Pegasys and Copegus side effects

[Rockedbyrequiem]

Hello everyone.
Im so glad I found this forum. I am about to start treatment with Pegasys and Copegus, and I was wondering one thing....Does anyone know what percentage of people on this treatment experience hair loss? Ive read a lot and hair loss seems to be a pretty common side effect. But just how common is what Im wondering. I believe I can handle the other stuff (Flu-like symptoms, depression, etc). Its the hair loss thing that really has me worried. Oddly enough, I have shaved my head since I was 12. BUT, there is an obvious difference between someone shaving their head and someone who is losing their hair. Plus Im worried about my eyebrows and the hair over the rest of my body. Is there anyone here who has done the treatment and not lost their hair?
Thanks in advance,
Graham

[HepCTn]

Try not too worry I know that's impossible. Be as good to yourself as you can. YOU CAN DO THIS. I did not think I would make it I was a vain shallow female with natural 38DDs when my immune system started dropping I developed an abcess on my right breast. The Lord sent a lady to me the other day and she had breast cancer. Her reconstruction failed and now they can't help her. She has horrible scars. I mentally slapped myself because if she could be positive with those scars. I can be positive with my scar. Plus they are survivor marks and after this treatment you will feel like a warrior and of course I believe us all to be warriors.    My eyebrows did not fall out at all. My bottom lashes thinned but the top lashes are as thick as ever. It's odd and affects everyone differently. You will feel like crap some days look worse than crap but when you get that first clean blood test it will give u strength.

[HepCTn]

My hair thinned starting the late 4th or early 5th month of treatment. It was long so I cut it shorter and layered it. The worst part is finding hair in your food and it will cause you to itch like crazy. My bed looked like a cat sanctuary and was very disturbing but it has slowed down though still coming out some and I have 2 weeks til my treatment is finished. I did not go totally bald but I thought I would and my poor family worried theirselves crazy picking all the hair off, the best part is I have had two clean hep blood test the virus is gone I was blessed with 2b and I mean blessed because my gastro guaranteed me a cure so far he has delivered. I have had other complications low white count, high triglycerides almost pancreatitis, sick every day for 6 months but if this crap stays gone it's worth it. I haven't missed a dose and won't. I loved using the pegasus clickers so easy . I hate needles ironically and seeing that syringe hanging out of my stomach made me sick. I caught it from my husband of 15 yrs so don't let anyone bull **** you. It can be caught that way especially through anal sex which we used to do until he got religion. Stay strong, meditate or pray whichever works for you. I have had riba rage so badly I am ready to fight all the time furious doesn't describe it. The dr put me on 3 1mg xanax daily. I still have problems and I cry about everything kids dying of cancer make me cry for days. I think if I make it through all of this I want to be selfish. A lot of time I would let other people decide where and what we did movies restaurants. Now if I want Mexican I am going. Simple things like going swimming or visiting somewhere for a week end where I am not looked at like a ******* leper. Good luck all. God Bless. I pray He keeps his healing hand upon us.

[pjhep80]

i didnt lose any hair at all...

[Rockedbyrequiem]

Thank you everyone for your help. I have decided to go ahead and give the treatment a shot. I will be getting my first injection next wednesday. And during the first few months I will be seeing my Dr every other week so I will have plenty of opportunity to discuss with him all the questions I have. I figured it cant hurt to give it a shot. Especially since I read on here that even people who are in better shape than me do treat it. So, if it becomes too much I will simply stop.

[kickboxingmom]

Hello and welcome to this forum.I take it from what you said, earlier in your post.

I am genotype 1. From what I gather, I believe I am probably stage 2. He did tell me there was some scarring. So if I am indeed stage 2, does that mean I could afford to wait for this new treatment coming in 2010-2011? .

I beleive I am probably stage 2.
I would call your Dr. and ask for a copy of your biopsy report.Or get permission to pick your report up at the hospital or where ever you had it done at.Then, like people above have told you, take it from there.It just seems to me you are unsure what stage and grade you are because your Dr. has not explained it to you.If I'm wrong, delete this post.

Once you have paper in hand, post the results and I'm sure the more experienced people will help you solve ALL your questions.

P.S. We all deserve to be on the pitty pot for a little while.
Again Welcome ,
Tammy

[Trinity4]

They generally do not recommend another liver biopsy for at least three years.  Some say 2 years, but I think it's safe to say if you are at stage 2, yes, you have time to wait for the new drugs.  If you do wait for the newer drugs, you will need another biopsy by 2010 - 2011.  If you were to enter into a trial,  they would probably want you to have another biopsy prior to treating you but there are different guidelines with different trials.  I would continue to have regular monoriting of your liver enzymes and there are other non invasive tests your doctor can perform which will indicate the health of your liver.  
Treating is a personal decision.  Some treat regardless of the damage to their liver, others take a watch and wait approach but you MUST be monitored by a competent doctor.  The treatment drugs can be brutal, both physically and mentally.  Depression has never been a problem for me, but the physical side effects have been very difficult.  
See a good doctor, get all the facts, and make your decision based on what is best for you.
Trinity

[Rockedbyrequiem]

Thank you so much. I am genotype 1. From what I gather, I believe I am probably stage 2. He did tell me there was some scarring. So if I am indeed stage 2, does that mean I could afford to wait for this new treatment coming in 2010-2011? As far as my doctor, I think you are right. He practices hepatology but is really a gastro dr. Also, do you think I should have another biopsy to see what condition my liver is in in comparison to a year ago?. And lastly, I am completely aware of the psychiatric side effects. It took over a year for my psychiatrist to deem me mentally stable enough to undergo the treatment. On the Wellbutrin and Seroquel, Im pretty much as good as Im gonna get being clean from opiates. So I think Im ready to battle that aspect of the treatment. Other side effects, Im not so sure of myself.

[Trinity4]

Stage 1-Inflammation
Stage 2-Early Fibrosis-some scarring
Stage 3- Severe Fibrosis- more extensive scarring
Stage 4- Cirhossis

You really should find out from your treating physician what your biopsy indicated.
If you are not at stage 3, you have time to wait for treatment with close follow up. Stage 3 and above are advised to treat sooner than later.  It doesn't sound like your treating physician has alot of experience with hepc patients because he did not give you enough information to make a sound decision regarding treatment.  If it were me, I would gather all my medical records and find a good hepatologist or an experienced GI who has treated many with hepc.   Do you know what genotype you are?  Genotype determines length of treatment.  Genotype 1 and 4 treat a minimum of 48 wks.  Genotype 2 & 3 treat 24 weeks.  
Also, because you have a history of depression and are currently on Wellbutrin and the anti-psychotic Seroquel peg interferon and ribaviron can exacerbate yout existing condition.  There are warnings on the medication guides that clearly state psychotic episodes can occur, and this is especially true for those with a history of depression and given the fact you have had it all your life.  You have to be monitored very closely which is why you need a competent doctor who can recognize if your depression is worsening.  
My advise is find another doctor, read as much as you can about hepc and treatment.
Several good websites are janis7hepc.com and hepcadvocate.org.
Good Luck
Trinity

[Rockerforlife]

From what ive been reading .women seem to be the ones losing their hair as opposed to men...am i right in the assumption?...i shaved my head just in case

[Rockedbyrequiem]

I did have a liver biopsy about a year ago (Shows how long this process to get me started has taken), and all my doctor told me was I had some fibris (Is that correct?) tissue on my liver and that it would be a good idea to do treatment. And honestly, now that Ive found out how much more to this there actually is, Im not happy with my doctor. I mean, if I can live 30 or 40 years without the treatment, its not really woth it to me to do it. Im so overwhelmed right now.

[Sonflower]

Regarding: "Hair Loss"

I have an auto-immune Thyroid Disease.  My entire adult life I have always had and still do have very long hair.  And every time the doctor would change my thyroid meds I would experience hair loss.  My doctor and hair dresser told me to take "Evening Prim Rose" it is a natural oil supplement, it comes in soft gel capsules.  I take 1 or 2 1300 mg daily.  (I purchase mine at Henry's Natural Foods).  It take about 2 to 3 months for you to notice a difference, but it really works great if taken faithfully!  

Of course make sure to check with your doc to make sure it is OK to take with your other medicatiions.

I recently had a Complete Thyroidectomy, I was so freaked out about losing my hair.  It has been nearly a month....  My hair is dry but not thinning as of yet.

Hope this works for you, as it has worked for me and others I know, good luck!

[epiphiny]

There are a lot of knowledgeable people here who are going to give some very informative answers to your questions!

If you are considering waiting for new treatments that are in the pipeline then it is essential that you have a biopsy to find out the grade and stage of any liver damage you may have.  Based on those results you will be better able to make an informed decision as to whether to treat now or take the watch and wait approach.

[Rockedbyrequiem]

I understand what youre saying. I believe I can handle the depression because Ive dealt with it my whole life. Not something you want to have to "Deal with", but Ive yet to find a medication that gives me back my energy and motivation to get out of bed and do something. Im on Wellbutrin and the anti-psychotic Seroquel. They help, but not like I wish they would.
And now....Since Ive been reading around this forum, I realize my doctor has not told me everything he should have. I have no clue what my stage and grade are. Never even knew there was such a thing. Plus, I read that there is a new treatment coming out in 2010-2011, which has a much higher success rate. It has me wondering whether I could do without until then. Especially since I have genotype 1, which only has a 45-50% success rate on the treatmen. 45-50?? Is it even worth going through what Im gonna have to deal with?

[epiphiny]

Hi, I'm on week 26 and I'm doing ok with my hair.  It has thinned out a bit but I'm not losing clumps or experiencing patches of baldness.  The treatment drugs have quite a dehydrating effect on your body including skin and hair and so I have found that most of my thinning has been a symptom of dryness and brittleness. Also, it continues to grow albeit at a slightly slower rate than pre tx.  Best thing to do is to treat the dryness from the inside by ensuring you have adequate fats and oils in your diet (this will also help with your riba absorption) and that you keep hydrated. In addition to the above I have avoided using chemicals on my skin and hair since I started tx and this has really helped with skin sensitivity and itchiness.

Incidentally, this is my 2nd tx and on the first round I didn't do any of the above and lost quite a significant amount of hair.

All the best!!

Epi :)

[Trinity4]

Week 33 and I have lost 1/3 of my hair.  Pretty common side effect.  Hair loss is really the least of your worries.  You say you believe you can handle the physical and emotional side effects but worried about hair loss. My fellow hepper, as you get into treatment, each day presents it own type of challenge. Expect the unexpected. You must mentally prepare yourself.   As your treatment process continues, concentrate on what is really important, keeping yourself going, not the superficial stuff like hair loss.
Good Luck -  Don't sweat the small stuff!!
Trinity