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Derm Tries Creative Dosage of Cyclosporine
from Michelle M.

Background:  Derma Smoothe, Luxiq, Diprolene, Olux, Dovonex...

Hello Ed!  I just wanted to touch base with you regarding my cyclosporine dosage.  After a recent flare up, I asked my derm if we could please increase the dosage just a bit.  As I mentioned, I had decreased my dosage to 100 mg daily due to hypertension.  When I first decreased the dosage, I had a relapse of new lesions, but after a couple of months, they had subsided somewhat, although not nearly as clear as when I was on the maximum dosage.  My derm has agreed to let me try 200 mg Monday, Wednesday and Friday, and keep the off days at 100 mg.  I have definitely noticed a difference, although I am almost afraid to tell my derm that my blood pressure has been running about 160/100, give or take.  I know that this can eventually cause me many internal problems, but I seem to need the higher dosage to maintain clearer skin.  Catch 22, ya know?  My derm wanted me to take Norvasc for my blood pressure because she felt that it helped blood flow through the kidneys, but my cardiologist said that it is in the same family as the Verapamil I take for my irregular heartbeat, so he has me on Accupril.

With the increase in dosage of cyclosporine, I don't need to apply as many topicals as often, which is wonderful, because you know how grueling that can be.  My RX plan is 15% of the retail cost of a medication or a maximum out of pocket expense of $20 per RX.  I typically spend on average of about $170 a month on RXs, which beats the retail cost of $2,000 (retail total of last months' RXs).  The retail cost of Dovonex alone costs $350.99 for 200 grams and I get that filled every 2 weeks, and that's only using it 3 times a week.  The retail cost of the cyclosporine is $181.99 for 30 - 100 mg. capsules.  By the way, I use a generic cyclosporine, which is equivalent to Neoral.  I haven't noticed an increase in weight though.  I am on average about 125, and I blame the recent holiday bingeing on a gain of about 10 pounds, which I am trying to currently lose. -Michelle M.

*****

Ed’s Response:   Thanks for the update, Michelle.  The more you write about your derm, the more I like this doc!  No one has ever mentioned to me, nor did it ever occur to me, to consider high/low dosing for cyclosporine when I was trying to find that “ideal dose” to maintain clearance.  Why?  I wonder.... 

If the blood pressure continues to be a problem you might ask your derm about methotrexate.  (I’m probably going back to it in the next month or so.)  It’s not necessarily a better drug for P, but it doesn’t elevate blood pressure as predictably as cyclosporine.  You and I both tend to be hypertensive anyway.  You mention you have a cardiologist:  I don’t suppose s/he was thoroughly delighted at the prospects of you using cyclosporine in the first place. 

Can you imagine trying to manage your P without your prescription insurance?  Many people do and I suppose many of the alternative and dietary therapies written about here were discovered by people looking for lower cost alternatives.

I thought the cost of the strong topical corticosteroids and vitamin-derivative concoctions was outrageous until I started systemic therapies (first MTX and now cyclosporine).  Now the cost of these — as alarming as they are — pale in comparison to the new monoclonal antibody therapies like Remicade infusions (see Remicade Success Story in this month's mail). Because we flakers are a relatively minor demographic in the pharmacological scheme of things, it’s doubtful we’ll see costs ease off.   At least, that’s my pessimistic outlook.  As bad as it is for some to have good therapies priced beyond their means, my anger is going to peak when a cure is discovered and only the teen-tiniest percentage of us will be able to afford it.

Stay in touch, Michelle.  -Ed

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