keep progressing no matter what i do

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Litani

It has been nearly a year since I saw my curve. First visit was 26 degrees. After a year I am estimating 45. I take pentox and all recommended supplements.  I use the Ved and traction.  I cannot stop the progression.  I do not know what else to do,   I have a single plaque that is calcifying so I cannot get xiaflex. Any advice is appreciated.
Care enough to throw everything you got at this disease but do not care enough to ruin your Life!

NeoV

Litany I'm sorry to hear that, I think it took me nearly two years before symptoms started regressing.
There was at least 1 year, I think more, when things got worse and worse.

Did you get an ultrasound and what did it show?

Litani

Yes. I did get an ultrasound. I have 1mm x 1.2 mm plaque right under the gland.
Care enough to throw everything you got at this disease but do not care enough to ruin your Life!

welshwales

It's impossible to know, but in the past year had you not been treating your Peyronies Disease, you could have developed further plaques rather than the single one you currently have. You also may well have prevented your bend from becoming a 90° angle.

james1947

I will second welshwales
You really don't know how bad was the progression if you was not treating it.

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

Nordicz

Litani,

Are you sure you cannot get a Xiaflex treatment. I had a similar situation one plaque calcified rather large that my doctor offered as a treatment. I had a larger degree of bend over 65 degrees and my doctor would not commit to how much benefit I would get but he thought a 30 degree difference was possible but he could not confidently say those would be my results so I opted for a different choice. Your situation fits the typical patient he treated with very good results. You may want to obtain a second opinion if Xiaflex is a viable option.

Z

melting

Daily Transdermals and Traction/VED solved my Peyronies Disease https://www.peyroniesforum.net/index.php/topic,12587.0.html (DMSO+X)

Litani

Melting

I am 50. I eat healthy. I run 3 miles a day. Other than this devastating disease I am healthy.

Z

My doctor is Martin Gelbard. He was involved in the xiaflex trials. He told me I will not benefit from xiaflex since my plaque is calcified. He said if it progresses more my option is grafting.
Care enough to throw everything you got at this disease but do not care enough to ruin your Life!

Nordicz

Litani,

Interesting My Doctor was also part of the trials. I can see no reason not to trust your doctor. As stated he offered it to me as an option yet due to the severity of my curve he did confidently say he could treat me with a grafting procedure which was the option I chose.

Z

bigfish

I too am still progressing after a year and a half, symptoms were mild at first, started Pentox early in the disease along with other supplements. After about 10 months more pain loss of length and girth and some ED. Had to stop the Pentox due to a drop in platelets now just using the VED.
BF

Litani

I had my 6 months follow up doctors appointment yesterday.  The bend has progressed from 30 to 42 degrees.  He put me on 2400 mg of Pentox a day.

I hope this make a difference.  I have no idea what to try if this does not work.  I have tried all supplements.  I use VED and Traction.  

This is a nightmare!
Care enough to throw everything you got at this disease but do not care enough to ruin your Life!

dplookin

Litani.........That's a lot of Pentox.  Depending on your age, I would be careful  Some people have some terrible side effects with Pentox.  71% of people in my age group end up with Severe Constipation due to Pentox.  I would start slowly with the Pentox.....just due to my experiences and some other people's experiences.

I had to stop Pentox after 1 month.  And, Acetyl-l-Carnitine tears up my stomach.  I started VED a year ago and have had NO Change.  I started using a Traction Device 3 months ago at about 3 1/2 hours a day, and have had No Change.

So, you are not alone.  This is a very depressing situation.  My bend is about 90 degrees which isn't good..........................Just my comments, and Good Luck...dplookin

james1947

Litani

Regarding 2400 mg Pentox per day, it is indeed a big dose, but Dr. Lue and other specialists prescribing this dose.
I remember for sure some members were taking this quantity.
Proposing you make a search for 2400 on the main page, you will find 25 posts.
Read them, you may get an idea what to expect.

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

RoyHobbs

I am with Gelbard also and I have some calcification. It must be how solid it is and where it's located because I started xiaflex with him last week.

Litani

Royhobbs,

We will try the high dose pentox for 3 months.  He also submitted paperwork for Xiaflex.  We will see if my insurance approves it.
Care enough to throw everything you got at this disease but do not care enough to ruin your Life!

skunkworks

Is there any chance you could get your blood tested for inflammation markers?

Such rapid progression even on high dose pentox suggests to me your body may have a high level of inflammation. Diet might play a part, avoiding processed carbs like grains and sugars and focusing on health fats and proteins could help.

This is an emotionally destructive condition, we all have it, let's be nice to each other.

Review of current treatment options by Levine and Sherer]

Litani

It has been 2 days since I stared the high dose. So far so good. Little dizzy at times but not too bad. Hope stays this way.

Skunk works,

I am very health conscious ,  I eat healthy and run 3 miles 5 times a week.
Care enough to throw everything you got at this disease but do not care enough to ruin your Life!

skunkworks

Ideas about healthy diet can be many and varied. When it comes to inflammation for example, most vegetarian diets are a big problem.
This is an emotionally destructive condition, we all have it, let's be nice to each other.

Review of current treatment options by Levine and Sherer]

UrsusMinor

Wow, you have plaque that calcified in less than a year after onset? I didn't realize it moved that fast.

I'm seven months into this process, and I thought I had some time before calcification made me ineligible for Xiaflex. Apparently not?

james1947

Apparently not Ursus, some forum members got good results from Xiaflex with calcified plaques.

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

UrsusMinor

Yes, I've heard of that in several instances.

What I'm surprised about is that someone who has had Peyronie's symptoms for less than a year would have Dr Gelbard--who is one of the most experienced Xiaflex docs--tell him he was too calcified.

I was under the impression that calcification was a slower process than that. But I admit I have no data on how fast it occurs. Can someone enlighten me?

Litani

I saw my bend on June 28 2013. My first visit with Dr galbard was on July 15, 2013. At the time, xiaflex was not approved for peyronies.  He did an X-ray and told me that I have sprinkles of calcification and I would be a good candidate.  I went back for 6 months checkup in January 2014. He did an ultrasound and he told me that it was calcified.  So my calcification happened in 6 months.

My plaque is 12mm x 10mm.  The calcification is 8mm x 4mm. The thickness is .5 mm.  He increase pentox to 2400 mg (to attempt to stop further calcification) and I filled insurance papers for xialfex.  Once the insurance is approved he has to do and ultrasound with induced erection to determine the position of the plaque in relation to the bend.  He said that would determine if he can access with needle.

He wanted to do the ultrasound now.  I wanted to wait to see if my insurance will pay for the shots.  I did not see the point of the ultrasound if I will not get the shots.  As is, I am spending so much money on doctor visits, pentox and supplements.  He said it will take about a month to hear from my insurance company.  I will keep everyone posted.
Care enough to throw everything you got at this disease but do not care enough to ruin your Life!

UrsusMinor

That's alarming. I guess I always assumed that people had 12-18 months from the onset of symptoms before calcification began. Anothery myth bites the dust! (Or was my basic assumption wrong?)

Did you have any symptoms prior to noticing the bend?

I hope your insurance comes through and Gelbard decides you are a suitable candidate. I appreciate your offer to keep us posted, and I will be following your updates.

UrsusMinor

Okay, I guess I'll correct myself before someone else does. In this study by Levine et al, http://www.ncbi.nlm.nih.gov/pubmed/24119147, with respect to Plaque Calcification (PC), they state that:

PC does not appear to be an indication of mature or stable disease, as it was identified by ultrasound in 37% of patients less than 12 months after onset of symptoms.

So I guess you can be in the early, acute phase, and already be calcified.

Well, whaddya know!

james1947

It is not guess Ursus, my plaque was calcified at the one year mark.

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

UrsusMinor

This is all news to me, James. I assumed calcification usually took some time. It does with arteries, etc.

On Dr. Gelbard's forum, I found a question:

Hello, I have peyronnies disease with almost a 90 degree curve. My MD is Dr. Conners from Boston. He believes xialaflex will improve my curve. Should I do the shots ASAP before it spreads or calcifies?

Gelbard answered:

If the plaque is not calcified now, it probably won't become calcified as time passes. Xiaflex offers fairly good results in improving curvature – though with a severe bend like 90 degrees, you should anticipate 3 or 4 treatment cycles.  The key in making a decision should be how much this bend affects your function, not what the plaque might do in the future. MG

The answer rather surprised me. I joined his forum to ask if he could shed light on the causes and progression of calcification. If I get an interesting answer, I'll post here.

I'm not trying to hijack Litani's thread here. (In fact, Gelbard is his doctor--right, Litani?) He's also the Peyronie's expert geographically closest to me.





Jonbinspain

Yes. Like James, my plaque calcified fairly quickly. It seems like I had a very brief, what we were used to calling, the active period. The pain only lasted for a brief period and has never returned.

I guess this disease gets more puzzling all the time. There seem to be so many differing symptoms, possible causes, progressions, etc.  

james1947

As someone that read all the posts on this forum, I have to say that Jonbinspain is 100% right:
QuoteThere seem to be so many differing symptoms, possible causes, progressions, etc.
I will just add that same apply to treatments also. What helps one, may not help others.

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

Old Man

To all members:

Just a reminder about cases of Peyronies Disease as well as ED. As far as I know from many years of research and having Peyronies Disease/ED for many years, each and every case of Peyronies Disease and ED are totally different. Some cases may have similarities to others, but not exactly the same.

Some plaque will calcify quicker than others, so don't expect to see a ''pattern'' of calcification in each and every case of Peyronies Disease. Each case must be accepted for what symptoms it presents and the approach to any therapy for it must also be different.

Old Man
Age 92. Peyronies Disease at age 24, Peyronies Disease after
stage four radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries too.

Litani

Ursusminor,

Yes. Gelbard is my doctor.

James and jonbinspain,

My plaque is right under the tip.  The calcification is so superficial that I can see it after a VED session.  Is that common?  Do you see your calcification?
Care enough to throw everything you got at this disease but do not care enough to ruin your Life!

UrsusMinor

JonbinSpain says he had only a brief period of pain. Is there a correlation between the onset of calcification and the disappearance of pain? Or is there no real relationship?

james1947

Yes, I felt the plaques in flaccid also and they were very hard.
Now they are soft, difficult to feel them, but no improvement in the curve and bend.

James  
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

UrsusMinor

Dr Gelbard replied to my questions about calcification on his forum. I wrote:

I am puzzled by calicification. I initially assumed that it was something that happened progressively, and that the longer the patient had symptoms, the more likely that calcification would occur.

Now a number of things I come across suggest that this isn't the case, and that people who have had the disease only for a while can have calcified plaques, while those who have had it for years can still be uncalcified.

What affects the probability or rate of calcification? Or is that another one of the many mysteries of this condition?

He replied:

Another good question.  Most men with plaque calcification have it fairly early on in the process.

Certainly if someone has had Peyronies Disease for 9 – 12 months or so and has no calcification, it is unlikely to develop.  I believe calcification is more common after severe trauma or penile fracture – but it is a bit mysterious and not always predictable.  

MG

So, apparently time is a factor, but not much of a factor. It also sounds as if calcification is something that tends to happen in the acute phase if it is going to happen.