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SVR's: post-tx vs. pre-tx symptoms...comments
I would like to ask all of our post-tx SVR's on the forum to briefly list the issues that are affecting them AFTER completing successful therapy, and how they compare to the pre-tx problems.
It might be helpful for all of us to see what common problems we are all dealing with, and to see if, and when, these symptoms resolve...or if they continue to cause problems. I will list the major symptoms that I have experienced since finishing tx almost 15 months ago:
1. Neck, back and stomach pain...periodically. Still an issue
2. Dry, crusty, irritated eyes...frequently...worse in mornings
3. Lack of motivation, mild depression, low energy..frequently
4. Thyroid abnormalities, low or hypo...being treated.
5. Autoimmune-like reactions, with red cheekbones, burning/inflamed feelings in various parts of body
6. Low body temperature...97 deg. during high activity
7. Low tolerance to stress, exercise, physical work
8. Periodic balance problems, dizziness, pressure in head
9. Frequent erectile dysfunction, correctable with meds.
10.Mild gland swelling, periodically. Lymph nodes, parotid..
I don't want to sound like things are worse, because in many ways I feel better by far, than I did before tx. I feel healthier, my skin is much more normal, I am able to do much more, and have less feeling of 'general illness'. But, overall, I do feel like I have a vague 'autoimmune' disorder, and even if the docs say that it is not 'clinical lupus' or other formal diseases, it still has all the trappings of autoimmune disease.
Replies are welcome!!!
It might be helpful for all of us to see what common problems we are all dealing with, and to see if, and when, these symptoms resolve...or if they continue to cause problems. I will list the major symptoms that I have experienced since finishing tx almost 15 months ago:
1. Neck, back and stomach pain...periodically. Still an issue
2. Dry, crusty, irritated eyes...frequently...worse in mornings
3. Lack of motivation, mild depression, low energy..frequently
4. Thyroid abnormalities, low or hypo...being treated.
5. Autoimmune-like reactions, with red cheekbones, burning/inflamed feelings in various parts of body
6. Low body temperature...97 deg. during high activity
7. Low tolerance to stress, exercise, physical work
8. Periodic balance problems, dizziness, pressure in head
9. Frequent erectile dysfunction, correctable with meds.
10.Mild gland swelling, periodically. Lymph nodes, parotid..
I don't want to sound like things are worse, because in many ways I feel better by far, than I did before tx. I feel healthier, my skin is much more normal, I am able to do much more, and have less feeling of 'general illness'. But, overall, I do feel like I have a vague 'autoimmune' disorder, and even if the docs say that it is not 'clinical lupus' or other formal diseases, it still has all the trappings of autoimmune disease.
Replies are welcome!!!
Yes, I have been tested for ANA, and they are elevated. My rheumatologist said it is not Lupus or RA, but is peculiar to interferon use. I probably have had the elevated ANA since my original tx back in 1998.
If I were in your situation I would NOT discontinue just because of a positive ANA. This is common to many on tx, and many also who just have HCV and have not done tx. The more important goal, in my mind, would be to eradicate the virus, NOW.
Why have that to worry about, PLUS have the ANA to worry about.
Your doctor should monitor your autoimmune manifestations on tx, and only if they get outrageous, or very dangerous, should that influence your tx. Most of the sx that I had while on tx were of an 'autoimmune' nature. This may be par for the course.
Most doctors don't do a lot of ANA testing for patients on tx. No telling how common this is to therapy.
I still do have an elevated ANA, almost 15 months post tx, and hope that it eventually fades...this is probably the cause of my post tx problems...BUT...I would rather deal with this and have the virus ERADICATED!
Good Luck!
DoubleDose
If I were in your situation I would NOT discontinue just because of a positive ANA. This is common to many on tx, and many also who just have HCV and have not done tx. The more important goal, in my mind, would be to eradicate the virus, NOW.
Why have that to worry about, PLUS have the ANA to worry about.
Your doctor should monitor your autoimmune manifestations on tx, and only if they get outrageous, or very dangerous, should that influence your tx. Most of the sx that I had while on tx were of an 'autoimmune' nature. This may be par for the course.
Most doctors don't do a lot of ANA testing for patients on tx. No telling how common this is to therapy.
I still do have an elevated ANA, almost 15 months post tx, and hope that it eventually fades...this is probably the cause of my post tx problems...BUT...I would rather deal with this and have the virus ERADICATED!
Good Luck!
DoubleDose
Just curious, have you been tested for antinuclear antibodies? I developed these during treatment (am on week 29/48) and am debating whether to continue because I believe the interferon is causing it. I'm also having autoimmune-like symptoms that I didn't have prior to tx, and am sure these symptoms are related to the ANAs.
I know what you mean about the depression and family. My husband, bless his heart.... I feel alot of the time that he does not have a clue to the problems that I endure on a daily basis. I know he tries.
Pre-tx i was on 20mg of sarafem (mild anti-depressant) for pms.
During tx I was changed to effexor 75mg, then 150mg and finally 225mg I also was put on ativan for anxiety. I had to take ambien to help me go to sleep, after tx changed to trazodone. I still do not get a good nites sleep.
Pre-tx I was an avid reader of mysteries, during tx I could not concentrate long enough to read and still have that problem.
Pre-tx i was on 20mg of sarafem (mild anti-depressant) for pms.
During tx I was changed to effexor 75mg, then 150mg and finally 225mg I also was put on ativan for anxiety. I had to take ambien to help me go to sleep, after tx changed to trazodone. I still do not get a good nites sleep.
Pre-tx I was an avid reader of mysteries, during tx I could not concentrate long enough to read and still have that problem.
Thanks for all the replies. I appreciate all the details and personal experiences offered.
I also have no regrets about doing tx.....It probably saved my life..and liver.
Sioux: Our post-tx symptoms are very similar, and I also get rashy outbreaks on occasion, as well as the sleep problems.
The feeling of depression and lack of satisfaction within my family, for no apparent reason, is very unsettling. I often feel my wife is being insensitive to my needs, when in all probability, I am just feeling down about myself. Inertia and lack of drive are issues that I am wrestling with every day, and did NOT have during tx. I pushed hard, and worked non-stop while on tx...now I feel like a plug has been pulled. I feel like I deserve a long, long rest....and have less appreciation for all the things I once enjoyed. I guess that is depression!
Twinmick: We are all hoping that the post-tx symptoms will eventually fade away, or at least moderate to a good degree. Most of the researchers and doctors that you talk to regarding this subject tend to say that the post-tx problems generally fade in three or four months, or maybe up to a year after tx. I am not sure who they are treating, because I sure see a large number of people with longer term post-tx problems. Our board also seem so bear this out.
I also have no regrets about doing tx.....It probably saved my life..and liver.
Sioux: Our post-tx symptoms are very similar, and I also get rashy outbreaks on occasion, as well as the sleep problems.
The feeling of depression and lack of satisfaction within my family, for no apparent reason, is very unsettling. I often feel my wife is being insensitive to my needs, when in all probability, I am just feeling down about myself. Inertia and lack of drive are issues that I am wrestling with every day, and did NOT have during tx. I pushed hard, and worked non-stop while on tx...now I feel like a plug has been pulled. I feel like I deserve a long, long rest....and have less appreciation for all the things I once enjoyed. I guess that is depression!
Twinmick: We are all hoping that the post-tx symptoms will eventually fade away, or at least moderate to a good degree. Most of the researchers and doctors that you talk to regarding this subject tend to say that the post-tx problems generally fade in three or four months, or maybe up to a year after tx. I am not sure who they are treating, because I sure see a large number of people with longer term post-tx problems. Our board also seem so bear this out.
I do have some symptoms from your list, that means 1, 2, 3,7and 8. In addition I suffer from dizziness and insomnia.
I also have shortness of breath and some problems with my sinus. My worst problem is tinnitus.
I did not have these symptoms before treatment. I have been a SVR since 1998 and my life is much better now than before.
I am convinced I am cured, but must live with these side effects from the medication or what do you folks mean?
Will some of this eventually go away?
Thanks and Merry Christmas.
I also have shortness of breath and some problems with my sinus. My worst problem is tinnitus.
I did not have these symptoms before treatment. I have been a SVR since 1998 and my life is much better now than before.
I am convinced I am cured, but must live with these side effects from the medication or what do you folks mean?
Will some of this eventually go away?
Thanks and Merry Christmas.
I was 2b, did 24/24, SVR at 6 mos. post. I guess because I was so very sick before tx., post tx. is a breeze. No more joint aches, even w/ the cold weather here in good old N.D. I have more energy than I've had in at least 10 years. I still get mild depression, but it was severe prior. I still get dry eyes, but also had those pre-tx. So all in all, I'm way better off than before. Even my liver is better. Still cirrhotic, but no inflamation and back to normal size. Joni
Leftover sides really suck except for I'm very jealous of your SVR.Seriously-congrats on SVR.
This dosen't happen to everyone !!!! So don't be scared to to the tx. if that is your choice. I did it and cleared the virus.
I'm about 9 months post tx. 1a svr.
I still have ALOT of problems
1. Fibromyalgia, dx after tx.
a. body pain, mostly neck, shoulders and upper back.
although, it seems to move all over.
2. Hyperthyroid, dx after tx.
3. Major Depression, dx during tx. and still have it
4. Anxiety, dx during tx. and still have it.
5. Cognative problems during and post tx.
6. Concentration problems during and post tx.
7. Rashes during tx also post tx (not so bad)
8. Sleep problems (never before tx)
9. Major weird dreams
10. Raynaud's post tx,
11. Also have low body temp, painful lymphs, and get tired very easily. I had to have my gallbladder out about 4 months into tx.
And to TOP it all off. I have a darn COLD !!!! <smile>
I still have ALOT of problems
1. Fibromyalgia, dx after tx.
a. body pain, mostly neck, shoulders and upper back.
although, it seems to move all over.
2. Hyperthyroid, dx after tx.
3. Major Depression, dx during tx. and still have it
4. Anxiety, dx during tx. and still have it.
5. Cognative problems during and post tx.
6. Concentration problems during and post tx.
7. Rashes during tx also post tx (not so bad)
8. Sleep problems (never before tx)
9. Major weird dreams
10. Raynaud's post tx,
11. Also have low body temp, painful lymphs, and get tired very easily. I had to have my gallbladder out about 4 months into tx.
And to TOP it all off. I have a darn COLD !!!! <smile>
I'd like to add that perhaps I'm a bit on edge concerning my future tx options. I have a LOT to live for and won't really know the score till I get biopsied. I do know that repeating tx for a longer period when it has already kicked my butt is more than an unpleasant thought.
Good topic. I'm 6 mo post tx type 1 and not clear of hcv.48week tx. I now have shorter sleep periods which developed post tx only. Also depression is sporadic but difficult and during tx was non-stop.My worse side. Also sexual dysfunction-desire fine but erectile dysfunction. Correctable with drugs(cialis).I would like to talk more but I have an idiot here at work who reads over my shoulder and I must stop so I can DESTROY him. Oh yeah, and my temper is kinda frikken short!
While I do feel MUCH better off tx I still have some lingering problems I did not have before tx the worse being the nausea. I also still experince slight dry eyes and skin redness occasionally. I do have to now take thryroid meds daily and will have to forever now. The good things are my energy level is close to normal again. Another good thing is the HCV symptoms I had pre dx or pre tx have not come back the worst of those being the bone pain. The nausea is pretty bad this week so I amy call the doc. I'll give it another day or two in hope it goes away. LL
Its all good 2yrs post -tx.
I went to a party the other nite and all these grey haired people were there. then I realized they were all my age. I looked and felt 20yrs younger.
My hair grew back in dark and silky and curley w/o the grey. I've kept up my 'good habits' as to liquid intake and if anything, have become even more of a food fanatic. I still take my walks. I ache b/c I'm not using my muscles enuf.
Sometimes, not having the resources to see a med doc forces one to take more responsibility for one's wellbeing.
I stay on the same routine for healthy living. So headaches are semi-normal, a little depression is normal, trouble sleeping is normal. my hep c is cured, b/my life goes on. My mom died this summer, I broke a tooth and have to wait on the estate to fix it.
so there are real reasons to have real emotions. they are just not made worse by hep c anymore.
the problems I have are all related to the sever liver damage caused by a mis-dx hep c infection. problems like encephalopathy, ascities. Those things are good enuf reason to tx early.
I went to a party the other nite and all these grey haired people were there. then I realized they were all my age. I looked and felt 20yrs younger.
My hair grew back in dark and silky and curley w/o the grey. I've kept up my 'good habits' as to liquid intake and if anything, have become even more of a food fanatic. I still take my walks. I ache b/c I'm not using my muscles enuf.
Sometimes, not having the resources to see a med doc forces one to take more responsibility for one's wellbeing.
I stay on the same routine for healthy living. So headaches are semi-normal, a little depression is normal, trouble sleeping is normal. my hep c is cured, b/my life goes on. My mom died this summer, I broke a tooth and have to wait on the estate to fix it.
so there are real reasons to have real emotions. they are just not made worse by hep c anymore.
the problems I have are all related to the sever liver damage caused by a mis-dx hep c infection. problems like encephalopathy, ascities. Those things are good enuf reason to tx early.
Finished Tx Aug.27th 2004. Since then some symptoms have been:
insomnia
bizarre dreams
lack of appetite
fatigue
severe depression (now under control thru meds)
a general felling of I don't give a @#$t about me or anyone else
On the positive side:
no more dreaded Friday nites (yippee)
spiritual awakening
clear skin(except one instance of poison ivy)
no more thinning hair
a renewed outlook as to my future
Pre-Tx I suffered from arthritus, degenerative disc disease ,
cronic pain and discomfort. But now those issues are still there, but the realization that I had survived a deadly disease far outweighs the negatives. Folks, I'M HAPPY TO BE ALIVE!!! And all the aches and pains are now a moot point. Let the good times roll....................................Neal
insomnia
bizarre dreams
lack of appetite
fatigue
severe depression (now under control thru meds)
a general felling of I don't give a @#$t about me or anyone else
On the positive side:
no more dreaded Friday nites (yippee)
spiritual awakening
clear skin(except one instance of poison ivy)
no more thinning hair
a renewed outlook as to my future
Pre-Tx I suffered from arthritus, degenerative disc disease ,
cronic pain and discomfort. But now those issues are still there, but the realization that I had survived a deadly disease far outweighs the negatives. Folks, I'M HAPPY TO BE ALIVE!!! And all the aches and pains are now a moot point. Let the good times roll....................................Neal
Hey everyone. While I feel pretty much back to normal 8 weeks post-treatment, a couple of things have lingered. One was a sx that I never experienced during treatment, but I'm assuming that it was treatment related. A couple weeks after treatment ended, I became very dizzy and sick-feeling whenever I was a passenger in a car. I've never been car sick in my life, and it wasn't a nausea thing...it was my head. Very off-kilter. It was dibilitating for a couple of days when I travelled the meandering backroads of Marin County.
Second, I still get dizzy when I get up too fast - also something that never affected me pre-treatment. I always forget about it too, until I get up too fast! Also have some minor insomnia issues.
Second, I still get dizzy when I get up too fast - also something that never affected me pre-treatment. I always forget about it too, until I get up too fast! Also have some minor insomnia issues.
exert from book posted above
Symptoms of Hepatitis C
While some people with chronic hepatitis C infection are asymptomatic, others may suffer from a constellation of symptoms. Fatigue, arthralgia (joint pain), myalgia (muscle pain), and depression are the most commonly reported symptoms of chronic hepatitis C; however, the relationship between the presence of symptoms and the severity of HCV disease is unclear (Barkhuizen 1999; Goh 1999; Kenny-Walsh 1999).
Fatigue and musculoskeletal pain are characteristic symptoms of liver disease, especially chronic hepatitis C. Barkhuizen and colleagues reviewed the charts of 239 hepatology outpatients, comparing the incidence of fatigue and musculoskeletal pain among individuals with HCV infection, individuals with HBV infection and individuals with alcoholic liver disease. Significant associations between HCV infection and musculoskeletal pain (P=0.0001) and fatigue (P=0.001) were identified, with 81% of the HCV-infected participants reporting musculoskeletal pain as compared to 56% of those with other liver diseases. Fatigue was reported by 66% of HCV-infected individuals, 30% of those with alcoholic liver disease, and 29% of individuals with hepatitis B infection. No associations were identified between musculoskeletal pain and the extent of liver disease, aminotransferase levels, or mode of acquisition.
There is some evidence that hepatitis C-related fatigue may be linked with psychological factors
Symptoms of Hepatitis C
While some people with chronic hepatitis C infection are asymptomatic, others may suffer from a constellation of symptoms. Fatigue, arthralgia (joint pain), myalgia (muscle pain), and depression are the most commonly reported symptoms of chronic hepatitis C; however, the relationship between the presence of symptoms and the severity of HCV disease is unclear (Barkhuizen 1999; Goh 1999; Kenny-Walsh 1999).
Fatigue and musculoskeletal pain are characteristic symptoms of liver disease, especially chronic hepatitis C. Barkhuizen and colleagues reviewed the charts of 239 hepatology outpatients, comparing the incidence of fatigue and musculoskeletal pain among individuals with HCV infection, individuals with HBV infection and individuals with alcoholic liver disease. Significant associations between HCV infection and musculoskeletal pain (P=0.0001) and fatigue (P=0.001) were identified, with 81% of the HCV-infected participants reporting musculoskeletal pain as compared to 56% of those with other liver diseases. Fatigue was reported by 66% of HCV-infected individuals, 30% of those with alcoholic liver disease, and 29% of individuals with hepatitis B infection. No associations were identified between musculoskeletal pain and the extent of liver disease, aminotransferase levels, or mode of acquisition.
There is some evidence that hepatitis C-related fatigue may be linked with psychological factors
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