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New and alarming symptoms

Hello, my name is Jo. I am a 50 year old woman with HepC. I have had the virus for about 25 years and my genotype is 1. Two biopsies in the past 5 years have shown minimal scarring and my ALT levels have been only slightly elevated during all this time so my liver seems to be doing fairly well. My viral load has dropped over the last 5 years from 1,500,0000 to 940,000. Over the last few years though I have developed new and alarming symptoms: debilitating fatigue, muscle weakness, severe headaches, mouth sores, severe digestive problems and bloating, equilibrium problems and word-finding difficulty. I do have periods when I feel good but sooner or later the symptoms always resurface. My GI says that he doesn
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87972 tn?1322661239
I’m sorry to hear you’re having so many issues post treatment. I also did a couple of courses of IFN therapy over four years, but have no lasting issues. Maybe someone else will chime in later. If you repost your question by going to the top of the page and clicking on the ‘post question’ button, it will open a new post and you’ll get more responses.

Good luck—

Bill
f
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Avatar universal
I have been undected for hep c for at least 5 years now.  I received treatment on and off for about 3 - 4 years, it was horrible.  My last biopsy came back normal, the other 2 were very bad, almost transplant.  Since I was in my teens I have always had bad leg pains (on and off), attributed to growing pains.  Then I gave birth to my first child in 1986, after that it was down hill.  I think I was given a blood transfusion.  I had some kind of attacks for years, on and off again, until being tested in late 1992 with hep c. I am still having these horrible attacks(once again on and off), ,I still get tested, and It's still undectable.  I have been to so many Doctors for so many test, at one point I tested positive for multiple sclerorsis (MRI of brain and spinal tap) and now they find nothing. What they have found is my whole skeleton has degeneratvie ostearthritis,  lower lumber disk compression, cervicl disk disease, carpal tunnel and nerve damage.My Rheumatologist says its either from the hep c or the hep c medicine.  My immune system has been comprimised, my ANA titers are very  high and he refuses to test me for any other disease.  From what I have read I could have a number of diseases, I want to know for sure if he is right, because my other Doctors son't seem to agree with him.  Has anyone experienced these effects after being undected for hep c.
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Avatar universal
A New European Study:
EASL: Independent Study Evaluates Virologic Response of Two Approved Forms of Pegylated Interferon In Combination with Ribavirin
BERLIN, GERMANY -- April 19, 2004 -- Schering-Plough Europe reported on an independent investigator-initiated study1 evaluating the two approved forms of pegylated interferon therapy for chronic hepatitis C virus (HCV) infection: PegIntron
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Avatar universal
My suggestion would be to get a second opinion from a hepatologist. They do take some time to get in to see but this is their specific specialty. LL
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Avatar universal
It is hard to believe this guy is a hepc specialist and hasn't heard of extra hepatic manifestations of the virus. This include arthritis like symptoms, high rheumatoid factor, among other things.  I was to see a couple of rheumatologists, neurologists, and GIs before finally getting the dx.  I have heard of depression as a common occurrence, also.   Probably because of the constant crappy, achy feeling you are having without getting properly diagnosed and treated.  Perhaps is time to consider erradicating this virus once and for all.  I am 52, 1a, mild damage, and on my 44 week of Pegasys/copegus.  Not an easy Tx, but nothing in life is.  I have managed to continue "working" all this time, and I am considering extending tx to ensure a higher % of cure.  A second opinion might not be a bad idea in your case.
be well
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Avatar universal
Hi ...so the docs think it's all in your head or It might be hep c, well since none of them have had HCV, tell um to go jump in the lake. I have experienced what you have described except balance problems or mouth sores and currently I have the itch, but I have never had tx! I experience a lot of the sides but it's way less than what I've seen people post about on here in treatment. My theory is that since we have natural occuring interferon present in our bodies reacting to the virus that it's possible to have symptoms that are similar with interferon therapy. My viral load is 250,000 down from 1,000,000 a few years ago, I'm geno 1a 23 years and I may have a large amount of my own interferon doing what it can. There is no test available to measure the amount of natural occuring interferon and I'm sure it varies and is higher in some people. It could be why some people clear on tx and some don't, no clue, but I'm certainly not saying tx isn't the way to go as I've seen so many people on here clear from doing treatment, and you may too, if you try. I can't explain my declining viral load other than what I've said so far and maybe pegasys would be the boost my immune system needs to finish it off. Above all you know your body and don't let the docs get you down and find one that has treated HCV a lot and has an open mind. Good luck and stay strong!......laters
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Avatar universal
I recently got off treatment of 48 weeks of interfuroen/ribavarin treatment. I have genotype 3 and required 48 treatments.  During and after treatment I have been experiencing trouble speaking, remembering things, so far as even remembering how to spell words.  I am now starting to experience fatigue, joint pain and depression. I am 53 years of age and this could also be something to do with hormones. I have gone back to the doctor and now am waiting for blood test results to come back as to make sure that I am not suffering a relapse. In different articles of symptons of Hep C I was never made aware that you can have trouble with speech, therefore I never mentioned it to my doctor.
If anyone else has experienced please let me know. Also if you have had a relapse of the virus, can you tell me if they where the same or went unnoticed.  Thanks
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Avatar universal
i have not yet seen anyone here post as bad of side effects with tx as the pain i saw my mom die of from advanced liver disease...cirrhosis and cancer of the liver...that was horrible...i'll try to describe it...THIS IS NOT for the weak in heart...

...she had all sorts of complications due to failing liver for years before this...lost her hair,teeth,had cellulitus (puss ozzing from her swollen red legs...only no one knew that they were caused from the progression of liver disease...the drs. didn't catch that, until she turned dark yellow...after this it was too late for her...

...day after day,i saw her laying there in massive pain. she thought her back was broken,we all did...but,it wasn't...she couldn't lie flat because of the pain,she couldn't even let them do xrays,or a biopsy,or a cat scan...because she would have to lay down. she had to sleep sitting up for so long...she began going mentally ill from toxins in her system...i didn't understand what she was talking about and it was my last days with her...she didn't know she wasn't making any sence...unable to bathe except for "nurse bathes"in bed...she couldn't eat...she had a bed soar the size of a baseball on her butt,that they couldn't fix because the pain to turn her was too great for her...
bloated legs,hands,arms,stomach,face...the nurses couldn't help her...pain meds did not work,and she had air forced down her wind pipe to help her with oxigen...feeding tubes and i.v. for meds...meds that came too late... she couldn't talk and at that point was still conscious,...then the kidneys failed,we had to decide whether or not to keep her on meds...they told us she would die anyway...then she went unconsious,eventually,finally, and then to heaven...

sorry for the sad post but,these sides we are going through from the tx meds are BABY STUFF compared with what my mom went through...what our family went through at her side...at age 66. no one else on her side of the family died that young...they all lived to thier 80's or 90's...

I pray none of us here will ever have to face a death like that...
so take your meds...keep your eyes fixed on the goal and suck it up...praise and thank God if you truly are amoung those who can wait...but, be sure and keep watch...and pray for those who can not treat or don't clear. i am deeply sorry for this post...but, truth is best...and knowledge is our friend...it helps us make acurate decsions...

someone will balance this out and tell us that we will not die of this...the great news is most of us won't have to...

SO IF YOU "FEEL" LIKE IT TAKE THOSE MEDS!!!!!!!
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Avatar universal
Hi choach,
I'm a 58 yrs old male & had HCV-2b, for at least 25 yrs.
I too have finished tx PEG/Riba 26/24 (+2 for GOOD LUCK) recently. I cleared virus after 4 weeks, stayed CLEAN at 3 months. Next week, I'm doing the 7 mo. tests.
Your symptoms sound very familiar to me. I had similar symptoms both prior Tx & during Tx a different batch of side effects & still the residual Sx are present.
It's a rough road no matter how you slice it. However, Tx NOW may postpone what we may have to do in the FUTURE when being OLDER & LESS able to deal with Sx.
No easy solutions, no procedure manuals to follow. Stay informed by reading a lot & ask a lot of questions. Use your FAMILY as a BACKBONE should you decide to be treated.  
When you're ready, both physically & mentally OPT for Tx:
Good Luck
PS-An informative link attached below.
http://www.docguide.com/news/content.nsf/news/8525697700573E1885256E7B00563206?OpenDocument&id=7F4D5D923717CCD885256CD90024FEB2&c=Hepatitis%20C&count=10
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Avatar universal
24 to 48 weeks is just a temporary state. Death is very permanent. I believe if something is broke fix it. That is the way I saw the treatment, just fix me and hopefully it will work.
I lost my hair, but insurance paid for a wig, plus it grows back. Yeah the side effects stick, I also had to do a shot of Procrit for 30 weeks besides my other shot. But if you can be around earth alittle while longer it is all worth it in the long run. I feel God is giving us a second chance and not it is up to us if we want to be inconvienced for awhile, but remember it is not forever.
I am very sorry about your mom, I lost both my parents to cancer. Any disease that involves suffering sucks.
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Avatar universal
I am so sorry for your loss:(
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Avatar universal
I'm a 1b and at 17 weeks, and Now undetectable........
Systems sound very familar to HepC........get another opinion...........Deb
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Avatar universal
Scott and I had a little discussion when he posted this study last week.
It is basically one drug co. trying to gain back the market for hcv tx.
If Pegasys was also administered according to wt. would it have been more effective than pegintron?  Of course they won't try that theory, but Roche might.
I know some drs. are, like Dr. Cecil, and he has had better results with Pegasys.  War of the drug lords.
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Avatar universal
I am so sorry you had to go through that with your mom.  I know exactly what you are describing as my brother experienced the same pain and organ failure.  His liver failed before his kidneys, and then when his kidneys failed he had a heart attack and died.  Even with the amount of morphine they were giving him, he was still not comfortable.  I certainly do pray that everybody clears and does all that they can do to stay the course of this treatment.  People DO DIE from this disease everyday as Revenire has pointed out many, many times.

Rev, you're like a shephard herding his flock to safety.  Thank you.
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Avatar universal
Your present symptoms ARE alarming.  And much worse than any I experienced on tx and I'm ESLD-end stage liver disease.  I've now traced my 1st infection to 1967, w/re-infections in '79 and poss '85.  I went to all those specialists-incl having brain scans,etc, b/no one checked for hep c until 2wks after my liver failed.  Any major disease will cause depression.  In fact I've read that anyone in analysis for depression for more thean 2 yrs should be checked for depression. I was in it for 6yrs.

You should focus on whether you want to continue to have these complications, which will only worsen, or try to eliminate the underlying cause-hep c.  W/extended tx, even 1's can have a good chance of cl'ing.  I cl'ed in 18 Days!  And started feeling better, even w/mild sides.  Its all a quality of life issue.  If you are as uncomfortable as you indicate, what do you have to loose.  If tx isn't working,  you can always quit.
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Avatar universal
i too was terrified of treatment.  im 51 and finished in aug.  i cleared the virus.  it is the hardest thing ive ever done but putting it off is something i regret.  i tried every alternative there was.   i was very symptomatic as the virus can cause your immune system to go wacky which causes all the alarming symptoms.  Hepatitis magazine last year devoted an entire article  to the immune reactions and symptoms that hepc causes.  dr.s didnt even recognize that thru the years. duh???
  wish you the best.  keep coming to the boards and learning about this.  great support dealing with side effects of treatment too.
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Avatar universal
I don't think this study is an AD for Schering-Plough or Roche. The results of this study are reported by an independant investigator, as mentioned in the beginning.
However, should it be a War amongst Drug Lords as you amply described it, its victors can only be the PATIENTS. Since in any War there is only one WINNER. It's called the Survival of the Fittest.
Thanx for your views & pls keep us updated on any further developments in this WAR on OUR ADVERSARY called HCV.
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Avatar universal
Thanks to everyone who took the time to respond to my post. I got a lot of great information and now I don't feel so alone in it. I look forward to keeping in touch. Thanks again!
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Avatar universal
Thank you for sharing with us such a private and painful part of your life. I appreciate your courage. I wish your mother eternal peace.  

What I have learned from you today is that I need to pray for more tolerance and patience to be able to continue through this journey of treatment. I also accept that tx is not for everybody, but if and when possible, then tx should be seriously considered.  

For those who may not know, this is my 2nd time around with tx., I am a non-responder to tx., but grateful to give it a second try.

God bless and contiuned comfort to all.... Edgar
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Avatar universal
Hey Indy, I know you said in a few of posts you will drink on occasions, I'm not trying to start a battle on drinking or not drinking alcohol after clearing- matter of fact this question is just for you. I was wondering what condition was your liver in before you started tx. The whole purpose of this question is that I was stage 3 fibrosis- my GI said even if I clear- stay cleared I should never drink alcohol again because of the cond. my liver was in, I know I was 2b-went 48 weeks(a bit over for 2b) -I'm sure my liver improved some- I know the only way to find out is another 14" needle stuck smack in the center of my stomach(liver biopsy)- I Don't think I'm doing that again- Let me hear your opinion on this- I know you've done a hell of alot more research on this than me- no offense to everyone else- but I'm just asking Indy on his advice here- nothing personall guys.- HD
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Avatar universal
Hi,  I can't answer your question regarding your symptoms but I thought my hepC info may help you in some way.
I am 48 yrs old female, genotype 1b and today is week twelve of treatment for me.  Side effects have been very mild, not even close to what you're describing without any treatment?
Kind regards and good luck with your choices.
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Avatar universal
Perhaps another opinion from a different GI? It sure can't hurt. Some of the symptoms you describe sound very HCV related to me but I am no doctor and no doctor could diagnose you online.

Treatment isn't so bad and it works.

I hope you keep coming back here to let me know how you're doing.

Scott
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