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Post Info TOPIC: recently diagnosed with hep c
thalethea


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RE: recently diagnosed with hep c
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Karen,

I'm not on promacta. They are trying the prednisone first to see if that helps. My dr. talked about a drug specifically for raising platelets as a last resort. She said it was very expensive, I'm not sure if Promacta was what she was referring. It scares me that they are so low. I think the only reason I was feeling more hopeful was that my platelets went up. I'm afraid with them being so low, it scares me more that they've dropped so much in the past couple weeks. I thought I was getting better, at least with that.

I have good days and bad days and very bad days. I ignore my symptoms and try to push through the aches, pains, fatique, the bruising, the nausea and the acid reflux from the gastritus. I work in retail management. I won't say it's easy because I'm on my feet 10 hours a day 5-6 days a week. I think the most difficult thing is the rashes that I break out in. I'm not sure if its eczema as diagnosed by a dermatologist pre hvc and itp or related. It feels like mega poison ivy, big white welts that are red and swollen and extremely itchy. Any ideas? I think the worst of all of this is the uncertainty and frustration. I just want to have energy, and feel better.

I find myself pushing people away because they are so worried about me, and making such a fuss. I'm irritable and then guilt sets in... Then depression.... Emotional rollercoaster? lol

 

I don't even know that much about my hep c yet. Just that my VL is 895k... It's all just frustrating me because I just want to get better. I feel like this is all I can and should focus on right now. I don't have the energy to do much else anyway. And I know I'm only 29, but getting better sooner than later is important to me being that I do want a family some day... I also supposedly have polycystic ovarian syndrome which affects my reproductive abilities... And the older I get the more difficult it will be to start a family.... LOL I sound like a house episode hmm



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Tiffany
britlitkaren


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Darn girl! You're hurting, aren't you? Did they put you on Promacta? That'll raise em up fairly fast.

I always wondered why they held off on transfusion when the platelets got that low. My doctor said it was better if they built up on their own, so they try meds first.

Please keep us posted. I've been in a similiar situation. You're going to be all right. xo Karen:)



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Diag 8-10. 1st VL 600,000. Gen 1a. Grade 4 Stage 4 cirrhosis w/ Esophogeal varices level 2. Viral load 1,750,000 7/12/10. Triple Therapy w/ Telaprevir began 7-15-11
thalethea


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Thanks everyone! I appreciate your thoughts and advice. I unfortunately could not get the biopsy done today. I was checked in, ready to be wheeled into the or and the dr. ordered a last minute platelet test just to make sure I was safe, and my platelets dropped down to 41 from 68 two weeks ago

So onto the prednisone to see if that can kickstart my bone marrow.



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Tiffany
Loopy Lisa


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Hi Tiffany,

I had a biopsy a few weeks ago (my first), and it really is not that bad. The best thing about it is you will know how your live is truely doing. I can't even see anymore where the incision was. It is sore for a few days, and there is a little ache in your side and shoulder for a day, but after that you forget about it. I suggest bringing a book to read, the worst part is laying down for hours in the hospital, a little boring to say the least. Good luck x



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Genotype: 3b

VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 
mallani


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Hi Tiffany,

A liver biopsy is not a big deal- I've had three, with no problems. When you get the results you will be able to decide whether to wait for the new DAA's. With your platelet problem, you really don't want to be taking Interferon. At your age, you will probably have very little fibrosis so waiting will not affect your chances of SVR. Good luck with the biopsy.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
thalethea


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Tomorrow I go for my liver biopsy. My family is making a big deal about it. I am not too sure why. I can't really change the results. I don't know, maybe I'm just a little numb right now.

 

Tiffany



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Tiffany
mallani


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Hi Tiffany,

You've certainly had your share of problems! The steroids should kick your platelets back up.

HepC progresses very slowly in most people and hopefully your biopsy will show little damage. The current triple therapy with Incivek and Victrelis can cause problems with blood counts. I just completed 48 weeks of triple Rx with Victrelis. At the start my Hb was 15.8 and my platelets were 248,000. At the end of Rx, my Hb was 7 and platelets were 28,000. That was 9 weeks ago, and the levels are now getting back to normal.

I only mention this as the current antiproteases may cause problems for you. The new antivirals don't seem to cause as many blood count problems, so hopefully you can wait for them to be approved by the FDA. I'm sure you can wait a year or 2 without affecting your chance of SVR. Good luck.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
thalethea


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Thank you everyone for the warm welcome I really am glad that I fould this support. I'm currently seeing a hematologist as well as a GI specialist who also specialized in hep c. I will take all of the advice I can get. I appreciate it all. I'm just glad I'm finally understanding why I've had the symptoms I never even considered symptoms. When I was a teenager I was diagnosed with pcos (poly cystic ovarian syndrome) which can throw off hormone levels and I chalked up all of my fatigue, exhaustion, insomnia, Iabdominal, joint, back aches and pains to that diganosis. I had a blood transfusion when I was born in 84 and I'm pretty sure that is where I became hep c positive. I honestly was very overwhelmed for the first couple of weeks, and maybe now I'm quite possibly in shock because I'm just trying to look at the bright side that there is lots of hope and optimism being that it is treatable.

I started steroids tonight to try to kick up my platelets. So I guess this is step one, getting my platelets into a safe zone to look further into options and treatments once my biopsy is completed.

I know there is a lot of research, trials and medications being introduced and released, and I also have read a lot about current treatments. I know I may have the option to wait, but is it foolish for me to not want to wait and to consider current treatment plans? Since I was a teen, I've been very tired, nauseated at times, had aches and pains for no apparent reason and I break out in pretty bad rashes, which a dermatoligist looked at and decided was eczema, which now I'm also questioning. I'm always tired, and it is really affecting my life, and my career which is very fast paced, being that it is retail management. I'm aware that the side effects associated with the treatment can be very brutal and with the anemia and itp, it will be challenging.

I guess the best thing to do is wait and consider my options. Knowing which genotype and the extent of damage to my liver may be the ultimate deciding factor. But if I can wait, is it worth it? I'm afraid that if I wait, and my viral load increases, my chances of going into remission will be lessened.... Or does it not work that way? I also want to start dating with the intent on settling down while I can still build a family.



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Tiffany
mallani


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Hi Tiffany,

I missed the itp from your original post. Forgot my comments about a Haematologist- I'm sure you've had enough advice about the ITP. Cheers.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
missycat


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Hi Tiffany,welcome from me too, you get alot of support here it really helped me get thought the hepc treatment. i notice you have itp (Idiopathic thrombocytopenic purpura)....my little girl has the same condition her platlets have been as low as 1, if down the line you decide to have treatment they will  keep a close eye on your platlet count, but remember 1 thing at a time you ve come to the right place aww xxx



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Lift the hearts of those around you, share the goal that's in your sight. Keep strong, if i can do it anyone can! tx finished virus free :))))
Cinnamon Girl


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Hi Tiffany, welcome from me too!   I`m glad you found us, you`ll find so much information here and lots of friendly support as well.  Give yourself some time to get your head around the diagnosis, it comes as quite a shock to most of us to find out we have the virus.  But remember it`s very treatable, and new and more effective medicines are coming along in the pipeline.  Once you know your genotype and have the results of your biopsy you`ll have a much clearer picture of the best way forward.

I hope your other health problems are resolved soon, the severe anemia must have made you feel very poorly.  Stay in touch, and feel free to ask questions, we`re here to help! smile  ~ Jill



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
mallani


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Hi Tiffany,

Welcome to the Forum. This is a great Support Group with members from around the world, all Genotypes and good advice. You will need to know your Genotype and the results of your liver biopsy before treatment is discussed. You are young so should have little liver damage, and you can probably wait for the newer treatments, currently being trialled. Your blood counts are very low, and I doubt whether this is due to HepC. You may need to see an Haematologist to sort that out. Keep us posted, and good luck.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
thalethea


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Hello everyone,

I am new to the forum. I was recently admitted to the hospital with a severe case of anemia, itp and my platelets were as low as 41k, my rbc and wbc were low, and I had a bad case of gastritus. Through a lot of tests, I was diagnosed with chronic hep c. My viral load is 895k. I am awaiting my liver biopsy. I have to be put on a medication to raise my platelets before that happens. Then we will talk treatments. I have a lot of unknowns and a lot of concerns. That's where I'm at. I've looked for support groups within my area but they all seem to be an hour plus away. So it looks like I will be spending more time in forums for support through my journey, which I'm definitely okay with.

Tiffany



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Tiffany
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