Wednesday, 19 November 2008

Back to a Consultant Rheumatologist…

I was discharged from Burton Hospital care when phenylbutazone was withdrawn from human use. Horses can still take it!

In many ways the withdrawal in 2002 of this the original NASAID specifically developed for the treatment of those diagnosed with Ankylosing Spondylitis is more a symptom of the NICE/NHS no risk policy than a valid science based decision..

It is alleged it causes aplastic anaemia though the evidence and statistics for this are kept confidential.

My research found a BMA article quoting an estimated risk of 2 deaths per 100,000 patients. This was done on a trace back from death certificates

“With phenylbutazone the rates varied from under 1 death per 100 000 for men aged under 65 years to 6 per 100 000 for women aged 65 and over. Small numbers precluded estimates for oxyphenbutazone in these subgroups, although a similar trend was suggested. No particular indication for treatment seems to carry a higher risk, the main concern being the use of these two drugs in elderly patients. WH Inman 1997”

Whilst on phenylbutazone I experienced no side effects and all my blood tests were clear so the major health gain in my view outweighed the risk.

When I started on phenylbutazone I couldn’t bend to pick up a milk bottle of the doorstep but 2 years later I’d passed my motorbike test and had ridden over the Alps much to the horror of my Consultant.

I managed to avoid the worst visual effects and whilst I have a hunched back I’ve not “set” in a position that makes me dependent on sticks or a Zimmer.

From 2002 to date I’ve taken Meloxicam that is not as effective and after the stress from my workplace my GP increased my dosage by 50%. Continued stress from my exclusion from work reactivated this chronic autoimmune disease that was in remission and my condition has worsened.

I’ve now lost over 50% movement in my right shoulder and as I’m now getting pain from my left shoulder I decided I really had to reveal the full extent of the problem to my new GP who is now referring me to a consultant rheumatologist at North Manchester Hospital. It’s just a half hour journey by bus so it’s not a problem to get there.

I’m dreading going back into Hospital again. If as my GP suspects it is detached calcified tissue that is the main problem in my right shoulder then only surgery can correct it and then not necessarily fully. I’ll be having a scan to see the cause but I fear I’m one of the rare cases where Ankylosing Spondylitis can spread away from the spine & ribs (both of them are totally fused in my case).

It is somewhat ironic that the evil people I encountered in my former workplace have undone the relief I got from changing gender as a result of controlling my AS.

Still I’ll do my best to fight it again.

Phenylbutazone is not banned on a global basis though if I go back on it I suspect I’ll feel the full wrath of our nanny NHS that always knows better than the patient but then I’m used to the NHS telling me I can’t do things.

My answer is always the same – YES I CAN – I think someone more famous than me uses that that mantra.

God Bless America…

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