Where do I begin?

[dazed_and_confused]

I'm going to attempt to condense my questions as much as possible. I was diagnosed with Hep C in Feb '02, and finally began treatment in April '03 (Peg-Intron powder for inj./Riboviron). My genotype is 2b, and I was put on the 6 month cycle. The side effects were horrendous, by the way, but my Gastro doc did prescribe meds that took the edge off a lot of what I was experiencing. Some of the sides were rather unusual: mild hallucinations, a phantom pain in my right shoulder, and on and on, so when I developed a severe shortness of breath and marked chest pain (showed up 4 weeks before completion of treatment), I just attributed it to another crazy side effect. I was wrong, temperature shot up to 103, and ended up being hospitalized. The end result was having the treatment halted. This all took place in September of 2003. At that time they drew blood for a viral load. When the results came in, they showed that the virus was undetectable. They drew blood to check the viral load again about 2 1/2 weeks ago, along with liver enzymes, thyroid panel, CBC. All were normal, with the exception of the thyroid panel. Results are still not in for the viral load.


Now to my questions: Have they checked my viral load too soon? What are the chances of it returning, since I didn't get to complete the treatment? Why am I still so tired?...I'm not talking about the tired where one says, "Gee, I need to sit down!" I'm talking about the fatigue where one says, "Gee, I don't think that I can get out of bed!" I need to get back to work. This illness has financially devastated me.

[cuteus]

Just something I learned at a Woman's health conference: ekg./ecc are not accurate diagnostic tools for women, you can watch the conference on the web until this March at the www.northshorelij.edu site.  So I just had an echo and now a stress test, due to chest pain and shortness of breath caused by the anemia.  we should be advised of a full work up prior to tx, and be told when anemia sets in, not when we shown symptoms.  
In a perfect world.

:-)

[willing]

it's got to getting challenging,  stay strong. You'll be ready to start the 10-week countdown pretty soon... and the arrival of the slush season should help out. Indiana's description of the post tx experience is right on point - a series of plateaus with occasional setbacks. I  think of it as the equivalent of post-war mine clearance: every once in a while you come across a pile of unexploded riba molecules, and BOOM, you're back on the couch. Most  of my sides are abating but the mental effects are stubborn. It's Monday and I'm still trying to solve the 1st problem of last Thursday's math midterm ..

[DebbieDo]

Good communication with all your doctors should be a must.....If you have questions write them down......first thing they always ask is how ya doing??? and then they read your chart for results of tests and they inform you AND then its your turn ........get answers for all questions.......i was always a water drinker and since being here and reading about all this water business i have been drinking more.......it bothered me so much during the night on my last visit i asked the doctor HOW MUCH water......he says keep hydrated......8 glasses i water a day and whatever else you drink........stay away from caffine cause it naturally dehydrates you.......When he did my history he asked me about my heart....he asked me if i drank and when and how much the last time it drank........he asked me about drugs........and that was pretty much it.....one thing he asked me each and every time before TX and my last visit......are you depressed.....and he answered it for me......he told me i was the happiest patient he has......i said thats pretty sad........depression can be a key side........so ask questions......and you will feel more confident about your tx........we are all different....i dont have many sides either......jsut this sinius thing and some fatique......i consider myself lucky....i will be doing 7/48 on Monday.....hang in there sweetie........dont under estimate your doctor........ITS a doctor patient thing......so ask your questions...........help the dotor advise you........ask him for some reading material.....im sure he has lots of it.....or go to www. whatever you want to know...and read......that is where i have found most of my info.....and of course all you people here......have a good weekend......Deb

[dazed_and_confused]

I couldn't agree more in regards to keeping open communication with your doctor. By the time that the shortness of breath and chest pain showed up, I wasn't thinking very clearly at all. Common sense had flown out the window. I actually suffered through it for two days without saying a word about it to anyone. My rationale at the time (which wasn't rational) was that I was only four weeks away from completing my treatment cycle, and I was terrified that were I to break my code of silence,they'd remove me from treatment, and that at some point I would have to start it all over again! Is that crazy or what?! I'd actually convinced myself that it was just another side effect, and would go away on its own! Thank god that by day 3 I had come to my senses, and called my commitment-to-care nurse. She most definitely got my legs to moving to the doctor's office that morning, telling me that I needed to be there, like yesterday!

[layla]

It was a very boring trip so that was good though I did think I was going to get flattened by mack truck on the return trip. There  seemed to be a snow storm everywhere I drove and visibility was very poor. Normally it never bothers me but it was incredibly stressfull the whole drive back. I jumped on the couch as soon as I got home. I'm ok just wanting this to be over, thanks for asking. I'm wondering if you are feeling better being off the drugs now? Is it very noticeable? LL

[audreywald]

I thought I read that anyone with some sort of cardiac history should have an EKG done. My liver doc is pretty big in the field of Hep C;  he does only hep C patients, and he did not advise me to have an EKG.

Its so hard sometimes to know what is right. If you have a doc you believe truly knows hep C; I would stick with what he/she says.

[haleys comet]

It would be great for all to have a complete physical before starting treatment. But all the tests in the world prior to tx wont predict some of these sides. probably the most dangerous is the coagulation disorders....it just is so important to listen to your body flu like symptoms are common hair loss....anything else should be checked and even the flulike symptoms should be reported to your md..communicate....it can really help you get through this tx

[honey1616]

Hi Cherry...Yep its definitely scary and somewhere I have read that EKG would be good.  When I first went to dr...I filled out questionaire and it did ask about heart condition and maybe just maybe if any of those questions were a yes..then we would have proceeded to EKG.  Who knows??  I'm finding out at this stage of the game...that me and only me has to cover my own butt because noone else is.  All I can tell anyone that just found out they had this is to read, read, and read.  I have a folder that I collect all my information in and carry to dr's office if I need to ask questions or show studies.  haha Maybe when its all said and done..I should go back to school and get my degree.  But honestly...I know what you mean as it freaks me out at times...some of the stuff I find out or read and just pray that we are not a bunch of lambs being led to the slaughter!

[jg2001]

I agree with your wholeheartedly.  How are we suppose to know if the doctor doesn't tell us?  do they automatically assume that we know everything?  Maybe, just maybe, they think that we all get diagonosed, go home, get on our computers and research everything ourselves so there is no need for them to advise us...hummmm...maybe that could be handout after the doctors tell their patients they have this disease!  "Step 1.  After diagnoses, FREAK OUT.  Step 2.  For questions about HCV go to www.(fill in the blank).    Step 3.  For questions on treatment go to www.(fill in the blank).   Step 4.  For questions on side effects go to www.(fill in the blank).   Step 5.  For comfort and support from others with this disease, go to www.(fill in the blank). (But we all know the Step 5 blank would have THIS FORUM in it! :))  Well, maybe that would be better than not giving ANY information at all.  At least that would point us in a direction to find answers that we're not getting from the professionals, or questions that we just plain forget to ask.  It was by accident that I found this site.  I was looking for answers and didn't know where to turn.  This information, this forum, should be made available to people.  The vast amount of information and support I found here is...is..a God send.  And I mean that.  I come to this forum a couple times a day looking for your and others posts because I KNOW I CAN FIND A SMILE HERE and more often than not, a good hearty LAUGH! During this period of uncertainty and WAITING, and STRESS from the WAITING and SLEEPLESSNESS from the Stress of the WAITING and HEADACHES from the SLEEPLESSNESS from the STRESS of the WAITING (Boy, I could go on forever with this one! LOL!!)  Well, you get the point.  Sorry, I am just rambling now, my husband broke my train of thought! Thank God!  Have to go smoke now!  I just want to say, when you and Ring get started, you both make me laugh...that's priceless.  Thank you.

[cherry_Lynne1]

Hi~~~~~I wasn't aware of this when I started treatment, but a friend who also started treatment, got the insert on the Rebetol and it specifically states  that anyone starting rebetol should have an ekg done. My dr did not have me have one done and neither my friend. My friend developed severe chest pains and did the right thing in taking himself off the medication. Come to fine out he did have something wrong with his heart. I just wonder how many other people (myself included that did NOT have an ekg done prior to taking Rebetol) Of course before the injections the medical profession wants us to see a psch to make sure we are stable enough for treatment since the side effects of suicide idealation, but I wonder about how many of us knew about the ekg before starting Rebetol or Copegus. I sure didn't know about it and it scares me when I hear of people having chest pains on treatment. Any comments would be appreciated. I just didn't know about the ekg that should have been done prior to treatment. Any feedback welcome.~~~Cherry_Lynne1

[dazed_and_confused]

On the day that I was officially approved for treatment (Peg-Intron powder for injection/Riboviron) my gastro doc gave me the number for Plough-Sherrings Commitment to Care for an I.D. number to be assigned to me. The rep that I spoke with asked me a few general questions, then asked me what my weight was. She then told me that I'd have to maintain a fluid intake that was half my body weight in ounces on a daily basis. Straight from the horses mouth, so to speak. Never had been a big fan of water, so the adjustment was a little difficult. The H2O intake should be tempered with other fluids...fruit juices and such. No caffeine (another adjustment) and absolutely no alcohol. An EKG was never performed on me prior to treatment, so I did miss out on that one. However, when in September the severe shortness of breath/chest pain came on board, they did run an EKG, followed by drawing blood to check cardiac enzymes, and eventually an echocardiogram. All were normal. The final diagnosis was chest wall inflamation/infection.

[lackalustre]

dazed:  you may very well acheive SVR  with stopping early.  get checked 6 mon. pcr after stopping your treatment.   aare you eating well and taking B complex to help build you back up?  i have had a slow recovery after treatment also.  i was on it around the same time you were. stopped in aug.   2b geno also.  will get pcr soon.     sounds like your experience wasnt too fun either.
  befud:  we have to be proactive about our treatment.  sometimes we can learn more from each other than our drs.   many drs.  dont know everything about this disease they just try to treat us as best as they know how.  a gastro who sees and treats a lot of hepc  is the best.     even they  play down the side effects from what ive seen. ( i still say they should take one injection of interferon themselves!! ha just kiddin)  although mine gave me meds to get thru it and would have used procrit or neupogen if needed.

[Fubarcat]

I was wondering where you have been today.  If I make a lot of typing mistakes, sorry.  Just woke up from my evening nap and getting ready to put my jammies on for bed tonight!

I think you make a valid and good point.  Each of our illnesses should be treated INDIVIDUALLY and not as a group.  Although I have certainly learned a lot from this Board, I still check with my doctor on things that I think he would have the best knowledge on and question him about things that I have read here.  I know my doctor knows my disease best and I like to keep updated here, but rely on my doc to tell me what MY body needs.

As for not being advised about alcohol or water:  I think they didn't advise you about alcohol because it is just plain common sense that alcohol kills your liver and if you want your liver to get better, then do not drink alcohol.  This was one of the hardest things for me because I was a 2 glass a day wine drinker (and more on weekends).  I absolutely LOVE wine and had to give it up for this treatment, but I knew that going in and I didn't even discuss it with my doc.

I agree about the water.  I was never told to drink lots of water, but I read it here and I have been doing it.  I asked my doc and he said, "Well, if you are thirsty, drink.  It can only be good for you and isn't going to hurt, so drink the amount that your body is craving and don't worry about it."

Sometimes I think we read things on this board and get crazy thinking EVERYTHING applies to each and every one.  Talk to your doctor and get INDIVIDUAL care from him/her.  Ask as many questions as you want, even ones that are prompted by this board, but hopefully he/she will give you the right answers for YOU and not for everyone on this board.

Nighty night.

[haleys comet]

these are all reasons why anyone experiencing acute shortness of breath should be checked in the er.............please............i had a pulmonary embolism that could have killed me. the symptoms were right rib pain and difficulty taking a breath.
there are plenty of dangerous sides to this treatment.the key is checking them out as soon as possible and having a good relationship with both gi and primary md.

[dazed_and_confused]

Drinking all of those fluids sure does sound familiar! I even kept a chart. Surprised that I didn't "slosh" when I moved! The side effects were bad enough, I can't even imagine what they would've been like had I not been constantly hydrating myself!

One thing...the woman that I mentioned that was on the Pegasys, was never advised about the fluid intake. Is Pegasys so much different from Peg-Intron that hydration is not a factor?

[ellissg]

My Doctor has had much success with Peg-Intron when he uses the weight based dosage and the Rebetol combo. Even with big people, I am 6'1, 235 lbs, most of his patients have SVR.

I drink almost a gallon of water a day, and more on shot day. I have had minimal sides, but I'm just on 3 of 24.

[dazed_and_confused]

Tonyz--thanks so much for your quick response! Your comment made me feel a lot better, I guess I'm just pretty edgy given that it's taking so long to get the results back. I guess that maybe since I was "down" for so long, maybe it's going to take my body a bit of time to recover. I can say that what I'm experiencing now, is nothing like what I was experiencing before and during the treatment. If I can shake this horrible fatigue, I'll be fine. I'd started walking to build up my strength, and had been doing quite well (had gotten up to a mile three times a week), then one day I decided to push myself and walk an extra half mile. I paid dearly for it by having to spend the next two days in bed.

One of my dear friends has a sister that was just recently diagnosed with Hep C. They started her on the pegasys/copeg, she had to be removed from the meds just last week, after less than a month. Developed severe shortness of breath (much like what I experienced last September). She is roughly 60 pounds overweight.

[willing]

excess weight has been shown to inhibit the likelihood of SVR  combo tx <a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12939590&dopt=Abstract">see</a>.
"Excess weight" here is defined by a Body Mass Index (<a href="http://nhlbisupport.com/bmi/bmicalc.htm">BMI</a>) rather than actual weight since the index accounts for height. One of the major plusses for PegIntron over Pegasys is that dosing is weight-based (though Roche claims, somewhat suspiciously IMHO, that their one-size-fits-all 180ug dosing is adequate, <a href="http://www.pegasys.com/hcp/enhanced.asp">see Dr.Colleague, etc.</a>>. Sounds like your Dr.'s on top of this - best wishes.

Layla, hope you're traveling, not flattened by the Mack fleet. How's it going?

[Tony-z]

[B]dazed_and_confused[/b]
  In responce to part of your questions. The time frame is long enough since stopping treatment for the PCR viral load test. The answer to your question on weather you have beaten the dragon will lie with the results of your PCR test, if you show undetectable then you have a very good chance that you have been cured. There is some new information that people with Genotype 2 or 3 may only need 16 weeks of therapy.

[B]This question is for all.[/B]

I just talked to my Dr office and they advised me that new information shows that people that weight over 75KG don,t have as good a chance of obtaining a SVR with pegasys as they do with Peg-Intron.
[b]Has anyone else herd about this![/b]
I was hoping to do my TX on pegasys but they said no, at my wieght they only use Peg-Intron.

      I feel confused as I have never heard this before, so I guess I'll be taking Peg-Intron. But I will try to find more information about this.

       Think Good thoughts if the fog has drifted away :)

                  Tony Z