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Off Starting Methotrexate
Thanks for point me to your Methotrexate
diary. My rheumatologist has talked to me about Methotrexate but I’m
still putting it off at the moment.
Unlike you I haven’t given up alcohol yet and I’m still trying
to convince myself that I won’t ever need to!
experienced every sort of topical treatment, I’ve put off most systemic
drug treatments. For the past
2 years my doctors have been trying to persuade me to try different drugs
but, as you know, PA waxes and wanes, thus I’ve always lived in hope
that flare ups will go away. I’ve
now come to the stage where it never goes away completely and I live in
various degrees of pain rather than pain-free and painful days.
I think I’m lucky that it has taken 16 years to get this far. It
first appeared just after the birth of my son, when I woke up with what
looked like a broken finger (sausage finger?).
had guttate P since childhood I’d never experienced any other P related
disorder however, I’ve had them all in the past 16 years.
I also count myself lucky that as a woman I can disguise my
discolored nails with polish (while they’ve been known to turn black
occasionally, they’re not distorted) and can use makeup on my face when
it’s flaring. I also count myself as lucky to be living in the UK where
treatment is free at the point of delivery and prescriptions are
I think the
slow progress is interesting (and fortunate for me).
My rheumatologist told me that PA follows certain patterns and if
it starts off mildly it tends to progress slowly and is more manageable
(probably due to human nature accepting gradual change better than sudden
change, I imagine). Have you
ever read the biography (by Humphrey Carter) of the late English
playwright Dennis Potter? His PA came on fast and strong and was
debilitating for the rest of his life.
He’s a huge hero of mine – not for having P and PA – but for
being a working-class boy who rocked British TV with his genius and shook
the world with his honesty. I cried buckets the day he died.
If you get the chance you must see the British TV program where
Melvin Bragg interviewed Potter a few weeks before his death, while Potter
sipped morphine for the pain of his pancreatic cancer, while railing
against every injustice he’d witnessed; you will be moved, enraged and
uplifted simultaneously. Potter’s TV play, The Singing Detective, is probably the most explicit portrayal of P
known to the arts. I don’t know if he’s known in the US but he’s
well worth seeking out.
account I recognize the various stages of treatments and have tried
Diclofenac. Unfortunately it gave me severe upper back pain (one of its
lesser experienced side-effects), which was pretty annoying as my
shoulders are one of the worst sites of my PA!
I too have raised levels of C Reactive Protein but I was lucky my
GP explained before the blood test that its only use was to prove that
there was inflammation in the body somewhere and that the patient is sane
when x-rays don’t show an inflamed joint, even when the swelling is
I have now
given in to the need for drugs other than pain-killing anti-inflammatories.
I am in the second week of trying Sulphasalazine and, although it
apparently takes about 10 weeks to get going, I have noticed an
improvement in stiffness and pain in my hands and shoulders (but not my
feet). I don’t know if this
is the drug, but it’s keeping me going at the moment.
I’ve also had acupuncture for my left wrist (the site of
incredible pain) and this has helped on a temporary basis.
I know we
should try not to invest too much hope in a treatment because of the
danger of crushing disappointment – but I admit I’m pinning it all on
Sulphasalazine at the moment (at least it allows me to keep up my alcohol
If it doesn’t
work then Methotrexate is the next step and, after reading your diary, I
won’t be so scared – thanks. -Keren
Response: You’re welcome,
Keren. I’m not sure I could
have handled the pains you have had to endure before deciding to bite
the bullet and try methotrexate. I’m
glad I did, now, because it initially provided me nearly a year of living
joint-pain free, which carried across another year when I used
cyclosporine instead of MTX, and has helped now for nearly another year
after starting MTX again (though not as well this second time around).
Of course, here
in the U.S. we are all quite excited about the government’s approval of
Enbrel for PA. I’ve just
started it myself. It is
supposed to be much safer than methotrexate and, for a significant
percentage of patients that have both PA and skin P, Enbrel has proven to
help both. (I hope this will
be true for me, too.)
Is Enbrel being
considered in the UK?
information on Enbrel, visit this
page at the National Psoriasis Foundation web site.
Regarding Dennis Potter, we are well aware of him here. In fact, a movie based on Potter's “Singing Detective” is in the works. I’m eager to see it. -Ed