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Author Topic: At a Treatment Crossroads - 9 Months In, Need Support  (Read 1141 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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lmn25

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Re: At a Treatment Crossroads - 9 Months In, Need Support
« Reply #4 on: April 30, 2018, 02:49:11 PM »

Thank you all for the support and taking the time to reply. My doctor says my curve is now at 35 degrees and it will take at least a month to get approved for Xiaflex. I will look into VED ... is there one that people here predominantly use or prefer? Thanks again
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Paolo

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Re: At a Treatment Crossroads - 9 Months In, Need Support
« Reply #5 on: April 30, 2018, 03:34:56 PM »

Hi, member Monty has had good results with SOMAcorrect VED, if you look up his posts you can see some pics he has posted  :)
Paul (paolo)
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WhatNext81

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Re: At a Treatment Crossroads - 9 Months In, Need Support
« Reply #6 on: May 08, 2018, 09:41:13 PM »

A strong suggestion, look into RestoreX traction device. With your hourglassing and curve, it's worth consideration.
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Krime

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Re: At a Treatment Crossroads - 9 Months In, Need Support
« Reply #7 on: May 31, 2018, 10:03:24 AM »

Sounds like you're in exactly the same boat as me. I'm 34 and have had the condition for 9-10 months and have just started trying for our second child at the moment (congrats on your wife's pregnancy). I started with a 15-20 degree upwards curve and would now guess am at about 30. Bottle necking is happening at the curve and I've lost almost an inch in length and narrowed girth. I've been taking 1 pill of pentox every day (versus 2) since I'm getting heart palpatatipns on the meds, along with vitamin E and the odd L'argenine here and there.

I'm scheduled to start $750 verapamil injections on Monday but am nervous and somewhat on the fence. I'd tried an X4 labs extender for a couple weeks months ago and got huge constant pain when flaccid that lasted for weeks. I haven't used it since but was told I had prostitatis which was causing the pain - yet antibiotics didn't help it. I ended up taking natural prostrate sap which cleared up the pain and have been taking every day since. I think it's connected to my Peyronie's disease so have been skeptical to start on traction again. On the other hand I'm wondering if I should just sick to the traction for awhile before trying the injections. The only fear with that is that the condition may move into the chronic stage when the injections would apparently be less effective.
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lmn25

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Re: At a Treatment Crossroads - 9 Months In, Need Support
« Reply #8 on: July 05, 2018, 02:36:32 PM »

11 Month Update --

I'm now at 40 degrees upward curvature. I have a new urologist after my previous one retired. The new doctor really urged me to go back on Cialis even though it gave me head dizziness previously, as well as adding l-citrulline. I have to say, after just 2 weeks of this new regimen, my pain seems to have gradually improved. I don't know if I'm just imagining it or what, but regardless, I'm slightly encouraged. I am in the process of being approved for Xiaflex. This new doctor performed and ultrasound and said that my plaques are not calcified, and also that the plaque is not very dense -- he seemed to think that would work in my favor as far as the Xiaflex treatment goes. Does anyone know why that is? I'm assuming it means that it might be easier to break-up if it's less dense, but I'm just guessing. I'm so desperate for any positive or good news that I'm hoping he's right, and also hoping that the added Cialis/l-citrulline is really helping.
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james1947

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Re: At a Treatment Crossroads - 9 Months In, Need Support
« Reply #9 on: July 10, 2018, 02:58:51 AM »

Plaque not dense, not calcified will brake-up more easy.\If the doctor know how to inject :)

James
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lmn25

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Re: At a Treatment Crossroads - 9 Months In, Need Support
« Reply #10 on: July 11, 2018, 08:08:59 PM »

James - thank you for the insight, that's what I was thinking but it's nice to hear you confirm it. I just found out that my job may be transferring me to another state, so I may have to put the Xiaflex approval process on hold in case I have to find another doctor in my new state. Now I'm worried that by waiting another month to 2 months, I risk the Xiaflex not working as well. I am really hoping 2 months isn't that long in the grand scheme of things. It seems as if life is determined to not let me get started on my treatment for some reason.
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james1947

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Re: At a Treatment Crossroads - 9 Months In, Need Support
« Reply #11 on: July 14, 2018, 05:57:55 AM »

Imn

I don't think one or two months will have some negative effect.
Try to be positive, have a say that "Changing place, changing luck" :)

James
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lmn25

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Re: At a Treatment Crossroads - 9 Months In, Need Support
« Reply #12 on: July 15, 2018, 09:19:26 PM »

I like your optimism, James, thanks!
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james1947

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Re: At a Treatment Crossroads - 9 Months In, Need Support
« Reply #13 on: July 15, 2018, 11:53:20 PM »

I tried to keep optimism even in my darkest times of my life :)
It always helped!
And I had more than a few dark times :)

James
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