They say the first injection is the worst.
Did you take tylenol with the shot? If not, you probably should.
You probably will not experience all of the side effects. It just so happens that most of the side effects you have are pretty common on treatment. Hopefully, you won't get the rare ones.
I think your reaction to the first inj. can be considered within the normal. Some get more symptoms than others, but yours seem to be within normal range. I agree with OH. Take a tylenol or 2 when you take your injection and maybe one the next am. I always do. I think the injection sides got better after the first one, but I still feel like I have the flu (fatigue, malaise, aches, etc.) for a couple days afterwards.
Bowels: You are on Incivek. Keep the stools firm with loperimide or something else. If they get soft or loose, they will really be painful. Keep the rectal area supper clean by washing every time or using Huggies baby wipes. Use Prep. H supp. and Prep. H cream if necesary. Drink lots of water.
The rash, I am concerned about that from your description. You need to call your treating doctor first thing in the morning (today if you can) and tell him/her about this rash. Most, or at least many, of us have a rash and itching with Incivek and/or Riba, but most of us have red rashes (of varying degrees), not blisters, and not blisters over the entire body. Incivek can cause a very severe rash with potentially extremely severe consequesnces. I don't want to scare you, but Incivek rashes can be very, very serious and you need to seek medical attention sooner rather than later in these cases. I don't really know exactly what you look like and how bad the rash and blistering are, but you may want to go to the emergency rom if you cannot reach your doctor. Be sure they know you are on triple med treatment with Incivek.
"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."
"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)."
Also, just as a side note, over the counter meds are probably not going to be sufficient with your rash. You will most likely need prescription meds and ointments.
My main point here is: Do not ignore this rash and the possible seriousness of it. You really must get in contact with your doc and tell him/her what is happening as soon as possible and you must go to the ER if necesary.
I wish you the very best.
Here are some good photos and descriptions of mild, moderate and severe rashes. Also they offer some good information.
ok totally bummed out. it seems i do have the type of rash that warrents discontinued use. im so pissed!!!!!!! i will contact my dr in the am. i pray that i am wrong but it is blisters filled with fluid along with the red patches. i,ve completely just lost all hope.
Serious Skin Reactions
Serious skin reactions, including Drug Rash with Eosinophilia and Systemic Symptoms (DRESS) and Stevens-Johnson Syndrome (SJS) were reported in less than 1% of subjects who received INCIVEK combination treatment compared to none who received peginterferon alfa and ribavirin alone. These serious skin reactions required hospitalization, and all patients recovered. The presenting signs of DRESS may include rash, fever, facial edema, and evidence of internal organ involvement (e.g., hepatitis, nephritis). Eosinophilia may or may not be present. The presenting signs of SJS may include fever, target lesions, and mucosal erosions or ulcerations (e.g., conjunctivae, lips).
Rash developed in 56% of subjects who received INCIVEK combination treatment [see Adverse Reactions (6.1)]. Severe rash (e.g., a generalized rash or rash with vesicles or bullae or ulcerations other than SJS) was reported in 4% of subjects who received INCIVEK combination treatment compared to less than 1% who received peginterferon alfa and ribavirin alone. The severe rash may have a prominent eczematous component.
Patients with mild to moderate rashes should be followed for progression of rash or development of systemic symptoms. If rash progresses and becomes severe or if systemic symptoms develop, INCIVEK should be discontinued. Peginterferon alfa and ribavirin may be continued. If improvement is not observed within 7 days of INCIVEK discontinuation, sequential or simultaneous interruption or discontinuation of ribavirin and/or peginterferon alfa should be considered. If medically indicated, earlier interruption or discontinuation of ribavirin and peginterferon alfa should be considered. Patients should be monitored until the rash has resolved. INCIVEK must not be reduced or restarted if discontinued due to rash. Treatment of rash with oral antihistamines and/or topical corticosteroids may provide symptomatic relief but effectiveness of these measures has not been established. Treatment of rash with systemic corticosteroids is not recommended
In controlled clinical trials, rash events (all grades) were reported in 56% of subjects who received INCIVEK combination treatment and in 34% of subjects who received peginterferon alfa and ribavirin. Rash most frequently began during the first 4 weeks, but could occur at any time during INCIVEK combination treatment. Improvement of rash occurs after INCIVEK dosing completion or discontinuation; however, rashes may take weeks for complete resolution.
Rash events led to discontinuation of INCIVEK alone in 6% of subjects and discontinuation of INCIVEK combination treatment in 1% of subjects.
my first shot was by far the worse...by the third shot ...very little fever...as time went on in tx the interferon was worse later and later in the week...but still i wasn't that bad on the interferon until week 16 or so...then i could really feel it...not fever but like a poison was too strong in my body...i still did full dose 180...by mid week 17 i got very sharp pains in the back of my eyes a few days after the shot....then they went away for a week...mid week 18 same thing..this time on and off sharp eye pains for maybe 3 days...by week 19 the pains a few days after the shot were very sharp...lasted longer...theses pains would buckle you right over...went to retina specialist .compared before tx eyes to this eye exam and pulled me right off tx...fortunately i'm still und as of 9 weeks post tx....i think eating the incivek on time with fat is very important....not missing one dose of it..i did have to stop the incivek at 11+ weeks ...but never missed a dose of it...or the interferon....the riba i had to cut down a couple times...in the start of my tx was a lot the same as yours ...bad first shot..lots of fever...then rash like you had..although my rash was not on my ba**s...or on my face...the edges of my mouth were starting to get sore and the burning ah...then by week two...my hgb was really dropping fast...the rash was nasty...i was itching so much...blood in bed every night throughout tx...my lower back and legs will always have some scars...i really don't care much about scars anyway....the loose stingy poop was pretty bad from mid week 1 through week 3..and then gone...no more...still poop rarely was totally normal but not one of my bad sx...i ate lots of fat to make sure the drugs were working...at first ice cream...then butter on pancakes and bread or anything...when i looked up severe incivek rash pictures on the net mine were right in there...the really bad rash i could hide and would...i hope you continue to do the best you can...the incivek has worked for many that get through it..my advice is talk with your doc about when her/she will bring in rescue drugs..like procrit for low hgb....or any rescue drugs...they can really help...make sure to understand your blood work or post it here..there are folks on the forum that know so much and will help....do cbcs at least once a week...and make sure to tell the folks close to you that tx can make you say things that are off the wall...maybe really mean things...i'm calm but still took an ad....glad i did...got a little snappy but not bad...my np said to my gf and i "it looks like you guys did alright..thats good".and it was....she was great help...she did everything for me...i was very lucky that way..you may not have bad symptoms...but you might...keep an eye on that blood work..keep drinking pure water....take it easy.....good luck...billy
I knew my post would not be good news, and I am really sorry I had to say what I said. But do not give up hope. I have not seen your rash. I was just posting information based on your description of the rash so you would know to look for the danger signs and also so you will be sure to contact your doctor ASAP.
Personally, I think your doctor needs to see you so he/she knows exactly the type and degree of rash you have. Don't let them put you off. Insist on being seen by the doctor tomorrow. Doctors (and nurses) ofter think patients are exaggerating or they just don't realize how severe it is because they are not seeing it. They need to see the rash to realize how widespread it is and its severety. You may/probably will need to be referred to a dermatologist (again, to be seen ASAP).
I am no expert on rashes but it is possible, with the right care and treatment, they could get it under control so you can continue treatment. I don't know that answer.
I also don't know what the other options might be (if you have to discontinue Incivek). It seems to me one person on the forum switched meds (either Vic to Inc. or the other way around) due to some problem. I do not remember the details but I believe no one on the forum had heard of doing that before, so it is not routine for sure.
The other option (if you have to discontinue Incivek) would be to try to get into a trial with some of the new meds currently in Phase 3 of a trial. You would need to research a trial thoroughly because I don't think you would want to be in the placebo arm of a trial considering your biopsy grade 3 and stage 3.
Please don't give up hope. There is always hope. Also, you do not know for sure that you will have to discontinue the meds.
In addition, stay on the forum. There are several extremely knowledgeable people on this forum who definitely have a lot more information and guidance to share with you than I have. Hopefully some of them will chime in soon.
Please keep us informed of what happens. We are here for mutual support as well as sharing information.
well thank god for my wife. she has been a lab tech for over 30 years and has informed my that my rash is a simple no vesticle, ulcerated type. they looked like blisters to me but its just raised skin. i tried popping one but couldnt. thank god and thank god for my wife. =) i feel foolish now. she was at work this morning and just got home for me to show her. thanks for all the info i guess im just a little jumpy. i so need this tx to work as im sure every body else feels the same. i guess my biggest fear is to have to discontinue tx for some reason or another. can we say paranoid? lol shwho!
You did the right thing. Posting here when something is bothersome is what got me through treatment. I did the same thing with jumping to conclusions as well!! The whole thing is not easy for most of us. I would still let my Dr know about this and any other thing that seems unusual for you as time goes on.
Good Luck, and never give up!!
No questions or concerns are foolish, especially when taking these potent medications.
I would still call the doctor tomorrow and try to get seen because if you have a generalized rash from heat to toe, you still need some medication to treat and control it. The over the counters are probably not strong enough. I developed a bad rash about week 10. The over the counters were useless. I got a prescription for fluocinonide ointment which actually worked, both for the rash and the itching. When I saw the derm docto she gave me Hydroxyzine which I take every night before bed. I take Zyrtec every am. I also have a presciption for Clobetasol soln. for my scalp. (I cannot put that oint,ment in my hair, lol.) I still have the rash. It gets better when I treat it but then it moves to a new spot or several new spots. However, those meds are keeping it under control.
You are definitely not alone in being afraid that you will be taken off the meds for any number of reasons. I think all of us are. The fear is justified, in my opinion. We don't have a big array of options in front of us so we really need this treatment to work. (Right now, I am concerned about my rash, but so far it is more or less under control and it is just red bumps, no blisters or open spots.) I think one thing that is very important is to keep ahead of and/or on top of any side effects you get. They tend to snowball if one lets them slide very long. (Some docs need to learn this too, lol.)
I will give you a heads up. When you have your 4 week labs (viral load)drawn you will probably be very anxious until you get the results. I was and I think we all were/are. Every lab (viral load) we get drawn we are on pins and needles until we get the results, it seems. It helps some to figure out some method to keep ones anxiety down, especially since it won't do any good to worry. I am a bit more relaxed now when I have labs drawn (my 20 week lab will be tomorrow), but i still do worry some. I guess I will worry until I get my 24 post treatment viral load and that won't be for another year, lol.
The forum is a great place for support. Lots of good people here.