to all that helped me

Well I have not been around to much, feeling like **** and just got by my 24 week which they will give results in the next week or so.I have been feeling so bad and my blood has been low (red and white) that they told me to cut down on the ribo from 1200 a day to 400 a day. I have also been dizzy a few times and today at work was not too good.They claim Its from the ribo so it should be going soon. Just last week on my 24 week they also gave me a fibro scan which I just about forced them to do and the doctor that did it, said its not very good and not accurate. He claims he has #'s from the low (10) to as high as (80), and with my # being in the 30's dont mean too much to him. Oh well the viral load was less then 5 the last time and hoping it will be the same on this test. This linchen planis I got is a ***** to get rid of and this lingers on longer then I had in mind.The chest looks better but it seems the skin never comes back to feeling like skin, instead feels like very rough skin and the rash, although better is still visible and on my neck is even worse.Thanks for the listen.

[Tippyclubb]

Sorry your not feeling so well--maybe you feel better with riba reduction.  The good news is your UNd.

[fretboard]

Very sorry to hear you're going thru a difficult time, are you still on the Eltrombopag?  What is that, is it a shot?  Are you on that stuff and the Riba?  I hope you feel better soon and it did some good for you.  God Bless

[salvo]

Eltrombopag, is a pill which is a study also and it helps your platelets increase. Mine were good for almost 6 months but now was also asked to increase to 2 pills a day, cause it went down to 99 and thats the lowest its been from when I started to take them.I really dont know what will happen when I finish in 6 months, if the platelets will be good or not and they claim they dont know either.

[comeagain]

Hi salvo nice to hear from you !
I´ve been wondering about you since you are on that eltrombopag study, and I have a  female friend here in sweden who are not allowed to treat due to low platelets.

I  have read on the net about it and it seems as long as you taking the pills the platelets will stay high but as soon you stop they go down again.

If you get rid of the HCV on the other hand the may very well raise again as they have done for goofydad for exsample after he got SVR

Wish you the very best and keep us updated I think there is many here who are in your situation and are very interested how its working out for you.

God bless!

ca

[alagirl]

Are you on procrit at all or neupogen for your low blood counts?  Seems like they would try that before reducing your riba so much...

[salvo]

No I'm not on those med. I just take interferon, was taking 1200 riba and 1- 25mil of Eltrombopag. But now since my platelets went down to 99 they increased to 50 mil

[fretboard]

How are you doing now?  I hope you're doing better.  good luck

[salvo]

I hate to be soooo negative, but with all that comes out I get sick.Just got my 24 week result and again virus is less then 5.I'm feeling like chit every day but have been copen. In between all this my primary doctor decided to send me for a "CAT" scan because of some #'s she read from the blood work of the trial.The scan came back and showing according to her,  Portal hypertension and I should be treated right away.My spleen is enlarged and liver too and after a few weeks I finally got to speak to the nurse under the doctor for the trial.She claims that they dont treat portal hypertension and for what I have this is normal. I asked the ?, what happens after the next 6 months? will my spleen go down and the scaring of my liver get better? Thats what they are hoping for but I know after having this over 40 years it wont fix itself.I also asked if I should be looking for another doctor to take spleen out and I was told that might be the worse thing and maybe wont help at all. Over 40 years of hep c, pain in my liver, all the time, spleen enlarged and is not  allowing platelets out, liver enlarged and scared, Lynchen planis on my body,( chest and neck) and is not going away.( might look a little better on chest), so with all this, how can I look at it in a positive way? I dont think its going to be better this time and I fear for my family.Sorry for not helping instead of complaining.

[Tippyclubb]

My heart goes out to you and so sorry you feel so bad.  Your not complaining--your just venting--getting it off your chest--sometimes that helps

[apache1]

Hey Salvo, good to hear from you.

Sorry for all your sx. Are there any meds for Lynchen planis ?

Is it possibe that if you SVR, than your spleen inflammation will get somewhat better?
Even with cirrhosis, think I have read about some studies showing an improvement in liver histology with SVR. Good thing to talk to your DR at UM about this.

At least you are UND, thats very good.

Hope you start feeling better soon

apache

[salvo]

Hey thanks, but in answer to linchen planis, no there is nothing but they say sometimes the med for hep c helps. The only other thing is SUN, I guess to hide it.

[salvo]

Sorry never got back until now. No they never gave me procrit but was told if my blood goes down again, they will insist on me getting procrit cause from what they tell me they at the trial dont pay for this. They will assist me in getting it in case I need it but the last blood work was 10.6, so I'm hoping.Besides all these other things I got to deal with, I guess I'm lucky to have no virus on 2 tests and they hope if it stays this way I will get better even the Portal hypertension, I hope. This is my 32 week(just passed) and for some strange reason, I feel a little better, except a terrific pain I get if I tried to do a sit-up.Still get temperature right after the shot.They tell me I will be taking med until Aug. but will be monitored until Dec.I just can wait until I can recuperate from this med and feel myself again.Hopefully it does a + for my sex I'm not having, I feel like having it every day, but the actual doing it  stops me cold.Maybe its a combination of the med and this Portal hypertension that giving me a problem.