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Avatar universal

HCV, Tx, and Erectile Dysfunction.

As a follow-up to the thread by Abbas below regarding sexual problems after doing therapy, I wondered how many others out there have experienced erectile problems:

1. During Therapy (but none before)

2. After therapy, as well as during.

3. Before therapy, coinciding with HCV progression,
   and continuing through tx.

4. ED improved during and/or after therapy

5. No problems before tx, and no problems during or after tx.

Please let us know if you have noticed any of the above.  It would be very helpful to determine if there are any trends or similar experiences.

A great weekend to all!!

DoubleDose



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Avatar universal
please correct me if i'm wrong & excuse me if redundant,but didn't both of you take massive doses of trx meds?....maybe we should be v cautious on extra meds & longer trx length?...certainly not the total reason, as everyone has diff reactions to meds & diff sensitivity to trx.....and diff reactions to hepC itself-but this 'barbaric' trx has been called a crapshoot & toxic-not unlike doing business w/ tony saprano......hope all these issues resolve w/ time...ohh in regards to sex,i am only limited by lowered endurance,but still crazy(for it) after all these years & drugs...
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Avatar universal
Jim,

Thanks for the follow up, and I know many of you probably did feel I was being somewhat of an alarmist with my post-tx comments.  Once you actually go through the post tx, and try to live with these strange changes, you begin to experience the realities of this powerful therapy.  I was certainly looking for, and expecting to feel absolutely great!  Maybe unrealistic, but no doctors that I had spoken with or read about had prepared me for the actual fallout from treatment.

I know you also have been experiencing negative after-effects, and feel your system has been altered.  Its not fun to discuss these things, and I know that you, and I, do not really enjoy publicizing negative things about the effects of therapy, but we are really just being honest and matter of fact.

I think that I will probably have to deal with some sort of altered immune state, long term, or probably permanently...and that is just the way it is.  I try to do healthy things, eat well, live well, and exercise, but I still feel a strange sort of consciousness that is different than before.  I am much more reactive to almost everything...stress, allergans, sunlight, lack of sleep, exercise, etc.  I have many odd physical sensations that I did not have pre-tx, but I won't go into lengthy descriptions.

Mt triglycerides, by the way, are now testing in the 280 to 295 range, where they had been half that prior to tx.  My cholestorol is also about double what it was before tx, and my blood pressure is about 15% higher.  There is a long list of other changes, but you have read my descriptions of them already, and you also are experiencing some (or many) of  them yourself.

I agree, they will probably consider this a 'barbaric' treatment in future decades, but I guess it was all we had.  Thank God it worked to stop the virus.  Too bad it worked too well, and did other things as well.  It probably makes sense, after revving up our immune systems for all those months, that they might not just return to baseline.

I would love to see some acknowledgement or understanding of these issues from the medical community, but they continue to claim that everybody feels just fine after a few weeks, or months.  They must be missing all the people on the forums out there that are dealing with major problems after tx.

Anyway, I try not to let it get me down, and I just keep moving forward.  Put a wall in front of me, and I am going to try to go through it, or over it.  Hopefully things will improve.  I am not holding my breath.

Best to you, Jim.

DoubleDose
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Avatar universal
Out of range. Chol 240. Tri's 280 (fasting)

The cholesterol cold be partially accounted for by diet although it never went quite this high given my current diet. The tri's were very suprising as I've been exercising every day and would ordinarily be closer to 150. The skin issues however are more troublesome and seem directly related to an altered immune system. I mean just sit back for a moment and think of all the drugs we put in our system during a year (or more) of combo treatment. IMO there is no free lunch.

-- Jim
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Avatar universal
to use scruff inspirational words:
We must stiffen our resolve and continue to probe for answers!

It has got to be frustrating (this I know) not to have answers anywhere no matter how hard we look. Frustration makes anyone snap. Like I said, my mind is wondering whether things were sped up by tx.
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Avatar universal
Sorry, I really did not mean to jump all over you.  I get quick on the trigger these days when it comes to post-tx sides, etc. because I have experienced so many personally, and I can easily ascertain when they began, and most likely why.

I understand your position on sexual function and aging, etc.  It is odd though, that many of the people complaining of post-tx problems of any nature, are a wide range of ages, and often had no hint of these problems before one event:  tx.

Again, sorry to overreact to your post.  I don't usually jump into sarcasm quite so quickly.  I guess being in a 'down' market can lead to foul moods.  Maybe time will 'lift' my spirits, and other things!  Oh well, thank God for Pfizer.

DD
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Avatar universal
I got to go check my latest bloodwork for triglycerides and cholesterol results, nothing was in the out of range area. when you say they are up, are they in the 'out of range' area or are they higher than before tx, but within range?
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Avatar universal
I used to think you were slightly hypochondriac and/or paranoid when I first starting reading your posts early-on in treatment.

Now that I've been through the process, I can say you are right on in terms of the warnings and speculation you offer in terms of lingering, long-term, and perhaps permanent side effects of Interferon.

There is no doubt in my mind that my immune system has been altered by the treatment drugs. Hopefully, it will one day return to normal but I say "hopefully". BTW my triglicerides are up as well compared to pre-treatment as well as my total Choleterol. Skin problems still persist.

I'm afraid one day in the not too distant future, the same doctors who now push what I consider too many folks to treat will refer to the current combo treatment as "barbaric". It certainly seems that way to me already.

-- Jim
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131817 tn?1209529311
My libido started waning before tx and I started having symptoms, I suspect it was the Hep C. Now I am on tx and I still have no drive and it does make it tough on my husband. I have to reassure him it isn't him.

I certainly hope it comes back, but Rev, I think you are right about tx changing people. Although, I am fairly new at tx, I feel SO different now. I used to have so much energy and do so much, while I hope this doesn't continue, I am not going to hold my breath.
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Avatar universal
whoa! DD, I was specifically speaking about the sexual issues! not the triglycerides, blood pressure, etc. those I have no way of relating to anything at all, age or otherwise.
Re read my post, please, it refers to the 'change' females go through. It encompasses a wide range of time, that includes yrs of perimenopause. Changes that include many of the things I experience after tx, fall within that amount of time. So, how can anyone tell me it is ONLY tx related? NO ONE can say that. Not if the person is a female, in her mid 40's to mid/late 50's.  The post tx sexual issues could have been masked by the other symptoms while on tx and noticed post tx. What I wonder is whether tx speeded things up, that were to happen anyway due to the change. These symptoms are documented in many articles on menopause.
Again, My reference was only to the sexuality issues as it pertains to females, not diabetes or anything else you mentioned.
The changes in arousal, lubrication and sexual release can very well be a post tx issue or a normal issue in females 40 to 50 yrs of age.

In abbas case, he is a young male, so there might be a connection there to tx, who knows? It might be easier to assess this relationship than in someone in his 50's or 60's, but we are still speculating. Sounds like he was using other stuff in his bodybuilding routine that is not there anymore? a contributing factor to present problems? I don't know. If his dr says it was the interferon, then his question has been answered.

see, Scott? I should have left it a male thread!
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Avatar universal
you are most assuredly 'ever the optomist'!  I have to note that the biggest coincidence is that these natural aging related changes all seem to be happening to us right after finishing tx.  Curious timing don't you think?  Increased triglycerides, increased blood pressure readings, erectile function problems, mood disorders, nerve dysfunction and numbness, sun sensitivity, fatigue, brain fog.....etc.  all seem to be happening from normal age related changes....RIGHT after therapy!!!!  For many of us, no matter what our ages!!!!!  What a major coincidence!!!!
WOW!

Ever the optomist!!!

As for me, I am quite certain that the therapy is chiefly responsible for most, if not all of these dramatic changes, and after-effects.  It makes no rational sense to think otherwise.
Simple cause and effect.

DoubleDose
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107513 tn?1232286464
Abbass said:
I wish if 1 day my libido come back in future I should go Russia and **** 10 russian woman in 1 day,instead of these times.


Buddy, if you need any help over there, remember your American friends!!!
Helpful - 0
Avatar universal
There is definitely something happening with the nervous system after tx.  I am not sure if it is emotional or physical but something has changed.  Perhaps it is some element of the "I have to make up for lost time" scenario or "I have to get back to my old self but better" expectation.  There is a kind of performance anxiety at work perhaps.  I know one thing, that year of tx was the most traumatic thing I ever went through in terms of the sheer length of time that I was on it.

During that time I had the daily doses of dread about what was going to happen to me.  But at the same time, I only had that one thing to worry about - getting thorugh tx.  In some ways it was like a little vaction from life. I ate what I wanted, laid around, got horny, worked when I wanted, paid bills when I wanted etc.  When it ended I had to get back to all those responsibilities even though I still didnt feel like it.  

I made comparisons about pre, during and post tx, looking for both better performance as well as worse performance. The good is thrown out as not being good enough.  The bad is magnified and added to the ammunition needed to ignore the good or "normal."  Its like coming back from the war but no one wants to hear about how hard it was and how scary and how meaningless it all seems now.  I know one thing for sure, if I could really forget about tx, really block it out, I would probably be very happy about things now. So maybe it isnt all physical after all?  Then again maybe its the water?
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Avatar universal
and congratulatios on the SVR!!!!!!
being a negative person is GOOD!
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Avatar universal
for those with no problems during tx, why after tx?? it makes no sense. If something is going to malfunction because of drugs, it should happen WHILE on the drugs!\
after the drugs are leaving or left your system, why the dysfunction?  dependancy on the drugs?
of course, one problem with many of us is that we are at the age when things like these are supposed to be changing. I don't see how they can differentiate with such a variety of individuals that hit menopause at such a wide range of time.
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Avatar universal
I suffer from decompensated clitoris cirrhosis since ending tx.
With a little help I was doing fine before tx, functioned marginally ( like once every 3 month ) during tx, and now find my equipment dead as a doornail.
I still have a huge libido, can fantasize about sex for hours on end...but unfortunately nothing can physically arouse me period.
I have given up trying...for now... but I see the GYN in September, and since my 6 month PCR came back neg, I plan on giving my liver the job of metabolizing some oral testosterone, as well as putting some testosterone cream down there. I think females can have their testosterone levels checked as well, and I plan on just doing that.
I have no problem discussing all that with my GYN.
This is another one of those post tx sides I didn't expect.
Like DD I am now pre diabetic, and also can't bring my triglycerides down.

DD, my fasting glucose is between 102-104, before and during tx between 80-85.
My triglycerides are 220, before tx approx 100.
Could you please give me your numbers, are you on a very low carbohydrate diet?

Ina
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Avatar universal
We must stiffen our resolve and continue to probe for answers!
Helpful - 0
Avatar universal
Oddly enough, while on therapy my libido was extremely high, but the sexual capability did not follow suit, hence the pharmaceutical helpers.
Only after tx, probably about a month or so after ending the medications, did the desire become equally muted.

Stranger YET, during the three or four weeks immediately after tx, I had NO dysfunction whatsoever, and went from being interested, but not very capable, to being interested and fully capable beyond belief.  I thought I had found nirvana, and felt tremendous all-round for the first three or four weeks after....no brain fog, lots of motivation, no joint pains, very sexually potent, etc.

Then it all hit with a thud....and has not improved a great deal since.  Even though I am considered SVR, and for almost three years now, I started feeling like the walking wounded a month or so after finishing the tx.  It seems to be an odd pattern that others have experienced as well.  I do not know just what to make of it!!!  This is why I am often concerned about the controversial 'viral persistence' scenarios, or post-tx auto-immunity, etc.  

SOMETHING HAPPENED shortly after ending tx, and it was not a good thing.  I have been wrestling with these side effects more or less, ever since tx completion.

If I could have the three weeks after ending as my day to day, I would be thrilled.  Maybe the interferon changes our nervous systems, or cell structures, in strange ways.  I am more 'pre-diabetic' after tx, and with higher blood pressure, and triglycerides.  I am sure other things have changed as well.  Do things eventually return to normal????  Who knows.  I guess I will find out, though.

In spite of it all, I am happy, doing well, and very glad to have done tx and gotten the SVR, whatever it ends up meaning.

Any other comments on the sexual after-effects????

Thanks for all the replies so far!

DoubleDose
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Avatar universal
OK, I've been lurking, but I have my ten foot pole right here...


penile fibrosis....   would the common name be ;  woody?
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107513 tn?1232286464
Yeah, thats a questionable senario especially if he was smiling and staring into your eyes when he commented? Why would a male Dr make a comment such as that? Oh yeah, they are there to comfort you!! LOL
Quite the ackward situation, thats why my Doc is a female.. I go for regular testicular cancer checks, and as the wife says, maybe more frequent than needed!!!
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86075 tn?1238115091
I ain't touchin this thread with a 7 inch pole...
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Avatar universal
says........that's a mighty fine looking penis" and I told him I really appreciated that as he has probably send hundreds.


Hmmmmm, one could take that two ways, Hope he didn't ask you to bend over
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107513 tn?1232286464
Here is a link refering to the subject...
I guess I lucked out having <strong>never</strong> suffered from this sx!!

<a href="http://www.natap.org/2006/HCV/060706_03.htm">sexual dysfunction</a>
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Avatar universal
Snook: Hmmmmmmm, is there such thing as penis fibrosis?
----------------------------------------------
Haven't you heard of the Metasex scale?

Stage 0 -- Nothing
Stage 1 -- little to none
Stage 3 -- Significant
Stage 4 -- Call the medics
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Avatar universal
Hi DD! Hey Abbas1 you might want to check if yohimbine is liver friendly-it seems I read somewhere it is not. For me tx made desire more likely but erections less reliable. I definitely attribute some erectile dysfunction to tx and possibly hcv. I recommend saw palmetto for prostate health. Also Cialis(generic-tadalifil)-prescription drug can be helpful for ED. It works after actual arousal to maintain erection and does not need to be taken immediately before sex. I'm of the opinion that both hcv and tx impact ED. Also, having hcv is not conducive to finding a new partner.
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