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Author Topic: Couldn’t find a Verapamil URO in New England  (Read 233 times)

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Xavier99

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Couldn’t find a Verapamil URO in New England
« on: September 16, 2020, 02:35:54 PM »

I wanted to give it a shot early on but no one would do it. Anyone know of anyone who still does it? all the specialists I saw said it had poor results and that the best treatment now is xiaflex or surgery when the year mark has hit. Prob too late for me 5 months in now anyway
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35 yrs old Onset 05/01/20 diagnosed 05/14/20. Taking Pentoxofylinne, trental, multivitamin, Zoloft & Tylenol .Traction was painful and made it worse. Lateral plaque by glands 20 degrees left/ narrowing. Lost about 2cm length

peter123

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Re: Couldn’t find a Verapamil URO in New England
« Reply #1 on: September 16, 2020, 02:56:07 PM »

There is many misconceptions around xiaflex. You have to differentiate between not indicated due to inefficiency VS not indicated bc it hasn't been tested yet. In the xiaflex studies there where many exclusion criteria and stupid doctors now suggest xiaflex should not be used for anyone with these criteria. For example later studies have shown xiaflex is just as effective in the accurate stage <6 months as it is in chronic stage. Also it has effect on other types of deformities.. With regards to verapamil it is now regarded as ineffective and the effect of the injections are thought to be due to hydrotensio,n, that is the volume of fluid stretches out and destroys the plaque but you can use saline as well for that.

Based on clinical data the only xiaflex alternative is interferon 2b. It is about 2/3 as effective as xiaflex meaning that around 35% respon with around 25 reduction in curvature vs no benefit in placebo however interferon is also a little expensive, nowhere near xiaflex though. Have you tried asking for that?
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onset of symptoms in February 2020 initial pain when flaccid only which has since improved. 20deg left curvature, loss of girth indent
started oral treatment in march, currently on Potaba 12mg 1200mg Pentox, 2.5mg Taladafil and L-arginin
very depress

jan.schaller1958

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Re: Couldn’t find a Verapamil URO in New England
« Reply #2 on: September 17, 2020, 09:28:03 PM »

I agree with Peter123.

I was told by an internist I know that Xiaflex is just as effective in the chronic as acute phases (I imagine acute phase is less than 6 months,  chronic over six months out). I asked my private health insurance in the US, Kaiser, for which I pay a lot each month, if they would still offer Xiaflex during Covid. This dumb woman I talked to in their urology department in San Francisco wouldn’t give me an answer and made a telephone appointment for me for October 1 with their Dr Otero, who is the only one licensed to give Xiaflex injections. I’ve had this crappy  Peyroines for 5 years and I wish I had gone for that surgery Dr Lue suggested 5 years ago.
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TonySa

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Re: Couldn’t find a Verapamil URO in New England
« Reply #3 on: September 17, 2020, 11:53:57 PM »

But why would you do xiaflex during the acute phase as it can continue to worsen and you’d have to do it again?
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PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.
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