Aa
new to triple therapy
I am four days in triple therapy(Int.Riba.Inc) I've already have sever rash that is both stabbing and itchy, bowels are in an uproar and general malaise and I also yelled at my husband today (I don't do that) is this normal so early in treatment?
Background: 55 yo female prior treatments x 2, lung cancer, hep c stage 3/4
Any comments would be apprciated. Thank you
Background: 55 yo female prior treatments x 2, lung cancer, hep c stage 3/4
Any comments would be apprciated. Thank you
I just read your other post.
Do not let anyone tell you that you will not make it. Believe me, where there is a will there is a way. We are very strong and we can rise to the occasion as necessary. What you need to get you through this treatment is support, not discouragement. You will make it. We are all making it. The goal is cure and we all keep that in mind and most of us put up with crummy side effects to get there.
This forum is not only wonderful for accurate information, it is also a very supportive group of people. You are not along. You have this entire community standing with you and ready to give support, answer questions, etc.
Do not let anyone tell you that you will not make it. Believe me, where there is a will there is a way. We are very strong and we can rise to the occasion as necessary. What you need to get you through this treatment is support, not discouragement. You will make it. We are all making it. The goal is cure and we all keep that in mind and most of us put up with crummy side effects to get there.
This forum is not only wonderful for accurate information, it is also a very supportive group of people. You are not along. You have this entire community standing with you and ready to give support, answer questions, etc.
Welcome to the forum. It's a great forum with many very knowledgeable and helpful people and tons of accurate information.
You are not a baby. Your symptoms are perfectly normal for someone on treatment with Interferon and Ribavirin. It is definitely NOT in your head. Whoever said that is grossly mistaken. And the side effects can start almost immediately. If you think about it, we are taking very strong and very potent medications. They have a lot of side effects. Those side effects can kick in shortly after starting the meds.
The first day I took my meds I was spaced out, light headed, weak, and felt very weird. My vision was also off. The next day I felt like I had been hit by a Mack truck. Some of that stabilized after a while, but other side effects appeared to take their places, LOL.
The side effects do vary from person to person, some with more severe side effects and some with minor or few side effects. The side effects also come and go and change day to day and week to week.
Most people feel fatigue of some degree (some feel very fatigued and others feel somewhat fatigued). Many have no energy and no motivation.
Dry mouth is very common, even when drinking a gallon of fluid a day. I always keep water next to me no matter where I am going. Otherwise I can barely swallow because my mouth is so dry. Nausea and no appetite are also very common.
Just from experience and from being on this forum with other people in treatment, I can tell you that these drugs have a ton of side effects. Another common side effect is "brain fog" and that basically encompasses not thinking straight, doing weird things like putting the postage stamps on the wrong side of the envelope or trying to make a phone call with the TV remote control, inability to recall words that one normally uses in a conversation, lack of concentration (a lot of us cannot read a book on treatment), memory problems, etc. Muscle fatigue and aching are common too.
Just so you can get an idea of how many side effects these drugs have and how common they are, go to the following site and scroll down to the table of side effects.
http://www.drugs.com/sfx/ribavirin-side-effects.html
We really cannot do much about most of the side effects. Perhaps Tylenol for headaches or aches. Loperimide and/or fiber for diarrhea. (Check with MD first.)
However, the most troublesome side effects like rash, nausea and/or vomiting, anemia, neutropenia, depression ... can all be treated with prescription medications and they should be addressed and treated ASAP because they can rapidly snowball into much larger problems if not addressed ASAP.
So, you are perfectly normal. Join the crowd. This is a great group and a great support for most of us. We know what you are going through. There is no way anyone who has never done Hep C treatment can even begin to fathom the scope and intensity of the side effects. So please post questions, concerns, side effects, etc. and we will respond.
Best of luck with treatment.
You are not a baby. Your symptoms are perfectly normal for someone on treatment with Interferon and Ribavirin. It is definitely NOT in your head. Whoever said that is grossly mistaken. And the side effects can start almost immediately. If you think about it, we are taking very strong and very potent medications. They have a lot of side effects. Those side effects can kick in shortly after starting the meds.
The first day I took my meds I was spaced out, light headed, weak, and felt very weird. My vision was also off. The next day I felt like I had been hit by a Mack truck. Some of that stabilized after a while, but other side effects appeared to take their places, LOL.
The side effects do vary from person to person, some with more severe side effects and some with minor or few side effects. The side effects also come and go and change day to day and week to week.
Most people feel fatigue of some degree (some feel very fatigued and others feel somewhat fatigued). Many have no energy and no motivation.
Dry mouth is very common, even when drinking a gallon of fluid a day. I always keep water next to me no matter where I am going. Otherwise I can barely swallow because my mouth is so dry. Nausea and no appetite are also very common.
Just from experience and from being on this forum with other people in treatment, I can tell you that these drugs have a ton of side effects. Another common side effect is "brain fog" and that basically encompasses not thinking straight, doing weird things like putting the postage stamps on the wrong side of the envelope or trying to make a phone call with the TV remote control, inability to recall words that one normally uses in a conversation, lack of concentration (a lot of us cannot read a book on treatment), memory problems, etc. Muscle fatigue and aching are common too.
Just so you can get an idea of how many side effects these drugs have and how common they are, go to the following site and scroll down to the table of side effects.
http://www.drugs.com/sfx/ribavirin-side-effects.html
We really cannot do much about most of the side effects. Perhaps Tylenol for headaches or aches. Loperimide and/or fiber for diarrhea. (Check with MD first.)
However, the most troublesome side effects like rash, nausea and/or vomiting, anemia, neutropenia, depression ... can all be treated with prescription medications and they should be addressed and treated ASAP because they can rapidly snowball into much larger problems if not addressed ASAP.
So, you are perfectly normal. Join the crowd. This is a great group and a great support for most of us. We know what you are going through. There is no way anyone who has never done Hep C treatment can even begin to fathom the scope and intensity of the side effects. So please post questions, concerns, side effects, etc. and we will respond.
Best of luck with treatment.
Side effects are different for everyone, including when you get them. Baby? You are on some powerful drugs. Just make sure you are drinking lots of water and get some mild exercise even if you have to force yourself, I am not on the same treatment you are, but I lost my appetite on day one, not even joking. Again, I can't stress enough, drink plenty of water and get exercise, it really really does help reduce side effects. You will get plenty of help here; any side effects you get, just post them, you will receive receive plenty of responses.
I am new to all this. I am on day 6 of ribavirin & interferon. The other med I don't start til i'm a month in. Maybe it's nerves or maybe I'm crazy, but I already feel bad. Is this normal? Nausea, no appetite, dry mouth, and all I want to do is sleep. Someone close to me said that it's in my head. They said there is no way I should already be feeling like this. Someone please tell me......is all this in my head or has anyone else felt this way? Am I just being a baby???
I just finished week 14- still shaking the last of the Incivic symptoms which includecd the same extreme skin and nerve reactions that you mentioned. I have a very high pain tolerance, but the itching, stabbing pains, and rashes became almost intolerable. The closer I got to the 12th week the more intense the symptoms became - to the extent that quite uncharacteristically I sought medical help at midnight on a Saturday night.
My symptoms started late in the first week of the treatment and they steadyly increased in the common varieties ( rash/ stabbing pains/ rectal irritation/ headaches/ change of taste/ receding gums/ mouth soresThe symptoms were inconsistent at first, but after the first month they became predictable and I'm cautious to say - managable. . I was blessed that my primary reactions took place at night which allowed me to work through the treatment. But it came at a price. Around 8:30pm every night the "stingers" would show up and after a long night of ice packs, running cold waterome over affectied areas, about 4am they would fade allowing me to try to sleep for what routinely became about 2 hours of sleep per night which lasted nearly two months. At the mid-point labs my liver scores weree elevated but I was virus undetectable. Last night I had my first eight hours sleep in over two moths. I'm now two weeks out from my last inciv dose and a majority of the Nasties are gone, just the old low grade headaches and lack of energy.
I'm going to see the treatment through and I'm expecting a full healing and restoration. If I had known how extreme the side effects were I wjould have wiated for an alternative treatment option. These side effects were too extreme and based on my experience I'm concerned for potential long-term effects on my body which could be more harmful than the disease I'm trreating. Your experience could be compmletly different - and I wish you the very best!
My symptoms started late in the first week of the treatment and they steadyly increased in the common varieties ( rash/ stabbing pains/ rectal irritation/ headaches/ change of taste/ receding gums/ mouth soresThe symptoms were inconsistent at first, but after the first month they became predictable and I'm cautious to say - managable. . I was blessed that my primary reactions took place at night which allowed me to work through the treatment. But it came at a price. Around 8:30pm every night the "stingers" would show up and after a long night of ice packs, running cold waterome over affectied areas, about 4am they would fade allowing me to try to sleep for what routinely became about 2 hours of sleep per night which lasted nearly two months. At the mid-point labs my liver scores weree elevated but I was virus undetectable. Last night I had my first eight hours sleep in over two moths. I'm now two weeks out from my last inciv dose and a majority of the Nasties are gone, just the old low grade headaches and lack of energy.
I'm going to see the treatment through and I'm expecting a full healing and restoration. If I had known how extreme the side effects were I wjould have wiated for an alternative treatment option. These side effects were too extreme and based on my experience I'm concerned for potential long-term effects on my body which could be more harmful than the disease I'm trreating. Your experience could be compmletly different - and I wish you the very best!
I agree with Pooh. You should be seen in the emergency room right away.
Advocate1955
Advocate1955
Please call the doc now. If you cannot get in touch with him, then you should go to the emergency room very, very soon. The description of your symptoms could be an allergic rection. Your tongue may be swelling (from the reaction) which is why it feels like it is difficult to swallow. Tightness in chest is also another symptom. This may be very serious. You need to seek help now. See the warnings below for severe side effects. It says:
Seek medical attention right away for these severe side effects: Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue);
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.
http://www.drugs.com/sfx/incivek-side-effects.html
Rash developed most often during the first 4 weeks, but was reported at any time during telaprevir combination therapy. Rash improved following the completion or discontinuation of telaprevir; however, rashes have taken weeks to completely resolve.
Rash events led to discontinuation of telaprevir alone and telaprevir combination therapy in 6% and 1% of patients, respectively.
Dermatologic side effects have included rash (56%) and pruritus (47%). Severe rash (e.g., generalized rash or rash with vesicles or bullae or ulcerations other than Stevens-Johnson syndrome) has been reported in 4% of patients and may have a prominent eczematous component. Serious skin reactions, including drug rash with eosinophilia and systemic symptoms (DRESS) and Stevens-Johnson syndrome (SJS), have been reported in less than 1% of patients. Presenting signs of DRESS have included rash, fever, facial edema, and evidence of internal organ involvement (e.g., hepatitis, nephritis), with or without eosinophilia. Presenting signs of SJS have included fever, target lesions, and mucosal erosions or ulcerations (e.g., conjunctivae, lips).
I hope everything turns out okay for you.
Seek medical attention right away for these severe side effects: Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue);
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.
http://www.drugs.com/sfx/incivek-side-effects.html
Rash developed most often during the first 4 weeks, but was reported at any time during telaprevir combination therapy. Rash improved following the completion or discontinuation of telaprevir; however, rashes have taken weeks to completely resolve.
Rash events led to discontinuation of telaprevir alone and telaprevir combination therapy in 6% and 1% of patients, respectively.
Dermatologic side effects have included rash (56%) and pruritus (47%). Severe rash (e.g., generalized rash or rash with vesicles or bullae or ulcerations other than Stevens-Johnson syndrome) has been reported in 4% of patients and may have a prominent eczematous component. Serious skin reactions, including drug rash with eosinophilia and systemic symptoms (DRESS) and Stevens-Johnson syndrome (SJS), have been reported in less than 1% of patients. Presenting signs of DRESS have included rash, fever, facial edema, and evidence of internal organ involvement (e.g., hepatitis, nephritis), with or without eosinophilia. Presenting signs of SJS have included fever, target lesions, and mucosal erosions or ulcerations (e.g., conjunctivae, lips).
I hope everything turns out okay for you.
Thank you all for responding...Woke up this morning rash is wide spread-two different types one is chicken pox looking and the other is linear welts and have white tongue and feel that something is in my throat making it difficult to swallow.. will be calling md today because of tightness in chest and rash...with hx of lung ca i have to be really careful...will let you know what md says...
My husband got the Incivek rash during week 1 or 2 of treatment and it lasted about 5 weeks, moving from one part of his body to another. It included severe itching, redness, some welts, and some small blisters. It was described as moderate.
His NP prescribed Hydroxyzine HCL 25 mg,1 – 2 tablets every 6 hours as needed, and Triamcinolone 0.025% OINT, twice per day as needed. In addition she suggested that he use Eucerin cream and Eucerin body wash. We also found that tea tree oil was helpful on the blisters. Sometimes it helped to stand outside in the cool air or in front of the open freezer door. Avoid hot showers and sun. Avoid harsh detergents and soaps.
Later in treatment (about week 12 and 13) he had the "pins and needles, tingling, twitching, stabbing feelings in the skin" sensations, but it went away. I think this may be a type of neuropathy that comes and goes with the Hep C treatments, so if it continues I would suggest asking your doctor about Gabapentin.
I posted some information in my journals with suggestions from all forum members:
http://www.medhelp.org/user_journals/show/333004/Incivek--Ideas-for-Managing-Rash
Advocate1955
His NP prescribed Hydroxyzine HCL 25 mg,1 – 2 tablets every 6 hours as needed, and Triamcinolone 0.025% OINT, twice per day as needed. In addition she suggested that he use Eucerin cream and Eucerin body wash. We also found that tea tree oil was helpful on the blisters. Sometimes it helped to stand outside in the cool air or in front of the open freezer door. Avoid hot showers and sun. Avoid harsh detergents and soaps.
Later in treatment (about week 12 and 13) he had the "pins and needles, tingling, twitching, stabbing feelings in the skin" sensations, but it went away. I think this may be a type of neuropathy that comes and goes with the Hep C treatments, so if it continues I would suggest asking your doctor about Gabapentin.
I posted some information in my journals with suggestions from all forum members:
http://www.medhelp.org/user_journals/show/333004/Incivek--Ideas-for-Managing-Rash
Advocate1955
I am sorry you are experiencing these symptoms so early in treatment.
It is unclear how bad your rash is from your description/post. With Incivek is is very important to keep a very good watch on any rash that appears. The Incivek rashes can be just normal rashes but in a very small percentage they are quite severe. and require stopping treatment.
If your rash consists of red bumps or spotsscattered here and there or localized in a small area, then try the hydrocortizone creams and benadryl (with docs okay). If those do not work, call the doc and get a prescription for fluocininide ointment and hydroxyzine (or something similar). The prescription meds are stronger and ften people do need them.
If your rash covers most of your body, runs together, has blisters or ulcers, then go to the emergency room (if you cannot reach your doctor).
Look at these photos and compare your rash to them (and how they are described and also what should be done).
http://www.incivek.com/hcp/assess-and-manage-rash
The important thing to realize is that, even though it is rare, a severe rash can be very, very serious and can lead to life threatening problems and must be address immediately.
Regardless of what you decide today, call the doctor tomorrow and let him/her know about the rash and how sevre it is.
It is unclear how bad your rash is from your description/post. With Incivek is is very important to keep a very good watch on any rash that appears. The Incivek rashes can be just normal rashes but in a very small percentage they are quite severe. and require stopping treatment.
If your rash consists of red bumps or spotsscattered here and there or localized in a small area, then try the hydrocortizone creams and benadryl (with docs okay). If those do not work, call the doc and get a prescription for fluocininide ointment and hydroxyzine (or something similar). The prescription meds are stronger and ften people do need them.
If your rash covers most of your body, runs together, has blisters or ulcers, then go to the emergency room (if you cannot reach your doctor).
Look at these photos and compare your rash to them (and how they are described and also what should be done).
http://www.incivek.com/hcp/assess-and-manage-rash
The important thing to realize is that, even though it is rare, a severe rash can be very, very serious and can lead to life threatening problems and must be address immediately.
Regardless of what you decide today, call the doctor tomorrow and let him/her know about the rash and how sevre it is.
Working Dog: Great story about the "fly" and "spider". The treatment meds can send the nerve endings into hyperdrive. I could actually feel static electricity moving/crawling across my legs! Whenever I moved the bed covers I generated the static electricity "pins." Ouch! Switching to cotton bed sheets helped. Ambien helped sleep through the pain. The real solution ended up being a neuropathy drug, which completely eliminated this symptom.
P.S. I also agree with Sentinel, Gabapentin. , it is for stabbing pain and it works. The other was a prescription for Hydroxyzine
Also was given promethazine for nausea. They are both antihistimines so can dry you out.
Try to drink as much water as you can
Billy good job sharing
Dee
Also was given promethazine for nausea. They are both antihistimines so can dry you out.
Try to drink as much water as you can
Billy good job sharing
Dee
Hi there, so sorry your are feeling bad so soon. The treatment (tx) is different for everyone however there are things you can do to limit the problem
I had to take a prescription drug for the itching, this was after I tried everything else, creams gels for itching benedryl, etc. Before I got something from the doctor I used cold wet wash clothes to try to calm it down. I would put them in the freezer. The other options was scratch every where.
It was a difficult tx for me though I finished up at 24 weeks and am close to a month away from it. I am sure others will stop by and offer suggestions. I hear that oat meal baths can help
Good Luck, best wishes
Dee
I had to take a prescription drug for the itching, this was after I tried everything else, creams gels for itching benedryl, etc. Before I got something from the doctor I used cold wet wash clothes to try to calm it down. I would put them in the freezer. The other options was scratch every where.
It was a difficult tx for me though I finished up at 24 weeks and am close to a month away from it. I am sure others will stop by and offer suggestions. I hear that oat meal baths can help
Good Luck, best wishes
Dee
some of us on triple have really tough symptoms..i'm done with tx now but here's a kind of funny thing that made me realize tx might be tough for me..sometime in the second week i was up in bed on my laptop where most of my tx ended up...i felt a fly on my arm...walking around...i was really worn out so i let it walk around hoping it would just fly away...it didn't so i got the energy up to shake my arm and it went away..then it went to my other arm..moving up and down and again i shook it off..then i felt it climbing up my leg and thought it must be a spider...and i just don't kill spiders..so i tried to move to get the spider off...finally i got up the energy to put the laptop down and look for the spider...there was no spider...no fly...it was just a feeling on or in my skin...............anyway...i did get the rash early...and did get the burning butt early...the butt stuff wasn't bad after the third week...the rash was always really bad...even after the incivek...the laying down on fiberglass feeling stayed with me until almost 3 months post tx...i'm thinking because i drank so much water making my blood so thin it didn't look like human blood so that maybe just plan gravity would allow my blood to move into my capillaries and push against nerves creating the feelings right under the skin that drive you nuts...when ever i laid down it was awful..i blamed it on mostly laundry detergent .... my girlfriend said she rinsed everything really good...after tx and i could think straighter i realized the awful feeling of laying down on insulation or the feeling of being bitten by a swarm of no see ums was probably caused by thin blood combined with low hgb...i hope you get cbcs every week ...keep an eye on the blood work..anyway the rash and the itching from fiberglass feeling are two different things...both are nasty symptoms.....hang in there the inciveck works great...good luck...billy
Your mention of a Partner"stabbing rash" caught my eye.
I never experienced the rash typically described with therapy.
What I did experience was the feeling of being poked with pins -- hundreds of them -- mostly at night -- mostly on my legs & ankles -- very painful.
The solution to my condition was a neurological drug called Gabapentin.
I never experienced the rash typically described with therapy.
What I did experience was the feeling of being poked with pins -- hundreds of them -- mostly at night -- mostly on my legs & ankles -- very painful.
The solution to my condition was a neurological drug called Gabapentin.
Hi and welcome:)
Four days into treatment I got the rash on each elbow. All of the OTC creams did not work for me, (like hydrocortisone) I had to get my doctor to call in something called fluocinonide cream. (They also have oitments) My rash is completely gone after about of week.
I have learned so much from the people here, they are wonderful. For all over itchyness they have said Oatmeal baths are good..which really helps with the anal stuff. The past couple of days I have taken a bath right after going. (Of course cleaning first with scent free sensitive wipes) The bath help so much..you don't even need the oatmeal. They make aveeno suppositorys I have been told are good. vaseline, desitin and hemroidal creams work well too. keeping it clean is a must. I have been told that water soluble fiber is good to bulk stools up it will burn less. it has to be water soluble so it does not bind with your meds.
Yes its perfectly normal to feel some rage, sadness and depression anytime on tx. If it gets to the point where you feel it is out of your control consider an anti depressant.
I hope this helps:) I started triple therapy a couple weeks ago and have had a lot of ups and downs. The people here are wonderful. Joining this forum is a great thing you did! Good luck and well wishes,
Laura
Four days into treatment I got the rash on each elbow. All of the OTC creams did not work for me, (like hydrocortisone) I had to get my doctor to call in something called fluocinonide cream. (They also have oitments) My rash is completely gone after about of week.
I have learned so much from the people here, they are wonderful. For all over itchyness they have said Oatmeal baths are good..which really helps with the anal stuff. The past couple of days I have taken a bath right after going. (Of course cleaning first with scent free sensitive wipes) The bath help so much..you don't even need the oatmeal. They make aveeno suppositorys I have been told are good. vaseline, desitin and hemroidal creams work well too. keeping it clean is a must. I have been told that water soluble fiber is good to bulk stools up it will burn less. it has to be water soluble so it does not bind with your meds.
Yes its perfectly normal to feel some rage, sadness and depression anytime on tx. If it gets to the point where you feel it is out of your control consider an anti depressant.
I hope this helps:) I started triple therapy a couple weeks ago and have had a lot of ups and downs. The people here are wonderful. Joining this forum is a great thing you did! Good luck and well wishes,
Laura
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