I'm sure your not the first or the last to find this treatment overwhelming. This is no walk in the park or was it on my bucket list either. Your post reflect lots of side effects and you were looking at treating for 48 weeks.
I'm sorry it didn't work out for you
The Best To You
good luck with everything....you might beat the hep anyway...i did 19 of 48 and still svr...i could feel the interferon in my head at about 16 weeks and by 19 weeks blood vessels were breaking and that was the end for me..it may take some time to feel better...hope you don't get too anxious....i feel great now post tx but that took a while....
I am sorry that you are going through all of this and that you had to go through all that you did. I know you had a lot of side effects during treatment. I know some people on the forum have had various degrees of emotional and/or mental difficulties while on treatment. They are side effects of these drugs. I am not sure anyone on the forum had to stop treatment, but some in the literature did have to stop treatment due to emotional/mental side effects.
You had many side effects. You tried your best and that is all any of us can do. I am hoping that you are beginning to regain your strength and health and that you will continue to do so. There are new drugs in the pipeline and you will be able to treat with one of them in the future.
Hang in there. Regain your strength and health. Come to the forum for more support. Keep us posted.
Best of luck to you in the future and with the future treatment.
Linda, did they do am end of treatment viral load test. I know you did not clear the virus early, but it is important to know what it is at the end of treatment. You need to know if you ever cleared the virus.
If you did clear the virus, it is possible you may remain UND. If you did not clear the virus, you still need to know that. This may be important if you want to get into a trial or when you treat with the new drugs.
I had it happen in 2000. My thyroid gland quit working at some point during SOC treatment, but hadn't been monitored by the incompetent doctors at KU Medical Center. My TSH (thyroid) numbers were extreme, but I don't remember the specifics because it was so long ago. The hypothyroidism was discovered by the good doctors in my hometown. Whether it was my thyroid, the interferon, or the riba, no one knows. What I do know is that I suffered a form of psychosis that I wouldn't wish on Hitler. I was hospitalized and tried very seriously to find a way to die. I've never had any type of mental illness before or since that incident. Thankfully, after discontinuing treatment and taking Synthroid for my thyroid, I regained my sanity within a month. I've never written about this because I didn't want to scare people and I knew the reaction I had to treatment was a rare occurrence. I write about it now in case this information may be helpful to you or someone else who may be having a complication similar to what I experienced.
Do you know why they are waiting to check your VL? They should have checked your VL the last day you took your meds or the following day after your last does. I looked at your previous posts. You were in week 22 of Tx but, as far as I can see, you have never been UND. You were DET at week 12 but I don't see any test after that. On Feb. 28th you stated you were still DET.
They should have drawn a test when they stopped the meds to see if you were DET or UND when they stopped the meds. If you are DET on April 1, you will not know if you ever became UND and that may be important to know for future Tx.
Perhaps you could get a VL test ASAP, like tomorrow, so you will know.
I was just released from the hospital 2 days ago for coming so close to a complete nervous breakdown. I developed aplastic anemia with racing heartbeat , peripheral neuropathy, and had begun the first stages of kidney failure coupled with a severe UTI. Dr. took me off the meds & said to conitnue with only one or 2 of the medications would be useless. So far I have been UND since week 4 & I'm praying constantly that it stays that way.
Sorry to hear that. My emotions are all over the place. I am not depressed and I am doing this because I love life and want to live a long one but sometimes I will start crying for no reason. I am short tempered sometimes. I have a "No Soliciting" sign on my door and I gave Jehovah's witnesses hell for not respecting that and knocking anyway and told them to go away and slammed the door in their face. I hope that I don't have a breakdown.
Best wishes to all of you who are having a tough time due to current or past treatment. Even after the difficulties I suffered, I 'm thinking it may have been worth it, even without a sustained response. The 3 months of SOC I did endure may have bought me time I needed with a compensated liver to wait for new treatments. Please make sure your doctor is monitoring things like your thyroid and electrolytes and call the doctor right away if you start to have hallucinations or delusions.
I tried to send you a PM but I'm new to the board so I may have goofed up the process. Bottom line with the thyroid, just make sure they monitor your TSH levels throughout treatment, which it sounds like they are doing since it is part of your blood panel. Most doctors know enough to do that, but mine didn't and it caused me complications that could have been easily corrected if it had been discovered.
Dear Linda, I am so very sorry to hear what happened to you.
I had a horrible medication reaction after finishing the Incivek. I am a bookworm but could not read or write, could not speak for 2 days, thought I was having a stroke.
It turned out to be the medications I was taking with Incivek which I should not have been. It took me 3 weeks to even out. I did not stop the tx, I did not know what was happening.
Also my TSH was way off at the same time, I think it was 17.5. I did normalize but those 3 weeks were hell.
Hang in there, I am hoping you feel better every day as I did
I wanted to come back and say that if it had not been for my husband I would have called 911 and ended up in the hospital when I had such an awful reaction. He took my blood pressure and pulse and declared I was having some kind of panic attack which we later learned was a reaction after finishing the Incivek, it had blocked some medications and increased others which was causing my troubles.
Can any of you work while on this treatment? My husband is going on it on Monday 4/1 and I am so afraid of what is going to happen to him. He was successful in 2005 when he was on the pegasys/copegasys treatment. He is a salesman, not a physical job, but mental and again, I am so afraid of losing our home, etc if he cannot work. We have no short term disability insurance bc he is not insurable due to his medical history with this disease. It will be the first time on this incivek and the horror stories I am reading here are frightening to me. He is not too computer saavy so he has not been on any blogs. I don't want to show him this as he is trying to be positive. I'm freaking right now
Many people do work while on treatment. Some cannot work while on treatment. Your husband won't know until he starts treatment how he will do. However, he has already treated in the past with Interferon and Ribavirin and you said he did okay. That is a good omen. It is usually more difficult when Incivek is added in as a 3rd drug, but still, many people did work through treatment.
I treated with Incivek. My advice to your husband would be to:
*Drink plenty of water, at least a gallon a day;
*Eat at least 20 grams of fat within 30 minutes prior to taking his Incivek;
*Set alarms and timers so he does not forget any of his every eight hour doses of Incivek (which must be taken on time);
*Keep his buttucks extremely clean by using a brand name baby wipe;
*Control diarrhea with loperimide (over the counter) if okay with his doc;
*Keep the stools very firm (if they get soft they will be painful and burn, but if kept firm they are not much problem);
*Get on top of any rash immediately with prescription steroid ointment and cream and with prescription antihistamine (hydroxyzine) (the rashes can and will snowball out of control, so they need to be addressed immediately);
*Rest as much as possible;
*Don't schedule or plan extra activities for evenings or weekends
*Get hard copies of all lab results and test results
*Keep an eye on the Hemoglobin and ask the do if the doc is planning to give Procrit if the Hemoglobin drops
*Also ask if he will get Neupogen if the Neutrophil count drops
*Discuss an antidepressant if he has a history of depression or get on one immediately if he gets mental/emotional symptoms from the drugs
Another thing that helped me immensely is that I never, ever considered quitting treatment an option. It never occurred to me to quit. Treatment was no picnic. In fact is was pretty bad. But I never considered quitting. I am not saying that some people do not develop severe side effects and have to quit. Some do. Some have severe psychological symptoms or severe anemia or severe skin reactions, and those people do have to stop treatment. But for most of us, treatment is doable, and we can get through treatment if we just set our minds to it and stay on top of the side effects. We just put one foot in front of the other and keep on going. If side effects came up, we posted and figured out how to cope with them. We just figured out some way to stay on treatment. I think that is key, figuring out what we can do to stay on treatment and then keep going. I also used little mind games to help. I would count down, 1 week down, 2 weeks down, then 1 month done, then 1/4 done, then 1/2 done, on the home stretch, etc. Whatever it takes, no matter what it is, if it helps get us through Tx, great.
I am sure your husband will do fine. Just post here is he has side effects. Many of us have been through Tx and we have many remedies.
Just for the record, I did Interferon, Ribavirin, and Incivek, 48 weeks of Tx. I attained SVR last month.
Pooh's comments are exactly right. I would only double down on the hemaglobin comment. For me, I could tell right away when it dropped because I got very weak in the thighs. Could not hardly walk up stairs. I did not get tested for anemia (hemoglobin) right away and that was a mistake. I think if I took Procrit right away; it would have been easier. So at the first sign, get a blood test and if the hamoglobin is below 10, get some Procrit.
I agree about the hemoglobin. I had weekly blood counts the entire time I was on Incivek so any drop in hemoglobin was caught right away. It drops fast in some people and more slowly in others. But one wants to know if it is dropping fast.
Pooh has given really good advice. There are people who do not have as hard a time as others.
Many on here worked during tx.
I had a hard time, so my doc says, because I have cirrhosis so it made it harder to treat
I am now SVR and very happy I did the tx. Your husband won't know until he starts how he will feel.
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