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Welcome to Dr. Landon Trost - Directly answering member questions in the "Medical Professionals" section below the Treatment boards. https://www.peyroniesforum.net/index.php/topic,16512.0.html

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Author Topic: Sudden Return Of Pain After 3.5 Years - What To Do?  (Read 5014 times)

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HopeToHeal

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Sudden Return Of Pain After 3.5 Years - What To Do?
« on: October 17, 2012, 10:30:23 PM »

Hi All,

I originally developed Peyronie's in Oct. 2008 after an injury to my penis during sex. I think it was a pretty bad case, and I did nothing to treat it. I was in denial + I have chronic Lyme disease which I am sure contributed to the problem. (very bad chronic inflammation)

My original post from 2009 is here if you want to read it: (long post)
VED's - Vacuum Erection Devices - Peyronies Society Forums [Page 5]

After about 9 months, things stabilized. I have been free of pain (some discomfort during erections), but have lost 1/3 of the length of my penis (measured from the top), and have a strong upward curve and some loss of girth. The plaques had gotten smaller and not so easy to feel. I've had very limited (and gentle) sexual activity over the last 3 years.

Last week I had sexual contact with a new partner and also masturbated several days in a row, which was unusual for me. I also began doing some (I thought) careful manual stretching of my penis. I have done that before without a problem.

Two days ago I noticed my flaccid penis looked smaller and I started getting strange sensations in it. Today, it has progressed to full-blown constant pain in my entire penis, although it is worse in the base on the left side.

I am FREAKING OUT that I have caused major damage again and starting to go down another 9-12 months of hell with who-knows-what kind of worsening to be expected.

Is it too early to freak out? What I really want to know is - Has anyone ever triggered this sort of pain after a period of stability, and ended up with no new plaques? I am terrified that I have made an already bad situation even worse.

I'm wondering what suggestions you have for me. I happened to have a doctor's appointment today, (not a Uro) and I told him what happened and asked for a Pentox Rx, since I had come to the board yesterday and read about it. He was happy to oblige, which was great. I am also starting systemic enzymes and thinking of taking CoQ10. I am already on many supplements for my Lyme Disease, so I don't want to add too much.

Is it a good idea to start these things at this time? I don't feel any new plaque at the moment, but the pain is there. Are there other things I should be doing to try to head off the worst possible outcome?

This is especially upsetting to me because I was considering seeing a Peyronie's specialist about surgical options, since I had been stable for so long.

Thanks!

HopeToHeal
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Hawk

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Re: Sudden Return Of Pain After 3.5 Years - What To Do?
« Reply #1 on: October 17, 2012, 10:39:50 PM »

I think the you are doing the single most important thing with the pentox

I want to add the unhappy news that repeated flare-ups are not uncommon for those suitable to Peyronies Disease

I am sure others will respond with more.  If not I will be back.

We all wish you the best with this new battle.
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Prostatectomy 2004, radiation 2009, currently 70 yrs old
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Hawk - Updated 10/27/18 - Peyronies Society Forums

George999

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Re: Sudden Return Of Pain After 3.5 Years - What To Do?
« Reply #2 on: October 18, 2012, 10:28:58 AM »

Pentox is certainly an appropriate treatment for Peyronie's flare ups, but beware, it might also contribute to a severe flare up in Lyme symptoms since it has immune system suppression ramifications.  CoQ10, however, especially the Ubiquinol form, would help with BOTH Peyronie's and Lyme.  And as far as Lyme Disease goes, I would really recommend that you see a good Functional Medicine doc who specializes in Lyme and can likely get rid of it forever for you.  The treatment is pretty gruesome which is why most conventional docs make no attempt at it, but it is usually successful and well worth the pain.  - George
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Hawk

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Re: Sudden Return Of Pain After 3.5 Years - What To Do?
« Reply #3 on: October 18, 2012, 12:53:18 PM »

George,

I am glad you jumped in.  I let the Lyme disease concern pass right through my mind without a thought and as you mention pentox might be an issue with Lyme disease.
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Hawk - Updated 10/27/18 - Peyronies Society Forums

HopeToHeal

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Re: Sudden Return Of Pain After 3.5 Years - What To Do?
« Reply #4 on: October 27, 2012, 02:53:58 PM »

Hawk and George - Thanks for your replies. Sorry it has taken so long for me to respond. I am having a very hard time dealing with this issue emotionally, and have difficulty facing what is happening to me with the Peyronies.

George - I have researched the immune effects of Pentox pretty thoroughly. (Pubmed articles, discussion with my doctor, discussion with pharmacist, etc.). Pentox does not cause broad immune-suppression like steroids do. The only possible immune side effect is transient leucopenia - A lowering of while blood cell counts that is reversible on discontinuation of the drug in a very small percentage of patients.

The doc who prescribed Pentox to me is my Lyme doctor. He has used it to treat Lyme patients before (I believe for the inflammatory cytokine-reducing effect) and had no concerns with me taking the drug. Also, I am currently getting my blood cell counts checked weekly due to other meds that I am on, so any adverse effect would be noticed. So I am starting the Pentox.

I took my first dose yesterday (a single 400 mg. dose with breakfast). I felt extremely tired for most of the day - so bad that I had to lie down for a few hours. Has anyone else noticed this?

So far, I have not noticed any new plaques forming and I am keeping my fingers crossed that my situation will not get worse.

Any other ideas on what to do to keep things from getting worse? I'm curious about trying a VED, but that seems like a bad idea now as I have active inflammation and pain.(?)
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George999

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Re: Sudden Return Of Pain After 3.5 Years - What To Do?
« Reply #5 on: October 27, 2012, 03:14:07 PM »

Seems like you are on top of everything at this point.  If Pentox works OK with Lyme Disease, its going to be one of your best shots at getting rid of the pain, especially in combination with CoQ10.  Beyond that would be controlling inflammatory factors proactively.  Insulin would be my first target on this level, which means dealing with insulin resistance.  - George
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swolf

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Re: Sudden Return Of Pain After 3.5 Years - What To Do?
« Reply #6 on: October 28, 2012, 12:25:28 AM »

Any other ideas on what to do to keep things from getting worse? I'm curious about trying a VED, but that seems like a bad idea now as I have active inflammation and pain.(?)

I have Lyme disease too, though at what level I'm not sure. I have plenty of energy but I still think the Lyme is there restricting my overall health, especially Peyronie's. The VED may be a good option for you but I would proceed with extreme caution. I tried the VED and have had nothing but devastating results. The only explanation I can think of a continued presence of Lyme causing a reaction. I am getting my amino acid levels tested within the next week because that is one of the few areas of action left for me (and Lyme would definitely screw with amino acids); there is a thread on the boards somewhere that talks about this. I am really confused as to whether I should try the VED one last time (all signs seem to point to no), and now I'm debating another attempt at Pentox (I still have a supply on hand), which I haven't been able to take because it causes terrible anxiety for me.

I'd be very interested in hearing anything you find related to Lyme disease and Peyronie's.
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