Worried after visit to doctor today

My GP weighed me and said I had put on a stone in 3 months. Then he tested my blood via finger prick and found my glucose levels were pre-diabetic. Next, my blood pressure had gone up.

He said I had been reducing the steroids much too slowly, which I disagree with as I don't think from 20 mg to 12.5 mg in 3 months is too slow. I explained that if I only reduced when no longer in pain from a previous reduction.

Anyway, I am having full blood tests next week and my main worry is that he said if my glucose is still high he will take me off steroids and put me on Azathiaprine, an immunosuppressant drug. I have read about this one and it is very nasty. It can even increase the risk of getting certain types of cancer. Has anyone else been put on this drug and, if so, has it helped? I am scared of this drug and scared my pain will return.

I am going to try to get my glucose levels down by next Friday but this probably isn't enough time.

Any advice will be much appreciated. Thanks, Badgergirl

19 Replies

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  • Hi Badgergirl,

    My Rheumy just started me on Azathioprine a week ago, to help me reduce steroids. I have yo-yoed between 10-8mgs since March last year, due to GCA type symptoms, but biopsy is negative (although was taken 10 months after starting Pred), MRI is normal and bloods normal. It is early days as I have started on a low dose for first 4 weeks, so far Im tolerating it fine. Im told it takes 6-12 weeks before you notice effect from it. I would hope your GP would slowly reduce the Pred whilst you wait for the Azathioprine to kick in. It is not normally used on its own for PMR but to help with steroid reductions. Hope this helps. Runrig x

  • That's helped a lot, thanks Runrig. I wish you well on the drug. Do let me know how it helps the PMR once your steroids are reduced.

  • Of course I will. My Rheumy says that most people tolerate it well, and because you are monitored every 2 weeks with blood tests, the first sign of problems the drug can be stopped. Unlike Pred where you have to taper slowly even when side effects occur. The cancer risk is more related to patients on it to avoid transplant rejection, who are on much higher doses.

  • Well that's a relief about the cancer at least!

  • Oh dear - another ignoramus about PMR and pred it seems!

    Azathioprine on its own does not deal with PMR - the theory is that it is a "steroid sparer" and changes the way the body metabolises pred so you can get away with a lower dose of pred whilst taking it. The jury is out as to whether it works.

    There is a paper from a top expert about reduction schemes for PMR which you may find helpful for your GP:

    Our approach to the diagnosis and treatment of polymyalgia rheumatica and giant cell (temporal) arteritis. V Quick and JR Kirwan.

    Here is the link:

    rcpe.ac.uk/Journal/our-appr...

    They give an excellent reduction scheme for PMR which helps to avoid flares. It is aimed at GPs who don't always manage PMR well so your GP shouldn't get upset about having it handed to him. It is "free to air" so to speak so you can download/print it off.

    I put on 33 lbs on one form of pred, I am far from alone. You can help the weight gain by restricting carbs and both BS and BP can be controlled with medication and exercise - though you wont' manage that without pred. I know, I'm wearing the BP t-shirt, I eat so little carb that BS is not a problem. Yes, pred has side effects - but if not taking pred leaves you immobile and in pain there is no point not being pre-diabetic, if you see what I mean.

    I suppose TRYING azathioprine might be fair enough - it might work for you. But he shouldn't panic about pre-diabetes and use stopping pred as the means of dealing with it. If you are left immobile the BS and BP problems will be even worse.

  • Thanks PMRpro once again! I have that paper and although I did explain to my doc the reduction plan I was using was accepted as standard I didn't mention the paper. Perhaps I should but I don't think he's the type that will read it. I can only try!

    I started my new healthy eating regime today and hope he will change his mind when he sees my BP and BG will have gone down eventually. I was walking 3 miles a day too until the weather got so bad and put me off going out. The walking starts again from tomorrow.

    If he puts his foot down I will just have to try azathioprine and hope he uses it in the same way as Runrig's rheumy without stopping my pred completely.

  • He can't (or mustn't) stop your pred overnight - that WILL make you ill!

    Is there another GP in the practice? Or another practice you can switch to? I met GPs who were hopeless - but another in the practice had dealt with PMR before and was brilliant when the consultant was an idiot. I hadn't seen her before because she's been on maternity leave. It does pay to shop around. Which shouldn't be the way the NHS works ...

  • I don't think he would do that. He knows they must be tapered - just thinks I'm going too slow. I wouldn't let him anyway. I would protest so much he would have to give in to me! I have a drawer full of packets of pred....

  • I wonder why so many think you can rush down pred in PMR the way you do it in acute illnesses. Kirwan and co take 3 months to go from 15 to 10 and then leave you at 10 for a year - wonder what your GP will think of that?

    There was a mega panic a few months ago when my husband had a random fasting blood sugar that was borderline, so they did a glucose tolerance test, also "pre-diabetic" - sent to the dietician who said "nothing I can do - you already don't do anything I would suggest". So they finally did an HbA1c (the long term BS check) which was bog standard normal (the same as the GP's). Some people have high fasting levels - and he eats so little carb normally it actually caused the glucose tolerance test to be wrong (he was given more carb in one glass of lucozade than he normally eats in a whole day). That hadn't occurred to anyone.

  • So my reduction from 20 to 12.5 in 3 months is quite normal! I' will be interested to see what my blood tests show next week. I wouldn't be surprised if they are normal too when I have cut out carbs

  • Hi Badgergirl,

    I am not sure that GP's can prescribe Azathioprine, certainly Methotrexate and other immunosuppressant drugs have to be prescribed by a consultant.

    A random blood sugar test doesn't mean anything, you need an oral glucose tolerance test to confirm raised blood sugar. The same is true of BP readings, you need to look at the trend.

    Is it worth asking for a referral to a Rheumy so if high BP and blood sugar do become a problem you will have an " expert " weighing up your treatment options.

    The bottom line in prescribing is weighing up risk v benefit. Only you can decide if the pred side effects are less burdensome than the PMR symptoms. I hope everything works out ok for you.

    Best wishes

    Keyes

  • The good news is that he has agreed to refer me to a rheumy. My GP did loan me a cuff and digital monitor so that I can see the trend. Already today my BP is normal!

  • Hang on - I've just reread your post - "he tested my blood via finger prick and found my glucose levels were pre-diabetic"

    That WAS a fasting level I trust? I forgot I was going for a "do it all" blood test when I went for my monthly INR (warfarin). I don't eat breakfast anyway - but I had had a couple of cups of tea beforehand. My BS was raised enough for the GP to notice and ask and she was perfectly satisfied when I admitted to having had "English tea" i.e. with milk. As Keyes says - a random BS means nothing.

    As for the weight gain - if you have PMR and can't move you definitely put on weight and are at risk of osteoporosis because immobility is the biggest risk factor for that! I out on well over a stone in the first couple of years of (untreated) PMR just because of that.

  • No, it wasn't a fasting level and I had just had my lunch! Even the blood tests next week won't be fasting. I will insist on a fasting test if he is not happy with my BG after this. It is difficult not to have breakfast though as I must eat before my steroids but I guess I could take them late one day.

  • If he claims he can diagnose "pre-diabetes" from a one-off non-fasting blood sugar he needs to go back to medical school. I do get angry about such claims which are utter rubbish and done to scare the patient into doing what they want you to do. I suppose the current "trend" is to look for diabetes in every overweight patient - fair enough, but do it properly please. You need AT LEAST an HbA1c to see if BS is high over a long period. That I think can be done without fasting and tells you what your BS has been over the last few months.

  • To be fair on my doc I don't think he confirmed a diagnosis of pre-diabetes, which is why he has ordered further blood tests. However, I will be aware now of the HbA1c and ask him for this. Thanks

  • I should have said it differently too! Anyone who draws any conclusions at all from a single non-fasting BS needs some education - the most he should have said was he'd like a few readings and needed to send a blood sample away for HbA1c. Taken at the wrong moment most people could have a dodgy looking BS reading - so they're pretty meaningless out of context.

  • Interesting discussion. You don't need to fast for an HbA1c having looked it up it shows the trend over 120 days.

    It is usually done to measure blood sugar control in diagnosed diabetics, patient.co.uk reports that it can be used to diagnose diabetes but there are a number of important exceptions to this.

    With regards to the fingerprick test, higher levels than normal can be due to traces of sugar on the skin! We always wash the finger to be tested beforehand, I have been caught out a few times in the past with this.

  • I never thought of that - traces of sugar on the skin! Interesting.

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