Hello again, This board has been the best place of info and the best support through my tx and I wish to give many thanks to all of you but I need your help now more than ever. M/48Yrs. HCV 25yrs I finished tx May 1st Geno 3a with starting vl load at 2,960,00 Ast and Alt in the 100
I have only been off tx 2 weeks now but I am having sx'x. Muscle/joint pain, fatigue, brain fog etc. Some worse than on tx. My hep doc said it might be a month before I noticed feeling much better and often it is up 6 month to a year. I have seen others post their sx took along time to subside. I recently found out I also have interferon induce hypothyroidism so expect some of this is due to that. Have you had your thyroid tested? My thyroid went on tx but my friend found hers shortly after tx from having continued sx'x. Hope you feel better soon. LL
Dear friend, many people quickly recover from treatment and "feel great." I wouldn't know - never felt any of 'em. As time passes, I have found others like myself that take a long time to recover fully from both the damage of the disease and the damage of the treatment.
Don't lose hope, keep sluggin' away! God bless! -Michael
The thing is that. like me, you've had insomnia for years due to HCV, and found little releif with meds during treatment, but never fixed the problem in your body. Your body's message that it sends the brain is "no sleep". To change this, I went to an insomnia clinic and came home with these simple tips, that seem to help at times, now, more often than not, I am getting sleep au natural/
1. Do not use your bedroom for anything but sleeping. Train your brain that when you are in there, it is to sleep.
2. Do not recline to read or watch t.v. save that position for sleep. Again, train your brain to know that this laying down position means sleep.
3. Get a pre bed time routine going. Something you do for 15 or 20 minutes before bed. I usually read, wash my face, turn down my bed, open the bedroom window. This tells my brain that we are now getting ready to sleep. It sounds too simple to be true, but I do these same things in that same order, every night.
4. Get a sound machine. I set mine on ocean waves, but you can have a spring evening or a babbling brrok. I set it for 30 minutes. If I am not asleep before the machine shuts off, I get up and read, sitting up in a chair, for 30 minutes and start again.
Your body has become so accustomed to not sleeping, that you really have to retrain it. You can do it...just keep at it. Also, do not eat anything past 8 p.m. or at least three hours before your bedtime. Keep your metobolism slowing down at night, and think about doing some low impact excersice, like tai chi chaun to get centered.
freedom,,,congratulations on finishing and I am still at mid way mark in tx but from everything I have observed,,,Seems like its taking a good 3 to 6 months to clear the meds and lingering symptoms. Best Wishes
Hippiemom,,,Wow,,,My heart broke when I read your reply down in the prayer section! I don't mean that to be hateful towards you as I don't even know you,,,It was just that I saw that posting full of bitterness. I'm so glad that you can beat this disease all by yourself but you have to remember,,,,There is so many people here that need the faith, whether God or their own Higher Being,,,Shouldn't we honor and respect all for that whether our beliefs or not...
excellent point...amerabrit is agnostic but very tolerant of the needs of those who want to include prayer as a healing tool, as well as laughter. I am not a practicing catholic and have become disenchanted with organized religion, but I believe in the soul...and its many needs while in this body.
As you may have read in my recent posts, I am having similar problems. I am almost 10 months post-tx, undetected, and did 18 months of high dose peg-intron and Ribavirin. I was a Type 1-B.
My problems include severe skeletal pains, and burning sensation in mid-back/thoracic joint region. Often the pain radiates around the ribs, and is felt on deep breathing. I suffer from periods of extreme fatigue, anxiety attacks, and lack of motivation. I hope that all of this is post-interferon induced side effects, and that it will slowly fade away over the next year or so....but who knows. It certainly is no picnic!
I have lingering 'mild' hypothyroid problems, and am taking synthroid, but that has not yet seemed to make any big difference. My Endocrinologist said that the mildly elevated TSH should not be the cause of such pronounced symptoms, but that the synthroid might help to a degree. I am not sure that it has.
My rheumatologist found only the typical elevated ANA, but no other autoimmune disease markers, etc. Not much help or advice found there. I think much of the post-tx stuff is 'auto-immune- in nature, and fits the elevated ANA profile, but who knows.
I continue to fear that the HCV may remain in CNS, or Brain, or Connective tissues AFTER SVR from the blood and liver, and that this could be the cause of the symptoms many of us are experiencing. I hope that this is not the case, but my suspicions are aroused, and I do not believe any researchers have proven that this could not be the case. I felt better during the weeks leading up to the end of tx, and for a few weeks after tx than I do now.
What do all of you think?????? To the SVR's out there: What have you experienced, post-tx???
I found your comment on the pain around the ribs quite interesting. I also have that on both sides but haven't seen anyone else mention it. Weird. I'll be curious to see the responses from the SVR's. LL
Thanks for all of the feedback on post tx sx and by the way doubledose, I was just as you, felt better the last few weeks of treatment and for a few weeks after i finished then this awful cruddy feeling that feels like I have been up for days! Well I think I have.
Hopefully more SVR's will get us more feedback on this subject,
I think your right about the psychological aspect. I think I was on pure adrenalin at first but now I feel like **** with the aches and pains. I know it has only been about 3 weeks but I want it to end. I went for a walk Sunday morning and had to lay down the rest of the day. I'm realizing now its is going to take some time AARRRRGGGGHHHHH!!!!!!
Good news is I still have a job and there is a glint of hope. At least my mind is coming back easier then my body.
I believe you did 72 weeks tx and that was your 2nd time? I often wonder at the safety of doing tx so long. At the time I chose to do 72 weeks (only regular dosing, amazing how much you did!) there really wasn't much info out there on the effect and safety of long term peg and riba. Would I do it again? Yes but maybe different dosing. I don't kow, it's all to easy to say in hindsight but I would still have done the extended tx. I'm wondering, did you feel worse during the extended part of your tx? How about during the high dosages in the beginning? When in tx did you start having thyroid problems and did your sx increase then? Did your ribs hurt all through tx or just after? I'm just curious if you don't mind. I wish I knew more about what others finished exteded have experienced but there isn't that much info to see out there. If you heard anything and care to share like I said I am curious. LL
Layla: I do believe that I would do it again, at the same dosage levels. Since I was a previous relapser, after a 14 month, daily dosing regime, I did not want to take chances. I went after it with everything I could take.
My treatment waxed and waned, with periods that were almost unbearable, to periods when I felt about 80% normal. Arthritic pain, dizziness, mouth sores, and nasty moods marked the worst times. It did not get much worse toward the end, and still varied from week to week, but I knew that I was ready to stop at 72 weeks, nonetheless. I was finished with feeling horrible.
Now that you mention it, the mid-back pain came on early into tx, and was ferocious, feeling like someone had run a hot sword through my upper back and ribcage. Breathing and sleeping was very difficult. That symptom came and went a number of times over tx, but not quite as much toward the end. Now that it is back again, although much less intense than during tx, it feels more ominous. Sort of like: why does it feel so bad NOW, after SVR and 10 months of recuperation. I have been pushing myself alot though, waxing our cars, working in the lawn and woods, forking 15 yards of mulch, raking paths on our property, running, biking, and playing some tennis. I know that I am expecting a lot, and pushing the limits, but this stuff feels very odd. It burns at night, then goes away when I am active. It seems to go in unison with my fatigue symptoms, and when feeling that old brain fog. Hopefully autoimmune...although that is not very good either. Who wants to be a 'lupus' poster child? But I would rather that be the cause, than some wierd HCV manifestation in selective tissues, outside the bloodstream. THAT is my really scary thought.
I am assuming that the after-effects of all the high dose interferons, over the last 6 years, has taken a toll, and done some nasty things. We will see how recovery goes, over the long haul. I'll keep pushing though! Thanks for your comments.
I am starting to notice some of the symptoms I had before tx. For me, because of the shape my liver was in pre-tx., it was almost inevitable, and the heat(AC getting fixed) these might seem worse than they really are. I had to start aldactone and lactulose again because of fluid retention and the kind of constipation that can lead to ammonia brain again. But over all, I have to say that after 3 mos., my sleep pattern is improving, stamina is good except for the heat, which is normal for anyone. My appetite is good and I seem to be more satisfied w/ liver freindly eating, and not craving ice-cream, candy and desserts. So all in all, it keeps improving day by day. I still have bad days, but they come in 1's instead of 2's and 3's in a row. So keep your chin up, and keep on keepin' on and look forward to the days ahead.
DoubleD. There is absolutely no reason to worry with thoughts of the HCV hiding somewhere just waiting to bust loose and every reason to be confident it is not. I think this fear is universal since we have been hammered with HIV info for so long, but HCV is very different and, truly, is not a virus that hides in reservoirs to emerge later, bigger, nastier, and more treatment resistant.
Chev - I never lost the tinnitus and the painful back of the head headaches that blessedly disappeared during treatment, but came back about 1 year post tx. The mental fog has cleared, I think, so my only excuse now is I'm just "stoopid". Effed up work Friday, Saturday, (skipped Sunday, didn't work), and 3 times today, once very badly. Ah, well!
The most common lingering side appears to be depression. I'm discounting thyroid problems, because if it goes it is often permanent and not just "lingering".
So, whilst awaiting for my favorite heroin substitute + Tylenol to ease my painful head, I wish all a better tomorrow. -Michael
Hi freedomsoon...I haven't seen ya before and I wanted to say welcome! I did 48wks of tx and relapsed...I am doing a clinical trial in Oct. I was EVR and undectable thoughout tx. I have a new doctor this go-round....had a liver doc last time. My new doc is a hepatologist and a good one! I did have a bx done by him in JUNE. It was good! YEAHHHH!!! So the combo tx did a lot of damage to the virus. I hope to "clear" one of these days too! I want to wish you the best. We must keep our eyes on the prize!!! Good luck! And keep us posted. Sincerely, Cindee
notallowed...Hi and I don't think I've ever talked w/ you either. My post sides have been fibromyalgia and tissue damage. I relapsed and will treat again w/ different meds in Oct. Best of luck to you. I still have a lot of bad days...but I do still have hep c!!!! YUKKKKKKKKK!!!!!! best wishes, Cindee
GEEZ GUYS I THINK I GOT YOUR QUESTIONS MIXED UP!!!!!!!! BUT NO FRICKIN' WONDER WITH ALL THE NON-SENSE I HAVE READ IN THE PAST FEW DAYS. MY HEAD IS SO FULL OF "WHERE DID ALL THAT OTHER STUFF COME FROM ON THOSE OTHER POSTS?????" AND ALL THE POST SPACE WAS TAKIN' UP BY ALL THE NASTY NAME CALLING. REALLY GUYS, IT'S NOT USUALLY LIKE THAT HERE. THIS FORUM IS FULL OF SO MANY CARING, LOVING PEOPLE...AND LOTS OF KNOWLEDGE...BUT YA COULDN'T TELL THAT, WITH THE POSTS IN THE PAST FEW DAYS.
YOU PEOPLE WHO ARE NAME CALLING AND BEING SOOOOOO NASTY TO EACH OTHER, NEED TO GET EACH OTHER'S E-MAIL ADDY'S AND DO IT IN PRIVATE! WE DON'T NEED THAT **** HERE! WE ALREADY ARE SICK ENOUGH! I FOR ONE AM TAKING A BREAK FROM HERE! I'LL CHECK BACK IN A FEW DAYS AND I HOPE THINGS ARE BACK TO NORMAL. THIS KIND OF BEHAVIOR GOT US SHUT DOWN...ONCE BEFORE BY MEDHELP! I HOPE THEY DON'T SHUT US DOWN AGAIN. THE DEBATES...ARE DO-ABLE, BUT GEEZ...WE ARE ADULTS HERE...I THOUGHT NAME CALLING WAS LEFT BEHIND IN ELEMENTARY SCHOOL. YOU PEOPLE ARE LETTING YOUR TRUE...IQ'S SHOW!!!!!! I KNOW I'M NOT THE SMARTEST PERSON IN THIS FORUM...BY FAR...BUT NAME-CALLING????? P-LEEEEZZZEEEEE!!!! YOU GUYS OR I SHOULD SAY ..."GALS" NEED TO GROW UP! I DON'T USUALLY POST A MESSAGE WHEN BICKERING TAKES PLACE...BUT YOU GIRLS ARE TAKING UP TOO MUCH "NEEDED" SPACE. I HAVE AN ELEVEN YR OLD G.DAUGHTER WHO IS "MORE GROWN UP THAN YOU GALS". THIS FORUM IS FOR HEP C AND RELATED TOPICS!!!!!!! YA'LL NEED TO APOLOGIZE TO EACH OTHER. I'D HATE TO BE IN ANY OF "YOUR" SHOES.
tallblonde, I am sorry for your miscarriages..I sincerely am, and I'm sorry you've had to treat so many times. I thought you were smarter than how you have been acting lately. You have given us a lot of needed info here. Could you please get your mind back on the right track????? You always seemed like a nice person to me. I was a drug addict, before I ever knew what an addict was. Thank the Lord I had parents w/ unconditonal love, or who knows where I would be today. I am 11 yrs clean from drugs, but I'm not really sure that's where my hep came from! I was in drug busts and everything...and the police said, they would never look at me and think I was an addict...but I WAS. I am clean now from the drugs and I am very PROUD of myself..I was addicted 17yrs to heroin. I just wanted to let you know that. Please get back to your "real" self. Your behavior has surprised me! I really liked you the way you were before! Sincerely, Cindee
And you other gals...RING!!! Cuteus!!!! YOU SHOULD BE ASHAMED OF YOURSELVES! I THINK YOU OWE EACH OTHER ...AS WELL AS EVERYONE HERE AN APOLOGY!!!!! THIS NON-SENSE HAS GOTTEN WAY OUT OF CONTROL....SHAME ON YOU! WE ARE HERE TO HELP EACH OTHER....REMEMBER?????
I AM OUTTA HERE FOR A FEW DAYS....I WILL BE E-MAILING MY FRIENDS, IN THE MEAN TIME....GEEZ I NEED TO HEAR SOME HEP C RELATED INFO FROM SOME PEOPLE WHO HAVE SOME SENSE, LOVE, COMPASSION, CARE AND KINDNESS. SINCERELY, CINDEE (STILL SHAKING MY HEAD IN DIS-BELIEF..IN WHAT I'V READ......
Wow,,,I'm glad you wrote that Chev because yes I'm thinking,,,I would probably blow that support group away if I listed too many of my sides that come and go LOL They would be running!! I do realize that you can carry on your work schedule within reason but I know that you are one tired puppy at end of day! You would have to be as this really does take alot out of you.. Just look at our blood counts and the drops that tx causes,,,You know that your bound to slow down because of it. The riba rash and itching alone at times can drive me crazy,,,,I carry a back scratcher to bed at night LOL I know sounds funny but the itching sometimes is sooooo bad!
I still stand: This is not the place for religious beliefs. It's great that you have them. Some of us have been deeply hurt by the religious community and don't come here for any more of it. I have a lot of info as I work in the medical field and have been treating individuals with HCV/HIV for YEARS. Can we just stick to this, please...my personal beliefs are no one's business, and I don't want to hear yours. If I did, I'd go to a religious site.
My rheumatologist told me that in some people tx makes arthritis worse also fibromialgia and many other problem. It seems some people are okay and some end up with other problem. Thats why forums like this is so important we learn so much from each other and reach out and speak out as much as we can so our words can hopefully reach some of the right people so research can been done on HCV as much as everything else. Hopefully things are changing with research. I know this sound hopeless at times it does to me. Especially each time you go to the Dr and it's something else. Most of you understand more than some of my family does. So, to me that make you my family.
Hi and TY for the support in my words of wisdom...LOL!!!!!!! I was planning to stay away for a few days, but I can't! I DO CARE SO MUCH ABOUT EVERYONE HERE and IF I CAN HELP ANY ONE, I WANT TOO! I think you're a wonderful person for the work you do! Your "higher up" will bless you for that! I never thought of my virus as a sentence either. I have it and I have to deal with it! I did get depressed alot more than usual when I treated the first time, but I think next tx will be different. I was "feeling" guilty all the time, but INDY has helped me a lot!!! I don't know what I would do w/o this forum. It has been a GOD send to me! My guilt was because I wasn't working and helping to support my family, w/ my income. But like Indiana e-mailed me...my hubby does want my health back...not my $$$. Hubby told me the other day, he doesn't care if I ever go back to work, but I LIKE working. I just have to realize that I will be back to work in the future. I am learning to concentrate on getting well. I have stopped letting things stess me out! I am so glad yo are here.....you have a lot of knowledge on diseases, and how to handle things. But I agree with Honey, I did have a rough time w/ tx. I had to stop work around the 8th wk of tx. I look at pic of me when I was on tx.....YIKES!!!!!! I looked really bad! I still have a lot of pain, but not tx related...it's from the fibromyalgia. I still have a lot of back problems...just started back lately...I had disk surgery 9 yrs ago. If they continue for much longer. I'm going to go back to my neuro surgeon and have him do a MRI. I could have some disk problems again. I ruptured my L5 disk 2 times...first the left side, then almost one yr to the date I ruptured the right side! Surgery was great! I went in on a Thursday, had the surgery and walked out of the hospital on the next day! So something might be going on there! But life goes on. And all in all life is good! I am ready for the crisp fall weather!!! And then I will be on my second tx. Well, I hope you are doing good and I wish for you the VERY best! Talk w/ ya soon....love @ prayers, Cindee
Thank yyou for your comments. i sure appreciate the frank way you stated it...much better in your words than mine.
I would like to say that I don't consider doing treatment for 48 weeks as a "sentence", rather as a return to health. If you expect horrible side effects, you'll get 'em. If you think this is a curse, you'll be cursed. Treatment is saving my life...12 weeks on 1/2 dose and am undetectable! Yes, low, low white counts, can't do epogeon or neupogen because spleen is so enlarged, so now am on 1/4 dose hoping my body can recover on it's own.
All you people with type 1a, 1b...48 weeks may not be enough, but thankfully you can wait it out off treatment for 6 months, and do another round. There's a guy in my group, stage 4, on his 3rd round...still working every day, still happy, still knowing he will be cured.
Men do seem to have a rougher time of it than women, but we haven't noticed any significant difference in weight loss...mostly in depression. Men seem to take it harder than women. EXCERSICE is the key. even just walking...get up and move, get those endorphins to kick in and the dopemine will follow.
Hey, there are days when I come home from work and take a nap before I go bed LOL! I'm not saying we aren't tired. I think that in general, most of the folks were scared to death by doctors warning them of side effects that they actually expected it to be like it was three years ago, when you took three shots a day, before pegalation..and people WERE so sick all the time. I just want to encourage everyone that sometimes side effects are not only mild, but they dissapate with continued treatment as our bodies adjust to the barrage of poisin we inject and ingest to kill the virus killing us!
My brother died in my arms from liver failure in 2000. Back then the trestment could kill ya. It wasn't pretty and it took a long time to get over it. I learned a lot going through that harsh treatment with HIM, and now i service the at risk community and positive people.
I will try to bring as much info as I can to this space and try to leave as much of ME out of it. I just want to share, and since I am in the field, sometimes we get info not released to the public. Thanks for sticking this out with me. I actually got HCV from a needle stick last August, and was diagnosed in November. The virus replicated so fast I went from stage 1 at 117,000 SVR in November, to stage 4, complete with esophegeal varices, 450,000 Viral load, in January and was hospitalized, transfused and had the varices banded in February.
My doctor runs a clinic called O.A.S.i.s. Clinic in Oakland California. he is the V.P. of liver transplant unit at U.C. Davis. I got the creme de la creme because I was told to go home and write my will and no other doctor would treat me. This wonderful woman, Dr. Diana Sylvestre, only sees extremely ill patients that noone else will take on. She writes quite extensively for the HCV Advocate, too. She is saving my life, along with the wonderful folks at the Pegassist patient assistance program, who supply my meds free of charge, because my insurance did not cover it.
I am a client advocate, I fight everyone to get my clients what they need, I've gotten them treatment, free meds, and hope, a better quality of life.
I love to share inf, and will bring to this forum everything I learn.
Copyright 1994-2016 MedHelp International. All rights reserved.
MedHelp is a division of Aptus Health.
This site complies with the HONcode standard for trustworthy health information.
The Content on this Site is presented in a summary fashion, and is intended to be used for educational and entertainment purposes only. It is not intended to be and should not be interpreted as medical advice or a diagnosis of any health or fitness problem, condition or disease; or a recommendation for a specific test, doctor, care provider, procedure, treatment plan, product, or course of action. Med Help International, Inc. is not a medical or healthcare provider and your use of this Site does not create a doctor / patient relationship. We disclaim all responsibility for the professional qualifications and licensing of, and services provided by, any physician or other health providers posting on or otherwise referred to on this Site and/or any Third Party Site. Never disregard the medical advice of your physician or health professional, or delay in seeking such advice, because of something you read on this Site. We offer this Site AS IS and without any warranties. By using this Site you agree to the following Terms and Conditions. If you think you may have a medical emergency, call your physician or 911 immediately.