symptoms of disease/treatment

[zzzztime]

Im curious how many here were feeling sick when they started tx? It seems wierd that I have so many of the sx that you all describe with tx but I havnt started. If any of you were feelin sick did the tx relieve any of your sx or just add to them? also did anyones sxs come and go? Some weeks I feel great (then i dont want to tx) the next week I feel like I have been hit by a truck, flu sx, fatigue, joint pains, numbness in hands, RUQ pain,etc. my doc said he didn't think the hep c would come and go like that, he now thinks I also have MS. Im still deciding on tx. was leaning toward waiting until I found this site. its great to see you all helping each other and to see most able to keep working, that was my biggest fear. is there anyone here that is holding off on tx for now? any comments on some of the other sites about tx that scare the h*** out of you? Have any of you had problems from tx that don't go away. Is there any where to get info on docs. I'm in Milw. WI we don't have alot of liver specialist. can i assume that if I am seeing a hepatologisbt i can feel Im in good hands or are there some with bad reps? does anyone know if high RA factor causes symptoms and does that return to normal with tx. also does cryoglobulemia go away with tx? I mentioned in a previous post that i have narcolepsy are there any others with it. That makes me worried about tx too. I  think the hepc made the narc. flare up and im not sure how tx will be if I am already fighting severe fatigue with numerous meds. sorry so many ????

[Alwaysme]

I to have many symptoms or side effects, the worse being joint paint, tiredness, itching,and the fact that my brain has left me and I know not where to find it, thought I was crazy , truely!! I went to Dr. right before Christmas and was gifted by the news I have Hep C.  Guess I should be thankful my hep team seems (to me anyway) to be getting things done, already had all the blood tests, and liver bio, was told I was stage 2-3, and suppose to start treatment Aug.11....I wanted to get thru the summer a bit.

[can-do-man]

zzzztime was kind enough and brought your post to the top under lost post by zzzztime. The answers are for you though some are answering as zzztime. Best of luck to you

[hepChippy]

Finally have stumbled on to a site where I might get some answers.  HCV+, 1b, grade3 stage4, nonresponder after 4 months of interferon, riboviren.  This has all been diagnosised, treated and let loose since last June.  Been free of treatment for 2 months.  Treatment wasn't easy, but continued to work full time 11-7 shift as a nurse.  What I am going thru now is horrible, worse than the treatment itself.  The severe pain in my bones, muscles and joints (and not arthritis type pain) combined with vertigo, tinnitus all taking turns or gaining up on me at one time is nothing short of torture. (And let's not forget the itchy skin.)  Just last week started having numbness in my extremities, some shortness of breath and elevated blood pressure.  The MD's blew it off as part of the Hep C.  A transplant specialist had also reviewed my case, but I  have heard nothing regarding suggestions or recommendation.  I get the feeling that I am to sit back and wait 'til I turn yellow, before anything more can be done. (if anything at all)  Did the treatment exaserbate the virus &/or damage?  I won't believe that this is how I am to feel from now on.  I am only 52 with a nine year old daughter still at home.  I have to work.  I had minimal amount of symptoms prior to a routine checkup that discovered this. Now I am suffering.  What else can be done?

[zzzztime]

I too had to get some help with the house, just twice amonth I have someone do the big jobs.I don't have much help at home. I also tried a online and delivery grocery service. It is a little more expensive but the take coupons, have specials,and discount codes. The produce is the nicest I have ever seen! I do not where the are located. I'm in Wisconsin and know they are in illinois also. www.peapod.com check it out.

[sfbaygirl]

Yes, it is depressing not being able to do what we used to. I quess it is the price we pay to get rid of this disease.  

I have had to get extra help, otherwise I just couldn't do it. Thankfully I have a great housekeeper and family to pitch in too. I  have a big house and had my Dad's memorial here yesterday. I realized after one shopping trip to Costco, I couldn't do it alone as I have done parties in the past. I saved myself a few run-in's with that Mack truck and it turned out beautifully.  

Shot night last night and today there was no way I could clean up the mess.  My wonderful husband had his assistant straighten up. I was stressing about the mess and knew Thursday's are my worst day,  so it was great to have that taken off my plate too.  

Of course we have to pay more for the extra help,  but it is worth the peace of mind and no stress.  Stress is NOT good for the healing process.  Find someone to come over for a few hours a week to take the load off, it is so worth it.

Linda

[sfbaygirl]

Your VL is very high. Although from what I have read it can flucuate.  I could still be a stage 1,  although I did drink after that bx.  You mention your genotype, not your stage That is an important thing to know when deciding to treat or not. I am also a type 1a genotype, the worse to treat.  I started feeling crappy, had skin disorders etc., my insurance was going to only last another year, so I decided it was time to "do it".  I am not sorry.  Hope my pcr at week 12 clears so I can continue tx.

[cat_no]

I like you seen to only have enough energy in the day for work or home. If I go to work when I come home all I want to do is sleep. My house is going to h**l and I hate it.

[cat_no]

I like you haven't started treatment but like you I have symtoms, today I didn't make it to work because the fatigue, joint and muscle pain are so bad. I've been feeling like this for along time that is how I found out I had Hep c.

[zzzztime]

thanks for the info. you answered exactly what i was trying to ask. i know the tx is ruff but it sounds like it may not add to how crappy you already feel its maybe just a different crappy.
1 kind of crappy is better than 2 kinds of crappy lol
anybody else have this kind of experience?

[zzzztime]

I have had my gallbladder out since ive had hep c. never put the 2 together. Also have GERD since gallbladder removed.



on the subjects of gi docs here, over the years i have had 4 endoscopies by 3 very good gi docs for the RUQ pain and not one them related it to the hep c. I finaly just assumed thats what it was cause everything else was ruled out and it hurts where my liver is

[zzzztime]

I did see Dr. Franco at Froedert he was good but not in my insurance. I have had the same pcp for 25 years and now had to switch due to insurance. As for the RA, I was told that the elevated RA(218)and the cryo were from the hepc. I don't have any other autoimune dx.
I read that froedert has a hepc support group. do you know if its active or if there are any others in the area? thanks for your help

[zzzztime]

thanks to all of you for all of this info. im so glad i found this forum, the others were alittle overwhelming. ive known i've had hepatitis(nonA, nonB)since 1985 and was dx with hepc in 92 or whenever the test was available so ive been dealing with it along time. but as i said before mostly in denial. My stats are on the new to forum,need help post from 5/3. I have seen many GI docs in milw. and did not mean to imply there are not docs that treat livers here. we do not have an abundance of docs that specialize in hepatology, we don't even have a listing for that in the phone book. the last 2 types of insurance i had also had no listings for liver doc or hepatologist. i am seeing a "world renown liver specialist" now at St.lukes. he started up a hepatitis clinic, so new its not listed anywhere, i found him on the web. since he is good he is also busy. I had my bx. 4/11 and can't see him till 5/31 for results. I can't get out of work that day so now have to resched. to july. I did come across my results but not from him.

[amommy]

I completely understand what you are saying about feeling better.  I was trying to find a way to convey it in words.  I feel like absolute poop from the tx, but under all that, don't you just KNOW that you are feeling better?  It is a bizarre feeling to say the least!  Glad someone else knows what it is like.  :)

[zzzztime]

I also didn't make it to work today. i've felt pretty bad since Sat. but went to work mon & tue so I have to try to balance what energy I have. It sounds stupid but if I work I don't do laundry or dishes or anything else so sometimes I have to take off just to try and get some things done. I come home from work for lunch to make doc appts. but end up taking a nap instead. thats why I'm thinking about starting tx. I don't feel like this all the time but it does seem like its more often so i figure if I feel bad anyway, why not start tx

[zzzztime]

I will contact you. I would be interested in trying to do somthing in the area. I just don't know how much i can commit but we will talk nice to meet you


has any body spent much time at www.beincharge.com website.I just found it so not familiar with it.

[sfbaygirl]

It wasn't until after I started tx that a few sides I had before tx
began to improve ie;' lichen plantus, skin stuff, much more fatigue all the time.  Right before I stated tx, I had an endoscopy that showed a swollen bile duct and blockage.  I had upper right quadrant pain until after the procedure.  Now no URQ pain,  and some days my sx are not bad.  Some days and some shots are totally different.  If you have sx already, as I did, I would go for the tx, depending on your biopsy and genotype.  Sounds like you have nothing to lose......well that can change daily with the sx.  Shot # 3 tonight,  hoping for a good week. Praying to the HEP gods for  no sx this week!  It's too nice out to lay under 6 blankets and feel bad.  

I have NOT had a bx for 4 years when I was a stage 1.  Not sure what I am now,  but the sx during this time sure increased.  I need to ask my DR. about a BX and a 4 week PRC.

[zzzztime]

im geno type 1a and viral load 27,000,000. would you still tx?

[azgrl]

Good morning.  I know you already posted this information but again I can't find it.  Did you test at 4 weeks your first go round?  IF so were you clear?  Also what test did they use?

I try and keep up on everyone and I of course have been trying to keep up with your progress but it has been a bit busy these days and keeping my eyes open is difficult at the end of the day.  : )

deb in az

[azgrl]

I had the surgery prior to tx.  that was one of the reasons for the delays.

However my platelets have been an issue prior to tx.  They were really high...out of range high.  They thought tx would bring them down.  It did some but since 2 weeks ago they were going back up.  I'm in the normal range but starting to climb.

Biggest concern right now is the wbc and absolute neuts.  I dropped a lot by week 4 and go back in tomorrow for another cbc.  

I also got a copy of my pcr which no one at the office called me...I am und at week 4 however I am 3a so I kind of expected that.  it's relapse that has me biting my nails.

How have you been holding up?  When do you think you will try again?  Will you be going 48 when you tx again?  I think I've read that somewhere but my brain has been left somewhere between my home and my office on highway 101 probably squished by some 18 wheeler hauling....I don't know where I was going with that.  : )

deb in az

[FlGuy]

deb, Are they keeping a real close eye on your platelets? Are they fairly stable?  I can see where the doc's concern is.

[azgrl]

I also had a lot of those same symptoms which what sent me to the dr in the first place.  That is also how I found out I had hep c. I had a big surprise that day and it wasn't the good kind!!!

I didn't have gallstones but had a gallbladder disease (biliary diskinesea) that has similar symptoms as gallstones.  I had to have my gallbladder out before tx.  Most of my symptoms went away from the gallbladder coming out.  The fatigue remained and has remained throughout tx as expected however the ruq pain has gone away.

You may want to talk with the doc about the gallbladder issues prior to tx.  This tx can cause already existing problems to be worse.  My doc didn't want to have me start tx and then suddenly have to go into surgery which can be dangerous on tx.  It's doable but better to not have to put your body through a traumatic surgery when on these drugs.

Keep us posted on what happens.  

deb in az

[sunspot]

I had fairly bad RUQ pain before I was diagnosed. One month after starting tx, it went away. I also had fatigue that also went away.
I hope this helps you a bit.

Dana

[FlGuy]

There's a lot you're looking to find out, and that's good. I'll take a shot at a small piece. First it hard imagine that there are few hepatologists in Milwaukee. I spent a week there one night and I got the impression that livers there probably need a lot of attention.  Before I started tx a year ago I felt kind of run down. Not run down like a bad week of work, but a deeper overall tiredness, fatigue and draining. It's had to tell what the source really is; age (55), hep itself, damage to the liver which causes other stuff. It kind of didn't matter, I needed to tx because I'd had it 'bout 32 years and it just needed to go away. Yeah, a lot of people feel crappy on tx, it's part of the admission fee. But you need to decide what your endpoint is. If you 'need' to get rid of it then jumping in with an attitude is needed. If you are in such a situation you can wait for the next set of drugs that are on a highway somewhere now then that could be a plan.  Learn more here and elsewhere then take a look at what you need to do about it.

[Rogirl]

I thought it was just me--or I thought maybe I was experiencing "sympathy pains" because I haven't started tx yet but I was feeling some of the sides.  Mostly I have the fatigue which I have had for some time--I always figured it was because I don't exercise--and that could be the reason.  I have a steady RUQ pain--could be my fatty liver or gallstones--which I didn't know I had either until I had the ultrasound and bx.
I was just dx'ed earlier this year (in March) and I can't say I was totally symptom free when I went to my doc--but no way did I think I had hcv!