When should I have blood tests? Dexa scan request
Posted , 7 users are following.
Hi Eileen and the gang,
I have now been on 15mg Pred for 4 weeks since being diagnosed by Consultant Rheumatologist at local hospital. GP not at all happy with dx as I am only 50. Dramatic improvement in symptoms, so I am happy with dx. I have got consultant to agree to do the Bristol protocol of 6 weeks and 6 weeks. GP feels I do not need to do any blood tests really as I had some before strting treatment, just go on how I am feeling. Previously I had normal ESR, but CRP of 18, 23 then 26 at beginning, middle and end of September - he told me it could just be because I had had a cold, he failed to take into account the acute morning stiffness, night pain and inability to walk! I googled my symptoms and found this site so asked to be referred!
Should I have a blood test before I step down, and then how often? I am due back at hospital in March.
Next, as I am only 50, I do not want to take Alendronic acid. The consultant says I need to, as 1 in 3 post menopausal women get osteoporosis. I am a non smoker, drink only in moderation, have a BMI of 24, do not have a family history of fractures, and am not post menopausal, so do not want to take it "just in case" as 2 out of 3 women do not! Apparently my hospital prescribes steriods for 2 years and then does a DEXA at the end of the treatment period.
The BSR guidelines for PMR state that bone protection should be started if the patient is over 65, and if under 65 have a DEXA scan. If starting dose of pred is above the standard 15mg, then start AA.
Consultant has refused scan, GP has said if I do not take the AA he will not be responsible if I have a hip fracture, and he is documenting this in my notes. GP will write to consultant requesting scan and hopefully mentioning BSR guidelines.
I have been labelled a stroopy patient!
1 like, 24 replies
Dinah54 jane0118
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I was told by the hospital to have monthly blood tests which I found quite useful. But in terms of knowing when to taper down I also went by how I was feeling.
Good luck - you sound well in control of things
jane0118 Dinah54
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I would be happy to take it if I was 65, but I am 50!
I am only in control as I found this site, have read all your experiences, and have been pointed to the BSR guidelines and the Bristol protocol.
If my GP had taken me seriously when I first saw him and had not complained that the practice has 12,000 patients, has to dispense 18,000 items per month and is overwhelmed by never ending demand, I would NOT have looked to the Internet for help.
EileenH jane0118
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Oregonjohn-UK jane0118
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jane0118 Oregonjohn-UK
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I will push for the scan, if I have to pay so be it, but I believe the NHS should pay as I am an NHS patient. It does not matter that I am unusual as I am so "young" - if I need care I need care.
davidmelville jane0118
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i never queried the AA or calcium as the Dr said it was the best and safest course. To today I still have not got my mind clear as to what the aversion to AA is?
Best wishes . . . David
jane0118 davidmelville
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I would be happy to take AA if I met the criteria to take it, but I do not. I will take it later, but as we are supposed to only take it 5 years I do not want to take it now.
It can cause problems with the gullet, and my father had heartburn and then major stomach ulcer problem, so I do not want to take AA if I do not need it as the benefits do not outweigh the risks for me.
Other people are different!
Best wishes
Jane
EileenH davidmelville
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Once the stuff was in common use the side effects started to be recognised. It should not be used in ANY patient with a history of gastric problems - many GPs don't appear aware of that. It should never be used without both calcium and vit D levels being checked beforehand and if either is not right being sorted out. If either is low the AA won't work - and it is VERY rare for a GP to check a vit D level despite it being an exclusion criterion for PMR.
Over longer periods it can lead to loosening of teeth and if extractions are required then the healing of the jaw bone can be impaired. It can also lead to spontaneous fractures of the thigh bone - not even a fall required. Both these are unusual but by no means unknown and the real incidence isn't entirely clear - probably higher than apparent. As a result the FDA (the US drugs approval board) has has warning labels put on the pack and said it must not be used for more than 5 years at a time without a break to try and avoid these problems. The stuff stays in your body for a long time - it is built into the bone so it almost certainly will be around longer than you are. If there is a long term problem you can't do much about it, simply stopping doesn't remove the problem. There are no studies about that - the patients given it form that particular study.
I think it is MrsO who knows a lady who was on it for many years - and still developed a fractured vertebra, it had done nothing she was told. Given Prolia she is now fine. It isn't a 100% miracle - and whilst I am quite happy, like Jane, to take it if I meet the criteria I don't see it as a GOOD THING to take it without some indication that I need it. I didn't need it 5 years ago, I probably don't need it now but according to that first GP I would have been taking AA for the last 5 years and risking the side effects.
Taking one drug puts you at risk of side effects - that is how they assess them, in healthy people on no other medication. If you are handed 5 or 6 drugs to take together no one has the slightest idea what can happen in terms of interactions. A plus B may do nothing - but A plus B plus C may well - and the risk increases for every added drug. Very often you take A and it does something so the GP hands out drug B to deal with that side effect. Again, for every drug you add there is an increased risk plus an increased risk of taking it wrongly. The numbers of patients being admitted to hospital as a result of the medication they are on is mindbogglingly high. A study in the UK in 2001/2 suggested that 6.5% of admissions were for adverse drug reactions and admission lasted for up to 8 days or more - at a massive cost to the NHS, in 2002 £466 million. The worldwide figures are around 5% so it fits that figure. And I'm not going to even mention figures for deaths.
(Adverse drug reactions as cause of admission to hospital: prospective analysis of 18 820 patients. Munir Pirmohamed, professor of clinical pharmacology, Sally James,research pharmacist, [...], and Alasdair M Breckenridge, professor of clinical pharmacology)
Take any drug if you are in need of it on evidential results - if you aren't yet in need of it then wait. That is all both Jane and I are saying.
davidmelville EileenH
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Once again you come up with the goods! A big thank you.
I'm two years in and gone through a phase of almost total confusion but am now back on track. If you have not got it then you can't treat it!. I can also see that if you have not got it then you can't prevent it by treating it. Plus if you need something to deal with the effects of something else you are in very sticky ground.
Im not going to publish a blow by blow version of me as it's not useful and will cause too many side issues to cloud the point but and its a big but . . I wish I could have understood what was happening and been educationally involved in my case.
I think that our Dr's and Rhummis do a brilliant job but I can see that PMR just like Lupus caught them out. But just like my mother in law was a Lupus 'guinea pig' so a lot of PMR Patients are the same. I was very unsympathetic to mother in laws mystery disease! Something I feel somewhat chasioned about but it does strengthen my thinking that there are many confused PMR Patients who deserve and need information that will be available in a decade but is wanted now.
Thanks for everything to do, it's made a difference for me and it's not over by a mile but I am so pleased for what i I have learned.
EileenH jane0118
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I was 51 when my PMR started and had a good 5 years of pain and inactivity etc before being put on pred. I had a dexascan within about 3 months of starting pred - you need one there to give the baseline, as well as one after 2 years. I became menopausal just as the PMR went haywire but nearly 4 years later my dexascan was essentially unchanged (can't compare them as they were done on different machines, both were OK though) That was after over 3 years of pred at above 10mg almost the entire time.
Your BMI is - strangely - your biggest risk factor!! Us buxom wenches are better off with regard to osteoporosis - weight bearing exercise stimulates your bones to make more bone and the more weight you bounce onto your bones the better.
I'm with you all the way on the not taking AA "just in case" - after taking 4 tablets I discussed it with a GP who agreed with me too. Another had handed out the usual selection of "just in case" stuff. I have only ever taken the calcium and vit D - which the BSR guidelines used to say was the starting level of bone protection. It has worked for me and quite a few other ladies, some of them well older than me and definitely post-menopausal. I'd fight it out until you are post-menopausal at least...
I live in Italy, standard procedure in PMR here is pred, nothing else. I'm not even sure you get the calcium/vit D without asking - I do. Can you get a dexascan privately anywhere? Yes, you pay but it used to be a reasonable price and may be well worth it.
My bloods never showed anything so testing wasn't worth it. They are only a guide anyway - symptoms are the main thing. But your GP is wrong about CRP and colds - it is ESR that can rise with a cold, CRP is more specific, that is why it is recommended alongside ESR. Other people had them checked before any drop - but in fact they lag behind so the only use there is if they have increased since the last drop rather than are they low enough to allow the next drop (if you see what I mean).
I was once labelled (in writing, in my daughter's notes) as an "hysterical mother". The prat in A&E didn't agree with my suspicions - but, strangely, his top boss did a few hours later. She was admitted and sent to theatre to investigate query appendix. They removed a couple of litres of fluid - no wonder she was in pain - probably due to endometriosis in retrospect. The consultant used her as a teaching opportunity with me present - the prat was standing in the group of housepersons. I prefer the concept of "stroppy patient" personally. :-)
MrsO-UK_Surrey jane0118
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Yes, it would be a good idea to have your ESR and CRP blood tests repeated before any reduction, as you had raised CRP markers at diagnosis. They can be a very useful guide even though latest thinking is that we should go by the symptoms rather than the blood test results alone. I certainly found the repeat tests very reassuring.
debbie27473 jane0118
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jane0118 debbie27473
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pinkcat10 jane0118
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EileenH pinkcat10
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pinkcat10 EileenH
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EileenH pinkcat10
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Are you on pred now? If so a dexa scan WOULD be a good idea. If you are concerned then discuss it with your doctor. My daughter fractured her coccyx in the summer - ouch! I know that can be painful for a long time - it is difficult to immobilise after all!
jane0118 EileenH
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I had a look at the Dexa scans and the British Society of Rheumatologists recommendation is to do a Dexa if you are under 65. I have found that Southampton university hospital does them for £55 and my local private hospital does a package of scan and feedback with consultant at £150. I am waiting for reply to my NHS request. I was so stiff before I started treatment that I regularly fell over, now I am on pred I have not had a fall!
Oregonjohn-UK jane0118
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EileenH jane0118
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I know the BSR guidelines suggest that after 65 patients should be assumed to be suffering from bone density. There are at least 2 ladies who used to frequent this forum who have both been told their bone density is very good - one is over 75 and the other over 80, neither has ever taken alendronic acid and both have been on pred for well over 5 years in total. It doesn't follow these days that being over 65 means you have osteoporosis.
Southampton's orthopaedic department has a good name, don't know about their rheumatology though.
vanessa66630 Oregonjohn-UK
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vanessa66630 Oregonjohn-UK
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