"Severe Osteoporosis" diagnosis. Now significant improvement.

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

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.  

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

Hi Anhaga,  I was on Prolia about 3 years and never had a reaction until the last one last year.  I have never had any fractures but have near constant stiffness and pain in my lower back now, together with a degree of scoliosis.

Oh Stefania how sad for you. That is why Anhaga was talking about that people are given drugs when you could have been helped with natural things like diet and exercise and some supplements like vitamin K2, D if needed, magnesium if needed, etc.

I really hope you are given appropriate care from now on. 

 

Can I jump in here too Stefania. Maybe look at your discs for the lower back problem. An X-ray can see that as well as osteoarthritis. I have both of those as well as scoliosis. There can be more issues than osteoporosis which is silent but the others are not and then add in the osteoporosis and you have something more complicated. 

That's very true. I've lost at least two inches height, but there's no sign of fractures, but I suppose all the other issues in my spine, osteoarthritis and mild scoliosis, and I probably disc compression from seventy years of gravity, are all working to shorten me.  I learned to my dismay that osteoarthritis can make vertebrae appear denser than they are in a DXA scan, but nobody ever told me that.  I don't know if they take that into account when issuing the report?

Hi lynne, Yes, I agree with you that people who are doing well on meds. just 'get on with it' and are unlikely to bother posting their success on any forum. It's a pity though - for the reasons you've just stated.

Anyway, thank you for your post. and keep the bones happy!!

J

Hi Lynne. I also think that some forums are also anti meds and if you do post something positive you then get a lot of negative comments as to why you shouldn't be doing meds for OP. It's a real shame because when you first get told that you have OP it can be quite shocking news for you to take on board and the last thing you need to read is negative comments.

Actually I think in most cases people are just trying to inform others about the dangers of what can be very questionable drugs.  The drug companies were very keen to get as many people as possible taking OP meds, to the point that they even made low bone mass, incorrectly called osteopenia, a disease although it is perfectly normal as people age.  That's the issue:  patients being put on drugs they don't necessarily need, and also not being given any advice whatsoever about what else they can do to improve their bone health.  No one can deny that the OP drugs come with very serious risks, as do many other medications we take, and it's best to be fully informed before starting to take them.  There are ways for people at high risk for fracture, or who have already fractured, to use the drugs more safely, and that includes knowing about lifestyle changes they can make.  

Another issue is the lack of investigation to determine what is causing the low bone mass or osteoporosis.  It could be something which is reversible without OP meds.  But you won't know if your doctor doesn't investigate.  

For sure, Anhaga. So long as people do not abuse then it is a good thing to have a different view because that promotes debate. We learn more when we are provoked into researching and thinking. When Allison and Juno used to debate it was productive as they are both intelligent and rational and I actually liked to read those posts. 

I am only now finding out how complicated osteoporosis is and how much we have to learn through other tests to do with blood samples. Also, to investigate causes and individuals may have different causes.

I think I may have needed HRT but I was not a good candidate because of two sisters with breast cancer.

Just read everything with an open mind and research as much as possible. It is okay to disagree and debate. No one is infallible and we all can learn something even if we only take part of others’ ideas and conclusions. 

It is a process and a journey and people often change as they learn more or have to make a decision because it is time to do so.

Hi Kathleen, I didn't know that ' +4 ' could be a scan result as, unfortunately, I'm much more familiar with the minus side of the scale. Your husband should apply for the 'Golden Oldies' Ironman challenge!!!!     J

I've recently learned that osteoarthritis can give a higher DXA reading, although with a result of +4 there's no chance your husband's reading isn't anything other than excellent!

It is pretty amazing Anhaga! His arthritis is mainly in one knee but I am assuming he probably has it elsewhere too. Mine has shown up in my knee, shoulders, back so I assume it is elsewhere too. Not many people escape arthritis in old age.

Hi Kathleen, It must be hard to progress if you're unable to exercise and therefore all efforts are focussed on diet and supplements. How are your bone scores going?  Have they improved, stayed the same, or dis-improved a bit? 

J

I have helped with the vitamin K2 for sure. Even if you take the drugs it is worthwhile to add the supplements and have a very good diet that supports your bones.

I do manage a walk but I have limits. I have to curtail once the back tells me enough.