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"Severe Osteoporosis" diagnosis. Now significant improvement.

Posted , 13 users are following.

Juno-Irl-Dub
Juno-Irl-Dub

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

 

 

4 likes, 60 replies

60 Replies

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  • MsCamboot
    MsCamboot Juno-Irl-Dub

    Posted

    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. 👏😀

    • Juno-Irl-Dub
      Juno-Irl-Dub MsCamboot

      Posted

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

  • Anhaga
    Anhaga Juno-Irl-Dub

    Posted

    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! cool 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.  

    • Juno-Irl-Dub
      Juno-Irl-Dub Anhaga

      Posted

      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

    • Anhaga
      Anhaga Juno-Irl-Dub

      Posted

      You never know!  All the best.

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

  • kathleen65757
    kathleen65757 Juno-Irl-Dub

    Posted

    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.

    • Juno-Irl-Dub
      Juno-Irl-Dub kathleen65757

      Posted

      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 

       

    • kathleen65757
      kathleen65757 Juno-Irl-Dub

      Posted

      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.
    • kathleen65757
      kathleen65757 Juno-Irl-Dub

      Posted

      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.

    • Anhaga
      Anhaga Juno-Irl-Dub

      Posted

      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.  

    • lynne73895
      lynne73895 Anhaga

      Posted

      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

    • Anhaga
      Anhaga lynne73895

      Posted

      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.  

    • Mollysuki
      Mollysuki kathleen65757

      Posted

      I agree that you should respect others choices about how they manage their OP.  I left one forum(Facebook) because of some very strong opinions on those that choose to take the medication route. You have to choose what I feel is right for you. So keep doing what you’re doing Kathleen. Enjoy your day 😊

    • kathleen65757
      kathleen65757 Mollysuki

      Posted

      Thanks. We can only do what we feel is right for ourselves. Mine is a gut reaction. My sister who is like my thin double has had issues with biphosphonates and prolia so my gut was right. However, who knows down the track. Also, I think no one should be hurried into a decision. Only decide when you are ready to do so. You weigh up pros and cons and then look where the top score is. Being fully informed is also important. 

      Having differing opinions is good too because if we all agreed no one would learn anything. Keep researching and improving whatever you are doing is the best way to go.

      I learn more every day.  Because there is breast cancer in my family, three close, I could not take hormone replacement which has impacted my bones. Would I have taken that risk if I had realised the 8mpact on my bones? Who knows!

      All the best to you Mollysuki...

  • Mollysuki
    Mollysuki Juno-Irl-Dub

    Posted

    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. 

    • Juno-Irl-Dub
      Juno-Irl-Dub Mollysuki

      Posted

      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

    • Mollysuki
      Mollysuki Juno-Irl-Dub

      Posted

      Morning Juno. Yes it was very difficult when I had seven fractures. Three refused to heal so my consultant suggested vertebroplasty on those three. I’m having physio at the hospital where I had the procedure done. On my follow up appointment it was discovered that I had a new fracture! We decided to leave it to see if it healed on its own. It hasn’t so I will have vertebroplasty on that one. I’ve always been active-yoga, Pilates, Barre classes and as I don’t drive my mode of transport is walking.   I’m also waiting to start a hydrotherapy it just for people that have OP. So I’m sure that will help. You lose confidence after so many fractures and I’m very aware of my posture. I’ve probably been too caution. But I’m slowly getting there with great support from family and friends. I do believe that you make the choices that you feel are right for you and shouldn’t be judged if it’s not one that you agree with. Have a good day and find what feels good 😊

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