Post treatment

Hepatitis C
#1

Looking for anyone who suffers from connective tissue disorders - as in weak tendons, ligamaments, muscles, etc. I believe it is due to the extreme dehydration - in spite of the 110 oz of water I drank every day - all my tissues were so starved for moisture - this is one of the side effects they don’t even mention? I have had my wrists go out, my hips, my ankles, and now one of my knees. I think I can build these tissues up again, if I can get to the point where they will let me use them without the slightest little thing causing injury. They are extremely delicate.

Has anyone else experienced this?

#2

Yes, after treatment , they are calling it fibromyalgia.I Never had this problem before treatment! I get these flare ups, just shoot me I say. Dr’s will not do anything for me since treatment!!! thay friken let me suffer. brain fog, painful connective tissue disesase, depression.

#3

I too have brain fog. In the process of trying to figure this out - they have found a brain tumor - not a big one, not malignant - but just the same. I am wondering how much of the encephalitis caused by the liver disease is really causing the symptoms of dizziness, nausea, mental confusion, and headaches. Anyone else seeing these problems?

I apologize for not replying sooner - my other conditions, such as empathy, depression, etc. keep me from getting on the computer often… sound familiar anyone.

I am so damn sick of being sick - I agree - just shoot me - they shoot horses don’t they? Just kidding - but it is a bit hard isn’t it.

I had already been diagnosed with Fibromyalgia - which is different than the connective tissue problems. Since I wrote the original post I had 3 months of physical therapy which did wonders. The fibromyalgia, I believe is a auto-immune disease - which could have prevented us from taking the therapy if they had known - so I guess it is just as well - but it does make it worse - the therapy that is.

#4

I had the same symptoms when i did my first round of treatment. I wasn’t able to complete treatment due to body rejection , but the side effects symptoms did dissapate after awhile. This second time around i have the same thing only just lately I am developing sever muscle pain in my right thigh. I figured it wasjust from over taxing my body in the yard. But I do that all the time and never did i get to the point where i couldn’t walk or stand on my leg. I will be sure to inquire into this with either my doctor by e-mail or the hotline number we are given with the initial kit given . let me know how it goes for you as i will do the same here.

#5

in all the literature i’ve read mentions dehydration as a side effect and the need to drink enough fluids. my doctors, nurses and med staff have all brought up the importance of drinking lots of fluids. i’m 1/2 way thru the TX and i still feel dehydrated most of the the time no matter how much i water drink.

#6

I stay thirsty all the time I think part of having hepc period. much cont’d success with treatment!

#7

459
thanks. i plan on it.
KM

#8

That is where going to physicial therapy helps. iand in-corporating some sort of physical regimmmmmmmmment to keep musdcles and tendons strong .some sort of excercise program to keep these all strong and healthy

#9

My 2nd round of tx to start soon and my cognitive imparment might go away, with more treatment it could get lots worse and never get better, or it might. I had also sjogrens develope the drying out of the insides. Profound dehydration they called it. I take a med for it now.
I am just afraid what it will do to me the 2nd time around. Am I going to be worse off that before treatment. do I want to be older and have to do treatment? I want to clear myself but I worry about getting worse side effects. I am unable to decide…

#10

River:

in the end it’s up to you. you sound confused and scared. i wish someone could just tell you the right answer.
it was a very hard decision for me and i think that’s true for most people faced with the question.
i hope you can find some peace of mind so you can make the right decision for yourself.

peace

KM

#11

Thanks KM
it’s messages like yours that really keep the faith going that I can and will clear this dragon from my body. Thank you so much for the good support. You are wonderful! I am going to try tx one more time. I’ve got good insurance and won’t have much longer
so the present offers the best hope and healthiest chance for clearing the virus.
YEAH! keep me in your thoughts…

#12

alot of people do clear the virus. I pray for you n all that are going thru this, it is not easy but can be done! you will beat this nasty dragon! Treatment is not forever but HepC is without it! for now it’s the only option!!

#13

I’m currently still in tx and I have the worst muscle and bone paing also my joints. My wrist and ankles hurt awful. My hep Dr. tells me to just take ibprofine (sp) every couple of hours. It doesn’t help. I quess there isn’t much you can do but suffer. The Dr.s really don’t have a clear answer.

#14

All this thirst could be due to a side effect of treatment which is a disease in itself, autoimmune disorder I believe, called Sjogrens
Talk to your Doctor. It can get so bad you can get choked eating and not being able to get enough saliva produced to swallow. A med called Evoxac (pronounced e-vo-zac) It is unbelievable how much better you feel. Your skin can be hydrated but your intestines and such are profoundly dehydrated causing thirst without relief.
Just a suggestion of course… ~smile~

#15

littleb:
have you tried the herbal approach for the pain management?

KM

#16

river
no worries mate.
i’m with ya thru this thing…

peace
KM

#17

I have since found out that if you sip yor water throughout the day —and night… it is absorbed better. I got to the point where I could just open up my throat, throw my head back and down a whole 16 oz bottle of water in two breaths - also after awhile I could breathe and drink at the same time - like when we are babies…I’m sure the 160+ oz of water I drank in each 24 hour period helped - but sure wish someone would have suggested that medicine River - you really hit the nail on the head about the internal dehydration - it was amazing to watch the dehydration of my tissues - especially muscles - and PT really does help - but I am believing it leaves a bit of a chronic condition such as Fibromyalgia. Be careful folks as many docs use that term to fit anything they can’t figure out. As for pain - my docs and the U of W were really responsible to treating the pain with opiates that incidentally do any harm to the liver, unless they are combined with Tylenol - avoid any pain meds ending in “cet.” You do not need to suffer any more than necessary - so let them know you are miserable when you are and they should help you.

It sure is good to talk to you all about this stuff - cuz you’re always wondering about stuff the docs and PA’s don’t get - that only we understand as we have all been through the same thing.

Okay - thanks for the listen - and the good reads. I’ll try to be a better friend to you all - as I continue to get more and more energy - two years post treatment this past May - and feeling stronger each day.

In love and light,

Patsy

#18

Just re-read my post - meant to say opiates do no harm - and also meant to add that I was unable to swallow food - and actually had a hole in my tongue - I used to soak my tongue in water - used some mouth wash that increased the moisture rention while coating my mouth with moisture - but still and all you could - although I never tried - but I’m sure you could have written on my tongue with a felt pen…That is when they stopped the treatment - at 45 out of 48 weeks - when my dehydration got so bad… but heh - I’m virus clear - actually haven’t had my annual test yet this year - a little behind - but I was virus clear from the first test into treatment at 3 weeks - and I just know I still am. I am very lucky - and you can be too!!!

#19

Thanks Patricia j

#20

Thanks to all who replied to my inquires. I still think if the docs just hooked us up to IV during monthly visits and hydrated us it would do a lot of good - also the PT during treatment - as part of the treatment plan - although I’m not sure how many appts. I would have made it too during the last 6 months or so. To all who have to repeat treatment, my heart goes out to you. Didn’t know there was a medication for dehydration of tissues - did youget this from you HCV doc - or Primary care or what? I am still having problems and although I am happy to report that my recent viral load check came back undetectable - yahoo! - I am very lucky and blessed 2 years post treatment - I feel as bad as I did before the treatment - ack!!!

River - not sure how to use this place yet - don’t spend enough time on line - but sending a hug back to you!!

I think we are the ones who, by giving the medical community feedback on side effect, both during treatment and ongoing or lasting - can’t help them continue to provide better treatment. Right?

Love and light to all! And hang in there as long as you can and if you cannot do it - don’t feel guility - many, many people do not make it all the way through. If treatment is in your future, but not totally necessary at this point, I advise to find a good Naturopath - some specialize in both HIV and HCV - and try the nutritional/supplement approach for as long as you can. Even if you eventually go into conventional chemotherapy - as I did after two years - you may have better results for having lowered the virus count - I lowered mine from 15 million to 800 thousand over two years with this approach - and then did my chemo.

Do people sometimes look at you weird when you say chemotherapy for HCV - and then they say didn’t know they had that. Don’t you get tired of people always assuming you have cancer when you mention chemo - then when you tell them its for HCV - do you sometimes feel like they think this is less vital - although not less hard?