Doyou always send a copy of your REMS results to your doctor?

[karmel]

I have declined to have another DEXA scan as I have explained to the doctor that I had a REMS scan she is now asking to see a copy of my REMS results and says the results should always be sent to the doctor . Do I have to send them to the doctor - and do others always send their results please. I have had to make an appt with the doctor to talk about this and feel I should have the right not to have another DEXA or be put on medication..

[Fruitandnutcase]

I have never sent my REMS results to my doctor - or any of the private blood tests I do. Although in the past when I have had a rheumatology appointment I always have an eye test and an OCT scan because I take hydroxychloroquine which can affect eyes, the theory is that my scans are scanned onto my medical records but I’m not sure about that and I haven’t been seen b rheumatology for four years! Says it all really.

I’m not sure they would even be that interested and I don’t see that they have the right to tell you that you MUST do anything.

When you consider how difficult it is to get an appointment of any sort, plus most doctors only want to discuss one complaint per 10 minute consultation, plus it can be difficult or impossible to see the same doctor more than once - in my opinion you no longer have the caring family doctor who knows you like you had in days of old.

Even if you weren’t having REMS scans you are quite entitled to say you do not want to have any more DEXA scans and you cannot be forced to take any sort of medication.

Your doctors may feel a certain course of action such as taking meds or having a DEXA is in your interest - but it is your body.

You could let your doctor see a copy of your scan if you want - perhaps your doctor is really interested in them and hasn’t seen a REMS report before but I’d say it’s up to you.

[karmel in reply to Fruitandnutcase]

Thanks - your point on how difficult it is to get a dr's appt is so true - we cannot get a dr's appt without first doing a triage on line, and attaching a pic of the part of you that needs attention. The dr then decides if your request for treatment is urgent or non urgent so I do wonder how they are goijg to find the time to read my REMS results.

[Met00]

I've sent all my REMS scan results to my GP, but have no idea whether he actually bothers to look at them. He basically has shown no obvious interest in my osteoporosis, only having once mentioned it in passing when I first joined the practice over 5 years ago. The only positive from him was his comment that I'm managing the condition myself and therefore he would "allow" me to have a Vitamin D and calcium blood test twice a year! However, when I had some stomach issues three years ago, he told me to stop all supplements, so clearly had no understanding of how I'm managing the condition! When I questioned stopping Vitamin D, he backtracked, saying it would be OK to continue that because clearly I was buying it from a pharmacy, so it would be properly regulated. I wasn't, I was buying a much better quality one from a reputable online company!

As Fruitandnutcase says, you don't have to agree to a DEXA scan. I certainly wouldn't, if I were ever offered another one. Likewise it's your choice whether or not to send your REMS results to your GP.

[karmel in reply to Met00]

Thanks - as I replied to Fruit and Nutcase I don't know how the dr will find the time to read through my REMS results when we are reminded that you have to do an online triage first for the dr to odecide if you need urgenet treatment or not. .

[t1gernidster]

My GP was interested in my REMS results and noted them on my records. You cannot be made to have another DEXA, I have scoliosis and it would not be accurate anyway. The first one wasn’t but at that time no one even bothered to tell me that I even had the condition.

[karmel in reply to t1gernidster]

My (previous) gp wrongly diagnosed that I had scoliosis and it took her months to refer me to rheumy about it and the rheumy said I did not have scoliosis. - changed dr's practice after this

[SusanEleven in reply to t1gernidster]

A scoliosis can affect the accuracy of results? I didn’t know that. I actually have an S shaped scoliosis. My endo is pushing me (again) to start bone drugs and only told me that my latest DEXA results are probably worse than the report says because I have arthritis in my spine. I just feel confused.

[t1gernidster in reply to SusanEleven]

Yes because you cannot lie in the correct position to give complete accuracy. You should be told that but I have never heard of anyone who has been.

[Hidden in reply to t1gernidster]

It's interesting you say scoliosis affects the DEXA results. I didn't know that. Thanks for the tip.

[MWZ3]

I’m not having any more DEXA scans and one REMS was sufficient as it told me all I needed to know. I’ve refused the medication and glad I have done so. My GP does get my reports. I don’t have a problem with that. I don’t supply them personally as they are sent by the testers.

[pussycatwillow]

I was not happy with the way my last DEXA scan was carried out. Having been osteopenic for the last 12 years I now had a diagnosis of osteoporosis.

I subsequently had a REMS scan which showed I did not have osteoporosis,

I sent the results to GP and requested the diagnosis of osteoporosis was removed from my medical records. It was.

I would be inclined to send your REMS scan

[ROSModerator Partner]

Hi all,

Thank you for your reflections so far, it’s really great to see the discussions. We just wanted to pop in to mention that we have lots of information (including videos) on our website about scans, tests and results, see: theros.org.uk/information-a...

All the very best,

ROS Moderator

[Pinky-6]

I don’t see why you would have to, if you paid for it it’s your results. Would it make any difference? I had a Dexa and was just offered meds. Wasn’t interested in my pain which turned out to be compression fractures, didn’t show on my Dexa so I’m not convinced on the accuracy.

When I can afford a REMS scan and can find where I can get one , that’s what I’ll do. I s been taken off the consultants list, suits me fine!

[karmel in reply to Pinky-6]

I agree with you that if you pay privately for a treatment itshould be your decisiont. Have I understood that you have been taken off the consultant's (a rheumy?) list and may I ask wy they hae done that.

[Pinky-6 in reply to karmel]

Yes that’s right. After the first visit I was only given a follow up as I had two nasty humerus fractures an two compression fractures. After this I was told that’s the procedure for NHS guidelines. I tried meds and was very unwell. If I wish to go down the injection route ( which I won’t) that’s done in a Primary care setting, GP.

[HealthELiving]

I was diagnosed with osteoporosis last August. I had a REMS in November.

I offered my REMS scan to my new rheumatologist and she rejected it saying there is no proof this is a qualified test and she wouldn't know how to interpret the results even if it were.

Oddly enough, my REMS results were far worse from a T-score level than my prior DXA, although the bone strength indicated quite good,

Because I just moved to another state, I opted to pay for another DXA locally (different manufacturer and of course operator) to get another baseline (after 9 months of diet change and exercises) and it was back to osteopenia. I may or may not opt for another REMS... my confidence in the calibration of the machine is not as strong as I would like to depend upon.

In any event, at least the rheumatologist was honest... most physicians have not learned about reading REMS and medical recommendations resulting. She was quick however to urge me to start drugs, which is something I have rejected (and thankfully based upon the new DXA).

It is somewhat unfortunate, but time after time I have found we are our own advocates for healthcare,

[Verauk in reply to HealthELiving]

I dont know your DEXA scores, but I get -3,2 in my spinal cord. My doc prescribed Risedronate. I've take two dosis so far. But I'm afraid to stop with medication wich such score. I exercise , dont smoke or drink and eat healthy.

Are your scores much better than this to make you decided not take medicines? Thanks a lot

[Kellycornwall]

Hi - I received an incorrect diagnosis of OP after having a DEXA scan. Results were distorted due to not taking into account that I have mild scoliosis and incorrect recording of weight/height. Following a REMS scan which showed osteopenia not OP, I sent the scan results (and subsequent ones) to my GP and my diagnosis was changed. Some GPs are more receptive to reviewing these things than others. I am very lucky to have an excellent GP which helps, but it may be worthwhile to send the REMS results in as hopefully it will raise awareness about problems with relying on DEXA and the benefits and accuracy of newer technology.

[HappyGranny55]

You have the right to do or not do whatever you want. I have chosen not to send mine, but I might bring my REMS results with me to my next appointment and see if they are interested. I think it’s best to approach the doctor with an attitude of “what do you think about this or can we talk about this” and not appear to have my mind made up about anything. Since my one REM conflicts with my many DEXAs, it won’t surprise me if the doctor ignores it. I try to avoid confrontation in the office, but the final decision about what to do or take or ignore is ultimately up to me. I always tell them I am open to medication but not ready, which is true, and so far they have understood. I take responsibility for my decision and reserve the right to be wrong, but it is my decision.

[karmel in reply to HappyGranny55]

Just wish that some doctors would\could\should respect our decision

[strongmouse]

You have a right as a patient to refuse treatment or tests. Some doctors are more respectful about the right of a patient to choose whereas others seem to take it as a personal insult! You do not have to send private test results to your GP. Generally it is seen as helpful for your doctor to have all relevant information in case of the need to make future decisions about your care and treatment e.g. if you had a fracture.

The aim should be to work in partnership - you and your doctor together. Unfortunately not all doctors take this approach.

[karmel in reply to strongmouse]

Couldn' agree with you more

I do think that it is a natural ageing process for bones to thin and so of course every time you have a DEXA and your results are worse then you are pressurised to take meds which do increase bone density which shows on your DEXA as an improvement but it does not mean that your bones are stronger...

[Coffee56]

I am amazed that doctors in the UK are actually familiar with REMS. My osteoporosis doctor in Canada had not even heard of it let alone my GP being familiar with it. I told her they were widely used in Europe, and she said that's not possible because I would have heard of them!

[karmel in reply to Coffee56]

I don't know if doctors are familiar with REMS as the doctors I am under want me to have another DEXA scan

[Lunalinc in reply to Coffee56]

same - Outside Toronto area - just had my 2nd Dexa scan yesterday - chat with the scan tech to ask her if this was Dexa or Rems scan - she hesitated - did not know what Rems was -confirmed that this test is Dexa. How poor is that - how can they now know about this newer scan method?

[uncountable3]

While you certainly don't have to send your REMS results, if your doctor is interested enough to ask, why would you not? A better informed doctor can offer better advice. Don't you want that?

[Coffee56]

Although the DEXA Scan is still the standard of care in the UK, It sounds as though doctors in U.K. generally have at least heard of REMS. My OP doctor hadn't even heard of it here in Canada.

[Kaarina]

I forwarded my first REMS scan to the doctor but do not bother now. As far as I can see if they do anything with it it, it is just filed. I am not going to be offered a REMS on the NHS and do not have my OP followed up anymore on the NHS since I refused to take meds. I shall not bother with another DEXA. With scoliosis I cannot get a spinal result anyway. With the REMs I do. I shall be having my third REMS next year. It is expensive but I feel it is money well spent.