Confused ,feel like an experiment

Posted , 3 users are following.

The last few days have been awful. What am I to do . As I have said before been on steroids now for some 2.5 years . Have now got down to 6 mg of prednisalone which has been a hill of up and down proportions after a flare because I dropped to quickly .

Ended up in Luton and Dustable hospital known for its good eye care . Was admitted with severe headache over night . Have had this pain lighter  and sometimes worse since being seen at the lister hospital some 18months ago . It was advised that I saw a neurologist then although I wanted to see a  Rheumatologist. The neurologist then said the pain was multi migraines or neuralgia myofacial  etc .

This time at the Luton and Dunstable hospital thankfully. the doctors their said they sent patients to see the rheumatologist . I got the impression from them they did not suspect GCA as I  did   not  ,also my doctor .She diagnosed me originally with pmr ,but a year ago because pain had never really gone away was helping me to come of the steroids . My esr and crp have come down to normal the esr was always raised above around 30 about evidently crp91.4 . The doctors were happy with the result but as a precaution want me to take 60 mg daily of prednisalone ,which they have implied I was already on ,I was not as said before I had reduced to 6 mg and had pointed out to them .

Hopefuly I will get to see a rheumatologist within the next two weekbut cannot bring my self to up the steroid ,because people are wanting to do the correct thing  ,Knowing that none of us really think that gca pmr is the problem . 

I really do not want to take these tablet until I have seen a rheumatologistrI have already got glucoma cataracts bursts of high blood pressure which I never had before . 

I know that eye sight is the biggest risk at the moment ,however there is no temporal pain when pressed . No pain on Chewing in jaw . Pain in one neck shoulder muscle which feels like stiff neck . Tenderness on head 

I cannot face the thought of many more years trying to reduce a tablet which is only precautionary .

will they refuse to see me if I do not take this amount . Interestingly I now have developed a cough since the last weekend ,and the last few days in the heat of the hospital it has got worse so wonder if it's something viral that I may have caught some weeks ago .

What to do . If any one has had similar probs out there what did you do ? 

 

0 likes, 5 replies

5 Replies

  • Posted

    If you take 60mg for just a few days then you can stop it immediately - you don't have to reduce slowly as you did before.

    It is very difficult to say what you should do - it doesn't sound like "typical" GCA and as you say it COULD be a bug. 

    Sorry - I'm a bit confused about the ESR and CRP figures you quote? 

    • Posted

      I to am confused by ESR and CRP .my ESR has alway been around thirty to thirty five and CRP normal although the reading this time was 91.4 which they seemed happy about . But hay ho I no doubt will find sooner than later .

      Thanks for your reply .I will start taking once I get the appointment through . I am just pleased that for once I am seeing  a rheumatologist . Need some answers.

      We all rely on information from you ,but never ask how you are . I hope you are in good place health wise at the moment

       

    • Posted

      Do you know what the units and normal range for their lab are? I've never met a CRP of 90 that was normal - the units I usually see that would be rather high!

      Me? I'm fine - but I refuse to compromise on pred dose: I take what I need and I manage my reductions. But i do have a lovely rheumy-trained GP and access to the local Head of Medicine whose special interest is GCA and PMR - and who treats me as an equal and hands me print-outs of all sorts of new articles! I think he enjoys it too!

      Hope the appointment is soon.

    • Posted

      I don't know what their parameters are however I'm normally around 21 I believe at my doctors . But as for hospital it has an asterisk by it , but they didn't appear to be worried about that

    • Posted

      So it is high for you - hope they look again! Maybe the GP has some idea?

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