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Holding Off Starting Methotrexate
from Keren S.

Dear Ed:  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!

Although I’ve 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?). 

Although I’d 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 subsidized.

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.

Reading your 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 blindingly obvious.

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 levels!).

If it doesn’t work then Methotrexate is the next step and, after reading your diary, I won’t be so scared – thanks.  -Keren

*****

Ed’s 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? 

For more 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

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