So I finally got to see a Urologist who specializes in Peyronies Disease and such. I asked to be put on the cancelation list for appointments, as my appointment was for late July. I got a call back that day and got an appointment the day after, today.
I've been taking Pentox 400x3 for just over 2 weeks, and took 10 mg Cialis 4 times for ED within that time. 2 days ago I noticed my plaques were suddenly very soft. The day before they were hard, like rock hard. They've been hard since they developed in Nov 2017. I was shocked by how suddenly it happened.
I've been taking 300-400 Vit E every other day, along with Vit D, Omega, 1 a day, and Calcium. I started taking verapamil 2 weeks ago for my recurrent heart arrhythmia. And knowing it's used in other forms for Peyronies Disease, and even my Cluster headaches, I have multiple uses for it.
So Uro told me my scar is large, yet said it's good my curve is slight. Told me to take a pic of errection and again before next appointment in 6 months for comparison. Wrote me a 5mg daily Cialis script and told me how the generic at Costco is WAY cheaper. Cost me $85 for a months worth. My regular pharmacy was $70 for 4 20mg pills, and their generics were like a buck or 2 cheaper.
Also got some Verapamil cream 8% for twice a day. He told me to forget about the pharmacies expiry date, and told me unless it crystallizes it's good. Unfortunately it's labeled 'do not refridgerate' On it, and I forgot it in the truck for 5 hours. Thankfully it was pretty mild today, and I remembered when I did.
I asked about traction and he slightly scoffed. My ESL40 is coming tomorrow though. He said most guys can't wear them often enough and can get blisters. I'm thinking he's referring to the more elaborate traction devises as uncomfortable.
Anyways, I'm glad I now have all the tools to use and I have a Dr who knows his Peyronies Disease. Soft plaques were a good sign, finally. Yet it didn't really change my curve. If I had to guess I'd say my curve is 5° and I can easily straighten it, and it will stay straight predominantly.
I forgot to ask him about the change in my flaccid hang I've noticed. My penis hangs flaccid, lie it's been twisted to my left, same direction of bend. I have no real idea why. Maybe the uneven weight has begun to effect things while flaccid.
Nooner else have that happen? It's like it's hanging to my left like usual, but now twists with the top or up side more facing to my left now.
Do you have arrithmia or palpitations? I have palps. Good to hear about your plaques!
Amazing such dramatic progress. Was the verapramil the change during that time period?
I've had arrhythmia for almost 25 years now. I've had 4 ablations, the last one was on my ventricle and seemed to finally 'cure' it. Yet the past few weeks I've had some serious palipitation sessions. Every beat is a PAC or PVC, and one time my blood pressure dropped to 91 over 60. The only thing I was taking at the time this started was Vit E, which I suspected, yet now I'm sure it's not the cause.
My guess is either the Pentox finally started doing its thing and softened the plaques, or the Cialis. Maybe both. The Urologist said Cialis is (likely / probably) more effective than Pentox. He said the oral Verapamil isn't effective, yet one would presume it might have an effect. To me Verapamil in my blood, vs Verapamil on my skin, would make me think the pill would be effective.
I know Verapamil is given to Cluster headache patients at progressively higher doses. Yet they want an EKG after you increase from 120, or if you have issues. I had issues going up to 240, but nothing serious, and they told me to just stick to 120 till the cluster finished. Some people take it everyday as a preventative (proactive).
The point being that probably anyone can take Verapamil, under Dr supervision. I'm not suggesting anyone take it for Peyronies Disease alone, but at the same time perhaps it's effective. Yet I would assume Drs would be very much aware of Verapamil oral regarding Peyronies Disease.
My pain has been off and on and pretty slight. Yet I did have pain while flaccid at times which I thought was odd. Yet no pain at all in the past 3-4 days.
There can be a lot of reasons why topical verapamil, or injected verapamil is more effective than oral. One possible reason is that Verapamil is highly protein bound meaning a lot of it stays in the blood stream and doesn't get into the extra vascular area. Also topical use and injections into the area may reduce the amounts into the rest of the body thereby reducing side effects. As you know it's a fairly potent drug and taking it orally to have a Peyronies effect also causes the other therapeutic effects of verapamil.
I have had arrhythmia and palpitations sine I was 17 or so. My father and grandfather have pacemakers and Peyronie's and neuropathy. This is due to hyperinsulinemia. Stop eating carbs, and your palps will be gone, and your Peyronie's! My opinion of course.
Dang Neo, I wasn't aware you suffer arrhythmia and palpitations, this with neuropathy and peyronie's!
I presume you take meds or do you have regular checkups, do you take beta-blockers?
A rare case study of a 55 Year old male who suffers now with Peyronie's disease and Dupuytren's after using beta blocker timolol.
https://www.ncbi.nlm.nih.gov/pubmed/29423783
Interesting.
Quote from: NeoV on February 15, 2018, 06:23:22 AM
I have had arrhythmia and palpitations sine I was 17 or so. My father and grandfather have pacemakers and Peyronie's and neuropathy. This is due to hyperinsulinemia. Stop eating carbs, and your palps will be gone, and your Peyronie's! My opinion of course.
Wow, fascinating. I was recently put on Metformin and started cutting carbs. I lost 25 pounds in 3 months but my diet has been not great the past month. I was right on the threshold for type 2 and have been prediabetic for quite a while. I thought I knew pretty much everything on a basic level regarding diabetes and metabolic functions. hyperinsulinemia is a new one for me and sounds like I may very well be effected by it.
Regarding the Arrythmia, is your SVT? Had an ablation? After 3 ablations I kept getting arrhythmia and I became the topic of a conference where it was proposed my re-entry was ventricular. Learning I've lived with V-tach for decades was concerning. The ablation for that wasn't much fun and a whole level above an atrial ablation. Yet it's been around 5 years and no arrythmia. Yet I'm not sure if what I've been having recently is considered tachycardia / arrythmia, since it's not fast enough. Nor slow enough for brachycardia, but constant palps is likely a sign something is up.
Possibly it's my pacemaker in the mail, sort to speak. Sometimes I think I'd rather have one and not have as much anxiety about a heart attack or nasty V-tach one day. I'm not sure how the eligibility and such work where you live, but I'd think you should / should of had an EP study done already. Perhaps you have and your condition is easily managed. At my worst I was in the ER once a week or 2 getting electrocardioverted, since nothing else worked. I could probably do it myself by now, and the nurses are usually pretty impressed with my knowledge and calmness. I sometimes refresh the Drs knowledge on the issue, lol.
I have had a lot of palps in the not so distant past. Mostly stress related, but I drastically increased my intake of oral magnesium.
Quote from: Walleye on February 14, 2018, 03:55:51 AM
told me how the generic at Costco is WAY cheaper
I guess there's a generic in Canada but there's no generic in the US, right? I believe the same will run for about 400 dollars a month in the US.
Hey I am really looking into finding a Urologist like that but have had no luck. Who did you see? Also how are you doing now? Is traction working at all, and is the device comfortable? have you seen any improvement since this all began? I am in the exact same boat as when you started and I'm 4 months in and it has been worsening and I don't know what to do.
I seen Dr Lee who is in Calgary AB, Canada
DR. LEE, J.
Urologic Surgeon
Sexual Dysfunction, Infertility, and Men's Health Prostate Cancer
ADDRESS
UNIT 6610, 7007 14 STREET SW
CALGARY, ALBERTA T2V 1P9
CONTACT
Telephone: 403-943-8985
It was going to take around 6 months before I would get to see him, but I called and asked to be put on the cancelation list. As in if someone canceled an appointment, I'd be available to take it on short notice. I lucked out and got to see him the next day.
Sadly there's not much anyone can do, I guess. Verapamil cream and told me to take a pic of errection then and again before next appointment in 6 months.
I had pancreatitis recently and spent a week in the hospital. I stopped taking Cialis and Pentox while there, and when I got home I noticed a bit more of a bend, and possibly a small reduction is size, yet it's hard to know for sure about size.
I'm not sure if the traction thing did anything, and I only wore it maybe 2 weeks, since it's kind of a hassle. I'm considering a VED since I think manipulating an errection would be more effective, technically. And I wouldn't have to wear it all day.
This is great to hear. I've been taking Pentox for almost a year and my curve has still been developing, and I've still had ongoing pain. I get slightly dizzy when I take any PDE 5's (cialis, viagra, etc) so I was not taking that -- but my new urologist really urged me to take Cialis and tolerate the side effect as much as possible. I've been taking 2.5mg at night and I have to say that my pain seems to have noticeably improved since then -- I really can't believe it.
Does anyone else have experience with cialis specifically helping with pain? The other thing he added was l citrulline to my regimen (I was already taking coq10 and acetyl carnitine). So I guess it could also be the l-citrulline that's helping, or both... I'm just glad the pain seems to be improving, either way. I'm honestly kind of stunned that such a low dose seems to be helping, and also upset that my previous uro didn't urge me more to try sticking with the cialis longer. But I guess better late than never.
cialis gives me lower back pain. I suffer from sciatica after a disc problem a few years ago and it seems to agravate it. It's a shame as it seems to help my peyronies.
What is it about cialis that is supposed to help with Peyronies Disease. Is it increased blood flow? I. Which case if you have no difficulty in getting erections already then it won't be beneficial for you ?
Lukewill - there is research which supports Cialis being anti-fibrotic (I think you can find the study here on the boards). I'm sure there are others here who understand it better than I do, but I believe the increased blood flow brings increased oxygenation which can aide in the wound healing process. So, to answer your question, there may be benefits other than just helping to achieve erection. I have no problem achieving erection right now, but since I started taking the Cialis, the pain I was experiencing has slightly lessened. Hope this helps!
Quote from: lmn25 on July 13, 2018, 02:05:36 PM
Lukewill - there is research which supports Cialis being anti-fibrotic (I think you can find the study here on the boards). I'm sure there are others here who understand it better than I do, but I be. Hope this helps!
Thanks for the reply. Are you in the beginning phase or the later phase. I'm curious if I was the only one still having pain years layer ?
No problem, Lukewill. I'm about 11 months in. I had hoped the pain would have subsided by now, but I have found that the addition of 2.5mg daily Cialis at night and L-Citrulline in the morning has helped slightly lessen my erection pain/post sex pain. If you're able to get a prescription, it could be worth a try for you.
Thanks lmn25. I'll give it a shot though am finding medical cannabis to be really helping with the pain too at the moment so may stick with that a while first
Lukewill - glad to hear that you've found something that's helping with your pain!
May want to also try diclofenac sodium gel Rx for pain. Pentox can help for pain as well.
I am seeing nobody post positives on Pentox. I am reluctantly staying on it.
Many here indicate pain relief, others reduction in curve but usually coupled w other treatments.