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Author Topic: At a Treatment Crossroads - 9 Months In, Need Support  (Read 153 times)

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lmn25

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At a Treatment Crossroads - 9 Months In, Need Support
« on: April 13, 2018, 03:40:42 PM »

Hey guys, I haven't posted here for a while, but I'm in need of support right now. When I first was diagnosed 8 months ago, I had a 20 degree upward curve and hour glassing near mid shaft. I'm 36. I came to this board and with your help, I was very proactive and found a great urologist and started immediately on pentox, ubiquinol, and acetyl-l-carnitine. I was encouraged that I started treatment early and that my curvature was not very severe.

Flash forward to now and my curvature has worsened to at least 30 degrees, if not more (I'm waiting for my doctor to confirm the degree). We were going to do interferon shots 2 months ago, but work unexpectedly took me out of town and I've had to delay that treatment. Since my condition has worsened, I am now working on getting approved for Xiaflex. I have not tried traction frankly because it's an overwhelming amount of info every time I look into it and I end up worrying that I'll do myself more harm than good. My wife is newly pregnant, and we're so very grateful for that, and while she is entirely supportive of me, she is still hormonal, and me worrying about this disease doesn't help matters. We're going to look into therapy for both of us.

All said, I know things could be much worse for me and that many here have much worse to deal with. I'm trying to keep things in perspective and I'm hopeful that Xiaflex will be helpful to me. Any suggestions, feedback, or good vibes you could send my way would be so appreciated. Thanks
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james1947

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Re: At a Treatment Crossroads - 9 Months In, Need Support
« Reply #1 on: April 17, 2018, 06:01:17 AM »

You may want to add low dose Cialis (2.5 mg if you don't have ED) and VED therapy.
Careful with the VED, pump to the level that you feel comfortable and no pain

James
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Monty

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Re: At a Treatment Crossroads - 9 Months In, Need Support
« Reply #2 on: April 17, 2018, 06:06:51 AM »

Hi, i would try VED with hand massage.
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JanBlackSmith

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Re: At a Treatment Crossroads - 9 Months In, Need Support
« Reply #3 on: April 23, 2018, 12:05:30 AM »

in addition to the fact that Cialis is not a symmetrical and not scored
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