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When should I have blood tests? Dexa scan request

Posted , 7 users are following.

jane0118
jane0118

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

24 Replies

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  • Dinah54
    Dinah54 jane0118

    Posted

    Good for you - carry on being stroppy! You should have a Dexa scan now so you have a baseline to check against. I had one and though I had borderline osteoporosis in my spine my hips and legs were good so initially the registrar said I didn't need alendronic acid. The consultant over ruled him and said I must because of the steroids. But I didn't like the sound of it and have refused to take it though accept I may have to after I have my next Dexa scan as I have now been on steroids for two years. As you are only recommended to take it for 5 years anyway I see no harm in waiting till I'm 65.

    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
      jane0118 Dinah54

      Posted

      Thanks Dinah, it's great to have support.

      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
      EileenH jane0118

      Posted

      I'm sure he's paid for those 12,000 patients - and you have offered to reduce the number of prescriptions he's got to write. He can't have it all ways. 
  • Oregonjohn-UK
    Oregonjohn-UK jane0118

    Posted

    Not uncommon to be labelled as 'stroopy' a lot of doctors have no ideal about PMR.  I'm fortunate that my GP, who made an initial misdiagnosis, has now accepted he was not used to PRM symptoms and has been very good at hearing my side of the story - he's been my doctor for about 40 years!  I have concerns about the AA but like you they are not keen in sending me for a dexascan.  A lot may be due to you being outside the 'normal' age range, but the lower end has been reduced, I believe, to 55.  The rest is down to a lot of patience and not rushing to reduce too quickly.  Blood test will show 'normal' due to the preds working.
    • jane0118
      jane0118 Oregonjohn-UK

      Posted

      My GP has had a little help. I had a "quiet word" with someone and mentioned I had been diagnosed with Guillan Barre Syndrome and sent on a pointless trip to see a neurologist, so GP has been spoken to. My GP even complained that I was not 50 - arguing about a diagnosis is bad enough, but arguing with me over my age is riduculous. Most women know when they are 50!

      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
    davidmelville jane0118

    Posted

    Hi Jane, I am curious to see why you had an instant resistance to taking AA. My curiosity is because my Dr put me on AA immediately I started the Pred' and at the same time gave me Adcal-D3 (1500mg Calcium with D3).

    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
      jane0118 davidmelville

      Posted

      Hi David

      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
      EileenH davidmelville

      Posted

      AA was talked up by its manufacturers as being the miraculous answer to elderly ladies breaking their hips. It was said to have no side effects, to be perfectly safe blah blah. They provided doctors with the small machines that supposedly measure bone density at the heel and effectively funded massive studies that proved their point. Unfortunately, said devices are pretty much useless - only dexascans give even half decent indications of bone density. 

      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
      davidmelville EileenH

      Posted

      Dear Eileen,

      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
    EileenH jane0118

    Posted

    Join the club! I'd be a stroppy patient too. I'd say change your GP - is that an option? Although it seems some of the BSR guidelines sank in even if others didn't!

    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
    MrsO-UK_Surrey jane0118

    Posted

    Well, all I can say, Jean is  that I must have been "a stroppy patient" too!  Both my rheumy and GP refused a DEXA scan at diagnosis, saying that there was a 12 month wait, which I knew to be the case in my area at the time.  So determined was I to have that first DEXA to rule out any bone thinning before treatment got too far underway, and also to get a baseline reading, that I decided to pay for a private DEXA scan.  The results were normal, and reduced very slightly during 5.5 years on steroids for PMR and GCA starting at 40mgs, with hips remaining normal throughout and my spine moving just into osteopenia (the range before osteoporosis) but not needing treatment.  A recent repeat scan after coming off steroids just over 2 years ago has actually revealed a small impovement in my spine from -2.1 in 2011 to -1.6 now, which may not be just due to coming off steroids but to a couple of courses of Vit D supplementation over the last 18 months.  Perhaps that could be a consideration for you?  At least if you haven't already had one, a Vit D blood test would show whether you were suffering from a similar deficiency.  Taking Vit D, if required, can lead to more calcium from your diet being absorbed into your body thus helping to protect your bones. It is routine to be prescribed a calcium supplement such as Calcichew (Calcium plus Vit D)  alongside the steroids, although both my GP and rheumy missed out on this, so I was particularly lucky that my bone density remained mostly unaffected by the steroids.

    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
    debbie27473 jane0118

    Posted

    Hi Jane. Just a note of caution. I was automatically prescribed 'calcichew' (calcium + vit D) when I was diagnosed. I had no blood test beforehand. Two months later I saw another gp who ordered regular monthly tests. She phoned me two days later and told me that the reason I had been so poorly was that I had too much calcium in my blood which is just as bad as not having enough! I had to immediately stop taking them. By the way, I am 54 and also refused to take the Alendronic Acid. I was never offered a Dexa scan. I recently saw a rheumatologist and he is not at all happy and has written to my gp to tell her so!  I now question everything and make sure I know as much as possible about the conditions I am suffering from. I'm sure 'stroppy patient' is written large in my notes! Keep it up! Take care Debbie
    • jane0118
      jane0118 debbie27473

      Posted

      Hi Debbie I read the guidelines and asked for what to include! My father, mother and siblings are all diabetic and have some form of kidney damage. The pred is great for my PMR - life is so much better, but GP does need to monitor me to check I am not developing diabetes or kidney damage. When I first saw him back in September he suggested I take 1 gram of paracetmol as I had been in severe pain for 2 months and ibruprofen was not touching the pain. I  don't think he has read the pack!
  • pinkcat10
    pinkcat10 jane0118

    Posted

    Hi  interested to read your report.  I am only 46 and wondering about osteoporosis as already had a fracture.  Can you request the appropriate X-ray or do you have to wait for the doctor to suggest it?  Good on you for being stroppy sometimes it's the only way to make people listen -unfortunately
    • EileenH
      EileenH pinkcat10

      Posted

      It depends where the fracture was and what happened to cause it. Usually if you break a wrist, in particular, and there wasn't a reasonable cause of injury then the orthopaedic people at the fracture clinic will suggest a dexascan to check bone density. Generally it is assumed that if you are pre-menopausal there shouldn't be a problem unless you have certain pre-existing illnesses or there is an unexpected fracture that can't be accounted for. Unfortunately there is a decided shortage of dexa scanners within the NHS so in some places the waiting lists are long. It is possible to have them done privately but whether there is much point without good reason I'm not sure. 
    • pinkcat10
      pinkcat10 EileenH

      Posted

      Hi thanks for that.  Fracture was a wrist but I did it putting my hand out to stop a fall so definate reason.  Think I am worried as suffered from IBS since 18 and told to avoid dairy products.  Now actually appears I am intolerant to wheat.  Basically feeling worried and scared as also had a fractured coccyx but again from a fall but this is still hurting 4 years on.  Worried lack of dairy will have effected calcium and bone levels
    • EileenH
      EileenH pinkcat10

      Posted

      Were you not given calcium supplements to replace the calcium missing from your diet?  You should have been. Wheat intolerance can cause a lot of unpleasant symptoms - mine was a really itchy rash! No wheat, no rash - luckily I can eat other grains though.

      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
      jane0118 EileenH

      Posted

      Sorry Pinkcat that you are having an anxious time. I also broke my coccyx, but as a child. My friend in dairy intolerant and so takes Calcium and D3 tablets.

      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
      Oregonjohn-UK jane0118

      Posted

      Jane - my wife works at the Southampton University Hospital NHS Foundation Trust!  We live in the New Forest.
    • EileenH
      EileenH jane0118

      Posted

      Yes, a lot of people have commented about how clumsy they were before pred - and I used to trip so easily before pred.

      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.

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