Sudden and Unexpected Greasy Discharges

I've been following this forum board for about 60 days now. The one thing I've noticed in the past few weeks are conversations about sx and them not leaving even after treatment. I remember several years ago a commercial and one of the side affects was "sudden and unexpected greasy discharges" and thinking why would someone take that medication knowing what might happen. In reading my meds information it seems that organs blow up your heart can stop your system can shut down from fighting bugs. Hep C virus is starting to look a little better all the time. I mean crapping ones pants is not nearly as bad as this stuff we are taking and the temp sides and permanent possible sides. 34 weeks left after tonight but jimminy cricket is it worth it? Yes I am having a nutty day. Sorry a nuttier day. I'm going to croak of something and I want it to be healthy old age. Forgive the ramblings. Dale

[NYgirl]

I remember when the doctor wanted to put me on Wellbutrin to help with my quitting smoking attempt and I looked on the side and it said chance of seizure...and I didn't take it. I was like WOW a CHANCE of seizure!  Well never mind that smoking gave me a bigger chance at TERMINAL LUNG CANCER right?

I mean there is a chance with EVERY medication in the world that something can go wrong POTENTIALLY.  But that is just a chance.  With this disease - if I ignore it - there is a DEFINITE chance that my liver will give out on me.

There is just as big a chance that I will get hit by lightning or run over by a truck too.

For ME the certainty of liver damage and liver cancer outweigh any POSSIBLE 1 in 1,000,000 type chance of a problem.

I mean there is ZERO chance that I am going to get rid of this without the medications I am on.

It's a personal decision but I am on the side of killing it now before it gives me liver cancer or transplant.

But that's just me.

[Fisheress]

Well said with the exception of "self inflicted" sx's!  You guys will get a kick out of this one!  Medicated myself last night so I would get some sleep, woke at 3:am with pain in my left hip, got up took 2 motrin and figured I would get on my heating pad.  Turned it on high to get it warm really fast and fell asleep. Needless to say I woke with this terrible burning on my butt!  I have literally burned my right cheek! I am such a stupid A$$!!!  Just great huh?

Now off to go dodge the trailriders coming into town from every which way for the rodeo parade.  Girlfriend driving me down to Med center so guess I will sit on my left cheek and not worry about the traffic!  Again, WHOA is me!  Now I am really pissed off and feel stupid!

Fish.....

[NYgirl]

Ah you are not the first person to do that! I had such bad burns from repeated use on my back that my lower back turned like purple....I thought I had a horrible disease and it never occurred to me it was just repeated overheating that had burned and discolored the skin (i have no feeling in my left hip or lower back to the touch).  URGH

My brother fell asleep with a heating pad wrapped around his leg and had second degree burns.

They are SO helpful but SO dangerous.

I hope you remember to really moisturize that area so it heals well - use some antiobiotic type cream so you dont get any infection.  You have to be SO CAREFUL.

I am so sorry this happened to you.  but don't feel stupid...I think it happens all of the time.

[doll face]

I am sorry if my posts about long lasting side effects scared anyone. That was not my intent. I agree with nygirl that you have no chance without the meds of clearing this virus. I felt like quitting many times during both my rounds of tx, and I had no liver damage. I could not live with myself knowing I could pass this disease to someone I loved. I never imagined that I would have the permante side effects that I do. But to me it was worth the trade. I just happened to be one of the chosen few to get all the sides. Most will never know of any sides stronger than flu like symptoms.

[doll face]

Don't know what happened it posted before I was done.

I think it is more common than you think. I fell asleep a few times with the heating pad on and burned myself. Make sure that you use an antibiotic cream and white underclothing if there are any open blisters.

Good luck and turn the other cheek. lol sorry couldn't resist

[cuteus]

and, make sure that when you read about the lasting symptoms, you don't confuse them with sides. they are not the same thing. SOme of us had symptoms prior to tx, that are lasting post tx, not the same as sides from tx that have remained. There is a big difference and should not be clumped together with all post tx symptoms/sides.

[Dale_Ray]

My wife bought me a heating pad that automatically times off to keep me from roasting myself. That thing is my favorite buddy. Hope you didn't burn to badly fish....

Doll face: Your information was good and accurate. I'm just having a week. I look at this water tower in town that I used to walk to and it was 2.5 miles their and a five mile round trip. Now I have to set down at my mail box to get enough energy to get back to the house. A walk from my office to my truck is becoming a major event. I'm not enemic so doc says there are three things I have to learn to deal with fatigue, fatigue and fatigue. Not dealing well so don't think it was your comments I'm glad your here and tell us things.

NYgirl: I'm having a whinny day. Thanks for being there as usual. Miss consistency.

DALE

[NYgirl]

We are ALL whinny - it's our nature on treatment.  Enjoy it while you have a great excuse!  :)

PS I got an automatic turning off heating pad as well. It's a life saver (well skin saver anyways).  Last night I was freezing while trying to sleep and I wanted to use it like a heating blanket just for some heat but it kept turning off every hour on the hour or something. I was getting so mad just when the blankets got toasty it went off and I woke up LOL

Will I EVER be satisifed? Will anything EVER be enough?

You can be whinny today --- I'll just be GREEDY!  ;-)

[Fisheress]

LOL! Thanks, Guess I was looking for some humor (and sympathy) on my burned up a$$!  After feeling so bad yesterday, I really did not need to add this to the secnerio.

Friole, hope you are feeling better today. I was right there w/ya yesterday. Did ya get to work today? Me, have not seen the office in a week!  Almost decided to go to my reg doc yesterday and have him check my red cell count to see if it was dropping (thats how bad I felt!) Today 24 week PCR and won't have results until Tues or wed.  Oh well, guess my burned up butt will keep my mind off waiting on bloodwork.

Fisheress

[simplehue]

I know what your saying and feeling. I have days that I am negitive about Hep C meds, doctors, employers, insurance companys and life. That,in such a short time, My life has changed so much and even walking my dog is hard. Its been 9 days of pain and depression and today I feel better physically and emotionally and I feel grateful for it. Part of that is the antibotics have kicked in, the other part is having all of you to share with,taking what you say on the board and not feeling so alone with this. You all really have given me hope. Thanks
Hang in there Dale!

[NYgirl]

PLEASE make sure you are on a good antidepressant.  They work fantastically to ward off depression and help us keep on going with treatment.

If you aren't on one - talk to your doctor ASAP.  It's worth it

[Dale_Ray]

Simplehue: I just started on anti depressant (lexapro)last week and its like adding insult to injury. I do sleep because of it so I will stick it out. Your correct who else would I talk and babble to that could even comprehend what I am saying or feeling other than you folks. Hang in there too! We're like the three Musketeers only more of us. One for all and all for one. Thanks for the encouragement.

Nygirl: My heating pad does the same thing. Right when its starting to knock the chill of it quits and I'm fanning the covers trying to find the control to restart it and then I'm cold all over again. If I can be Whinny its more than alright for you to be Greedy. The Greedier the better.

Dale

[can-do-man]

For ME the certainty of liver damage and liver cancer outweigh any POSSIBLE
________________________________________________________________

CERTAINTY????? Having hcv is far from a certainty  of liver cancer. Lets not scare new people here with things that are not even close to being the truth.

[FlGuy]

There are always positives and negatives along the trail we blaze through TX.  It is indeed a rough ride and we see a lot of guts along the trail. Speaking of positives and negatives, I read a few in your post:

+ Got some sleep
- Woke Up in discomfort
+ Got relief in the early am, more rest
- Got a 'warming', more discomfort 'there'
+ Chance to go stylin' in new chaps to the rodeo.

3 plusses, only 2 negative = good day

[sunspot]

dale_ray. "sudden and unexpected greasy discharges" TMI but thanks for the chuckle. BTW, how's Goofydad doing?

I bought a heated mattress pad for use on tx. It helped in my sleeping a lot. Of course a regular heating pad is best for joint pian.

Dana

[GoofyDad]

Generally, I don't think I'd care whether you categorize my post-tx issues as redidual sides or on going symptoms. I think the message here is you can end up with either or. So people should be cautioned not to approach treatment without realizing that all may not be as sunny as they hope in SVR land.

Don't get me wrong. SVR is a GOOD thing. But that you may have residual issues is something you want to consider.

[GoofyDad]

Hey Dana. I'm afraid I'm suffering from my own unexpected discharges these days. Thought I finally had that bug wrapped up. THen last night I went out for dinner and some music, and I guess I ate something that disagreed with me. Awww maaaann! Holy Hershey River, Batman. Up all night long. Uncomfortable and unpleasant.

[can-do-man]

Kinda brings a whole new meaning to 'droopy drawers'

[can-do-man]

Guess its safe to say your not setting to pretty today.

[GoofyDad]

Not to pile on here girl, but:

<i>outweigh any POSSIBLE 1 in 1,000,000 type chance of a problem.</i>

That seems like a stretch to me, too. I mean, how many people do we have on this board with post tx problems? We read about it all the time. Those are not 1 in a million cases, IMHO.

[GoofyDad]

'droopy drawers'

No splotches, yet - my good man. D'ya ever hear the expression raining cats and dogs? Well over here we be raining splats and logs!

-- Can-go-man

[can-do-man]

you know that expression, 'Don't know whether im comming or going'? Sounds like your a doing alot more 'going' these days

[Forseegood]

I'm not treating now so I can only give some little ditties like this to the board...I have these great heating pads (that freeze within one hour as well) there called Sensa Flex and you can get them on the internet...they come in all sizes, small ones for the head and eyes, larger ones for the back, etc...they are great...you stick them in the micro-wave for a minute and they stay nice and toasty for an hour...or if you freeze them for an hour like I said...they are fabo! they are so comfortable and pliant you'll love them...much better than heating pads and that stuff...

[can-do-man]

becareful cause i don't think you would want a heated mattress pad if you start having those sudden and unexpected greasy discharges. Could be wrong though.

[can-do-man]

Hey gal that sees good, for some reason when i think of you it reminds me of the beatles song "strawberry fields forever"?

[NYgirl]

Uh yeah I tend to exaggerate - it's just the way I speak.  However...

80% of all liver cancer patients are HCV pos. What is the percentage of transplant patients?  To say oh the medication might hurt me or oh sides might hurt me so I wont treat...just sounds silly to me when the REAL threats are just that - so much more real.

I have a friend who had HCV and did not treat thinking it would be too hard and the medications were too complex to the body. She has liver cancer - probably won't live another 3 months now. No chance to live.  She's 45 years old and has two little girls. It is a real threat. To act like it's not...that just letting the disease run it's course for "many many years until I get bad progression" well it's not always so realistic an approach to take.

ME...I think it's foolish to worry more about the CURE than the disease.  Kind of like saying well I have skin cancer but I don't want to have it taken off it might get infected with a staff infection and I might die. Yeah you COULD but more likely...that cancer is gonna get you.

Karen with her liver cancer and Frank with his transplant (my other friend who now ALSO has cancer after the transplant and everything) - really might color my opinion but in the real world I know four people beside me in the real world and two have not treated and gotten the cancer.  The other two treated.

[can-do-man]

But the facts state that around 20% of people with hcv go on to cirrhosis and of those 20%, Only 1% two 5% could go on to hcc.

Thats a far cry from everybody, I know your pro tx. and thats find with me, but we should not try to scare people into our way of thinking. We should give them the true facts and let them decide how they wish to proceed. And that goes for the watch and wait folks too.

This board has a lot of knowledge, lets just not lose our credibility.

Not pickin on yeah, and you know i care alot about you and you bring a lot to this forum with your upbeat attudite.

[Dale_Ray]

I may have been to graphic in my post heading but it seems to have cheered some folks up or at least brought them out in their droppy drawers. Ha!

I have done the same shower routine and had to do it in step one step two step three and rest time in between. A big decision is to sit or go eat and when I feel hungry. Sometimes the twenty paces just aren't worth it. My doctor tells me that all of my numbers are normal and great and better than what he usually sees with my type (been told that before). But enough about grammar school:). If I could go out and sit on a warm sandy beach and with a cool breeze and partly cloudy skies oh say around 68 to 70 degree and 34 weeks pass like they were minutes - I'd probably quit complaining.

As far as work I show up and hang on but I don't feel productive and sometimes feel like I am taking advantage of the company. I've never had to back up to get my paycheck but I feel a little like I am right now. Ashamed to take it for the effort I can't put in. I do the dizzy thing too and it just requires a good sit about every few minutes. I've almost passed out in my closet trying to put my shirt on. You would think batman and robin were working me over in there from all the boom pow noises going on. What a misfit I have become.

I hope you are doing well today and if you learn any tricks about putting a kick back in our step let me know. Best wishes, Dale

[NYgirl]

Thats a far cry from everybody, I know your pro tx. and thats find with me, but we should not try to scare people into our way of thinking


there are a lot of people who do not realize at all how devastating this disease can be.

While this is a POTENTIALLY life threatening disease - the thing that rings the truest to ME is...Nobody KNOWS whether someone's progression will be three years or thirty.

I don't think it's worth the gamble to NOT try and kill the virus if you are able. It's VERY easy to want to listen to the "slow progression" part of the talk and to say well heck I'm not going to go through sides and all that since I don't HAVE to - so I really think it's ALSO important to impart the truth of what could happen.   It's a big gamble in MY OPINION. One that I decided was not worth taking.

[simplehue]

I was on lexapro 10mg before the Hep C thing. It was increased to 20mg 3 weeks ago and it has helped with the increase. I have an imbalance in brain chemicals so I have had to take them for years now. Dale if they just started you on Lexapro, give it about another week or 2. It usually takes a little time and do hope you feel the difference, I think you will. I have looked at this situation as a new chapter in my life book. Its different but I can do it and will make it the best that I can.  Hugs to everyone today, of course tomorrow I may want to hit something but I am up for the challenge.

[NYgirl]

LOL welcome to my world!  I always tell everybody here I have a Magnum in my purse to shoot at the little old ladies who slow me down on the highway ;-)  Actually I do but don't tell anyone........

Seriously - the stress factor alone of everything going on without even the Ribavirin to give us the "rage" is enough.  We are some STRONG people in here to manage not to be beaten up on a daily basis ourselves for our temper!

You've certainly come to the right place!  :)

[Forseegood]

I think this issue is much more complicated, and that's the rub...it should be much more of an individual, case by case analysis issue as to whether to treat...I have many anecdotal stories to draw from cause i've gone to more than a few boards, and more than a few hep c support groups and what I can only come up with - is that you have to call this  according to "your own" stats...because the treatments been around awhile and there is much more data coming in...and still, it's basically all over the place...too many complicating circumstances...

These are hypotheticals so I'm not addressing any one person...

say you know a person who didn't treat and was far the worse for it...did she have a recent drug and/or alcohol past? what was her liver damage? low, high? what was her lifestyle? does she smoke? eat properly? and yes, some might know of people who progressed to liver cancer or esld at a comparitively rapid rate and yet they lead exemplary lifestyles...but these circumstances DO enter into the equasion...

Just to complicate the issue...while I do know of people who really should of treated and were very sorry they didn't, I also know of people with next to no liver damage who went ahead and treated and they eneded up with long term sides, diseases, whatever...they only know they didn't have any of it before they treated...if they cleared then it was worth it to them for the most part, if they didn't clear then it clearly wasn't worth it to them for there is the phenomenon of people who seem to be able to weather the disease pretty well for a great many years....

a few friends of mine have had this disease for over 25 years, some 30, and they get nary a symptom and their labs hold steady at low liver damage...two guys I know are almost 60 and one 62 with these kinds of stats...I know some women like this too...

so yeah, if youre advancing in the disease - by all means treat, but it gets much more complicated if you have low to no liver damage...I myself with low liver damage would not treat cept that I am getting symptoms, if I didn't get symptoms I wouldn't treat...it's all a question of weighing on set of circumstances against the other and in the end it's a big giant **** shoot for so many of us...hopefully soon this won't be such the case...

[can-do-man]

Now just don't get that new yorker blood of yours boiling, you know i love ya, and care about ya. Just summin tells me that you'd like to stick that there Magnum of yours some where. You know like me and where the sun don't shine? "YIKES" Just keep that durn thing in your purse. You know makeing up is a whole lot more fun. Watch ya think? 'wink' 'wink' :)

[can-do-man]

Well said, now can we get back to your strawberry problem? Heck i might be able to help ya, Every spring i do go and hand pick strawberrys. Watch ya think? :)

[Forseegood]

not to scare the people who are treating with hardly any sides, but I just thought I'd back you up in that my treatment nurse (who is more than ready to take me on, ha ha!) that works with my doc told me that sometimes when she does hear of people who don't get sides she's a bit worried for them for it seems that the people who get the sides are the ones who clear...

a few friends of mine told me their treatment nurses say much the same things and sure, this is not scientific by any means, just interesting...of course this will cause a hue and cry from people out there who went ahead and cleared and had hardly any sides, or conversely, the people who had a bunch of sides and didn't clear...but it is still interesting to say the least....she says, and I've heard this before, that it's because the body is activating an immune response ergo the bad sides...

[Algernon]

I was one of those fairly healthy people with HCV for 30 years, little damage, and 3a.  After years of debating treatment, I am now on week 9/24.  This thread on long-term sides has elevated my freakout level.  I'm VERY worrried about long term sides and increasingly concerned that there appears to be so little research on this.  I particularly worry about ribavirin causing cancer (studies ongoing in mice, great).

Is there any hard data out there that anyone knows of?

[honey11]

Is there anyone here that has not had sides at all for the whole duration?  That would be wonderful but then again,,,,if it means you may not clear,,,,not so good,,lol   I guess we have to go through pain and feel like we are dying to reach SVR,,,
I know that alot of times,,,people in beginning don't get sides but seems to always catch up with them mid way,,,,especially a geno 1.

[can-do-man]

No need to freek out, theres lots of people that have no long term sides, Being your a geno3, your one of the few lucky ones that should only have to tx for 24 weeks. I would think long term sx would be less common for the people who only have to tx for 24 weeks. As for any hard core data? I just don't think these meds have been around long enough for anyone to know for sure. Myself i worry more about long term sx for those of us that have to do 48 or more weeks. Cuteus did 72 and she doesn't seem to have any lasting effects. Your 9/24 so not to much further to go. Best of luck to ya.

[doll face]

I know of a few people that had very little to no sides and have cleared thier first time around. One guy that I begged to come here and tell his story because he never had any sides but an hour worth of aches right after his shot. It DOES & CAN happen. I want to stress again that I am not the norm here. Most people do NOT get as many sides as I have, and I do not want to scare anyone off from tx. It is the only way right now that you can be rid of hepatitis c and YES I would do it again if I needed to.

[Forseegood]

I certainly didn't mean to scare anybody about the long term sides, but if we want to be fair in analyzing a situation, I guess we have to put all the facts out there for people to weigh...just talked to my friend in Santa Monica who is going to go surfing in a little while...he's 49 and clear and feels absofrigaloutly great! he did have sides post treatment that he was convinced were long term, and they slowly resolved in about a year, some sides would go away one month, other sides would go away another month, etc...I know many other people who if they did get residual effects from treatment (and we have to throw in what the actual hcv did) they have mostly cleared up post...

I'm just saying that there are those people out there (and if you have had this disease for 30 years and are a stage 0 or 1, then it obviously isn't hitting you that hard)...and of course there are extrahepactic issues, but with the people I know thats not been such a problem....this being my OWN experience....

my take away point in all this (and boy, can I get a point lost in all my convolution) is if you do have low liver damage you have to weigh the cost/benefit of the meds vs. the disease itself...all according to your own situation and circumstances, that's been the party line of most hep docs I've ever spoken with....and my own doc is very positive about new meds coming sooner than later, especially VX-950...of course that's off and most of us have to go with what they have now....