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1916367 tn?1325215554

Trying so hard not to cry...

I am early in my treatment and already feeling awful. Very weak, tired and just plain sick. I woke up today with a lovely rash on both arms. I look in the mirror and can't stand what I see. I feel like just a gross human being. I am writing on this because I need to talk to someone who understands without bothering my family with anymore. It gets hard hearing "everything will be ok" when I feel like I am coming out of my skin and want to cry. Sorry for rambling on...
38 Responses
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1856494 tn?1340542614
You have lessened my fear, loneliness and pain.  Now where else can someone get all that for nothing.  I am amazed and inspired.  You good people are noble and kind while mired in such difficulty.  I am so proud to be one of you.  Thanx.
Helpful - 0
1927056 tn?1323495939
ramble my friend.  I know this sounds like bs, but there is light at the end of the tunnel.  you get to stop this after a while and typically, any of the side effects wane.  I too felt like crap during the first 4-6 weeks, had a rash and was tired, especially the day or two after the shot (i aimed it for friday so I could veg for the weekend).  
once everything got settled, other than the butt problem, my body seemed to acclimate, the rash went away, the tired went away.  
hang in there, eat healthy food, rest when you feel like it and drink a ton of liquid, like iced decaf green tea to flush all the chemicals out.
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Avatar universal
''I woke up today with a lovely rash on both arms.''

If you are taking Telaprevir make sure you show the rash to the hospital as soon as possible. These rashes can be very serious.

Yes the treatment Peg-Inteferon and Ribavirin is very hard at first but for me after about a month I started feeling less sick. These were replaced by other symptoms .... rage, breathing problems due to lowering of Haemoglobin  caused by ribavirin, depression, psoriasis and a few others I can't think of now.
Unfortunately, though the virus was non detectable after 3 months, it was back again 1 year later (3 months after finish treatment)

I am presently 12 weeks through the same treatment with one added drug Telaprevir , this 3 fold approach means that the virus was not detectable after 4 weeks which is a good sign. Telaprevir is not without it's side effects, apart from also lowering haemoglobin it can effect the skin ... a massive problem for me is having a shower .... everything is fine in the shower but once I dry myself I get attacked by this crazy itchiness that I've not experienced before which lasts 20-30 mins. It only affects  upper body and arms but has in the end made me a bit hydrophobic and I would rather inject the interferon than have a full shower ..... I have to wash bits at a time !!      I have just stopped Telaprevir (12 week course, on the other 2 for another 9 months)  so I'll give it another week and brave the shower again.

Sorry for rambling on, OP when your family say "everything will be ok" they are trying to comfort you but also speaking the truth, you will feel better before you finish the treatment as your body gets used to it and when you finish the treatment you will quickly be back to your old self. It may seem a long time but if you are anywhere near my age, well you know how the years fly by.

Very best of luck, stick in there.
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184420 tn?1326739808
suck it up hang in you can do it
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317787 tn?1473358451
Thank you so much for posting, I thught I was going crazy, now I know my hgb is too low, going to doc tomorrow, rescue drugs?
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1491755 tn?1333201362
Good luck to you.
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1768199 tn?1323617936
Prozac is not contraindicated for use with Incivek.  It's kind of a moot point since you've finished the 12 weeks of Incivek.  

Hang in there and take care of your anemia,
Sherry
Helpful - 0
317787 tn?1473358451
Thank you so much, yes I just found out that my HGB has dropped lower.  I started out with a healthy 14.8 (high for a woman) then dropped to 10.;7. it was a difficult transition.  Then last week it was 9.9  I can barely move right now
I think he might think that because I finished the Incivek at the 12rh week that now my body will balance out with just the riba and peg.  If he is wrong I need a rescue drug which he said he would give me.  I have a call in to his office
I can not express enoug how much I appreciate each and every response.  I can barely think so can no longer understand the proscribing information.  That was why I asked what I had done wrong.  I thought I was supposed to stop Incivek at 12 weeks and continue on with Peg and Riba which I am doing.  I did not expect to feel worse after stopping the Incivek, I am not a doctor but do have a call in to mine.  Last night I thought that I might be having a stroke.
I am very grateful for this forum as this all hit after my last dr appt
Thank you again, you have helped me very much
Helpful - 0
Avatar universal
Sounds like you're anemic.  I think it might be a good idea to ask your doctor for Procrit.
Advocate1955
Helpful - 0
317787 tn?1473358451
Hi I am on prozac, and am wondering if there is anything on that being contraindicated.  I give my doc a list, gave the pharmacy a list of everything I was on.  Now I am checking on my own
Thank you
Dee
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Avatar universal
Sounds like a good time to get approval for procrit. Insurance will approve it when HGB goes below 10.  You HGB can drop quickly and getting procrit in place is wise, it can take awhile to work and get auth.  I needed procrit and neupogin to get through treatment.  There is no way to "pretty it up"  treatment is very very hard.  My best advice is to take each day as it comes.  Weekly labs, and stay involved in all treatment decisions.  Anemia is very common in those of us treating especially during the 12 weeks of triple.  Good luck to all of us.
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317787 tn?1473358451
Thank you all for posting I am having the same problems and it really helps to know that this is part of the tx.  Thanks God for this forum
When I went to doc on Wednesday I asked him what was happening to me and he said he did not know but it seemed to happen to everyone of his patients and I just have to tell myself that I am having side effects from medication
My HGB is down to 9.9 from a normal of 14.8
Thanks again,
D
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1768199 tn?1323617936
Are you on any kind of antidepressant?  Upping my antidepressant dosage while I'm on treatment has helped.  Then at 14 weeks after starting treatment, I started feeling really sad, easily hurt and just off emotionally.  My doctor added 2.5 mg of Abilify and I feel better. I'm still quick-tempered but I don't lash out at those around me.

Hang in there; it's worth it.  

Sherry
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Avatar universal
Hello .. It's horrible what u going in through the first shot the worse for me now at almost week 20 the shot doesn't touch me much .. U kind of get used to .. It's the pills the ******* !! Sorry for my language .. They make u so low and depressed .. The shot if u lucky and doesn't make ur get anemia or low white cells .. That after the fourth shot I thought I was going to die .. I felt so low my white cells went so dangerously low that I could hardly stand up I had to stop the treatment for a week till the cell went up .. In the beginning I was so depresed and sick that I lost so much weight I didn't reconigse myself .. Now after eating like a pig for a few weeks I put some weight on and started feeling better much better .. So my advice is too be as positive as u can be and eat eat and eat .. I know it's bloody hard but for me has made such a different ., now I have to deal more with mentally stuff .. My life it's hard ... Anyonelse it's too .. I know we are going through a hard time but at least we are not alone !! I feel like crying everyday and feel sorry for myself only my family and real close friends know about this ., and they most away from in another country it's gets lonely so please talk to me when you feel like it .. We could even cry toguether if that is what we need to do .. So take care and check me any time !!
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Avatar universal
Roostermom, you mentioned that you are treating with Incivek and taking the antidepressant Lexapro.  My husband's doctor switched him from Lexapro to Citalopram right before he started therapy with Incivek.  She said that Lexapro is contraindicated with Incivek.  Please check with your doctor on Monday morning about this.
Advocate1955
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317787 tn?1473358451
Hello, welcome, I understand exactly how you feel.  It will get better.  Try to do searches on here to get information from people more knowledgeable.  It is hard work but as Hector has said ESLD is worse and makes Hep C look benign.  NYGirl7 did 72 weeks of tx and she has been SVR ever since.  Andiamo has been clear for over 3 years and he was on TV the other day.
There are so many wonderful people here who will help advise suport and just be here for you.  I would try to search a little

@All thank you all for your input, it is all vital to us getting through tx
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Avatar universal
This is my second time trying to get rid of this virus. The first time I was very, very irritable, but did not take n anti depressant.

This time I am only doing 6 months with the Incevik. By the first or second week I was also having a crying fit because I felt so awful and it was so early in the tx! I called my doc and she prescribed Lexapro and I have been fine since, and do not have any of the irritability issues.

I only have 2 more weeks to go!
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789911 tn?1368636783
sorry your not feeling well.  I did inc so I dont have any experience vic but reports seem to be similar.  Put your seat belt on and hang on.  When I started I thought by week 5 I would never make it.  I felt sooo bad.  But now I am in week 31/48 and things are going much better as far as physical symptoms.   I needed rescue drugs to level things out.  Now mentally, things are all over the place  My family is use to me now and just roll their eyes or joke with me,  I just keep marking off the weeks. I pray that you will find a comfortable place to continue on and that sx will level out for you soon.  Best wishes    Lydia  
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Avatar universal
Hang in there, On my second treatment plan, with ribaviran, and interferon, i had an uncontrollable crying fit, just out of the blue, It gets better, and will be worth it, when you beat this thing.  I also looked pale, and had some hair loss, but did manage to go to work almost every day.
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Avatar universal
Haha. I know how you feel.  At times I felt like every cell was a humming.  I have not had that intense feeling for a long time now.  I am on week 16 now.  Keep your eye on the goal.  Count the weeks to each check point, week 4 victrelis.  Then week 8 viral load, etc. And then SVR.
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1916367 tn?1325215554
Wow, I cant believe all these responses. Thank you everyone for taking the time to make me feel better!!! (Its working!) I am only in week 3 and will start victrelis in about 2 weeks from now. I think I was just shocked at how fast this stuff started kicking my butt! I told my family that I am pretty sure I glow in the dark now!! Its sooo nice to talk with all of you...Thank you all
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1752451 tn?1313407962
Hang in there same thing happened to me early tx it leveled out after a while.....It will get better!!!!! one day at a time next thing you know tx over.......Mike
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665963 tn?1360723554
Ramble on!  Everyone here can relate to what you are going thru.  Just get stubborn and don't give up.  The treatment is very temporary.  Keep your eye on the goal.
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1652596 tn?1342011626
you can whine all you want here.  we're here to help you get thru because we've been there.  i remember when i first started in june my arms looked like alligator skin.  i use gold bond lotion in the green bottle with the red cap.  it's worked great for me.  hopefully you'll get more used to tx.  remember to drink LOTS of water.  it helps.  take care.  belle
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