Confused ,feel like an experiment

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 ? 

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