I have a couple of questions re:symptoms....

[Xenigma]

Heppy Friday everyone!!
This week went by fast.  I think Spring is in the air!
I have a few questions for everyone....
When you were diagnosed with HCV, did you have many symptoms prior to the diagnosis of HCV and what were they?  Were you diagnosed with other diseases or with CTD's or Immune System problems like RA, Fibro, Sjogrens, Night Sweats, headaches/migraines, skin rashes, for the ladies - menstrual irregularities similar to peri-menopause  grrrr...the list goes on and on)
If you had symptoms prior and started treatment, did the symptoms get worse or better while undergoing treatment?  It seems like (from what I have been reading) the sides of treatment are the same as the sides I have been having the past many years.  I've been diagnosed with many CTD's over the years. http://www.ctds.info/
I'm afraid that the pain I'm feeling will be much worse on treatment. My Doc says that after treatment most of the symptoms I'm have having now will subside and I will feel better. I'm not so sure and everyone is different. So that's why I would like your input. If you've finished treatment, have you found that to be the case? .... or are they lingering with you?  
So I guess what I would really like to know is...
Symptoms prior to treatment
Symptoms during treatment (were they worse than prior to tx)
Symptoms after treatment
I'm very interested in your responses.
Thanks for reading....
Hugs to all,
Enigma

[HapPHepHatR]

I have been sick for years myself. Always tired, single mom working third shift and broken sleep. I always attributed my symptoms to just working hard. From time to time I would become so weak and fatigue that I would go to the doctor only to be put on iron or I would take a couple days off and just sleep. Somehow I would pull through and start over again. My son moved out 3 years ago. I started school and was planning my life in a new direction. When I started school I found myself exasperated walking from the car to class. Also heavy breathing, weakness in my legs. Could not climb stairs. I am 41. I smoked so I gave up smoking. This brought on even more problems. Headaches...nausea....all over aches and pains. I went to doctor and had test run from upper GI, lower GI, echocardiogram, stress test, MRI of chest and head nothing showed up. It wasn't until I began having sever joint pain last year that my doctor checked for rhuematoid arthritis. My test was positive. I started seeing a RA and taking Bextra for the past year. I was still fatigue and nausea. My HMO gave me little access to RA in Orlando. I changed insurance to PPO this year and saw a RA of my choice. He saw records from GP and immediately suggested HEP B & C tests be done. I was confused because I didn't consider myself at risk for this disease. Thank god for him. He explained that Hepatitis is nortorious for giving high Rhuematoid Factor readings and that this in conjunction with elevated liver enzymes and the symptoms that I was having it was very likely. I haven't even had a liver biopsy yet. Won't have until the 19th. But I assure you I will do all I can to get this beast off my back. My school has suffered and my quality of life SUCKS. I am so thankful for this board and people like yourself. I have learned alot and will be back for more support and hope to offer as much as well.
Good luck to you....
Keep in touch
HapPHepHatR

[fsplink]

I was diagnosed with rhuematoid arthitis and that's when they ran the test for hepatitis c and it came back positive. Most of the drugs for RA are toxic to the liver so my rhuemy doc says he'll wait to treat until after I go through treatment. He says that rhuematoid arthitis and the arthritis you get from Hep c are almost identical. So, he said the joint problems may clear up from the treatment. Still waiting to start-paperwork,etc.

[cuteus]

Is that someone we know? LOL.

[painted**posies]

Hi Chevy: Yes, my husband is negative. And so are my kids. Two brothers in law are positive.

I have never had a manicure, pedicure or lived in a dorm. But I've had many haircuts with scissors. I've never shared a razor with a girl, other than my daughters. I retired after 22 years with a law enforcement agency and was exposed to many people, some who were bound to have been positive. And I've had lots of medical procedures including four foot surgeries.

There's just no telling where I got it and I don't spend a lot of time lamenting over where I was exposed. I'm 61 and I figure I got it just from living life.

What is taking me time got get past (but I will)is that I went from a viral load of 600 to 0 to over 50 million. I had myself convinced that I was in remission. And I was. But I'm not now. And I'd be foolish if I said it was not a disappointment. I came here to try to educate myself about how to live with this disease. My husband is a diabetic and he strives not to exacerbate his. I'd like to do the same.

My Dr. is recommending treatment despite the fact I haven't had a liver biopsy yet. I'm seeing another Dr. in April and will see what he says. I'm here to gather information about the order in which it makes sense to pursue my education and/or treatment.

Thanks for your comments and your good wishes.

[painted**posies]

I had no symptoms prior to an acute episode. I had never been diagnosed then got flu like symptoms that got so bad I couldn't get out of bed for weeks and was very sick to my stomach and couldn't eat. My husband said I looked a tad yellow. Since I'd had weight loss surgery about a year before, I went to see a gastroenterologist. He told me that it was the weight loss surgery. I went to the wls dr., he said it wasn't. I had a blood test. I was positive for hepatitus C.  Once the acute stage left, so did all of the symptoms. My first viral load test was 600. Then last fall I had viral menengitis. A test while hospitalized showed no detectable viral load. The only symptoms I had at that time were those attributable to the menengitis. Lately I haven't been feeling just right and went to see the gastro. dr. expecting gallbladder problems. I had an ultrasound which showed two small stones which he didn't think were a problem. And a blood test which came back a whopping 50 million viral load!  From 9 to 50 million in 18 months.  And no symptoms that I would call much of anything. I don't know if my symptoms are due to the small stones or if they're hep c related. But they are mild even given the very high viral load. I still have trouble grasping the viral load number. And I am going to ask my Dr. at home (I'm a snowbird in FL for the winter) to retest me.
I had no risk factors at all...didn't drink, didn't smoke, never did a drug, one partner my entire life, yadda yadda yadda...no transfusions..dunno where I got it...(not from the wls) and not even sure the symptoms I do have are related to the hepatitus. Others I talk to had lots of symptoms. Some had none at all.  Such a strange disease...many of us are not tipped off at all that there's something wrong.

[audreywald]

It does not hurt to be prepared. I am on week 10 and started using Nioxin around week 2. So far my hair still covers my head, but there are more long hairs in the sink.

[Xenigma]

Thank you everyone for answering my questions.
I have a little time before I can start treatment (If I can start at all) and want to get my "Ducks in a Row" so to speak.
I want to try and be prepared for the sides and you've been a great help.  I DO understand not everyone has the same sides but if Nioxin can help with the hair loss then I think I should have it on hand.  The Folic acid too for those horrible mouth sores and many other preps for different sides. (Besides getting in some Doctors appointments for other things)
Congratulations to those who have cleared the virus.  I'm so happy for you!!  Be strong to those still treating.  
This is a great support system and I'm glad we have this board.
Thank you again for your help  :-)
Hugs,
Enigma

[lackalustre]

by the way i was geno 2b and cleared the virus!!! yeah

[lackalustre]

my symptoms were similar to blue skies.  chronic fatigue for years and fibromyalgia.  couldnt do much of anyhting (gardening, etc)  without paying a great price with terrible muscle soreness and chronic neck and spine pain.  i was a regular at the chiropractor and massage therapist office.     i reacted (over reacted) to every little medicine and substance and had lots of stomach problems. bloating, etc...  dry eyes and no stamina.  quality of life not good.
   during tx.  my shoulder was a real problem and bad dry eyes and mouth.  but as treatment progressed my neck/spine pain got somewhat better and fibro symptoms got better.  now off treatment 6 months i can do much more without paying the price.  no hot flashes, appetitite good, energy better, and mood is getting better all the time.  id say consider treatment.  hcv does wacky things to your whole immune system.  drs. now recognize that too.  there was an entire article in HEPATITIS magazine about all the symptoms that dr.s now recognize that accompany hcv.

[psychdoc]

I was tired for several years before being diagnosed. Finally my Dr. did a Hep test. I was taking a nap every day. Then I did tx and had a ton of sides and the fatique was much worse. After tx, I had gallstone pancreatitis and had to have gallbladder surgery. I am still tired and still take naps 4 months post tx but things are getting slowly better. Hope this helps. Also I was undetectable 1 month post tx. Will get my next test 6 months post tx.
Hugs and prayers for all,
Love,
Barb

[mumsie]

Before dx, I complained of fatigue,was tested acouple of times over the years,was told I was anemic and to quit drinking so much.Two years ago I complained of swollen joints,my index fingers were the worst,my neck vertabrea were deterioating also,and my right knee,took vioxx and one other one they really helped,my doctor kept doing tests,kept telling me to quit drinking,then I had to have a partial hysterectomy,while I was recovering at home I got a letter from the health nurse telling me I had Hep C and had had Hep B,that was march of 03,started tx on Jan 22 04, did shot 8 last night ,16 left to go.I am lucky I'm geno 2 with stage 2,I'm in good health I haven't smoked in 2 yrs, I've been a veg for 25 years then started eating meat 3 years ago, don't do much of that anymore,I'm 46 ,female and have a active life style and job.  Sides havn't been too bad the headaches,pain running down the hip-leg,dry realy dry scalp and now some rash red in nature on my face of course, head pressure and now really sore throat I think it's my thyroid as it's at the front of my throat and looks alittle swollen,apperently the thyroid is one of the sx I didn't know about,a friend was over the other day and his wife had gone thru tx when it was three shots a week,really tough stuff,she made it, she's clear and free.Feel edgy sometimes,and I have very little support,this sight CAN be good when they're not tearing each other apart, it's like watching abusive neighbours or something,can't do much about,who ya gonna call...board busters!!!Take care, Sue

[pamerilla]

You asked some questions that I have been pondering this week. Mainly cuz since I was dx in Jan, I had been feeling pretty darn good until this past week when the fatigue has REALLY set in BIG TIME! Prior to that fatigue on and off, minor aches and pains, nothing to get to excited about.I figured being 50 had something to do with it. The only thing that has really bothered me on and off for over 20 years is periods of extreme itching. I don't know if any of you moms out there have experienced this but the last 2 months of both my pregnancies (1981 and 1983) I scratched myself raw. Even to the point where they induced my daughter early cuz of my misery. Liver enzymes were elevated at the time but was never tested for liver disease cuz there is a condition during pregnancy (can't remember the name tho)with these symptoms. Thankfully they went away postpartum! Flare ups infrequently since then, mostly med related (Sporonox)but started up again last fall. Since I was perimenopausal I just assumed it had someting to due with hormones cuz of the pregnancy thing. Guess not! Also echoing your question, do those who have cleared feel better or at least as good as you did B4 treatment? Go back to DR on Mar 31 to get results of genotype and VL, etc. and to discuss Tx options. Leaning towards Tx but the thought of going thru it and feeling miserable after has me rethinking it from time to time.

[Ziggy2004]

Hi;
I totally agree. Sounds like you are handling better then I did but to keep moving I believe is the key.  Even at the lowest point, I forced myself up and out the door.
The guys I work with were a huge factor for me.  I work in the office of a City Operations Centre.  Meaning, where all the salt trucks, buses, roads trucks and parks guys are.  All burly and rough.  However, they made sure I was able to get to work.  On days where I didn't think I could drive, they would pick me up.  Since I live alone, it was better to be here then to sit at home - and you do feel sorry for yourself.  Although I could only last 7 weeks on tx, I believe getting up each day no matter what, is a great help.  I was 92 lbs and had a hemoglobin of 79 at this point so I not much of a tough guy - just stuborn.
Cathie.

[ellissg]

Before treatment, shortness of breath & dry skin. Now I'm on week 8 of 24, I have 2b, and I feel very good. I had a little nausea for the first three days after the Friday night shot, but even that has subsided. Headaches have not been a problem.

I have been very careful with my diet. I've paid close attention to everyone's experience. I always take my Rebetol with food. I eat fruit between meals, have almost eliminated sugar, use very little salt, drink about 80 oz's of water daily. I also take Folic Acid, which really helps the mouth sores, Acidophilus, Vitamine E, Milk Thistle, and spray the nose with AYR. In addition, I force myself to get up each morning early, and always go to work, rather than laying around feeling sorry for myself. I do moderate excercise.......just a little walking and stair climbing.

On shot night, I use Tylenol PM, and an extra 25 mg of Benedryl. I wash my hair and condition with Nioxin, and have almost no hair loss. Skin is still dry, so I rub myself down with fragrance free moisture creme. Fatigue is a reality, but keeping moveng is the key!

[Tallblonde]

I wanted to thank you for so eloquently expressing yourself on the thread started by Cindy from MedHelp. I agree with your point of view 100 percent.

I'm sorry to hear that treatment has been so rough on you.  

Susan

[Ziggy2004]

Good Morning;
In the beginning I just felt something was not right.  I was usually always on the go.  Single mom of 2.  Now grown and gone. I did a lot of skiing, horseback riding and had my own Harley.  1988 Sportster.
It began with headaches - terrible headaches.  I was always tired and fatigued.  I normally work 2 jobs.  I just always say I am expensive to keep.  I would like to go for a weekend or buy that outfit that I want and the second job was my play money.
They started doing tests on me but could not find a problem.  I thought maybe it was just me. Empty Nest Syndrom.  Finally my doctor did the unthinkable.  Blood test for HIV.  The HCV is done at the same time.  Dec. 20, 2002 was the day of the news.
I was only able to take 7 treatments. Not to scare you but most all will tell you that the tx are not easy.    Some are worse then others but you must try to keep your spirits up.
If you are going to begin the tx, be sure to stay in touch with this forum.  I found it only last week and wish I had known a year ago while do tx. The people here are great support.
Good luck.  Keep good thoughts.
Cathie.

[madbyron]

Before diagnosis, I developed psoriasis, hypothyroidism, fatigue, and short-term memory lapses. During treatment, all got worse, in addition to the usual tx side effects. Three months post-tx, the thyroid is still shot, the psoriasis is a little worse, I now have psoriatic arthritis, and in general, am not feeling too swell. I expect some of these to abate with time as my immune system attempts to right itself.