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Waiting for Xanelim ‘cause anti-CD11a Worked Well
from Howard R.

Hi Ed.  I too was a phase III trial volunteer here in Portland, and also stumbled across your site after Googling anti-cd11a and will definitely be back. Lots of good links. 

I'm 39 and have had P for about 30 years.  If the cut-off for moderate is 30% coverage, my skin is just ready to tip from moderate to severe. 

Anti-cd11a was utterly fabulous for me during and for a few months after the trial ended.  [At least 11 articles in the Archives containing “anti-cd11a” — a.k.a. Xanelim, a new biologic immune-suppressing drug — use Search on the home page. –Ed]  I wore shorts and a tank top or short sleeve shirt comfortably in public for the first time in probably 20 years. Now it's been somewhere around 3/4 year since the trial ended. Coverage is probably nearly as extensive as it was before the trial, but with some changes that are notable but I would hesitate to say they are due to a rebound effect.

New areas, like ankles, backs of the knees, upper back/shoulders and, regrettably, face are flaring. I still have large clear patches on my torso, but they get smaller by the week. Flakes are much finer, almost like a mist, without big chunky flakes like before.  It’s as though the spots have gotten thinner.

After getting almost completely clear by poking myself with a needle a couple times a month, I've been loathe to work hard on it like before. Occasionally UVA and lots of off the shelf moisturizer is about it.  I also have 2 little ones in diapers, compared to 1 before, a more intense workplace, world events, domestic terrorism, etc., so who knows if it's a rebound or just a combination of increased stress and lack of effort on my part? Nevertheless, I am eager for Xanelim hit the market.

Thanks for the forum! –Howard R.

*****

Ed’s Response:  I’m so glad you shared your anti-CD11a success with us, Howard.  Most of the emails in the archives have come from people with less than satisfactory trial experiences (especially headaches and bad rebounds).

You’ve lifted my spirits about Xanelim quite a bit.

The way I look at it, rebound is the price we seem to have to pay for any relief that lasts awhile.  The same is true with ALL the currently approved drugs, including Methotrexate and Cyclosporine.  If you stop these regimens and don’t immediately start something that’s strong enough to handle it, rebound happens.  (When I moved from Methotrexate to Cyclosporine a year and a half ago, for about 3 months we “stepped down” the MTX and “stepped up” the cyclo.  I had no bad rebound, so either this worked, or moving from MTX to Cyclo thwarted a rebound, or I wasn’t going to have one anyway.)

I want Xanelim to work, even though I’ll probably try another biologic first (Enbrel, if they ever make enough it) because I suspect the current rule of thumb, that nothing works forever, hasn’t been overruled by the new drugs.  I hope I’m wrong! — But I’m not banking on it.  And, if it’s true that these new drugs, like their predecessors, will eventually lose effectiveness for any specific patient, we will still want alternatives.  We need the arsenal and I’m glad new technologies are providing fresh choices. 

Stay in touch, Howard.  We’ll want to know when you get on a Xanelim regimen and how it goes.  -Ed

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