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Author Topic: Vaccine?  (Read 1604 times)

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nemo

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Vaccine?
« on: July 27, 2021, 02:36:32 PM »

First, let me say, I am thankful the COVID vaccines are available and they are no doubt saving thousands, perhaps millions of lives.

But I must also admit that I am having a flare of Peyronie's for absolutely no other reason that I can determine, after 4-5 years of absolute stability and no palpable plaques. It just came on out of nowhere, and I have to wonder if my two COVID vaccines, first in May second in July haven't somehow triggered this auto-immune condition.

I'm sure I'll never know, but I will always wonder. I will say, should booster shots become a "thing" -- I will have to seriously reconsider my willingness to go down and get the shot.

Nemo
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50 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred in 2013. Have now begun a third episode in 2021. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline.

Stabler

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Re: Vaccine?
« Reply #1 on: July 27, 2021, 03:18:03 PM »

Good information to have on hand.

Thanks Nemo


Stabler
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Moderator since 2015- Missouri- I work in the medical field and have strong knowledge of insurance and how to obtain coverage for medication and other treatments. Being a woman I do not have Peyronies but you can ask me anything. I am happy to help.

Kobegianna

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Re: Vaccine?
« Reply #2 on: July 27, 2021, 07:10:09 PM »

Nemo. I also got the vaccine and that’s when my denting and hourglassing presented itself. Granted I was having slight pain on erection a month before but I feel like the vaccine made it so my immune system over reacted causing my injury to heal with more scar tissue then necessary.  But who knows. 🤷🏿‍♀️🤷🏿‍♀️
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34 yrs Old, Healthy very active
Possibly injured penis or took too much Cialis
Symptoms starting January-February 2021
First dent seen April 4, 2021, painful erections

porterrobinson

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Re: Vaccine?
« Reply #3 on: July 28, 2021, 02:54:26 AM »

i think thats ridiculous and people seem to slowly get crazy iver this vaccine crap. that is not how the immune system works. also, people are getting vaccines for all kinds of crap all the time.. and various other immuno modulators
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single, mid 20
diagnosed early 2020
indentation 20 degree bent to left, recurrence with new indentation below glans
tried vacuum device with no success

nemo

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Re: Vaccine?
« Reply #4 on: July 28, 2021, 04:13:00 AM »

porterrobinson, I'd be cautious about using words like "ridiculous" and "crazy" here. Most in the auto-immune community are concerned about the effect of a vaccine triggering their auto-immune condition(s). Even the medical authorities have said they just didn't know for certain how the vaccines would impact this community, as they had not yet been studied, specifically, on people with auto-immune conditions.

I also wouldn't presume to know "how the immune system works." Unless you are an immunologist, a specialist in auto-immunity, or possess some related medical expertise, maybe don't be so quick to dismiss the concerns of others.

Nemo
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50 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred in 2013. Have now begun a third episode in 2021. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline.

porterrobinson

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Re: Vaccine?
« Reply #5 on: July 28, 2021, 06:18:23 AM »

my doctor said peyronies cannot reoccur because the immune system learns to not overreqct to the micro traumas like that. he is an expert andrologist. i am basing my assesement on his opinion and not my own. also i could assume that manx anti vaxers are among the just being cautious crowd, there is being concerned and then there is the people thwt think a vaccine has triggered multiple sclerosis or some crap which shies away people from getting the vaccine. but i see your point and apologize for being dismissive if i was
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single, mid 20
diagnosed early 2020
indentation 20 degree bent to left, recurrence with new indentation below glans
tried vacuum device with no success

nemo

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Re: Vaccine?
« Reply #6 on: July 28, 2021, 06:43:55 AM »

I wish your andrologist was right, but I have personally had episodes of Peyronie's 4 different times in my life, with about 5-6 years between each.  Only one followed what might be considered a sex "accident" where there was some sort of minor trauma. The other three have come out of nowhere and for no understandable reason.

I have multiple auto-immune diseases: Peyronie's, Vitiligo, Ulcerative Colitis, Mixed Connective Tissue Disease ... I'm a walking inflammation machine.

So, in my experience, the immune system does not learn not to overreact. My immune system specializes in over-reaction. I'm literally on Imuran, and immune system suppressant, and I'm still going through a Peyronie's flare right now. If only my body could learn not to over-react, my life would be so much better. But for those of us with auto-immune diseases, it most certainly does not.

Nemo
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50 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred in 2013. Have now begun a third episode in 2021. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline.

porterrobinson

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Re: Vaccine?
« Reply #7 on: July 28, 2021, 07:57:06 AM »

peyronies might be more debilitqting than multiple sclerosis thinking about it which can at least be treated properly and effectively at this point whereas research of peyronies is from 1990
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single, mid 20
diagnosed early 2020
indentation 20 degree bent to left, recurrence with new indentation below glans
tried vacuum device with no success

Mikel7

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Re: Vaccine?
« Reply #8 on: July 29, 2021, 05:48:35 AM »

I believe that peyronies for each individual can be different.  Our bodies are the same - 2 eyes, 2 ears etc...  Though our chemistry and genetic makeup  are different. For example you don't know how any drug you take will affect you.  So it is with any disease. Dr's treat a person based on symptoms with drugs and other modalities. Peyronies is a disease of the penis and diseases can affect each person differently and at different time frames in their lives. No one person or Dr has all of the answers to this awful plague on mankind.
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Lump April 2020, age 60 , Dr Levine 6-26-20,
Dorsal Curve 11-1-20 , Peyronies
Vit E400mg, COQ10, ALCAR, Heat Therapy, Penimaster, Pentox, Cialis
had SNHL 7-31-20 - Stopped all Meds because ototoxicity  Heat/traction/VED are working.

Winter

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Re: Vaccine?
« Reply #9 on: July 29, 2021, 10:34:28 PM »

peyronies might be more debilitqting than multiple sclerosis thinking about it which can at least be treated properly and effectively at this point whereas research of peyronies is from 1990

Please, don’t say that. I’ve seen MS completely destroy any degree of dignity of the human body on many people. I know that there are several treatments, but that disease is just overwhelming. You can wake up completely unable to control your legs or you bladder.

But having said that, an ex-girlfriend was somewhat able to halt the progression of her MS by using low dose naltrexone for life. It was miraculous for her. But MS left some marks on her. She is almost completely bald, unfortunately. Crazy and devastating disease. 

Auto-immune conditions are usually weird and unpredictable. I hope we can find a cure for those awful diseases anytime soon.
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40 yo, married. Onset on 07/20. Flare up on 07/21
Deep indentations on ventral and dorsal area while erect. No erectile dysfunction. 20° up congenital. It still hurts; Taking pentox, Cialis, supplements, keto diet, VED and manual traction.
God bless

PeyroniKirai

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Re: Vaccine?
« Reply #10 on: July 30, 2021, 02:44:57 AM »

nemo, can you please share the type of vaccine you had?  Was it Pfizer, Moderna, Johnson & Johnson, AstraZeneca, or did you somehow get Sinovax or Sputnik?
You said you had one in May and one in July - were they the same type?  And how many weeks between?
Also, is it okay to assume that both shots were administered by a doctor or a nurse as part of a recognized vaccine program?

I'm just trying to narrow down your situation so the Forum in general can learn the most from it.

Medical opinion is that any vaccine can cause reactions in people with auto-immune disorders (CDC website), but none of the COVID-19 vaccines has been around long enough for anyone to collect data on Peyronie's.  It's not "ridiculous" or "crazy" to think about this question (full disclosure, I have had two Moderna vaccines and I am not an anti-vaxxer) because we simply don't know.  If COVID-19 stays with humanity for another 10 or 20 years and everyone is taking vaccines and boosters once or twice a year (pharmaceutical manufacturers' dream!) then data will be collected and we may learn if there are special risks for Peyronie's sufferers.  But as of today, unfortunately we just don't know, so it's very important that the medical community hear more about experiences like yours. 

My sympathy, obviously, and thank you for posting.
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Age 63, Peyronie's history 3 years, left side hourglass, 20-degree bend to left, no Erectile Dysfunction

nemo

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Re: Vaccine?
« Reply #11 on: July 30, 2021, 03:39:38 AM »

Yeah, I'm not an anti-vaxxer either!  Just sharing my experience.

I had the AstraZeneca vaccine: first shot March 1, second July 5. Yes, at medical facility by a nurse. Much tiredness after the first shot, for about a day or two, and not many side effects at all after the second.

My Peyronies Disease flare could be entirely coincidental - I'll just never know. But I had been symptom free for a full 4-5 years at that point and thought Peyronies Disease was all behind me. No lesions (other than old soft tissue I can still feel), no calcification, and great erections (with Cialis).

I was noticing some mild Erectile Dysfunction in the days leading up to the second shot, which I think was the beginning of the flare, because my penis was filling with blood slowly, with the right side (where the Peyronies Disease is) filling more slowly. I didn't even think about it being Peyronies Disease as I'd been well for years.  So if the first shot caused it, it took a couple months to manifest. Perhaps the second shot put it over the edge, because about 14 days after second shot is when I felt some mild pain and discovered a lesion and now have some deeper indentations and soreness.

Nemo
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50 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred in 2013. Have now begun a third episode in 2021. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline.

Lostandsad

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Re: Vaccine?
« Reply #12 on: August 12, 2021, 04:26:34 PM »

Nemo, there’s evidence of the covid vaccines causing micro blood clots and other auto immune diseases. Micro blood clots would certainly mess with blood flow and would most certainly cause a flare up with peyronie’s in my opinion. This subject is a messy one cause of the whole division between pro covid and anti covid vaccine people. I can send you some links in PM from some doctors who talk about the micro blood clots.
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MIA - nothing works after 5 months
supplements and pharmaceuticals I've tried:
cialis, pentox, magnesium chloride, dim, turmeric, hyaluronic acid, vitamin k2, paba, l-arginine, l-citrulline. either get surgery (and possible Erectile Dysfunction), get implant, or pray

PeyroniKirai

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Re: Vaccine?
« Reply #13 on: August 17, 2021, 09:55:39 AM »

Just to keep things in perspective, the blood clot issue was specifically with AstraZeneca in Europe and the occurrence was about one in a million.  I'm not a doctor but I've studied COVID-19 pretty broadly and intensively since January 2020 when the news first started breaking.  So take it or leave it, but blood clots from the AZ vaccine were freak occurrences.
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Age 63, Peyronie's history 3 years, left side hourglass, 20-degree bend to left, no Erectile Dysfunction

NeoV

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Re: Vaccine?
« Reply #14 on: August 19, 2021, 03:24:13 AM »

Here's a new case report and study

Peyronie's disease in a patient after COVID-19 infection: A case report
https://pubmed.ncbi.nlm.nih.gov/34397121/

Impact of the SARS-CoV-2 Virus on Male Reproductive Health
https://pubmed.ncbi.nlm.nih.gov/34402155/

"the male reproductive organs have been found to be vulnerable in moderate to severe illness, leading to reports of erectile dysfunction and orchitis. COVID-19 viral particles have been identified in penile and testis tissue, both in live patients who recovered from COVID-19 and post-mortem men who succumbed to the disease."

I would get the vaccine. If you're afraid of blood clotting, take pine bark extract or even nattokinase (consult with your doctor).

Lostandsad

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Re: Vaccine?
« Reply #15 on: August 19, 2021, 03:53:12 AM »

Neo, I respect you for all the work you’ve done for everyone here on the forums and on your channel. But we clearly don’t have enough long term safety data for you to be suggesting people to get these rushed, experimental vaccines(Moderna’s SEC filing even lists it as gene therapy). The vaccines also don’t prevent you from catching the virus, and by extension, transmitting it to someone else. It therefore becomes a personal health decision for everyone.

https://www.sec.gov/Archives/edgar/data/1682852/000168285220000017/mrna-20200630.htm
Page 70
“Currently, mRNA is considered a gene therapy product by the FDA.”

And PeyroniKirai, the blood clotting issue happens with ALL covid vaccines, not just the AZ one. It wasn’t one in a million either. You can look through all the VAERs data and see the numbers are much higher.

https://openvaers.com/covid-data

We already have more deaths from covid vaccines this year, compared to ALL vaccines in the last three decades, this is a fact.
I’m not an anti-vaxxer either, I have all my immunizations. But there is a ton of censorship going around with anything negative about these vaccines. The government should not get to decide what information we should get exposed to. We should get to see both sides of everything and decide that for ourselves. I don’t really want to get into this, just putting some data and facts out there.

Nemo, Kobegianna, I believe there is a clear link between the vaccine and your recent flare ups.
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MIA - nothing works after 5 months
supplements and pharmaceuticals I've tried:
cialis, pentox, magnesium chloride, dim, turmeric, hyaluronic acid, vitamin k2, paba, l-arginine, l-citrulline. either get surgery (and possible Erectile Dysfunction), get implant, or pray

nemo

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Re: Vaccine?
« Reply #16 on: August 19, 2021, 04:51:41 AM »

I would not be surprised if, as in Neo's first study posted, actual COVID infection triggered Peyronies Disease, given the "cytokine storm" it triggers.

But solely based on my experience, and the fact that I was symptom free for the 5-6 years before I got the shots, I can't help but be suspicious that the vaccine triggered my flare. I could be wrong. I could be right. We'll just never know.

But it could be a "damned if you do; damned if you don't" scenario. However, for me, I will not be lining up for a booster vaccine, or annual vaccine if it comes to that. I can't knowingly sit down and let someone inject me again if there's a credible chance it will exacerbate my Peyronies Disease, especially since it is highly questionable if the vaccine is protecting people like me (immune suppressed) anyway.

It's a grim prospect, but I would be less stressed taking my chances and masking up, social distancing, etc., than I would taking another shot.

nemo
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50 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred in 2013. Have now begun a third episode in 2021. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline.

Lostandsad

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Re: Vaccine?
« Reply #17 on: August 19, 2021, 04:58:30 AM »

If Robert W. Malone, inventor of mRNA vaccines, is actively speaking out about the dangers of it, then there is clearly a problem(viral vector adenovirus vaccines such as the AZ work the same way in the end btw)

https://mobile.twitter.com/RWMaloneMD

I’ve done enough research about this to know that you’re 100% right that it triggered your flare up.
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MIA - nothing works after 5 months
supplements and pharmaceuticals I've tried:
cialis, pentox, magnesium chloride, dim, turmeric, hyaluronic acid, vitamin k2, paba, l-arginine, l-citrulline. either get surgery (and possible Erectile Dysfunction), get implant, or pray

markdubby

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Re: Vaccine?
« Reply #18 on: August 19, 2021, 05:41:12 AM »

It's hard to decouple things that might be influencing this disease. I got both Pfizer doses and got covid a week after the second dose (just 14 days ago). The situation has been deteriorating quite rapidly from when i got my first dose back in May but its hard to say if its from that or not.

i guess if i have numerous other nodules etc forming within the next few months other than those that i had before then it could point to something.
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30, ~20-30 degrees right bend beginning of 02/2021. Small plaque under gland on right side of the shaft
04/21 Plaque right side under glans
07/21 plaque by base
25 deg curvature at base + narrowing
1.8 g Citrulline 2-3 g ALCAR, 6-8h daily with PMP

NeoV

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Re: Vaccine?
« Reply #19 on: August 19, 2021, 05:56:49 AM »

Lostandsad, I absolutely can see the vaccines causing flareups in Peyronie's. You have to pick your poison and I picked mine.

In my case, the vaccine second dose (moderna) absolutely triggered my neuropathy for a while. I woke up with a numb penis, numb face, it was awful. This was all during the first day when I had a fever. A few days later, I had absolutely none of these issues. So I consider myself fine, hopefully. I also think that COVID would have hurt my nerves even worse and potentially long term.

COVID does cause a cytokine storm and it can damage many different organs. The choice is up to you.

Hricco

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Re: Vaccine?
« Reply #20 on: August 19, 2021, 05:03:06 PM »

Hey guys

I had some initial concerns about this too.  But Im happy to say that I went with the Phizer vaccine. that was back in march i believe both shots.  No flare up, no change at all.  I think I have been stable now for the last 18 months, Im pretty confident that that's it for me....

I continue traction, and heat therapy.  but no noticeable change after getting vaxxed
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Winter

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Re: Vaccine?
« Reply #21 on: August 21, 2021, 11:40:10 PM »

Yeah, me too. Fortunately, no flare ups here as well.
But I had a more radical experience.

The same day I received the Pfizer vaccine, I tested positive for covid. My body had to deal with both problems at the same time!

I completely lost my taste and smell for a whole week. Felt very tired and loss of appetite. I also had some mild fevers. No lung or respiratory problems though.
After about 12 days, all symptoms disappeared. Fortunately I had no problems with the little guy.
I have yet to take the second dose, but I'm less scared now. If I knew I had the disease, I wouldn't get the vaccine consecutively, obviously. But, thank God, everything worked out.
But lots of friends reported long term side effects, from both the disease (tougher and longer) and the vaccine (milder and faster).
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40 yo, married. Onset on 07/20. Flare up on 07/21
Deep indentations on ventral and dorsal area while erect. No erectile dysfunction. 20° up congenital. It still hurts; Taking pentox, Cialis, supplements, keto diet, VED and manual traction.
God bless

Combat-lizard

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Re: Vaccine?
« Reply #22 on: August 22, 2021, 04:47:44 AM »

I want to say hell no the vaccine couldn’t cause this.. but I got my vax in December and my dent showed up in March.. so can’t say for sure but it seems unlikely. Who knows, id say the vax is still worth it.
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24M, dent injury on left side base, no scar tissue yet, flaccid pain

taking L-Citrulline 1500mg, ALCAR 1500mg, COQ10 300mg

nemo

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Re: Vaccine?
« Reply #23 on: December 04, 2021, 12:49:41 PM »

Well, five months after I originally started this topic, my nightmare scenario has occurred - the country where I'm living/working as an expat is now going to require the booster/3rd dose of the vaccine for everyone.

My Peyronie's scar has been stable since July, causing an indentation that has not progressed. Very mild soreness after sex, but I feel like I'm working my way, slowly, through the acute phase and am happy to see no changes after the indentation showed up rather quickly in July. And now I face the prospect of a 3rd vaccine shot.

I realize there is simply no way to know if my current fibrosis/scarring is related to the vaccine, and I face an epic gamble. I could walk away and leave the country and leave life-changing money behind, then I could ultimately still have to get a third dose back in the States at some point, or even see my Peyronies Disease get worse on its own - at that point, I would have gambled and lost. On the other hand, I could stay here and take the shot, and see my Peyronies Disease get worse, or be unaffected. Either way is a huge gamble.

Given that I've had fibrosis/nodules/Peyronies Disease three times in my life before this, when no vaccine was involved, I guess you could argue it's even less likely that the vaccine is responsible for this episode I'm dealing with.

I reckon I will wind up taking the 3rd jab, but the mental stress and anxiety over the coming months will be fierce. I plan to be on Pentox for several weeks beforehand, but no idea if this will actually be enough of an anti-fibrotic insurance policy.  Please keep your fingers crossed for me!

Regards,
nemo
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50 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred in 2013. Have now begun a third episode in 2021. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline.

Mikel7

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Re: Vaccine?
« Reply #24 on: December 05, 2021, 07:14:06 AM »

I think you'll be fine. I know I was kind of scared getting the vaccine and the one thing I was concerned about was my tinnitus getting worse. There are so many physical things related to covid and no one really knows how their body will react. I can tell you this I have lost close friends in their 40's and 50's tot his awful plague of disease.  Who really knows what the outcome of all of this will be?
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Lump April 2020, age 60 , Dr Levine 6-26-20,
Dorsal Curve 11-1-20 , Peyronies
Vit E400mg, COQ10, ALCAR, Heat Therapy, Penimaster, Pentox, Cialis
had SNHL 7-31-20 - Stopped all Meds because ototoxicity  Heat/traction/VED are working.

PeyroniKirai

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Re: Vaccine?
« Reply #25 on: December 05, 2021, 09:08:32 PM »

Very happy to cross my fingers for you nemo.
  But mainly, I hope that you will soon be able to accept that mRNA vaccines will have absolutely no effect on yours or my Peyronie's.  There is much political hysteria in the USA over these vaccines, but relatively little elsewhere in the world.  Interestingly you will find that the hysteria seems to be concentrated in English-speaking countries, and particularly among specific personality types.  Among Americans, Australians, and New Zealanders, it is the most "frontier" oriented, the ones which consider themselves the most independent thinkers (whether that is really true or not), the most likely to own guns, to be hunters, to believe in various survivalist philosophies... I am not criticizing these points but I am saying that these are the most fervent anti-vaxxers.
  I have lived outside the USA for forty years and I can tell you that there are very few anti-vaxxers in Asia.  Japan for example is now 79% vaccinated - that's the ENTIRE population, not just adults.  China will probably be even higher.  Where there is no political agenda, there is very little misunderstanding about these vaccines.  But where there is a political agenda, people spread the most preposterous stories about vaccines, such as "there are 5G chips in the vaccine that will go to your brain", or "the vaccine will alter your DNA".
  Getting back to Peyronie's, vaccines that specifically train the immune system to recognize specific spike proteins on specific viruses just aren't going to go into your penis and make your Peyronie's get worse.  That's just not how Peyronie's or the immune system works.  So relax and get your third shot and enjoy life.
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Age 63, Peyronie's history 3 years, left side hourglass, 20-degree bend to left, no Erectile Dysfunction

nemo

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Re: Vaccine?
« Reply #26 on: December 06, 2021, 12:38:19 AM »

This has nothing to do with political hysteria, or my being an American - I'm as pro-vax as anyone. The concern is purely as I suffer multiple auto-immune diseases, of which Peyronies Disease is only one, and many in the auto-immune community are rightly cautious about the potential of a vaccine to trigger an immune response that results in a flare in their condition(s). Just as an example, after the first vaccine dose, a fecal study that measures inflammation in my colon (because I have Ulcerative Colitis) doubled in value - the highest I have ever scored. Related to the vaccine? Who knows. Thankfully that's gone back down. The problem with Peyronies Disease, however, is once damage is done, it's done - scars don't just disappear like inflammation can.

I have never heard an actual medical professional speak with such certainty as you that the vaccine cannot cause a flare of an auto-immune condition, because they have not studied the impact on the auto-immune population during drug development. About the most they will say is that it's worth the risk, if there is any.

So, I hope your certainty is grounded in science, not just in annoyance with anti-vaxers, but I remain very anxious about a third shot. The timing of my Peyronies Disease flare in relation to the shots, after years of no problems whatsoever, is rightly concerning.

nemo
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50 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred in 2013. Have now begun a third episode in 2021. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline.

PeyroniKirai

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Re: Vaccine?
« Reply #27 on: December 15, 2021, 02:35:48 AM »

Nemo,
Fair enough and my apologies for shooting my mouth off before reading your profile.  I didn't realize you suffered various auto-immune diseases.  As you point out, I'm not a doctor, so of course what I wrote is just my opinion.  And you are right that we still don't know enough about how mRNA vaccines will affect all sorts of people with minority medical conditions. 
  I do understand now your anxiety about a third shot and you have my very best wishes.  Sorry again for missing those important details in your profile!
Best,
PK
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Age 63, Peyronie's history 3 years, left side hourglass, 20-degree bend to left, no Erectile Dysfunction

Gerald12345

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Re: Vaccine?
« Reply #28 on: January 08, 2022, 03:31:33 PM »

Interesting thread! Unfortunately, my symptoms started as well one week after my second moderna shot. Never new anything about Peyronie's before  :'(
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Peyronie's onset in 11/2021. Age 37
Two plaques under the glans. Minimal pain, only congenital curvature.
Tadalafil 5 mg per day + arginine and citrulline supplements
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