Hi everyone, this is an update from my posts in Health Unlocked.
I saw a rheumatologist in Nov 25, & did not want to go on bisphosphonates as I had not fractured. I asked about HRT & he felt it was not appropriate. To find out what my bones were doing the rheumatologist suggested a Bone Marker test (P1NP) which came back as normal ie my bones were not being broken down & being remade outside the normal range (if that makes sense) & he felt that I did not need medication. So, I started HRT May time via The Newson clinic as I did not want more discussions with the rheumatologist & wanted something that might help to help prevent bone breakdown.
Fast forward to today when I had a REMS scan with Dr Birch. As others have said, he was lovely & we were able to have a discussion about my REMS scores, which are still in the osteoporosis range, but I have strong, quality bones. I felt this was the first time I was able to talk about me & my lifestyle. Given that I have not fractured & have strong bones, he felt that my decision to go down the HRT route was sensible.
Although REMS cannot be compared to DXA, I would wholeheartedly recommend it to people as a way of giving you a guide to see how you are progressing.
REMS is not funded by the NHS. It is a fairly newish technology & uses Ultrasound waves. REMS stands for Radiofrequency Echographic Multi Spectrometry. It is similar to DEXA in that it measures bone density, but it also looks at the quality of your bone (ie strength). As it is does not involve x-rays, you can have it more frequently, for a price.
However, you cannot compare the results to your DEXA scan as it is like comparing apples to pears & it is not seen as the gold standard of DEXA. The Royal Osteoporosis society has a little bit on REMS.
Here is a link to a YouTube video on i, if I’ve done the link correct - You tube video on REMS
I was wondering why your rheumatologist didn’t think that HRT was appropriate? I don’t know what your age or your t score is. I’m newly diagnosed in my fifties and am considering HRT myself. But not sure whether a spine t score below -3 needs stronger meds.
It’s good your rheumatologist did a P1NP test for you. Did he do a CTX as well? I thought you needed both to check bone activity.
He thought it wasn’t appropriate mainly because I was over 65, although as I discussed with him, there had been little research done on HRT with women over 65. I am a person who believes very much in evidence-based care (as a retired nurse lecturer), so I had looked at the evidence & found it lacking in terms of HRT in women over 65. He said that we shouldn’t really prescribe medication on T scores alone & needed to try & find out the strength of the bone or what was actually happening to the bone hence why he thought looking at P1NP would be useful.
P1NP - I think he only did that as I think that CTX & P1NP work together ie CTX measures osteoclast activity & P1NP measures osteoblast activity. A high osteoblast activity suggests that the body is having to make bone fast to compensate for a high amount of bone being reabsorbed.
I am having another DXA in October & then seeing him again in November, so I’ll update everyone then.
Sorry, I’m a bit confused if the CTX and P1NP work together why would you just have the P1NP. I’d have thought you need both. But I’m new to all this so am just learning.
I’m glad you are having a follow up appointment with your rheumatologist. And it sounds like he is considering lots of factors not just t score which is really good. I wasn’t sure whether if you don’t go on bone meds the NHS rheumatologists would continue to see you? I thought if you refuse bone meds or don’t need bone meds that they may not continue seeing you. It would be reassuring to know that isn’t the case.
Will you be having follow up bone marker tests (P1NP and or CTX) through the rheumatologist to monitor whether your HRT is working? I would assume this is important as you may not be absorbing it or on a high enough dose.
I also had a REMS scan a couple of days ago as I wanted another dimension to help me decide how much longer to stay on Bisphosonates.
Maybe I’m guilty of over-testing as the whole experience has left me feeling overwhelmed with information. My DEXA showed my hips to be in normal range and my spine osteopenic. Now, Rems is giving an almost identical spinal result but much worse for my hips… osteoporosis. The advice was to do more resistance work on my hips as weight training is obviously working well for my spine. I do work hard on my hips… anything that adds resistance to the muscle, works the tendons which, in turn stress the bone, encouraging the osteoblasts to get working. I was told that in terms of size/build I’m a hummingbird rather than an elephant so my bones lack density.
As far as looking at diet, lifestyle, exercise etc, Rems offers far more support, taking the whole person into account. We are more than just numbers and various results. I now have two sets of tests, and therefore two baselines to compare. As regards the science, I didn’t feel either test was comprehensive, but, neither claim to be. I’ll continue to monitor my own progress and see if I can discuss drug continuation (or probably not) with my gp early next year.
My best results regarding my own sense of well-being, confidence and strength is my exercise regime. 2. 5 hours at least a week of weights and resistance, the same amount of time running (about 20km across the week) lots of brisk walking and a healthy diet, paying particular attention to calcium and protein intake.
What are other’s thoughts who have had both DEXA and REMS?
I agree wholeheartedly with your comments re REMS. I think the over testing is a real issue for all of us, but for me, I suspect it lies with the lack of access to real support.
I have not had REMS before, but found the experience far more relaxed than the DXA and there was time to discuss the findings and look at personalised strategies that would help me, rather than a ‘recipe’ care approach.
The cost is not cheap. It is over £200 at most clinics (I think). I had a REMS scan via Osteoscan, who have a variety of clinics around the country. A quick google on REMS clinics should let you know what the availability is near your area.