hep c symptoms and free to post any thing

[giddyup]

Greetings fellow Heppers. Im a 40 year old 1a.I stopped tx after 16 weeks in December do to low blood counts.I'm interested in hep c symtoms that occur when not on tx.In my case I have aches in my hips  and inner thigh and in my knees.Sometimes in my hand joints. I also get very fatigued.Im particularly concerned about the the joint aches. are these leg aches caused by hep and will they go awy if my next tx works? Its really becoming a handicap. My doctor says it could be cryoglocemea(spelling?) wich can be caused by hep c.Does anyone else get these aches.All responses are much appreciated. Giddy

[SnoWav]

I have C@B did the 48 weeks cleared at 12 but relasped. Before TX I had lots of pain and numbness in left arm and very painfull to walk.withen 2 weeks of starting TX felt much better. Now a year and a half post TX only mild joint pain. I also have Cryo and have read that asperthame (sugar substiute helps) http://www.dynamics.org/cryo/ASPARTAME/  I don't plan on doing TX again until the new drugs. stage 1 grade 2 (dropped a point on each during TX)  For me TX was a good thing even tho I diden't clear,but I woulden't recomend it if your liver is in good shape  and you are feeling good now.
later

[OlongapoDad]

Even though I have or know of proof that would show service connection, I'm constantly being misled by the officials of the VA or enen the org.(DAV Chicago branch) that's supposed to be helping us, it would seem I will DIE from my illness without being compensated or TREATED!!! I too have jetgun experience, with problems arising immediately afterwards, also the VAMC finally let me know that I had Hep C in 1997, to this date I have received treatment None(0), they say they are still running tests. What test are they running??? Trying to see how long I can survive without treatment, or give me other drugs,that have no relationship with my problem. What do we have to do to get a fair break in this situation? The records that show that I had Dental Surgery,Have been excluded from ALL medical records that have been requested to support my claim, just lately was I informed those records have to be requested, on a special form,form 180,and sumitted to the DoD,not the VA. I thought there was a law, or order for the VA to assist us in obtaining the necessary records to help US in resolving our claims, was it repealed? or changed? Believe me after 30+ years, I'm tired, not enough to give up!, but my expectations are low, the present administration, the powers that are and to be, don't give a **** about you after they gotten what they need, if you're lucky enough to survive your war time experience, then pray that you don't come home to an anti-Veteran parade as we did...A vietnam veteran

[honey1616]

Great to see you are a svr after 3 months.  What genotype were you and did you clear at 3 months tx?

[Minttwist]

Don't give up!  My husband too retired Army after 22 years.  He's deceased now, but give the interferon another chance.  They have something that will combat the anemia.  I bet the VA will treat you....I guess it's depending on your income level, but you guys have TRICARE at the military hospitals which will get you in the front of the line when it come to your health.  You've got to try it at least one more time.

Val, HEPC Survivor (3 months now and hopefully forever).

[cuteus]

I am also 52,f and on the pegasys/copegus combo. did not clear until sometime bt 12 and 24 wk.  On 39/48, geno 1.
I hear the sides from this combo don't hit as hard.
I did become anemic which is managed by Procrit.  Sides have been unpredictable as to severity and time of occurence.
My PA claims some have 0 sides. I have managed to work all these weeks, though I feel as if I want to quit  some mornings.  I know the feeling passes so I take it one day at a time.
SVR is my goal. Must keep that in mind.
If low bc is your worst, insist on management with meds like procrit and neupogen rather than discontinuance, the older we get the less effective the tx.  I have no idea what the svr stats are for hispanics, I don't think they ever make that differentiation in any study.  data is so limited on hcv.  Good luck in your next attempt if that is what you decide.

[A-Dam man]

From my last biopsy ( 4 years ago) there was evidence of of some form of mild liver damage.
I don't think I've refceived as much information as I deserve
in feedback from the doctor. It is my own fault,seems like if
you don't ask they say very little.
when I tried Interferon the biggest reaction was my becoming
anemic,I guess I'm the wrong geno type?
I went beck to seek treatment again or at least options,last fall, and they took blood and I also schedule a colon exam.
This all is on the back burner now as I recover from a severely
dislocated shoulder accident I suffered late last year.
I lead pretty active life style running and road biking.
I have some skin issues,which I think are related to age.
Anyway I don't see much promise in present treatment for Ppeople of color, and the side affects worry me.
My quality of life is pretty good, when compared to most others
what the future will be, is in gods hand

[cuteus]

and the ones who insist is an std and we should use condoms...
it doesn't matter where and how(to those already infected) we got it, what matters is:  how to live a hcv symptom free life., whether it is by eliminating the virus or treating the symptoms effectively.
drs see us for so many signs that are not "classical" of a known illness, but they see no correlation to this chronic infection.
yes, i engaged in a short term risky behavior, but like you said, that mass vaccination in my chidhood school...the dental school...the colonoscopy...who really knows?

What is the liver damage in your case?

[A-Dam man]

I submited to 2  liver bio and 1 treatment program since being diagnosed W/HEP-C, 5 years ago. I was first alerted when I donated blood way back in 1990, in 1993 I retired from the U.S. ARMY after 26 years active and reserve duties.
My HMO is at Thomas Jefferson Hospital in Philly,and I am not really happy with the treatment and attitudes of the doctors who want to tell you that you most likely got your diease from drug
expiermentation or tatoos. I am 52 yrs. old and have been around the block,and I've seen the syringes that used to to be sterilized and reused and the old bloody pneumatic innoculation
needle gun taht was used on large groups of troops, don't forget
the bloody dentist,I am fed up with blame the victim doctors
I have met.
I have no Idea on where I got my exposure.
But I do know if you don't give blood and don't have full physicals w/ blood testing for wellness,would you really know for sure after you came down with  advanced liver diease symptoms and you were my age or older where and when you had contacted this terrible disease, given the ignorance of some blood borne diease types and sanitary practices of the past?
Stop trying to make me believe it happen while I was sowing wild OATS.
Signed
  Waitng for a Break thru cure for any Geno TYPE
  

  

[cindyazure]

My kit contained alot of literature, an a.m/p.m. 7 day pill box, water bottle, pregnancy test, cold pack, cold pack for eyes, travel case for vials, syringe disposal thing, journal, small case containing alcohol wipes, advil, tylenol, and my first kit, it all came in a nice travel bag which I see they have now chinced out to a cardboard box.  Oh, well all the stuff was really helpful and I used it all. 1-877-PEGASYS and they are nice.  If you get meds from them they go directly to your Dr. from my experience.  Good luck to you.

[litecloud]

Hey there, I have a question on the KIT from Roche...
Do the send free things to Hep c patients or meds, that would be nice, or is it just reading material... just a ?
In other words what the heck is a kit from ROCHE ?

[catherine194]

Thank you all for the advice and I went to the website about the trial drugs. I called my doctor because I live in a city where research is being done but once again he said that they are given with the Peg and Co-Peg. It is called thysamine. I think I spelled it right. He told me that I am the 11th patient of his to react and #1 in how I reacted. He said nobody had ever gone nose to nose with him and told him his ass was getting ready to be kicked into the middle of next week. So it is called riba rage. That is what I felt, pure rage. I don't want to ever feel like that again.

[cuteus]

CC; better double check with your dr as to what he wants you to do now. it is the safest and they'll document your last tx week oficially,   YES! gl on your next count. BE SVR AND PROSPER or is it live long...just as good!


on the subject of depression, did or is anyone required to do a beck survey at every visit?  I go to a major hosp in NY who is part of ongoing trials (i'm not part of any ) and they have an electronic device with the beck's survey.  some questions are dumb in my opinion, but they use it to gauge drastic emotional changes.  It is this info i think might  be used in quality of life studies now that I think about it.
  I"m still pouting I never got a KIT from Roche...

[catherine194]

I am a ICU/Med-Surg nurse and I have always prefered patient care. I was on Lithium but my levels were too high and Zprexia put me in heart failure. I am now on Trileptal. My dr. did put me on procrit but I did not respond. I asked about being put back on Peg and Co-Peg but he stated the risks were too high and Roche did not reccomend it. My doctor is the 2nd top doctor in the city I live and is head of the gastroenteroloy dept. at the med school. I am on the liver transplant list but will have to be on my death bed to get one. Thank you all for reading my post. I thought some of these problems were in my head.

[CCgirl]

I am doing my last shot on Saturday, a couple of questions? first am I supposed to keep taking the Riba? I was pretty sure they told me you keep taking that you one week after, secondly can anyone tell me what to expect after stopping tx? How soon before I start to feel better. I feel like I have been living the movie groundhog  day for the last six months
TIA

[Indiana]

Depression and suicidal tendencies are a documented side effect of the tx(treatment). So much so that many doctors require a psych evaluation before starting tx. Many folks are put on AD's just as a precaution before starting. Too many in my opinion, but that is a seperate issue.
Funny that this question should come up today. Just today I heard Paul Harvey on the radio saying that the FDA here is now gonna require that the makers of the AD drugs put a warning in their literature stating that the AD's themselves can cause suicidal tendencies! I thought that was pretty startiling since that is why some folks take them.
I have seen some really depressed people come through here. Some are taken off of tx for that reason. Also there are LOTS of different AD's. Some folks have to try several different ones before they find the one that works. It can take months to find the right one and the right doses.
Riba Rage is something many of us fight too. That is depression related in that it comes from the chemical imbalance in our brains caused by the Ribavirin. It is an amazing thing to go through for the first time. We can go from calm and tired to a Raging Maniac in just a few seconds. You know its happening but are powerless to stop it once it starts. It is short lived but it can be scarey to go through. It's usually over some really trivial thing too. Just like a light switch.....BAM.
So, you are not alone with the crazy thoughts and anger on tx. It's good that you have some psych docs though if you actually thought about suicide or murder. I never got THAT mad. I did kill several phones and cut down a tree that got "in my way", but I never came close to hurtin anyone else. I sure would have liked to see those Flying Turkeys though. I did imagine that a Badger and a Woodpecker here were plotting against me though. I spent many happy hours planning thei demise and avoiding their plots. I used to post about them a LOT.
Here is a good link to a site that lists clinical trials that are comming up...... http://www.centerwatch.com/patient/studies/area7.html
Took your guns away eh? Get yourself a rubber-tipped dart gun and start shootin your hubbies picture on the wall. Its fun to do and you will laugh every time you see it with all those darts stuck on his face.  Hahahahahahahaha  
Taks care.............

[britpeter]

Please see my comment on the mouth sores thread

[cindyazure]

Since I'm now going past 48 weeks (this week would have been my last, sniff) I called and they sent me another starter kit since most of the stuff is gone.  Call 'em again. Mine came in a couple days.

[cuteus]

giddy check the link beathepc posted above.  the pts did not have detectable cryoglobulins, so who knows what is really at work here.   I am so glad for that info, I was tired of the rheumatologists tellling me I had no "classical" arthritis, I know I'm special but...lol...now I know it was not in my head.

catherine,  I am so sorry tx was so hard on you.  I found my dark moods and sadness enhanced during my anemia.  After tx with Procrit, life is again manageable.  Too bad your dr did not treat your anemia promptly, some drs prefer to stop tx instead.

good luck in your new try. I am managing w/o ads, with the help of this forum as support.  some severe cases will need stronger intervention.  engage the help of your relatives in keeping an eye on your behavior, since you might not notice.
best of luck

[giddyup]

Thank you for your responses regarding joint pain.It's something I'm trying to learn how to deal with. Information about hep c can be so scant and vague.Yes it is cryoglobulinemia that my doctor suspects, but my tests have not come up positive for it.The test is new and unreliable. It's good to know that the hep c might very well be the problem.Hopefully my next round of tx will knock out the virus and the aches will receed.It's disheartening not to be able to do the things I'm used to doing.I actually had a dream were I couldn't escape from somewhere because my legs were lame.Whatever it is I'll have to deal with it. As we all must.
                                Good health to all of you,
                                          
                                                 Giddy

[catherine194]

I am new here and also have these aches. I have grade 2 stage 4 genotype 1 and could only tolerate 7 weeks of Peg and copeg. My blood count (Hct. 15.3) and had to be transfused. I devolped hepatic encephalology, portal hypertension, meningitis,severe anemia, and suffered from sleep depravation. It was a living nightmare. I am now under psychiatric care because I came within a ace of killing my doctor. I have been accepted for a second trial drug, the first one was yanked, that is non-interferron and ribaflavin. My doctor said I am their dream patient. My care fell through the cracks and everyone assumed I could care for myself since I am a 31 yr. veteran nurse. I found this site by accidnet and I am glad. I am worried I will be turned into the psychotic witch from hell again. Did anyone else here suffer the homicidial and suicidal tendencies? My son took my guns because I detest my husband and he was afraid I would kill him. I am asking here because I can't post a question. Also, in searching the archives I can't find anything about trial drugs. I took care of everybody except myself where there is such a severe nursing shortage and I am ashamed to admit but my nursing care was a disgrace when I was in the hospital and once again it was assumed I could care for myself despite my seeing flying turkeys in the room playing Dixie. The cartoon channel sent me an e-mail stating that on Thanksgiving they did run a cartoon with turkeys playing Dixie but could not confirm they were flying around in my room. That did make me smile. Thank you for reading my post.

[cuteus]

I took sam e for a  while, your body gets used to it.  There is no data yet that it actually helps depression, but it could be that they tried it on severely depressed individuals.  St. johns wort is been tried (clinicaltrials.com) in some studies and is promising in mild, maybe some moderate depression.  the key is that severely depressed people need more serious intervention. It is worth a try in my opinion.

[litecloud]

I would like to use it pre and during. If am aloud. I can get it free from my work so thats another perk. Thanks Chevy... Hey did you read what I wrote you to clarafy( I dont think that is spelled write, but anyway), the animals and Hep c?
Am glad I bring a little laughter, it is what keeps us young. Laughter is the best medicine and you guys can have me cracking up so much I get tears in my eyes, like on friday when happyhepper wanted to take my BX for me, then she informed me on how she had to go to the LOO,whole she had to lay there for 4 hrs Indiana took the meaning of the Loo to another extreme. Funny !!! Stuff!! We need that laughter,we need each other.

[litecloud]

What about Sam-e. Have you tried it? Am thinking of asking my Dr if it is ok. I have also found and I have tried magnets. You don't have to buy an expencive bracelet or go out and buy a macnetic matress for 500.00. Just those little old magnets on the refrigerator, the kind your car insurance sends you every year. I put them on my shoulders and achy places and it works. I know it sounds strange but if it works, am there. It won't cure Hep C hahaha, if it did we would all be wearing magnets and we would all be attracted to each other hahaha. That would be a sight!!

[bolger]

you know, i didn't have symptoms till after i was dx from a random blood test for a physical 8 yrs ago.
i'd 'cleaned up my act' a few yrs before this and felt fine.
i have the slightest arthritis in the left knee from 20 yrs of running.

after diag - i got that same headache as you. must be the hep c, or thinkin about it
i get a flu - once each 18 mos - must be the hep c
my knee - must be the hep c
my leg itches - the hep c

it's important to be diagnosed but the mental trip.
i guess protecting myself from others makes it worth knowing.