GENERAL COMMENTS & Questions - that won't fit under any of our other topics

[phil]

Crazymoose5000

From what I read in your posts I would agree with Bob and Barry. I don't think you have a problem except for your own concern, and that's understandable. When you say you can strighten it, that to me confirms that intercourse will be no problem. And yes, the vigina can accommodate a fair amount of bend. In fact most men have some small degree of bend, very few have a penis that, when erect, is perfectly straight.

If you still have concern I suggest that you take a digital photo when erect, and let a good urologist take a look. My belief he will tell you the same thing you are hearing here. One word of caution. I would not let him/her induce an erection by injection. A healthy penis does not need that trauma.

I hope this is of some help.

My Best,

Larry H

Larry,

You mention not getting an erection induced by an injection.  I am scheduled to see a specialist next week and he will induce an erection and do an ultrasound on me.  I've had Peyronies Disease for a little over a year and developed a curvature this past June.  It is about 45 degrees to the left with and upward of 20-30  from about midpoint. I still can have intercourse with my wife although it isn't as easy as it use to be.  I don't have ED.  I've lost some length and girth but it still works.  Is getting the shot to induce erection worth it? Will it cause more damage?  I guess the doc will be able to see the amount and size of my plaques.    

[Larry H]

Phil,

If you have Peyronies Disease an erection is necessary for the test, and in your case seems necessary. It didn't appear that this fellow had Peyronies Disease, and an injection is invasive and I don't think was necessary in that case.

I've had 12 verapamil injection treatments, this was about two years ago, and my condition has gotten worse. I fear that the injections may have caused additional trauma, but I really don't know for sure.

In your case, I would not be overally concerned about one injection for the test.

My Best,

Larry

[Hawk]

I had about 80 such injections (BiMix for erections).  After considering all evidence, both personal and researched, I am certain the injections caused my Peyronies Disease.

Having said that, even with 80 injections, I have light to moderate Peyronies Disease (at this point). I agree with Larry that I would not hesitate to get a single injection.  They use a very fine diabetic needle.  I consider them painless and I could usually self- inject without a blink.  There is no muscle, so the needle goes in like hot butter.

[phil]

Hawk and Larry,

Thanks for the guidance. Like you guys say, it shouldn't be a problem.

[j]

Roadblock, some of your story is familiar to me. I'm in my 50s and have Peyronies Disease along with the related conditions of Dupuytren's and Lederhose. The symptoms began with Dupuytren's around age 40.  But, before any of that started, I had a moderate bend - left at the base, maybe 25 degress, which as I recall appeared aound my late 20s. I paid little attention to it and it was never a problem, just required a little steering at times, and I simply accepted it as one of the normal asymmetries and imperfections that everyone has. I suppose it could have been early onset Peyronies Disease but I doubt it - no pain, no other symptoms, and Peyronies Disease doesn't normally show up until much later in life.  Curves and bends are normal, and I suspect that part of our physiology continues to change in some ways well past adolescence. No doubt it also gets traumatized and just plain sore once in a while after active use .

With all the information that's now available on the net, I get the feeling that any younger guy who notices a bend or curve may quickly jump to the conclusion that he has progressive, early-onset Peyronies Disease.  Even urologists may be making that assumption. But they never actaully attempt a lab analysis of the tissue,  looking for those tangled, abnormal collagen deposits and related cellular changes. So I suspect Peyronies Disease is on its way to becoming an overdiagnosed condition, like ADHD in children.

My point to you is, you may not even have Peyronies Disease - and a 25 degree bend, in itself, is not a big deal as long as the plumbing still works.

[TJR]

I guess I'm the latest victum of this strange thing called Peyronies Disease.  In the past two weeks or so, this strange artery like thing showed up just below the head of my penis, starting on the left side and around to the top.  it's about 3/4 " or so long, more evident during an erection.  it does not hurt, except for one small sore/sensitive spot at the very end of this thing.
I went to the doc, and said it's Peyronies Disease, and the artery like thing is plaque.  "WHAT"?.... Plaque i thought was on your teeth... How the hell does it get down there?? and WHY??...( unknown evidently )  There is no bend (yet) like most on this forum, but maybe too early in it's stages???
I'm 38, married, & white, have always had a very sexual lifestyle.. This is scaring the crap out of me, and worried it will get worst.  If it does, and nothing can be done... anyone have an extra bullet?  
Guess I need some input here and advise....
thanks in advance, and also for this forum!

[Old Man]

TJR:
Hold on to your shorts my friend! Getting Peyronies Disease is not the end of the world. Believe me when I say that because I first developed Peyronies Disease at the ripe old age of 24, now 76 plus and still going strong in the sex department. Even after prostate surgery in 1995 I can still perform in the bedroom.

There are many and varied treatments that have been tried. Some work, some don't, but one just has to keep trying things to see if it does. Read all the threads on this forum that you can on the various subject matters dealing with Peyronies Disease, treatments and other items related to it.

You will find that you are now in a club that is constantly looking for some relief from this horrible mess. Some recover spontaneously and others do not, but do not despair. You can find something that helps if you seek long enough. We all know that there is no "cure" available so far, but some have found an answer for their individual cases and it possible for you too.

Hope that you can find some relief, and if there is anything the guys on this forum can do to help, just let us know.

Sincerely, Old Man

[roadblock]

I just wanted to agree with bentley that the members of this forum sharing the burden of Peyronies Disease through discussion is great. For me, this forum has certainly made dealing with everything easier, and has lead to the discovery of new treatment options.

I want to encourage everyone, especially the new members (of which I am one) to continue to post and get involved with the discussion. Post a profile. Send a personal message. You'll feel better!

Have a wonderful New Years!

[soxfan]

Hi All,

I have read that tamoxifen citrate (nolvadex) is a standard treatment for Peyronies Disease and this got me thinking. I know that steroid users employ nolvadex during and after steroid cycles to combat "gyno" and to restore natural testosterone production and block estrogen. As such, is it possible that Peyronies Disease could be caused by a problem with dht/testosterone/estrogen levels or the ratio of these hormones in the body?

[soxfan]

Hi All,

I am still investigating the role of androgens or lack of them in Peyronies Disease and I came across a very interesting article. It is rather long so I will only post the conclusion and a link.

 
ISI Impact Factor (2003): 1.064

     
 Editor-in-Chief
Shao-Zhen Qian,PhD,Pharmacology
   
-------------------------------------------------------------------------------
 
Effect of androgen deprivation on penile ultrastructure

Zhou-Jun SHEN1, Xie-Lai ZHOU1, Ying-Li LU2, Zhao-Dian CHEN1

1Department of Urology, First Affiliated Hospital, 2Department of Endocrinology, Sir Run Run Shaw Hospital, School of Medicine, Zhejiang University , Hangzhou 310003, China

Asian J Androl 2003 Mar; 5: 33-36            


--------------------------------------------------------------------------------

Keywords: corpus Cavernosum; tunica albuginea; androgens; penis; scanning electron microscopy
Abstract
Aim: To investigate the ultrastructural changes of penile corpus cavernosum and tunica albuginea in rats treated with castration or finasteride. Methods: Eighteen male Sprague-Dawley rats of nine weeks old were randomly divided into three groups with 6 rats each. Group A served as the control, Group B was castrated and Group C, treated with finasteride. Four weeks later, rats were anesthetized and blood samples obtained for the determination of serum testosterone (T) and dihydrotestosterone (DHT) levels; penile tissues were taken for scanning electron microscopy. Results: The T, free T and DHT levels in Group B and the DHT level in Group C were significantly lower than those in Group A (P<0.05). The tunica albuginea was significantly thinner in Group B than that in Group A (P<0.05), but there was no significant difference between Group C and Group A (P>0.05). Elastic fibers in the tunica albuginea of Group A were very rich and arranged regularly and undulatedly, but in Group B, most of the elastic fibers were replaced by collagenous fibers. In Group C, the tunica albuginea was mainly composed of thick and irregular-arranged collagenous fibers. In Group A, there were abundant smooth muscle fibers in the trabeculae of corpus cavernosum, but they were much less in Group C and scarce or even disappeared in Group B. In Groups B and C, the diminished/disappeared smooth muscle fibers were replaced by irregularly arranged collagenous fibers. Conclusion: In rats, androgen is essential for maintaining the normal structure of penile tunica albuginea and corpus carvenosum.

1 Introduction

Androgen is vital for the development of external genitalia in male mammals. In adult males, androgen is essential for the expression of normal libido, but seems to be not indispensable to the erectile activity [1]. We indicated that the serum testosterone (T) and free testosterone (FT) levels were significantly lower, the tunica albuginea much thinner and the penile corpus cavernosum contained less smooth muscles and more collagenous fibers in the elderly rats than in the young and middle-aged rats [2, 3]. Zhang et al [4] pointed out that castration induced apoptosis of penile corpus cavernosum in mature rats, which was prevented by T supplementation. This work suggested that the changes in androgen level might affect the morphology of the penile corpus caver-nosum, but the effect of androgen deprivation on the ultrastructure of the erectile tissue was not available so far in the literature. The present study was designed to elucidate this point in rats.

2 Materials and methods

2.1 Animals and treatment

Eighteen male Sprague-Dawley rats, 9 week old with body weight of 345¡À45 g, were purchased from the Experimental Animal Center of this University. They were randomly divided into three groups with six rats each and were maintained in a 12 h light/12 h dark animal room with free access to food and tap water. Group A served as the control, Group B was castrated and Group C, gavaged with finasteride at a dose of 4.5 mg.kg-1.day-1. Four weeks later, rats were killed by intraperitoneal injection of ketamine and phenobarbital sodium and blood samples were obtained for the determination of serum total and free testosterone (T & FT) and dihydrotest-osterone (DHT) levels with radioimmunoassay; penile tissues (tunica albuginea and corpus cavernosum) were taken from similar site for scanning electron microscopy.

2.2 Scanning electron microscopy

The penile tissues were washed with physiological saline, fixed in 2.5 % glutaraldehyde (pH 7.2~7.4) and washed three times in 0.1 mol/L phosphate buffer saline (PBS). The samples were then post-fixed in 1 % osmium tetroxide for 2 h, dehydrated in graded ethanol solutions and dried by the critical point drying method. The dried samples were then mounted on suitable carriers, coated with gold and examined under a scanning electron microscope (Leica-Stereoscan 260,UK).

2.3 Statistical analysis

Data were expressed in mean¡ÀSD and processed with statistical package of SPSS 10.0. Analysis of variance was performed with the t-test. Significance of difference was set at P<0.05.

3 Results

3.1 Androgen level

The serum concentrations of T, FT and DHT are shown in Table 1. The T, FT and DHT levels in Group B and the DHT level in Group C were significantly lower than those in Group A (P<0.05). There were no significant differences in the T and FT levels between Groups A and C (P>0.05).

Table 1. Serum T, FT and DHT levels. bP<0.05, compared with controls.

Group
n
T (nmol/L)
FT (pmol/L)
DHT (pg/mL)

A (control)
6
13.95¡À10.89
43.91¡À25.85
106.2¡À57.3

B (castrated)
6
0.79¡À0.51b
1.83¡À0.15b
48.4¡À8.6b

C (finasteride)
6
11.03¡À5.68
47.33¡À32.45
47.1¡À16.5b


3.2 Ultrastructure of tunica albuginea

The thickness of tunica albuginea was listed in Table 2. It was significantly thinner in Group B than in Group A (P<0.05), but there was no significant difference between Groups C and A (P>0.05). In Group A (Figure 1), the elastic fibers in tunica albuginea were very rich and arranged regularly and undulatedly, while in Group B (Figure 2), the elastic fibers were mostly replaced by collagenous fibers. In Group C (Figure 3), the regularly-arranged elastic fibers were not seen and replaced by thick and irregularly-arranged collagenous fibers.

Table 2. Thickness of tunica albuginea (mean¡ÀSD). bP<0.05, compared with control.

Group
n
Thickness (mm)

A (control)
6
0.16¡À0.03

B (castrated)
6
0.04¡À0.01b

C (finasteride)
6
0.14¡À0.03


Figure 1. Ultrastructures of tunica albuginea, Group A. (¡Á300)

Figure 2. Ultrastructures of tunica albuginea, Group B. (¡Á300)

Figure 3. Ultrastructures of tunica albuginea, Group C. (¡Á300)

3.3 Ultrastructure of corpus cavernosum

In Group A (Figure 4a & b), the smooth muscle fibers in the trabeculae were rich and contained a few elastic and collagenous fibers. Structure of the sinusoids was perfect and clear.

Figure 4a & b. Ultrastructures of corpus cavernosum, Group A. (a¡Á300, b¡Á900)

In Group B (Figure 5a & b), the corpus cavernosum was mainly composed of a large amount of collagenous fibers, which were thick and irregularly arranged. Smooth muscle fibers in the trabeculae were diminished or completely disappeared. The sinusoids were markedly depressed and narrowed.

Figure 5a & b. Ultrastructures of corpus cavernosum, Group B. (a¡Á300, b¡Á900)

In Group C (Figure 6a & b), the corpus cavernosum also contained a considerable amount of thick and irregularly-arranged collagenous fibers, but the degree of fibrosis was not so marked as in Group B and the types of fibrosis were different between these two groups. The sinusoids of Group C were partially depressed, but the structure of the sinusoids was still retained.

Figure 6a & b. Ultrastructures of corpus cavernosum, Group C. (a¡Á300, b¡Á900)

4 Discussion

The present study showed that in the castration animals, there were a high degree of fibrosis in the corpus cavernosum with irregularly arranged collagenous fibers and a marked decrease in smooth muscle fibers, while in the DHT-inhibited group, the corpus cavernosum contained quite an amount of thick and irregular-arranged collagenous fibers, but the degree of fibrosis was lower than that in the castration group. Results suggest that androgen is essential for the maintenance of normal ultrastructure of corpus cavernosum. Zhang et al [4] demonstrated that in mature rats, castration induced apoptosis in corpus cavernosum with the replacement of the apoptotic tissues by fibrous tissue. This may be one of the pathways through which androgen deprivation acts on corpus cavernosum. In the present study, the degree and type of corpus cavernosum fibrosis in the two groups were different, suggesting that T and DHT act on the corporal cavernosal tissues independently and differently. Finasteride can only inhibit the action of DHT, but not T on the corporal cavernosal tissue, therefore, the degree of fibrosis was less in the DHT-inhibited group than in the castration group.

The tunica albuginea of penis plays a major role in the erection mechanism. It compresses the subalbugineal venules, thus decreasing the venous outflow during erection and provides an inextensible fibrous frame for the erectile tissue of the penis [5]. In the normal control group of this study, the elastic fibers in the tunica albuginea were very rich and arranged regularly and undulatedly. In the castration group, the thickness of tunica albuginea decreased significantly and the elastic fibers were mostly replaced by collagenous fibers and in the DHT-inhibited group, the elastic fibers were replaced by disorganized and thick collagenous fibers. These results indicate that androgen is also essential for the maintenance of the normal structures of tunica albuginea.

It can be concluded that androgen is indispensable to the maintenance of normal ultrastructures of the erectile tissues. However, the interrelationship between androgen and the structure and function of the erectile tissue is not quite clear and sometimes even controversial, and further investigation is needed

http://www.asiaandro.com/1008-682X/5/33.htm

[Hawk]

I was a bit lost on your post due to my hurry and the table structure in the middle.  I did follow the link however and found it ver interesting.  Thanks for the post.

PS: Just a reminder to change the "Subject" lines in your posts to something that describes your post.  It helps to find things.

Also, welcome to our guest Peter

[peter]

if the elastic fibers can be replaced with collegen can collegen be removed and go back to elastic fibers when hormones are back to normal?

[soxfan]

if the elastic fibers can be replaced with collegen can collegen be removed and go back to elastic fibers when hormones are back to normal?

Peter,

The article seems to suggest that lack of dht can cause damage to the penile tissues(Peyronies Disease?) even without any traumatic event. It seems logical that the addition of exogenous dht via oral or transdermal means could prove effective in reversing the symptoms of Peyronies Disease and restoring healthy tissues.

I plan to consult with me doc about this article and if nothing else works then I will concoct a transdermal dht formula using dmso as a carrier and give it a shot. A word of caution though; dht in large doses can cause extreme increase in libido, agressiveness, hairloss and in some cases and enlarged prostate!

Cheers.

[soxfan]

Hi Guys,

I have had a heap of free time lately and have been doing much research and came acroos the following:

It has been shown that fibroblasts from morphoeic lesions and also fibromatoses (such as the Dupuytren's and Peyronie's diseases), like keloidal fibroblasts, secrete increased amounts of collagen due to the largely unknown causes.

It is also demonstrated that interferon-gamma (IFN-[gamma]), interferonalpha (IFN-[alpha]), and tumor necrosis factor-alpha (TNF-[alpha]) decrease collagen synthesis by fibroblasts.

Imiquimod, a novel topical immunomodulator, is a potent inducer of IFN-[gamma], IFN-[alpha], and TNF-[alpha] and has recently been employed in the treatment of keloids.

Given that an autoimmune etiology has been proposed for morphea and that imiquimod has immunomodulatory and fibroblast-inhibitory effects, it could be reasoned that this agent may be of value in the treatment of morphea. Also, due to its fibroblast-inhibitory effect, imiquimod could be of help in the treatment of fibromatoses.

The cause of morphea is largely unknown. Research has shown that skin collagen is increased in morphoeic plaques (1), possibly due to clonal overactivity of fibroblasts (2). Fibroblasts from patients with morpheic lesions exhibited elevated type I and type III procollagen mRNA levels to account for the increased procollagen synthesis, when compared to the unaffected controls (3). The occurrence of localized morphea-like lesions in chronic graft-versus-host disease and an associattion of morphea with idiopathic thrombocytopenic purpura have led to the propasal of autoimmune etiology for this disorder. Moreover, several immunomodulators, such as calcipotriol, griseofulvin, UVA1, and PUVA have been used to treat morphea (4).

Fibromatosis is a benign fibrous tissue proliferation. Superficial fibromatoses (fascial fibromatoses) are subdivided into four types, namely, palmar (Dupuytren's), plantar, penile (Peyronie's) and knuckle pads (5). Like keloid and morphea, fibromatoses are also characterized by increased collagen synthesis (5).

Continue article
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Effect of Cytokines on Fibroblasts

Interferon-gamma (IFN-[gamma]) (3,6), interferon-alpha (IFN-[alpha]) (3,7), and tumor necrosis factor-alpha (TNF-[alpha]) ( decrease collagen synthesis by fibroblasts. The suppressive effect of interferon-alpha on procollagen mRNA levels is somewhat weaker than that of interferon-gamma (3). By contrast, transforming growth factor-beta (TGF-[beta]), platelet-derived growth factor (PDGF), and interleukin-1 (IL-1) increase collagen synthesis by fibroblasts (9,10).

Cytokine Induction by the Immunomuduator Imiquimod and the Proposal

Imiquimod, a novel topical immunomuduator, is widely used clinically for the treatment of cutaneous genital warts caused by human papillomavirus infection (11). Additionally, it has also been used in the treatment of various dermatologic disorders. It is a potent antiviral and antitumor agent in animal model as well (12). Imiquimod is a potent inducer of fibroblast-inhibiting cytokines IFN-[alpha], IFN-[gamma], and TNF-[alpha](12,13) and has recently been employed to decrease the recurrence rate of excised keloids (14). Given its immunomodulatory and fibroblast-inhibitory effects, it could be reasoned that imiquimod may be of value in the treatment of morphea. Also, due to its fibroblast-inhibitory effect, this agent could be of help in the treatment of fibromatoses.

References

http://www.findarticles.com/p/articles/mi_m0PDG/is_4_3/ai_n12417025

[j]

Interesting - I did a quick web search on imiquimod. It's a topical medication that seems to inhibit fibroblast activity and prevent scarring. Not clear whether it could do anyhing once the process has gone to its conclusion, when the fibroblasts have produced the collagen deposts that cause the problem, but obviously the author of that article thinks it's possible.

Also interesting is that the article contains the clearest statement I've seen about the linkage of Peyronie's and Dupuytren's: "Superficial fibromatoses (fascial fibromatoses) are subdivided into four types, namely, palmar (Dupuytren's), plantar, penile (Peyronie's) and knuckle pads." Lucky guy that I am, I have all 4.  

I'd sure like to get ahold of some imiquimod and try some on my hands, where any adverse skin reactions would be quickly obvious and not too troubling. But  it's prescription stuff.

[peter]

if its collogen that is a problem will it be bad to take collegen pills.isaw it posted on another board to take coxfree . but this contains collogen.

[flexor]

There is a worrying aspect of Soxfan's report of 11 January, which suggests that lack of DHT can lead to the formation of collagenous fibres in the tunica.

One of the the main causes of an enlarged prostate (Benign Prostatic Hyperplasia)) is believed to be due to an excess of DHT in the prostate. The first line of defence is to prescribe Proscar (finisteride), a reductase inhibitor, which prevents the breakdown of testosterone to DHT, and so eliminates the DHT.

Since BPH is more common than Peyronies Disease, there must be millions and millions of men (especially older men) with BPH who are taking finisteride to reduce their DHT.

Similarly, many men take Rogaine (finisteride) to alleviate baldness.

[peter]

can collogen be removed if dht is back to normal?

[soxfan]

can collogen be removed if dht is back to normal?

Peter,

The only way to know for sure will be to try. I am soon to be 39 years old, with a full and of hair; I am except for Peyronies Disease in great shape and my prostate is fine. I am currently using the ved, natto, Thacker's formula, alcar ect., and if nothing else works then I will try dht transdermally and with dmso aply it right to the scar tissue.

I am going to do everything short of surgery to try and cure this affliction. I feel that the amount of dht needed to help repair Peyronies Disease is probably low enough so that it won't cause other problems such as hair loss and prostate trouble.

I will continue to do my research and if the members here are interested then I will keep everyone updated. I have also learned that the lack of libido caused by some anti-depressants is also related to compromised dht levels. I would suggest that everyone with Peyronies Disease get their dht levels tested and even if your levels are in the low-normal range than that would help to confirm the link.

I am getting more hopeful about finding a cure for this condition so I would encourage all to not give up hope!

Cheers.

[peter]

thanks for the reply. i am going to get my levels checked. i wonder how many people have gotten their hormones checked after Peyronies Disease. it would be interesting to see if there is a conection

[soxfan]

Hi All,

I am becoming convinced that application of transdermal dht will help to repair penile tissue and shock those tissues into a repair/regrowth cycle!

Department of Urology, Yonsei University College of Medicine, Seoul, Korea.

To investigate the efficacy of transdermal dihydrotestosterone therapy on 22 patients with microphallus, we applied dihydrotestosterone gel for 8 weeks to the external genitalia at daily doses of 12.5 mg. and 25 mg. for ages less than and older than 10 years, respectively. All patients were evaluated for penile and prostatic growth, pituitary-gonadal axis function, serum sex hormone binding globulin, lipid metabolism, hepatotoxicity, bone age and height velocity. All patients demonstrated growth of the penis during treatment. The mean increase rate (153%) in the first 4 weeks of treatment was higher than that (118%) of the second 4 weeks. Of importance is that responses were noted in 4 patients who had failed testosterone therapy for microphallus. The pituitary-gonadal axis was transiently suppressed during treatment, and serum sex hormone binding globulin and lipid metabolism were transiently affected during treatment. Serum alkaline phosphatase increased, mainly due to change of bone isoenzyme but bone ages and mean height velocity were not significantly affected. In conclusion, transdermal dihydrotestosterone therapy is an effective and relatively safe modality in the treatment of microphallus.

PMID: 8326617 [PubMed - indexed for MEDLINE]


http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&list_uids=8326617&dopt=Abstract


Cheers.

[goldblade3]

hi,  i am new to messaging on this forum although i have been reading posts on here for a few months.

im 19 and have an upwards curve of around 80 degrees. im determined it's not peyronies disease since there is no calcified lump, if thats what it's called. It seems like it is getting gradually worse though, and ive had it for as long as i can remember having erections. The one thing i remember from my initial stages of puberty was that i jacked off differently to how most people would. if you can imagine taking a condom off with your thumb on the top of the penis and fingertips on the underside and 'rubbing' up and down like that. i thought that might have something to do with why its curved, since i was probably bending it upwards due to my age.

I think i read somewhere that what i have might be a 'congenital curve' so i guess i'm just trying to figure out whats wrong with it, and if theres anything that can be done to straighten it out. ive tried vitamin E for about a year, but it doesnt work.

Is there anyone else on here with a similar condition? if there is, i have an apointment with a GP soon and will post any useful info i receive on here. Is it a good idea to take pictures to my GP or just tell them about it first? thanks a lot.

[Old Man]

goldblade3:
From the description that you gave in your post, there is a possibility that you do have symptoms on Peyronies Disease. Most GPs have not had enough background in treating Peyronies Disease to fully understand the characteristics of it. Since your curve had been with you for quite some time now and you are only 19, you must get professional help as soon as possible. Don't delay. When you visit the GP ask him to refer you to a good urologist who is well experienced in Peyronies Disease.

You owe to yourself to get the best help possible since you have your whole life ahead of you. I know, because my Peyronies Disease developed at the early age of 24. Treatment for mine was much varied since in the 1950s few doctors even knew what Peyronies Disease was much less how to treat.

Bottom line, get professional help as soon as possible. The guys of this forum have all been through this crazy mess, tried varied treatments, but so far there seems to be no definitive treatment. Each case of Peyronies Disease is totally different from any other. If we can help in any way, feel free to call upon us at any time.

Sincerely, Old Man

[cajunot]

Hi, I was wondering if anyone's physician has tried interferon treatment with them.....my urologist plans to start me on it in the next few weeks.  

Thanks,
cajunot

[SteveW]

cajunot,
If you wouldn't mind, please define or explain for some of us (or for myself) exactly how interferon will be administered in your treatment of Peyronie's and what your Dr explained/recommended/described as far as the treatment process and the expected results.  I for one am unfamiliar with this treatment as it relates to Peyronies Disease.  Your input and information would be appreciated.  

[cajunot]

Hey,

I will have to admit ignorance here, I was hoping someone could give me some info.

I do know that it will be injected in the manner verapimil is injected.  My new doctor is the head of Tulane Hospital's Urology clinic.  He was origionally seeing me for low sperm count (my wife and I are trying to have a baby).  I noticed on his card that he specializes in the treatment of peyronies.

He examined me and felt that more improvement could be had with interferon injections.

Usually I look more into this....no real good reason why I haven't (except been running with work).  My curve is not bad, but the last inch of my penis does not harden much when erect.  This causes occasions of pain for my spouse during intercourse.

I guess I will try the next step ..... doing a google search:)

[Hawk]

Cajunot,

I will respond just so you know we welcome you and are not ignoring your question.  I know from the tons of information i have processed that interferon is or has been used as a Peyronies Disease treatment.  The problem is that in my time on the forums I have never known a patient to recieve that treatment or a doctor to recommend it.  Hopefully others know interferon's place in the treatment arena.  Since i am familiar with what the best known Peyronies Disease doctors prescribe I am leery. Verapamil seems to be the drug of choice for injection and its track record is not impressive to me.  I would consider a few less invasive means prior to any type of injections.

hawk

[cajunot]

No problem Hawk.

I did look up some info and (of course) conflicting results were shown for both verapamil and interferon injections.  I saw that subjective results of 76% improvement were noted by verapamil improvements, but looking in urology journals, it seems that when they look at increased blood flow around the leisons (which means decreased plaque) the results were more like 22% improvement.  

You are correct in that verapamil is the most populare form of injections for peyronies.  I went through the injections and had improvement.  I think that is why this doctor wants to attempt interferon injections.  

Here is a short blurp on a reasearch:

Combined intralesional interferon alpha 2B and oral vitamin E in the treatment of Peyronie's disease.

Novak TE, Bryan W, Templeton L, Sikka S, Hellstrom WJ
Urological Residency Program, Walter Reed Medical Center, Washington, DC, USA.

[Medline record in process]


It has been recently reported that intralesional therapy with alpha interferon 2B resulted in significant improvement of both objective and subjective complaints (penile curvature, pain, plaque size, sexual function) associated with Peyronie's disease. Vitamin E, with its antioxidant properties, may play a role in reducing the inflammatory response. This study was designed to determine the safety and effectiveness of a high dose of alpha INF-2B injected weekly into the Peyronie's plaque combined with oral Vitamin E therapy. Twenty-nine patients with Peyronie's disease were evaluated with penile duplex Doppler for degree of penile curvature, deformity, and plaque size both prior to and after treatment. Each patient then received 4.0 x 10(6) units of alpha INF-2B in 10 cc of normal saline after appropriate local anesthesia. Injections were given once per week directly into the Peyronie's plaque for a period of 10 weeks. Patients also received 400 units of Vitamin E by mouth twice a day. Subjective data was obtained via a questionnaire prior to and at the conclusion of the study. Preliminary results demonstrated improvement of penile curvature in 39% of patients, with one patient experiencing complete resolution. Significant decreases in plaque sizes were noted in 11 of these patients, with softening of the plaques noted in all patients completing the study. Seven patients dropped out of the study prior to completing the 10 weeks: three with severe disease proceeded to surgery, two were lost to follow-up, one had exascerbation of his arthritis symptoms, and one quit secondary to flu-like symptoms. Subjective data from questionnaires revealed improvement in sexual function in those men with decreased curvature and plaque size. Weekly intralesional injections with 4.0 x 10(6) units improved plaque consistency and decreased curvature and plaque size (P < 0.5). Overall subjective sexual performance was reportedly improved. Increased dosage of alpha INF-2B resulted in increased severity of flu-like symptoms when compared to the lower (1 x 10(6) units) biweekly dosage. No significant difference was noted with the addition of oral Vitamin E therapy.

I am leaning toward trying the injections.  My previous urologist wanted to try verapamil injections again, but the previous treatments didn't seem to have any effect on the distial nodule that is making the last portion of my penis ger errect.  The only reason I am considering interferon is that it would be applied by Dr. Sikka and overseen by Dr Hellsrom (the last two doctors in the above article).

If I pursue this, I'll update everyone.  

[Joshua]

A few reports can be read on the net from some using Aldara topical ointment to reduce/attack dupuytren nodules and some have suggested it might/could also be used on the penis to also reduce peyronies nodules.
We may want to look into this..
_____________________________________________________________

Imiquimod: a potential weapon against Dupuytren contracture.

Namazi H.

Department of Orthopaedic Surgery, Shiraz University of Medical Sciences, Chamran Hospital, Iran. namazih@sums.ac.ir

Dupuytren disease is a proliferative fibroplasia of the subcutaneous palmar tissue, occurring in the form of nodular and cords. Evidence is certainly accumulating for raised levels in Dupuytren's tissue of growth factors known to stimulate fibroblasts, Interleukin-1, basic fibroblast growth factor, transforming growth factor-beta, prostaglandin-F2, prostaglandin-E2, platelet derived growth factor and connective tissue growth factor have been suggested to have a role. Immune modification of profibrotic cytokines would provide a novel means to treat dupuytren contracture. Imiquimod cream 5% (Aldara) is an immune modifier, that downregulates transforming growth factor-beta and fibroblast growth factor-2 (the two most important cytokine in producing fibrosis). Based on previous mentioned evidence we suggest: imquimod as a potential drug for dupuytren contracture treatment.


also review:
http://www.emedicine.com/MED/topic3132.htm

[Joshua]

Anyone have any information on this treatment possibility? research to share etc.. I am interested in it...

[dcaptain]

I know Imiquimod cream has been used in treating keloids, specifically to stop the recurrence of keloids after they are removed surgically.  Just adding that to the discussion.  (Sorry if off topic  )

dcaptain

[Joshua]

Dcaptain,
Thanks for the reply. I am trying to locate more information.
Joshua

[Liam]

I have or have had Peyronies Disease, Dupuytren's Disease, and frozen shoulders (adhesive capsulitis).  The frozen shoulders started about three years ago (right) and one and a half years ago (left).  Three years ago a doctor told me my prostate was a little large but nothing to worry about.  Last year I went to another doctor for an unrelated problem and the doctor said I should have a physical.  This included the dreaded DRE.  He found a "nodule" and found my PSA at 3.5 (I was 47 YO at the time).  Long story short, I was scheduling prostate surgery within a few weeks.  The night before I went to the urologist for the first time. I noticed a small "knot" in my penis.  The doc said it Peyronies Disease but we had more important matters to deal with.  Now. ten months post op, my Peyronies Disease is much worse (thank God and my surgeon the cancer is gone).  To top things off, I saw the Orthopedic doctor who did the shoulders about more shoulder problems and a small "knot" in the palm of my right hand.  
All that for two questions.  Are the any studies about possible relations in these conditions?  Seems to be on the surface.  Also, are there any other related condtions I should be aware of?  I'm getting tired of surprises.

[Hawk]

Liam,

Welcome to the forum and a salute for already becoming an active member.  

You have indeed had a some bad breaks.  You are correct that there is commonality between these diseases and a genetic component as well.  If you go to "Developmental Treatments" https://www.peyroniesforum.net/index.php/topic,36.0.html
you will find several posts with links that discuss the genetic component. It starts with post number # 17

You can also go to forum search and search: DP, Dupuytren, etc  We have several members here that have 2 or 3 of these conditions.

[j]

Or 5 in my case. Dupuytren's, Peyronie's, Lederhose, Frozen Shoulder, Garrod's knuckles.   I was able to correct the frozen shoulder by physical therapy; the knuckle pads are harmless; Lederhose is minor in my case; 2 nasty surgeries for Dupuytren's.  

As a group they're sometimes referred to as the 'superficial fibromatoses' - Google will find information on that term.

A genetic marker for Dupuytren's has been identified, at least in the Northern European population.

http://www.prnewswire.com/cgi-bin/stories.pl?ACCT=104&STORY=/www/story/10-13-2005/0004167642&EDATE=

It seems likely that the other conditions are, or can be, genetically linked as well.

[Tim468]

It seems to me that such a conglomeration of events has to be related to a "signal" to switch on of some sort. Whether this is genetic, or a systemic response to a circulating factor of some sort, or both, is unclear. It seems we cannot invoke some sort of local "trauma" mechanism for such different anatomic lesions all showing up at the same time.

Something changed in those of us who have more than one lesion (I have extremely mild DC) - and that, in turn, suggests that a systemic therapy might be of more value (systemic means a medicine that works everywhere, not a "local" therapy, like VED or verapamil).

The question is - what therapy?

Tim

[j]

Tim468 - what about an 'antifibrotic'?  

The answer, in my opinion, won't come from urologists, but from someone working on DC, or IPF, or Desmoid tumors. There's more research going on in those areas and it's aimed directly at the problem. Any medical discussion of Peyronie's seems to wander off into blood circulation and ED.

But, I don't think we're likely to get a systemic answer in time to do us much good. As with DC, I'm hoping for a mechanical solution - other than surgery. Some way to stretch, elasticize or break up the fibrotic tissue.

[Liam]

J, I've see photos of DC surgery.  Looks like they use a chainsaw.  I'm hoping mine never advances to that point.
The frozen shoulder treatment was not bad.  Forget therapy.  Manipulation under anesthesia (MUA) is the way to go.  They knock you out and rip the adhesions loose like pulling apart Velcro.  No cutting. Had both shoulders done (different times) and could rotate my arm in recovery.
I wish it were so easy for the Peyronies Disease.
Tim, I was looking for something about a systemic approach to the problem.  I am very interested in Pentox.  I plan to ask my Uro about it along with 25 mg Viagra at bedtime.  It will not hurt the ED I am experiencing since the prostatectomy (RRP).
I have done a bit of reading on the subject of ED after RRP.  Nerve sparing techniques are not a guarentee of regaining erectile function.  Some suspect a "blood flow" problem.  Some suspect a "blood flow" problem related with Peyronies Disease.
That said,  I'm ready to do something to start them red juices flowing.
I know its not that simple, but....

[cajunot]

Hey all!

Laim, hang in there.  You sure have a lot of different issures to deal with, and it is only natural to feel that there may be a systemic answer to your difficulties.  I hope this is so, because it makes things a little simpler.  But while there may be a direct connection between Duypetrines and Peyronies, the other conditions may or may not be directly connected.  Kind of like getting a bad case of bronchittis after getting a really bad cold.  The cold virus weaks the immune system and lets bacteria set in to cause bronchitus or pneumonia.  Peyronies may have weakened your fibrous tissue in your shoulder which led to your frozen shoulder.  Just a theory, not necessarily fact.

Also, don't knock out therapy for your frozen shoulder after the releases you undergo.  It can reduce the reaccurance rates...of course, being a therapist, I may be a little biased.

I just wanted to update everyone on my physician's use of interferon on peyronies.  Yesterday I underwent my first of 10 injections.  I forgot how fun they could be (I had the verapimil injections 2 years ago).  Dr. Hellstrom told me that interferon works basically the same way verapimil does, however, interferon is a much stronger anti-inflammitory.  He also feels that it may have a greater effect on the bottlenecking of my penis.  

One thing stood out.  He said my plaque was soft.  The physician who used verapimil on me only commented on the calcified nodules that formed, not the soft plaque.  Well, what I inferred from this is that different physicians can sense the plaque more aqutely and may have better success at treating it, so if your physician isn't getting good results, you might want to try another.

Oh, unlike verapimil, interferron has some not-so-fun side affects.  He warned me I might develope flu-like symptoms....and I sure did...last night I had a weard case of chills and hot flashes.....they didn't last, but I expected just achyness and nausea.....

I'll keep everyone updated as the treatment progresses.....

[Hawk]

Kenm,

I read your history and want to welcome you as a contributing member and thank you for your post.  I am very interested in why you waited so many months to post.  It may give some idea as to why others avoid posting.

Thanks Again

Hawk

[kenm]

Because about six years ago I got myself involved in another discussion group on another off beat medical topic that got pretty consuming so I didnt want to do it again.  Ever heard of BFS or benign fasciculation syndrome.  A lot of people who have BFS are doctors.  BFS is a syndrome in which people fasciculate.  The concern is that when you look up in  basic medical textbook what fasciculation means the first thing you come across is ALS or Lou Gehrigs disease.  Ah the death sentence.  The end of the career.  The end of life as we know it.  One of the worst diseases there is. Well people fasciculate and then they go on chat rooms and discuss.  Massachusetts General Hospital has a great chat room on this topic.  After a while you realize that you dont have ALS but this funny thing BFS--It usually takes a couple of EMG's and a lot of angst before you are convinced.  There was actually a trip to Vegas by the BFSers.  Well that is the story.

[Hawk]

Well Ken, I am willing to bet big bucks that past experiences associated with fasciculation syndrome are not likely to be why other members hesitate to post.  So much for my theory on that .  It was a very clear and interesting explanation however.  I hope you have made some headway with that even if it was only learning to take it in stride.

You seem to have a clear head with lots to contribute so I am glad you spoke up.  It is always great to get to know one of our silent brothers.  I certainly don't want this forum to become an obscession with you.  Maybe I can do an intervention and boot you off if it gets out of hand.  Only kidding

take care and see you around.

[SteveW]

Ken, we'll all keep an eye that you don't become obsessed with us.  Welcome aboard and please, post and share with the rest of us.  We're all in "this" together.

[ComeBacKid]

Hey guys,

I know I saw at least one post of a guy who was doing injections of interferon.  Is that guy seeing any results or sucess?  I'm wondering though what is the difference between interferon and collagenese as I saw this atricle online.

"Interferon: The use of these naturally-occurring antiviral, antiproliferative and anti-tumorigenic glycoproteins to treat Peyronie's disease was born out of experiments demonstrating the antifibrotic effect on skin cells of two different disorders — keloids, overgrowth of collagenous scar tissue and scleroderma, a rare autoimmune disease affecting the body's connective tissue. In addition to inhibiting proliferation of fibroblast cells, interferons, such as alpha-2b, also stimulate collagenase, which breaks down collagen and scar tissue. Several uncontrolled studies have demonstrated intralesional interferon's effectiveness in reducing penile pain, curvature and plaque size while improving some sexual function. A current multi-institutional, placebo-controlled trial will hopefully answer many of the questions about intralesional therapy in the near future."

Does anyone know what "current multi-institutional, placebo-controlled trial"they are talking about?

ComeBackid

[wantitstr8]

As I recall from my research, interferon has been shown to be about as effective as verapimil.  The only problem is that interferon also comes with some significant post injection side effects...that's why most doctors elect to use verapimil.  However, I think someone on the board is currently going through the interferon injections.  I'm sure he can provide more information.

[cajunot]

I received my first interferon injection two weeks ago....I go for my next one tomorrow morning.  Not really looking forward to it.  The injection  procedure is just like verapimil injections (and just as enjoyable).  The side effects are similar to the flu.  The side-effects only last a day or so, so it isn't unbearable if it brings some success.

Not real noticable effects yet.  But I'll keep everyone updated.

[Liam]

Thanks for the post.  I am anxious to know what happens.  The side effects sound bad for a local injection.  I, too, would put up with it for results.

Good luck.

Liam

[ComeBacKid]

Does anyone else here notice that in the flaccid state their plaque or penis is hard, and when achieving an erection the erection is realy hard on the sides, harder than then normal corpus Cavernosum would get?  I've noticed this, it seems like there is a halfpiece of a hose cut out and place on each side of my penis and is hard and non flexible, when flaccid and erect, it feels like the plaque is hard like that and goes all the way around my penis.  I hear a lot of people talking about plaques the size of peas and what not and wondered how many others have this plaque that seems to go all around their penis like a halfpiece of a hose pleaced on each side?

ComeBackid

[ComeBacKid]

Has anyone besides me had trouble getting coverage for their verapamil or other drugs?  I went through MEDCO for my prescriptions and they strung me out for weeks sending me letters denying my claim for reasons that were simply invalid, in fact one of them stated " your plan doesn't cover this medication," after they just payed out for it the previous month!  They are still denying my claims and not paying out, there customer service member representatives have been miserable and just lie to me on the phone.  I've spent the past month trying to get my 3 month supply of topical verapamil covered and they simply won't pay out, its disgusting. Has any of you guys had problems like this of being strung out for weeks and getting your claims denied for dumb reasons?

ComeBackid

[Old Man]

ComeBackid:

I know of quite a few guys whose insurance won't pay a dime on any kind of ED or Peyronies Disease medications. Some companies will pay any and all costs. Why the differences, I don't have a clue, who knows!

My personal government health insurance paid for all my ED and Peyronies Disease drugs until the 31st of December one year and thereafter have included a statement in their coverage plan that these drugs are positively not covered by their plan (government - civil service service plan).

Old Man