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Author Topic: Xiaflex and restorex  (Read 877 times)

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Concerned_wifw

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Xiaflex and restorex
« on: April 10, 2018, 11:45:48 AM »

My husband has suffered for years with this horrible disease. Two years ago he attempted the interferon injections, I believe he had 3. The flu like systems and lack of knowledge, and some unproffesionalism made him decide to look into another form of treatment.
He consulted with Dr Trost at the Mayo last year. He originally told us that my husband was in the acute stage and that it would eventually go away....No, that wasn't the case. Initially he decided to take the wait and see approach. Things just got worse from there. In February of this year he started Xiaflex. Josh, Dr Trosts PA did the injections. Which I kind of found odd...Anyway, he mentioned the Restorex trial to my husband, and offered to give him a devic e if they had any left,  which they did not. He said if he signed up for the trial he would get one free of charge, but that he couldn't get the injections AND be in the trial. He said that we could purchase the device though if he wanted to. My question is this.....is it beneficial to do both??  BTW.....after the first series of shots things seem to be worse now....at 4 weeks he seemed to notice  more blood flow to the head of the penis, but now with in the last 3 weeks an erection is very hard to keep.....pun totally intended. To the point that penetration is extremely difficult. Would low dose cialis help this issue?? 
His next series of injections is scheduled for this week...and once again the PA is administering the first injection, but Dr Trost the second. We definitely have a bunch more questions for Dr Trost.... I may see If we can consult with him prior to the first (second series) injection.
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TonySa

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Re: Xiaflex and restorex
« Reply #1 on: April 10, 2018, 08:18:46 PM »

xiaflex is considered by many docs to be most effective when adding in traction.
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PxD 2 yrs, failed all tx. 9/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS 18cm + 3rte

WhatNext81

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Re: Xiaflex and restorex
« Reply #2 on: April 11, 2018, 01:53:15 AM »

I just finished up xiaflex and using RestoreX in conjunction with treatments. I just did a write up under the Traction Devices thread, titled "RestoreX Update."

Dr Trost and Joshua have both administered my treatments. Both are very expierenced and great with injections. I had one cycle where I was scheduled with Trost the first day and Savage the second. Given the circumstances I asked Dr Savage if Trost could do the second injection. It wasn't an issue and Dr Trost did the injection. I also had one cycle where dr Trost didn't do either of the injections.

Is your husband doing the daily hand modeling? Was he shown how to by any of his team and instructed when to start? Was he advised on how long to wait before having intercourse after each cycle?
Given the circumstances, it could be a psychological issue with the ability to get/maintain an erection. Stress, pain and other factors. All of this and any questions should be discussed with his team. I was put on a low daily dose of generic viagra to be taken at bedtime.
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betterbend

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Re: Xiaflex and restorex
« Reply #3 on: April 11, 2018, 09:21:12 AM »

This is for the US:

When you mention generic Viagra, are you actually talking generic Viagra (slidenafil 50/100 mg) or Revatio (sildenafil 20mg)? Many insurances wont cover Viagra or its generic.  Drug pricing is often difficult to understand, but here is a list of wholesale costs to a pharmacy (more or less):

Viagra (25/50/100) = $70 per pill (approved for ED)
Sildenafil (50/100 = $25 per pill  (generic Viagra - approved for ED)
Sildenafil (20 mg) = $0.20 per pill  (generic Revatio - approved for pulmonary hypertension)

Cialis (2.5/5 mg) = $12 per pill (approved for ED and BPH daily use)
Cilalis (10/20mg) = $72 per pill (approved for ED)

If your doc write for Viagra the pharmacy has no choice but to fill brand or generic Viagra.  If you go that route ask the doc to write for slidenafil 20 mg (leave off any brand name).   You can play around with the dose typically 2-3 tablets (40-60mg) is where you end up.  So an Rx for 90 pills should last at least 30 days.  If no insurance coverage go to an independent pharmacy and negotiate a bit.  A reasonable price would be $49 for that.

Cialis is a better choice overall because it has a long 1/2 life in the body so one pill per day provides for an increased blood flow throughout the day.  Viagra only give you about 6-8 hours.  Cialis gets insurance coverage for daily use, but typically its for BPH because that is an approved indication.  Peyronies is not, so your doctor would have to do a bit of justification and it still might not get approved. 

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TonySa

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Re: Xiaflex and restorex
« Reply #4 on: April 11, 2018, 11:27:28 AM »

Great summary, sildenafil 20 mg is the way to go.  You can order online, checkout goodRx, without any problems.  I would add generic cialis, tadalafil, can be ordered cheaply online in US without a prescription, just google tadalafil liquid peptides research.  I use blue sky peptides.
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PxD 2 yrs, failed all tx. 9/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS 18cm + 3rte

WhatNext81

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Re: Xiaflex and restorex
« Reply #5 on: April 11, 2018, 04:22:28 PM »

Great info. Yes, I got sildenafil, 20mg, 100 pills for $48 through goodrx. It is a very helpful tool.
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Concerned_wifw

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Re: Xiaflex and restorex
« Reply #6 on: April 11, 2018, 09:16:32 PM »

Whatnext....
Yes, he was shown how to do the modeling. He has done it daily. He goes tomorrow for his second series. I think we're going to purchase the restorex outright and incorporate it into his treatment.  The website for restorex states that it is FSA approved. He is definitely going to talk to him about the daily cialis, which he was prescribed several years ago too, but not really for this issue....
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WhatNext81

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Re: Xiaflex and restorex
« Reply #7 on: April 11, 2018, 10:02:48 PM »

Sounds like a plan. Good luck to the both of you. If they have any on hand, they can set it up for him in the office and give a few pointers. Ask about that before his injection.
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katy

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Re: Xiaflex and restorex
« Reply #8 on: April 13, 2018, 04:55:43 PM »

Another concerned wife here. Contact me if you like.

- Katy
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Concerned_wifw

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Re: Xiaflex and restorex
« Reply #9 on: April 13, 2018, 06:07:00 PM »

All set up with the Restorex, 2nd series of shots is done, and and RX for sildenafil. Fingers crossed for some improvement.
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pfract

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Re: Xiaflex and restorex
« Reply #10 on: April 13, 2018, 09:05:14 PM »

I am so impressed at this thread... Seeing a partner helping out... Not to mention that this brings down a guys moral so much... Especially if ed is not helping too. Tell him to do daily cialïs for sure. He has 2.5 or 5mg. I use the 5, after fracturing my penis 4 years ago.

If that doesn't help with his erections, he can try injections next, which I am sure he won't be fearing after this treatment. Also, with proper dosage he can have a 1/2 hour erection, so you guys can enjoy sex no problem.

You also have the vacuum pump, if he wants to try it out...
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Penile fracture during sex, Portugal, August 2014 (no surgical repair, left with moderate ed) / ultrasound, full assessment with Dr Irwin Goldstein, San Diego, California March 2016 / Saving for implant; Dr Kramer, Dr Eid? 2020?

Concerned_wifw

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Re: Xiaflex and restorex
« Reply #11 on: April 14, 2018, 12:20:12 AM »

Which injections? He is doing the xiaflex now.  He did the interferon first. 
He got an RX for cialis first,  but our insurance doesn't cover it.  Today he got the RX for the generic viagra.... much friendlier to the bank account!  Still waiting on that rebate check from the manufacturer! Which would be nice since our current amount due for the first series of shots is about$4600, and we purchased the Restorex yesterday to tune of $495....I was able to  use my FSA to purchase it as well,  I know someone had asked about that recently.
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pfract

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Re: Xiaflex and restorex
« Reply #12 on: April 14, 2018, 03:40:56 AM »

@concerned_wife:

from what i realize, your husband is having problems keeping an erection. This makes me presume that right now, he must be having major issues with penetrative sex. So, if he tries cialis AND/or viagra, and those don't help him getting further erections, there are a full array of other options he can use to be able to get a much better erections.

There are several compounds, urologists use for injections, that they prescribe for men that have ED. Alprostadil, Caverject, Prostaglandin, if i am not mistaken on the names. He then varies the dosage, so he achieves an erection with is satisfactory for intercourse, but doesn't last more than 4 hours. (having an erection for more than 4 hours is a medical emergency. It's called a priapism, and people having it must go to the ER at once).

Also, as a men, let me tell you that this devastes a guy on the inside. I don't know how he treats you, but some guys are able to vent this out, others close on themselves and  ignore their girlfriends, because they feel they can't provide her with good sex no more. Also... a lot of guys don't seek out trreatment for their ED, while there are options that do help.

I can help you out in the ED part, since i fractured my penis and suffer from moderate erectile dysfunction ever since.

Please, keep us posted.
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Penile fracture during sex, Portugal, August 2014 (no surgical repair, left with moderate ed) / ultrasound, full assessment with Dr Irwin Goldstein, San Diego, California March 2016 / Saving for implant; Dr Kramer, Dr Eid? 2020?

WhatNext81

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Re: Xiaflex and restorex
« Reply #13 on: April 14, 2018, 05:58:31 AM »

Rebate from the manufacturer? You used goodrx.com? You can just show your phone to the pharmacist or print it out.

That's awesome FSA covered the device and they got you all set up in the office. I had great results with xiaflex and RestoreX. When I started there wasn't many doing both treatments as RestoreX had just come out. Best of luck!
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Concerned_wifw

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Re: Xiaflex and restorex
« Reply #14 on: April 14, 2018, 05:35:14 PM »

No, the rebate for the Xiaflex....I sent in the EOB to the manufacturer? The gal at Dr Trosts office (Tiffany?) Sent us a form from Endo Advantage to receive up to $1200 copay assistance....
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Concerned_wifw

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Re: Xiaflex and restorex
« Reply #15 on: April 14, 2018, 05:39:51 PM »

Oh, and we have a really good marriage. He denied this having any psychological effects until he consulted with Dr Trost, and then he realized that maybe he did, hes never treated me badly because of this issue. Hes never been a selfish lover....I'll leave it at that :)
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betterbend

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Re: Xiaflex and restorex
« Reply #16 on: April 14, 2018, 10:11:24 PM »

There is a huge price difference between generic Viagra and sildenafil 20 mg.  Make sure your doc wirites for sildenafil 20 mg not generic viagra, or sildenafil 50 mg. 
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pfract

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Re: Xiaflex and restorex
« Reply #17 on: April 15, 2018, 05:28:40 AM »

@concerned_wilfe: glad for you guys. I've read a lot of sad stories, on this and another board, of guys having a limp penis and closing up on themselves completely, even though sex is more than penetration. Again, if down the line you want some help with names of medications for erections, or help with other doctors to go, please don't hesitate in coming back, we are here to help. Also, can you keep us updated on his results with the combination treatment?

Please!
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Penile fracture during sex, Portugal, August 2014 (no surgical repair, left with moderate ed) / ultrasound, full assessment with Dr Irwin Goldstein, San Diego, California March 2016 / Saving for implant; Dr Kramer, Dr Eid? 2020?

Concerned_wifw

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Re: Xiaflex and restorex
« Reply #18 on: April 15, 2018, 11:44:46 PM »

I will update in a few weeks! So far,  this series was rough to start but the swelling is better, quicker this time.
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