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Defeated

Posted , 11 users are following.

margot34956
margot34956

Hi everyone I hope you are all doing as well as can be.

I am so upset today as I have discovered my GP is not taking care of me.

initially in Nov last year I was diagnosed with PMR, put on 15mg pred, for 4 weeks then 12.5 for 4 weeks, now on 10 since 9th Jan.

I have had one blood test, that was to diagnose PMR, a CRP test, result 75 inflammation.

I have been told by GP to start cutting down the pred 1mg every 4 weeks, starting 26th Jan, until I am off them.

No further GP visits, no more blood tests and I have never been offered a bone density scan.

Through this forum, thanks so much to everyone! I realized I should be having a blood test, so I phoned the clinic and asked for one. I got the results today and the CRP is at 14. I have had no contact with the GP regarding this result.

Now I am feeling quite low and defeated, don't know what to do next!

 

1 like, 17 replies

17 Replies

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  • mary19068
    mary19068 margot34956

    Posted

    Hi margot34956

    Were you referred to a rheumatologist at all?

    • margot34956
      margot34956 mary19068

      Posted

      No, no referral to rheumatologist. No scan and no more CRP test. Just told cut down pred 1mg a month.
    • mary19068
      mary19068 margot34956

      Posted

      Hi Margot34956

      That is absurd!!...you have to be monitored and have your bloods tested on a regular basis when you are tapering preds. That doctor needs to be struck off leaving you to your own devices while taking and tapering pred. As already mentioned you have to report this to the practice manager..and you most definitely should be referred to a rheumatologist.....that is total negligence on your GPs part...hope you get some answers here.....keep us posted..

  • BettyE
    BettyE margot34956

    Posted

    My expertise only extends to internet searches which indicate that below 3 is normal and sometimes it can be so low as not even register on some tests so I think you are entitled to query your result. Does the 75 you quote apply to ESR? If so, that also is higher than normal. I think the formula is chronological age over 2 minus 10. I'm 85 so around 30 is ok for me.

    GPs do seem to vary a lot in how they proceed. I was pretty happy with mine but was never offered a Dexa scan either.  As I was unable to take alendronic acid I was just given calceos ( Vit D and calcium ) and that served me well. Did have bone scan when I had my new hip  and by that time I'd been on steroids for 8 years altogether.   Results were excellent which only proves that nothing is inevitable.

    How are your pain levels now?. Do you keep a diary? I found this worthwhile and I just used to ask for an appointment if things got uncomfortable while I was reducing. I remember that when I got to 10 things got a bit sticky and my GP said to stay at 10 for three months. I don't think many of us have been able to reduce in a straight line curve, so to speak, and I doubt whether any doctor really believes that will happen.

    It's horrible to feel neglected but I think we can cheer ourselves up by taking control  and insisting on an appointment when we feel the need.

    I'm sure others will be along with encouragement.

    • margot34956
      margot34956 BettyE

      Posted

      Thank you Betty, you have been very helpful, I don't know what the ESR is, the 75 I quote refers to the CRP, that is the diagnostic test my GP did.

      I am not happy with the GP telling me to taper at quite a quick rate and as you say in a straight line curve, which I have learned from this forum, isn't OK especially when getting below 5mg pred.

      I am very much encouraged by you having been on preds for 8 years and your bone scan was OK. That's awesome!

      I am 55 years old.

      I will also take your advice and take control. I will start by changing GP's

      My pain has never completely gone, I still feel sore in the lower back and hips, especially mornings, slowly getting better throughout the day. Evening pain like a dull ache.

      I did get concerned yesterday as a lady at work also has PMR and her GP is checking her CRP levels 5 days before every taper.

      Bless you for your help!

  • EileenH
    EileenH margot34956

    Posted

    Is that CRP raised (it depends on the lab to some extent and the normal range varies)? Have you got symptoms? 

    Is there another GP in the practice you can see? Who might have a bit more idea what they are doing? Or who is willing to admit they haven't a clue and can't be bothered to look it up? Do you have an approachable Practice Manager? 

    Look up this paper:

    http://www.rcpe.ac.uk/sites/default/files/quick.pdf

    and if you can, print off a copy. If not, just take the link to the practice and tell the GP you have seen, or preferably a better one or, as a last resort, the Practice Manager that you wish to be managed AT LEAST as it describes. You would remain at 10mg for another 11 months before reducing. They find it reduces the flare rate to 1 in 5 instead of 3 in 5 with other reduction approaches - and to be honest I don't think I have seen one that matches what you have been told to do! PMR lasts AT LEAST 2 years for 25% of patients - and in the paper referred to in this article:

    https://www.medpagetoday.com/rheumatology/generalrheumatology/66912

    one of the top PMR experts from the Mayo Clinic found that PMR DOES last a lot longer than many doctors think and it is explained very clearly in the article.

    Your GP may have had a patient he diagnosed with PMR and who got off pred in a year - 81% of patients won't. And he needs to appreciate you are rather more likely to be one of them.

    Oh yes - and say you wish to be sent for a dexascan as is mentioned in the BSR Guidelines for patients on corticosteroids and, if you aren't already on them, receive prescriptions for calcium/vit D supplements. 

    Now I appreciate that this is going to require some courage on your part - do you have someone you can take with you? They don't have to say anything necessarily, just listen and witness. Unfortunately I have to admit that taking a male is probably more useful and seems to concentrate their minds rather more - it's disgusting in this day and age but there you are! 

    • margot34956
      margot34956 EileenH

      Posted

      Thank you Eileen, very helpful! yes I have still pain in the lower back and hips.

      I will print the information, thanks for that.

      Also I am going to find another GP. This current GP is the second one in that practice, the first one said I would be on preds for 2-3 months.

      Yes I am learning to speak out, I am not good at that at all, your information to print will help.

      I will also ask for a dexascan.

      I have not been prescribed vitamin D or Calcium, but have started taking cod liver oil and eating lots of yoghurt.

      Thanks again Eileen, don't know what to do without you!

    • BettyE
      BettyE margot34956

      Posted

      Don't overdo the cod liver oil.  I used to breed Great Danes and some people who though double the dose would give their puppies twice the benefit found they had bone problems. I think it was too much phosphorus preventing the absorption of calcium. Eileen will know.

    • EileenH
      EileenH BettyE

      Posted

      Not sure about that - but too much cod liver oil puts you at risk of getting too much vit A which isn't a good thing.

    • margot34956
      margot34956 EileenH

      Posted

      The vitamin A 425IU per half teaspoon. Vitamin D3 200 IU per half teaspoon. I will go and try to find out the RDI.

      Thank you Eileen I had not though of the Vitamin A

    • Anhaga
      Anhaga margot34956

      Posted

      The Vitamin A you get from cod liver oil is a different form than from vegetables.  It's retinol (or something like that) not beta carotene.  It's supposed to be very healthy and balances well with the Vitamin D also in the fish oil.  I took it for a while but had to discontinue, not because of the Vitamin A but because my Vitamin D level was too high (not a usual problem so unlikely to affect you).  I think if you have few other direct sources of retinol the cod liver oil in a small dose is a good idea.  I'm not sure but I think the beta carotene in vegetables is converted to retinol, and there are no known cases of toxicity from consuming beta carotene.  As far as I know the problems with Vitamin A overdose seem to have occurred from large doses in multivitamins or other therapeutic doses, not from A we get from food, with the exception of some rare items like polar bear liver, which can have such high levels as to be poisonous.  As children in the schools here (eastern Canada) we were given a daily teaspoon of cod liver oil, I think until they started to fortify milk.  

    • Anhaga
      Anhaga

      Posted

      Clarifying - no known cases of toxicity from consuming beta carotene in food
    • margot34956
      margot34956 Anhaga

      Posted

      Hi Anhaga, I did do some research after reading too much vitamin A can be toxic. I came to the same conclusion as you, about the two different types and the toxicity is from the beta carotene.

      I am pleased to read what you have written as it does confirm.

      thank you for that

      How are you doing?

    • ptolemy
      ptolemy margot34956

      Posted

      I read about some guy who ate an enormous amount of carrots and actually turned orange and was quite ill. It may have been anecdotal of course.
    • Anhaga
      Anhaga margot34956

      Posted

      I think I read there were no known cases of toxicity from beta carotene.  The toxicity usually comes from mega doses of Vitamin A from animal sources, usually in supplements.   
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