Don't let it worry you, treatment is like a roller coaster it has many ups and downs and twist and turns, enjoy feeling good while you can as odds are it won't last through out treatment.......BTW, don't really agree with your doctor.
Wishing you the best
The side effects are different for everyone. Some get very ill feeling after their first shot and then subsequent shot .feel nothing at all like yourself. Others feel different effects as they get deeper in to treatment.
Are you treating with the triple therapy and it sounds like your doctor is somewhat misinformed stating "if you don"t get sick,the meds are not working.Seems a much too general comment.
Always best to be under the care of a knowledgeable specialist in the treatment of HCV especially with the addition of thses new drugs..
Good luck and welcome..
Will
I also disagree with that overly simplistic/incorrect statement.
This is early in the treatment. It is quite common for people to take a shot and say "what's the big deal?"
The sides *can* build some over the weeks and months. From what I see it just varies a lot from week to week and from person to person. Not always much rhyme or reason.
willy
Hi there. I understand your concern, as I have had minimal sides. But I have not seen anything to support the idea of being sick throughout as the only way of "winning." Be thankful for the good days and know that the bad days will come and go. Here is a link to my journal of side effects for the first 4 weeks when I was only on the SOCs:
http://www.medhelp.org/user_journals/show/314332/Side-effects--day-by-day
Every day is a little different. Don't feel bad for feeling good. As long as your Interferon is not leaking out onto the floor, it's gettin' in there. Make sure to do it about a 45 degree angle. To be even more sure, check out the Pegasys website that has a video on how to give an injection.
http://www.pegasys.com/pegasys/injecting/how-to-inject-pegasys.htm
I have been on triple tx for 16 wks, 12 of incivek. I had a shot about 2 wks ago that made me sick in about 15 minutes, and I could taste it. I think maybe I pulled the needle out to soon and got some in a small vein in my stomach. I told my Dr about it because it kind of scared me. I did tx 10 yrs ago and had bad sides but nothing like this. Dont get to uptight about a shot making you sick and another one not. Its not an easy thing to do, and as time goes on you will fing a lot of things that are different from the week before. Not all are bad!! Just different.
My Dr also told me not to inject at a 45 degree angle. Seems like all the Drs have a different idea and it has caused me a lot of greif to get conflicting info. Sometimes I think the Drs should have to do a month or so of int, just so they know for themselves this aint know joke!! Kind of like what law enforcement people do for tasers!!
I was one who said, "what's the big deal?" However, over the weeks, I get progressively weaker and weaker. I actually had a burst of energy today, washed some dishes, did some laundry...
Perhaps what the doctor meant was that treatment WILL make you feel like crap. If it doesn't, you aren't taking your meds. ;)
No, I really wasn't referring to you.
I'm not certain I read your post, it's just that I've read many where people either worried about it being bad, and it wasn't, or wrote that it was like nothing, what was with all the complaining only come to some understanding of what people were talking about after a few weeks or months.
A lot of it has to do with built up expectations that TX has to be a certain way. I've noticed a wide range of results for different people. I have an internet friend who had no sides and cleared, SVR'ed years ago. Obviously, treatment worked for her in spite of the fact that she had few/ minimal/ no sides.
willy
Hey Slideman. I had conflicting suggestions on the angle of the injection too, but ultimately became convinced about 45 degrees. Here is a short slide presentation that explains the 3 different angles, and why:
http://davisplus.fadavis.com/wilkinson2/Animations/animations.cfm?exercise=angle_of_injection&title=Angle%20of%20Injection
It's okay, willy... That's not what I was saying. I was saying that I was one who said that... Not that I was THE one who said that. ;)
Unfortunately it sounds as if you have a doctor inexperienced with HCV tx. It's very common as others mentioned to be quite sick the first injection and not to get for the remaining injections. My first injection was by far the worst and I am SVR.
Don't worry,
Dave
I'm on the triple tx (INC) and took my 5th injection Friday night. I have YET to feel sick from any of the interferon injections. However, I do have side effects from everything else, i.e., skin rashes, fatigue, and and a few others... I'm awaiting my lab results from the 4 week "yea or nay" blood work, but i hate to think that because my side effects are fairly minimal compared to others, that the tx isn't working for me...
I have been on the treatment for 15 weeks today , and with first shot i did not have much of side effects , the 2nd and 3rd felt nothing , other than skin rash which i had even before i started the treatment . I can say it build up to be general feeling of run down and fatigue. I was UND at week 4 and week 12 , I dont really agree with your Dr.
hang on dear and enjoy as it last
Almar.
Well i spoke too soon. This morning I woke up very ill again. Feels like it did after the first shot. Flu like feeling. I have to stay strong and keep doing this treatment. This was week two and hopefully at week 4 I will see some progress and hope the treatment is working. I have not started treating with the new drugs yet. Great news about being UND at week 4 and 12.
Thanks everyone for the great answers.
I'm another one that experienced little or no immediate effect from the interferon at shot #26. However, this has little to do with how you feel as these medication begin to accumuate within your body. Many people will experience some level of fatigue as the weeks progress in additional to other side effects. You just need to adjust accordingly to how your body reacts to the meds. Good luck and don't worry too much.
So your doctors have NOT started you on triple therapy? You are just taking PEG & RBO? Interesting...
Yes just the PEG and RBO. They said after 4 weeks we might start the new drug. But my platelet counts is 60,000 so they are worried what will happen. Feeling really bad right now. My eyes hurt so bad. Anyone had eye pain?
Ranice, I am on the same timeline as you are. I started triple tx on Fri. Oct 7 with my first injection of PEG. I had fairly mild flu like symptoms the first weekend, then a mild rash and itching on Monday/Tuesday (not sure if this was from the ribov.. or teleprevir). I gave my second shot last Friday and had almost no flu like symptoms over the weekend. I'm thinking that, as others have said, it will be up and down. I am staying as active as possible and drinking lots of water. I schedule my meals around the telepravir due to the amount of fat intake necessary, then eat healthy salads, smoothies, etc other times. Hope you feel better. Are you starting the biocep..?? after 4 wks?
I am not sure which drug they want to start me on after the forth week. I am just praying my platelet count stays high enough to treat. I am stage 4 liver disease and will need a transplant one day. I want so much to beat this hep so if I get a new liver it will stay healthy. I am hurting so badly today. Yesterday I thought it was weird I felt so good but I guess it just took longer this time. Have you had any problems with your eyes hurting?
I have had a little, but not too bad. I seem to get a headache between/behind the eyes and a little haziness (kind of like Vertigo, but not as severe). I find if I lay down (which I did alot of the first weekend), I feel worse, but if I keep active I feel more normal. Once I lay down though, it's hard to get motivated to get up and do something.
Enjoy the no sides while they last! If you end up going the full term you will long for a time like that. My first shot I got chills and ran a fever - felt like I had a case of super flu. The shots never effected me like that again but there were plenty of other side effects. The shots would mainly just wipe me out for the weekend but by Monday I would be able to work. This forum has helped me a lot in knowing what to expect - much more than the Drs. tell you. Hope all goes well for you. God Bless
You are not alone on eye irritation, for me the key to relief was to stay away from the light, stay out of the sun, if you have to venture out, I wore a hat and sunglasses and keep my skin covered from the sun. Too much light makes my eyes hurt and my vision goes blurry. i have tried eye drops for dry eyes, but it doesn't help much with the swollen feeling. I think the whole head is really effected because I ache deep in my ears and my tounge swells too and always being thirsty comes along with it...so hydration, as nasty as water sometimes tastes, is a constant struggle and necessity. I can not emphasize enough on the importance of drinking water. This too shall pass, knowledge is the key and you are in the right place to get lots of good advice from all these well researched dragon slayers. Good luck, c
Thank you for the great information about my eyes and thrist. I have felt so bad today I have not drank near enough water. My left feels really swollen. I always worry when I experience something new. It is such a relief to be able to post questions and get immediate responses. My doctor has scheduled my blood draw for November 4th so hopefully I know if this is working.
hi, I am going to be starting my meds very soon on the 27 of this month ,I go to my Dr. to see how to BEGIN.... was suppose to be two wks ago. but, got a call from them and the Dr. needed to reschedule.. (errrr) I was ready (mentally) . but besides this point. Just needed to let all of YA'S know ,how Thankful I am that I found this wonderful site with such tremendous awesome FRIENDS!!! So greatful that everyone shares & stays in contact with all.. so ,,, a great big THANKS...
Best wishes for treatment. Being ready mentally will help a lot. This site has helped me through some very tough times these last couple of weeks. Two weeks into treatment and it has been rough but everytime I have a question or fear I get answers quickly on here. I wish you all the very best.