As stated in the referred thread it's been a scary lonely weight to carry around. A paradox too: Depressed because of fear of the virus debilitating me while (and I apologize for the darkness here) wishing it was all over because i'm tired. In my case I know causes are multidimensional: neurologic, pharmacologic, hepatic, circumstantial, etc. But this C and these therapies with their reprieves and betrayals can be real "prahna" suckers. Where's all the fresh air and seratonin gone? d
1. Is post treatment DEPRESSION something you are experiencing??
Not now. I was still pretty grumpy for almost 3 months post EOT.
2. Is post treatment HAIR LOSS something you have experienced??
Yes, I had hairloss from about the second month during tx until about 8 weeks after. It slowly kept falling out less and less.
There was already some fine hair growing in before EOT. The hair loss slowed and now my hair is growing back.
I remember from the last time I did tx, that first baby fine hair grew in, then it was followed by my normal hair. It takes time.
3. Has your MEMORY been affect post treatment??
Who can remember ??
Personally, having been so sick with encephalopathy and cirrhosis, going through a transplant and being on those meds, getting my energy back while hep C was still raging, and now finally off of tx a second time, how can I possibly compare where I was to where I am now?
Before cirrhosis ? That was many years ago.
Actually I think my memory is doing rather well, all things considered.
My husband is 59 years old, has Cirrhosis, and has failed 3 treatments, most recently triple tx with Incivek.
1. My husband struggled with some depression/anxiety/irritability while he was on treatment. He continues taking the same (fairly low) dose of antidepressant/antianxiety medication that he was taking while on treatment, but doesn't seem depressed or irritable now.
2. My husband did not really have much hair loss during/after his first two treatments, but after ending triple tx treatment, he has some random spots of hair loss.
3. On all 3 treatments, his memory was somewhat poor while on medications, but has been fine after treatments.
Well, I have 3 weeks left before my 28 wk EOT with Triple Tx w/Victrelis, and I did eel some depression set in, last friday. Feeling depressed is very unusual for me, I havent had it since I was a child, so it brought back some unpleasant eelings/memories.
My hair is falling out everywhere, but it doesn't show, because my hair was so thick prior to Tx. I think because o the healthy and organic diet I had been on prior to Tx, and I always took vitamin E, and D, and a ew others, such as folic acid, etc.
My memory was never affected, probably due to the fact that I was only at Stage 2.
Hi Yodennis -- I feel for you. That is a big load to carry on your own (inside). Be sure to let your docs know how you are feeling, so they can help. Sounds like you might need to talk to someone, face to face, so you can exhale. Plus, some meds can lead to the "dark side", so know that it is NOT necessarily you and see what your docs recommend.
OH & Advocate -- Thanks very much for sharing your (and your husband's)experiences. I'm sure it will help others.
Be blessed, be well,
Hi, our posts must have crossed paths, as I am just seeing this. Thanks so much for posting!! Your "f" key may be sticking.
I have been on a clinical trial...Dec 22 to Mar 14. At first it was meant to be for 6 months but I was UND at 2 weeks and they rerandomized me into stopping tx at 3 months.
HAIR LOSS started about 1 month post tx. I had fine thin hair anyway but now I have very thin hair, especially in the front. I am 5 months post tx. Still UND. Hair loss is finally slowing down.
DEPRESSION. I am VERY depressed. I caught a terrible case of chicken pox and I don't know if it is because I have been feeling down and fluey or if it is true depression. Several days I could not get out of bed or got out of bed and went back around 1pm or 2pm. I am also very anxious waiting for the 6th month test. Every fever or ache and I think it has come back.
MEMORY: A little better
depression: yes. I think it's getting a bit better now, episodes are farther apart, don't last as long and aren't as severe....I am 3 months post tx now and my depression started in week 19 (people here helped a lot)
hair loss: that stopped one month post tx (yay)
memory: i have some bad days and have to be gentle with myself...it's getting better though....
No to the first two, yes to the third.
So what are we suppose to do for the DEPRESSION ? I couldn't imagine putting more drugs in my body. For me I'm having stomach problems. Not much foods that I can eat without feeling sick but the good news is I'm undetectable and my doctor says my liver looks good and my blood looks good.
Doctors don't seemed to be able to give us the after care we need. I guess their job is done if they cure us. Wish there was more of a support group of physician set up to help us through the after effects of treatment.
Your stated so well the effects of this disease.
My husband's hepatologist and her NP have been very, very good about continuing to care for my husband between treatments. They continue to prescribe his antidepressant/antianxiety med, they continue to monitor his liver functions every 3 months, they continue to do ultrasounds on his liver every 6 months, and they see him twice a year. Of course, his treatment didn't work, so that may be why they are monitoring him more closely. But in addition to his liver, they monitor the depression/anxiety that having Hep C and having failed treatments cause. In addition to the antidepressant/antianxiety med, they also continue to prescribe a sleep aid for him. If you don't feel that you want to take medications for the depression, you may want to try, if you're not already, to eat healthy/fresh food, exercise, go for a walk daily, make sure you're getting enough rest, and make sure you have social/emotional support. Take care!
Hi advocate, I did switch doctors at the end so the doctor I am using now was not my treatment doctor. He is monitoring me every 6 months with MRI's right now. He seems to rather recommend other doctors then address any physical symptom I have. I will make my next MRI and appt. with him but I think it will be time to find a good gastro who specializes in liver disease but doesn't treat hepatitis as I no longer need a special in treating hep C. I have one pick out but I prefer doctors who use their office for procedures not hospital facilities for insurance purposes. So that is the only thing I have to check with this new gasto I have picked out.
I wish you husband much luck. Don't forget to take care of yourself as well.
i think we all might get a little too anxious post tx...i think a year post tx lots of us will feel way better...i was glad to get off the zoloft..took 3 months post to wean off that stuff...i still feel better all the time in most ways now at 8 months post tx ....billy
I'm still having some anxiety. It's my way of being depressed maybe. Too many thoughts. Yoga n meditation/prayer totally helps. Journaling and exercise also. It's hard to get motivated when you're down though.
Hair is coming in fast, it's just little short baby fine filtered through. Some days there is more loss since tx is finished. Makes me anxious. lol
Memory is coming back. It's another thing that creates anxiety though! When I don't have quick recall, I feel stupid.... and afraid memory will never fully return. Then I wonder if HE is kicking in. Before long I'm picturing a nursing home where I play Pac Man all day because I can't remember how to play anything else. Sigh.
It has gotten better though. I had SO many calendars, lists, sticky notes during tx. I can carry on most days with less of those "work arounds".
You've always been so positive. I know your attiude will help you find solutions, and peace to go with them.
Take care, Karen :)
Well, I guess there was some reason I searched for a thread like this. I'm three weeks away from getting my 12 week post tx blood test, but I've been feeling increasingly glum. My guts seem to feel better, but I am starting to think I'm getting depressed. It's not just work or work-pressure, but I've had negative thoughts like "why am I doing this ..." that kind of thing. It seems surprising yet hopeful that many people post tx are feeling the same. Glad this thread is here.
As you know, it takes a long time for the drugs to leave your body entirely so you are probably still having some effects from the drugs. It is possible that these feelings will lessen as time goes by and the drugs get out of your system. However, only you know how you are feeling and to what degree. If you think you are feeling depressed, you may wish to talk with your doctor about it.
Another thing that is probably playing into how you are feeling is the anxiety over the 12 week VL test. I can guarantee you that those of us who have finished treatment all experienced major anxiety over that 12 week post EOT VL test. It is major. We have everything riding on that 12 week test and we all fear that it may show a Detectable status. Anxiety can cause depression. So this may be another reason that you are feeling glum and have some negative thoughts.
Hang in there. You are a CC. You were UND at week 2 this time around. That is an excellent predictor of success. Most likely your 12 week post EOT will be Undetectable. Wishing you SVR.
Also wishing you well. Glad you found this thread.
In addition to replies here, in case you aren't aware, a new Hepatitis C: Post Treatment Issues Community forum was created last year. Since it's only 3 pages at this time, browsing topics that may help you doesn't take much time.
The Post Treatment Issues forum deals mainly with post treatment issues that persist "longer than 6 months after finishing treatment." While there may be some helpful information there for all who have treated, the main purpose of the forum is to have a place for people to post and discuss long term post treatment issues as opposed to side effects that are still lingering the first few months following treatment. The Post Treatment Issues would include issues that people had prior to treatment and that do not go away with treatment and also issues that treatment may have caused or exacerbated. Examples may be Cirrhosis issues, Autoimmune issues, other problems that do not go away after 6 months following the end of treatment.
Here is the description of the Post Treatment Issues forum:
"About This Community:"
"This forum is for those who have taken HCV treatment, and have been off treatment for at least 6 months, to discuss any lingering or new health issues that may have been caused by the Hepatitis C virus itself or may be related to treatment for Hepatitis C. Some examples are autoimmune conditions, previous medical conditions exacerbated by the virus or the treatment, liver damage, and inflammation of the joints."
Thank you for that clarification "About This Community:" as I neglected to click the i link to read it. Learning something new (even occasionally re-learning) every day helps the spirit. I did notice a depression issues post there. I read it now - that affected someone almost 2 years after treatment.
too late to edit or remove but at least it may help to point someone there after 6 months post treatment or refresh their memories.
Thank you for the reference to the Pot Tx Issue, I had lost the link, I appreciate you sharing.
Dee just so you know the link is on the right side of the Hep C forum under Related Forums...
Thank you Candy man :) You are always so nice, I appreciate very much :)