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‘Immune System Overload’ from Cyclosporine
from Bill D.

Just stumbled across the site.  Nice one!  A good resource.

Speaking as one who nearly died from immune system overload after a bad experience with cyclosporine, I need all the support I can find.

Your site is an excellent – no nonsense (except in humour?) resource.  More power to you.

Best regards and thank you Ed.  -Bill D.  (Bolton, England)


Ed’s Response:  Thanks for the note, Bill.  Being someone who has just resumed taking cyclosporine, my ears perked considerably at your reference to nearly dying after a bad experience with that drug.  Your note is a much-warranted reality check.

For me, cyclosporine has been the only medicine to completely clear my skin P.  I enjoyed the better portion of a year with no visible lesions during my first course on cyclo a few years ago.  I stopped using topics entirely.  During that amazing, heavenly few months not even my P-arthritis was active (though this came as a surprise to me, my derm and my rheumatologist).  After nearly a year on cyclo my blood pressure finally began to rise and I was taken off the drug.  Thereafter my blood pressure stabilized and my P lesions returned.

The National Psoriasis Foundation has compared taking the systemic drugs cyclosporine and methotrexate for psoriasis to shooting a tin can off a fence post with a cannon.  The metaphor is apt.  These two drugs interfere with a broad spectrum of immune system function.  Those particular immune system functions that have run amok in flakers, resulting in psoriasis, are among those thwarted by these drugs — which is why they work to improve us.  Unfortunately, so much else about the immune system is "interfered with" by these drugs.

Conscientious derms insist on closely monitoring their patients who take these drugs.  Through frequent blood tests, blood pressure checks, urinalysis and the like they watch for signals that these drugs are beginning to do damage, typically in the liver and kidneys.  When signs are detected early enough and the drug use is curtailed, the damage can be repaired.  But bad things can happen that aren’t easily detected — we have several emails describing this in the archives here.  Sometimes damage to the immune system doesn’t become apparent until that system is called upon for some other reason — to fight off other disease, for example.  When it isn’t able to, sometimes long-term use of these drugs is the culprit.

When I first started to flake, these immunosuppressive systemic drugs were not recommended because I used alcohol.  However, long after my alcohol consumption stopped I still said No to cyclosporine and methotrexate because I’d heard several gruesome stories about the consequences.  Eventually it was my P-arthritis that made me change my mind.  It felt as though I would become permanently disabled (lose my mobility) if something could not be found to stop my PA.  Both a rheumy and a derm recommended methotrexate and so I tried that, first.

Anyway, those stories are told elsewhere here at FlakeHQ (see Articles). 

My point for now is that we need to remain a little fearful of these drugs which for many, like me, do work miraculously.  Those miracles come with a price and, if we’re not very, very careful, the price could become too high.  -Ed

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