6 months to wait for urologist appointment. Will CoQ10 and arginine do?

[selftreat]

Ok so its looking like its going to be a long time, if ever I can get my hands on a pentox prescription (cant buy it without presc here).

My condition is not severe or anything, a minor dent causing a hinge effect which seems to come and go or something... depending on erection strength.

Doctor says peyronies is actually really common and in most men it never requires treatment or progresses significantly. He says you only hear of the more serious cases when it does progress?

My left side doesn't get pumped up after erections whereas my right side does, so after a long erection it is very noticeable flaccid but normal flaccid doesn't look out of ordinary.



Anyway, I am taking CoQ10 and arginine. I haven't been taking anything the last month since my stuff ran out and had to order them again.



Is my understanding correct in that these supplements can be effective in halting and improving peyronies?

Is pentox the only drug/supplement that has been shown to be able to decrease calcification over time?

[drelist]

Honestly, all of the supplements and even FDA approved products, such as Xiaflex, have varying results depending from patient to patient. Therefore, with Peyronie's disease, it is impossible to say if there is a definitive sure fire medication which will work universally with all patients. Unfortunately, there is still a lot of ambiguity in the treatment of Peyronie's disease as the underlying cause and each individual patient varies. As such, some patients show improvement with Pentox and some do not.

[selftreat]

Thanks for answering.

Sure all we can do is go by the studies that we do have. And they show that arginine/pentox can often prevent fibrosis and maybe soften plaques, but only the pentox studies showed that the calcified parts were affected which is why i' m kind of wondering, would pentox be much better than coq10 and arginine or about the same amount of help?

[james1947]

selftreat

After 18 months on Pentox and low dose Cialis and more than 3 years of VED my calcified plaques are not calcified.
It was very easy and not painful to penetrate them with the needle while I got the PRP injections.
Yes, it is true as drelist wrote, if some treatment works for one, not sure it will work for others. This is Peyronies.
From the other side, the combination of Pentox, low dose Cialis and VED worked for many on the forum.
Also the forum experience with Xiaflex is very positive, much better than the Xiaflex trials. In my opinion, many doctors learning curve in the subject reached a high level, this is the reason of the better results.

James

[NeoV]

I think the concept of "calcification" has been challenged recently, as mentioned by Ursus. Instead focus on anything that can shrink plaques or decrease curvature. CoQ10 and ALCAR are worth taking given our circumstances and the bleak scarcity of research, though the CoQ10 study is very good mind you. Cialis may be worth it for you too. There are different models by which to treat Peyronie's, one would be to attack inflammation, another to improve endothelial health.

Your doctor is probably right, as I tend to think a degree of scarring is normal on a mans penis, and an old study showed that 1/4th of all dead bodies exhibited it.

[Scotchmagic]

Quote deleted by moderator - James
Please read the forum rules regarding posting and quotes.

Regarding the reduction of calcified parts when taking pentox. Perhaps this has something to do with its effect on the immune-system? I read someone having theories that peyronies has a auto-immune part, and a downregulation of this "not optimally-functioning" mechanism might cause the body to be able to decalcify as opposed to in calficy due to a wild immune system not doing its job.. I dont know but it is a just a wild guess.

[selftreat]

Hi thanks guys. I will keep taking the arginine and coQ10, I would like to have a pentox and cialis prescription for some peace of mind.

I do hope the doctor is right and I hope that my penis will be strong and healthy again when my girlfriend comes back in april because the pain and dent/hinge only began days after she left.

As long as things get better and not slowly worse then all is good. The left side of my penis feels 'brittle' or something, like really prone to injury especially when not fully erect. The right side on the other hand is strong healthy and not easily injured.



So James how long did you have your problem before you began on pentox and ved and are you now fully cured or still not yet as good as before?

[james1947]

selftreat

I am far from cured!!! Still bend, up curve and ED.
My biggest mistake was to start treatment three years after the Peyronies started because I was in denial and didn't find this site.

James

[nycguy]

Hello. I have a very important question and I need help. I was diagnosed with Peyronies disease in July of 2012. I am now 29 months into the illness. From the time of my diagnosis until September of this year, my curve was very minimal and very little plaque. Then in September I rebounded and my condition has worsened since and I am now showing very visible signs of the disease for the first time. Big indentation at the base and 10 degree curve with pain. My real concern is that my doctors wanted me to "wait and see". I have had no treatment with the exception of daily cialis for the past year. My question is this, is it too late to discuss treatment with Pentox since so many months has passed without any treatment what-so-ever? Does Pentox need to be taken right away at the onset of the illness?  

[james1947]

nycguy

In my opinion, never late to start Pentox.
VED, Pentox and low dose Cialis helped me to soften the plaques, gain back some of the lost length and girth.
I started treatment 36 months after the onset of the disease.

James

[PDnotFORme]

James,

Per your note below about use of VED, was that something prescribed by a doctor? Did you find a medical grade device online?

My story is below. Any insight would be great. Thanks!

I am 26, was a college athlete, 6' tall, 175 lbs (very healthy condition otherwise). I first noticed pain and a narrowing (bottleneck) deformity in October 2014 (5.75 in at base vs 6.25 inches girth around the rest). Length has remained the same since onset, and I do not have curvature. It took 5 urologist visits in 3 months to finally find a doctor who was knowledgeable, and was diagnosed with Peyronie's on January 8, 2015. I live in Indiana, and found a knowledgeable doctor in Cincinnati, OH. I have been on Pentox (400mg 3x D), L-Arginine (1000mg 2x D) and daily Cialis (5 mg). In the past 4 weeks, the pain has begun to subside (2/10 when flaccid, 3-4/10 during intercourse) and intercourse has become possible again. Also, the narrowing has not become any worse in the last 4 weeks. As I previously stated, I will continue to post updates as often as possible. I am curious as to hearing about anyone's progress with VED, as I have read in many places on this forum that some girth can be regained with use of a medical grade VED. Thanks!  

[Old Man]

PDnotFORme:

You asked about buying a VED on line in your post below. You should tap into the VED board section of the home page index. There are many topics/threads where posts reveal much about VEDs with protocols for the different models of VEDs.

Also, the forum considers me to be the go guy or guru for information about VEDs and their usage. So, feel free to give your case symptoms on the forum. Or, if you prefer privacy about it, send me a PM (Private Message) with your case symptoms and I will be glad to share any information that I have expertise with, etc.

Old Man

[Baldeagle]

6 Month wait to see a urologist?   I suppose that's what those of us in the US have to look forward to after we get a few more years of ACA being in effect?  Was it that slow in Ireland before the Health Care of 2004?

[selftreat]

That was on the public list, i should be getting in sooner now since i asked to be referred privately.

[james1947]

I know a few countries that have governmental health care.
In all of them waiting time of 6 months to see a specialist is normal.
I don't say that all the countries with governmental health care are like that!!!
I don't know also if our US friends will be in the same situation shortly.

James