bone scores?  She said - only if their scores were in the "marginal" range, not otherwise. Angaga has written comprehensively about this.

 Obviously my consultant is only one expert.  Maybe future findings will be different. 

Re. your comment about not being up to exercise. You should check out "chair-based exercises" which are really safe (can't fall!) and are really good for you. When I worked in a hospital we used to give out a booklet detailing specific chair exercises and the patients (all ages) found it really good. The physio. used to say that

" only the dead can't do some exercise". That used to rouse them a bit!!

Kind regards, J 

 

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Anhaga, to be honest, I don't think I'll ever get to the point where my bones will heal enough to the point  where exercise and diet alone will do the job to keep them from fracture.   I see OP as a  chronic health condition where, a drug holiday might be the best that's on offer. But hey, who knows? Thank you anyway for your kind words. 

J

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MsCamboot, thank you very much for your kind response. And - I'm not brave at all!!   J

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Mollysuki, Keep up the good work. I can only guess how awful it is to experience one fracture, never mind 7!!

In my head,  with your fracture rate, there is only one effective treatment response. I WOULD, however, seek out a physiotherapist specialising in OP patients, even for a few sessions. They teach basic stuff first - how to bend without the risk of fracture, how to lift stuff, how to turn safely (say, in the car), how to improve your balance to help prevent falls,  and, most importantly, how to exercise to strengthen your back muscles to protect your spine. Vital stuff, and quite good fun if you do it in a group!!!

Keep well, J

12

I manage some but not what a lot can do. Sitting is actually difficult for me but I do some walking. I have arthritis in the neck and shoulders and back etc. The discs seem to cause most of the trouble for sitting as there is a nerve going down into the sacroiliac. Having more than one thing going on makes it a bit of a challenge but I do try.

13

K2 is very popular here. The packet does not even say might or may in regard to helping aim the calcium onto the bones. It states it is backed by clinical trials. Getting it out of the arteries is a bonus. I have only been on it for less than a year.

I agree that people who only have osteopenia have a better chance of improving their bone mass without medication.

All the best...Kathleen.

14

You never know!  All the best.

Thanks for letting us know you are doing well, by the way.  Nice to hear from you.

15

The rheumatologist who presented at the bones progam I attended at my local hospital merely declared, when asked, that there had been four studies on K2 showing it didn't work.  The dietitian (young and inexperienced) at same program had never heard of K2.  I went to Google when I got home and saw the four studies she referred to, which I think may not actually have differentiated between K1 and K2, but there is loads of information about Japanese research, and a Japanese researcher is on record as saying he believes natto can be considered a genuine superfood!  At least we know it does no harm, although people who take warfarin type blood thinners need to take it with more care, and after consultation with their doctor.  It doesn't affect blood clotting as much as K1, just as K1 doesn't affect bone health as much as K2.  

16

How long were you on Prolia?  This is the medication which has been found to result in rebound osteoporosis after being discontinues, so you really ought to have been put on a different medication for a while, as a bridging therapy to prevent the rebound.  But as Juno says, your results are not bad, even with that increase.  I don't think denosumab stays in the bones forever, like the bisphosphonates do, so I suppose the rebound effect is short lived, but I really don't know.  

17

Hi Anhaga.  Apart from K2 Mk7 from natto, the Japanese also use prescription K2 mk4  and Alendronic acid.  The standard  mk4 dose in Japan is 45mg a day, which would darned expensive in the U.K. Several folk on the NOF Forum say that it still helps bones in doses as low as 5 mg a day.   I buy it in this strength and generally take 2 a day.  

  

Comments about mk4 studies showing that it doesn’t work, unfortunately are relying on  DEXA scans to measure bone density and mk4 doesn’t increase density. Just as  importantly,  it helps with the bone collagen formation,  which gives bone it’s strength and flexibility.  Unfortunately this can only be measured with a bone biopsy which is a none starter test wise. 

Best wishes

18

Hi Juno.  It‘s good  to hear success stories particularly concerning OP medication.  Unfortunately folk who successfully take prescription medication, tend not to visit  OP Forums to the same degree, so we can get an overall imbalanced picture, concerning treatment, which is scary for new members.

Keep taking the tablets!  Best wishes.

19

Yes, I keep reading conflicting advice about which form of K2 is better, and it seems like a good idea to take both if you can.  I get a little K2-4 in a bone supplement I take, but I'm only taking 2 capsules a day of that now, daily dose should be six, plus a different calcium dose at another time of day which doesn't include K2, so I take separate K2-7 capsules.  The form of K2 in most food is MK4, so we get some that way, although usually not enough.  Given that I seem to have improved my bone density through what I do I think I shall carry on this way.  Can't get another DXA scan until late next year at the earliest, which will be three years since last one.  So, we'll see.  

20

Hi Juno,

I was put on Osteoporosis drugs after chemo and when I was on 5 years of anti cancer drugs, which promote osteoporosis.  My mother had very sever osteoporosis and having seen her go from the elegant upright woman to one doubled over and unable to do many things any more, scared the life out of me, so I never doubted taking them.  I never got to see a Rheumatologist.  Only after the last Prolia injection, to which I appeared to react, did I question taking these drugs.  By that stage my back had also taken a hammering, as for the last two years of her lief, I was my mother's main carer (she died January 2017), which meant I was also operating a hoist single-handed most of the time and did a lot of lifting.  My DEXA readings since 2005 ranged between -1.6 in 2016 and -2 around 2010). After the last Prolia (I'd been on it about 3 years) I insisted on seeing a Rheumatologist, only to be told that as a public patient I'd be waiting 2-3 years to see the one recommended for osteoporosis.  I thus opted to see him privately (at considerable cost), which also meant a waiting time of 8 months, but I eventually saw him a few months ago.  He said I should never have been on Prolia as I only had osteopenia, but I will await his reaction when he sees my latetst DEXA.  I know -2.2 isn't bad as such, but seeing such a drop was totally unexpected.  Can I ask you Juno, which OP physio you see in Dublin?  We don't have one in Waterford but I may go up to Dublin to get some advice from him/her.  

Stefania