Hi hepc daughter, I just finished the full 24 weeks of treatment and I didn't feel much better even after the Incivik. It took stopping the riba and taking Procrit to bring my HGB back up before I started feeling better. The brain fog has alot to do with the riba. I hope he gets better soon - It will be worth it...keep encouraging him. - Fred
I'm glad to hear your dad is doing better than what I initially perceived in your first post. Your second post presents a very different picture. No one wants you to panic, but agree to err on the side of caution.
I think many expect the sides to stop quickly after the end of Inc, but based on the number of similar posts, that doesn't appear to be the case for many, some taking a few weeks or longer to begin to see a difference. As you are probably aware, Inf/Riba has their own side effects and challenges. Hope the remainder of trt goes welll for your dad.
I think the reason is that it is better to error in the direction of safe that the other way around.
The rash can become very serious for some, it can develop into Stevens-Johnson grade rash, which is life threatening
In the case I sited the rash became infected and caused a blood infection. When people become that sick, both tired and confused, they may not take action because it is so hard to get to the doctor.
None of us...on this end of the computer can gauge the rash or confusion. But from reading some accounts we know that it is not uncommon that people need to visit the ER during TX.
We aren't trying to make you panic. We just trying to convey that a times for a percentage of people on TX that emergency measures are warranted. I may even be more procative because i know someone who fell into that category. I'm glad that you are looking after your father and that his confusion seems to be sleep related.
best,
Willy
Wow! You guys know how to make someone panic! Let me backup just a little bit. His doctor is aware of the rash, she has prescribed several creams to try to help. Also, he is not confused all the time. He is clear most of the time, I've had conversations about doing taxes, books we've read, ect. So he is able to think and process. I think the confusion is related to lack of sleep, just when he is really really tired.
He is an RN (has been for about 25 years), when I asked about a blood infection, he reported he hasn't had much of a fever, definitely not enough to indicate an infection of that magnitude. He had blood work done about two weeks ago, no viral load, everything else was normal. Seems to think things are getting slightly better in the last two days but slow going.
Vertex is the company that makes telaprevir under the name Incivek. They have, like the makers of Inf & Riba do, a 24 hr hot line 'manned' by a nurse to answer, I guess, specific and general questions centered around their product. hrsepwrguy, fourth comment down, gives the number as 855-546-2483.
What/who is the Vertex nurse?
I am kind of new on here...
I am my friend's "contact," as in i am the one listed if he gets sick, cant make decisions, has to go to the ER, etc. He also lives with me.
I have his clinic #, pharmacy #, but what is this nurse #? Thanks.
I would second the Ribavirin as a possible cause. Its side effect just get worse as time goes on. Would see the doctor asap. Not sleeping will make one half-crazy too.
PS: Ribavirin can also cause severe skin problems:
From drugs.com
http://www.drugs.com/cdi/ribavirin-capsules.html
"Seek medical attention right away if any of these SEVERE side effects occur:
Severe allergic reactions (rash; hives; itching; difficulty breathing; itching; tightness in the chest; swelling of the mouth, face, lips, or tongue); changes in hearing, taste, or vision; chest pain; dark, tarry, or bloody stools; dark urine; decrease in the amount of urine; fainting; fever, chills, or sore throat; hair loss; joint pain; menstrual problems; mood or mental problems (eg, agitation, aggression, anger, anxiety, decreased concentration, depression, irritability, nervousness); muscle pain or weakness; numbness of an arm or leg; pale stools; prolonged nausea and vomiting; rapid breathing; red, swollen, blistered, or peeling skin; severe headache; severe or persistent diarrhea; severe stomach or back pain; shortness of breath; suicidal thoughts or actions; trouble sleeping; unusual bruising or bleeding; unusual or severe tiredness, weakness, or fatigue; weight loss; yellowing of the eyes or skin."
I agree with the rest you should get your dad medical attention asap.
In my opinion, you should call the treating MD tonight and report your dad's symptoms. If he/she cannot be reached, then I think your dad needs to be taken to the emergency room tonight. (Actually, even if you reach the treating MD, I feel your dad needs to be seen by an MD tonight, either the treating MD or an Emergency Room MD.)
Your dad has two major problems right now:
First: He is confused, something which is very serious and can be symptomatic of any number of serious problems (stroke, metabolic imbalance, toxicity, electrolyte imbalance, encephalopathy, mental problem, to name a few.)
Second: Incivek in particular can cause some very serious skin problems and that rash should be evaluated tonight. People can develop life threatening skin reactions while on these meds.
From Drugs.com
http://www.drugs.com/sfx/incivek-side-effects.html
"Seek medical attention right away if any of these SEVERE side effects occur when using Incivek:
Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); change in the amount of urine produced; dark, tarry, or bloody stools; dizziness; fast or irregular heartbeat; feeling cold, especially in the hands or feet; fever, chills, or sore throat; joint pain (especially in the big toe); mouth sores or ulcers; pale skin; rash (with or without itching); red or irritated eyes; red, swollen, blistered, or peeling skin; severe or prolonged nausea or vomiting; shortness of breath; swelling of the face; unusual tiredness or weakness; yellowing of the skin or eyes."
I hope this can all be resolved.
855-546-2483 is vertex nurse 24/7 hotline number
"It is severe, likely to leave scars. He isn't thinking straight, can't remember how to do simple things such as looking something up online."
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This happened to a friend of mine and they had septicemia. They had finished Incivek also but things got worse. Confusion, some edema too. they are still not well months after the event.
http://www.nlm.nih.gov/medlineplus/ency/article/001355.htm
Go to the ER if he is confused. This is serious!! Don't wait and talk to your doctor. If you have his medical records bring them. if you can call the doctor and have him paged to let him know your intentions.
If you are still uncertain i would call the Vertex 24 hour nurse and ask them, but my feeling is if it is septicemia he need immediate attention.
best,
Willy
I agree w/gene-get Dad to an MD immediately! The rash needs to be reported/documented and Dad needs to be able to get sleep aid since sleep is how our bodies heal. Doc will probably want to do a CBC blood test, esp. for mental confusion and re-eval of meds.
Wow, Sounds to me like your Dad needs to see his Dr. A.S.A.P.
Good Luck!!!