Hello 10th week into Peg-Intron-Rebetol tx

[poolcue]

Just want to talk! I'm female 47 130lb 5'6" I have hep c I'm a 1a my viro is 7-9 million+.
I started on 0.28 peg-intron, 800mg rebetol.  Week 5 my red blood cell count started dropping from 13 to 10 at week 9 my rbc was 9.6 so they change my rebetol to 600mgs. After one week we rechecked my rbc and it is still going down it's 9.4 I go in tue. for more blood work.  I'm on the IdealStudy.  Just wanting to know if anyone can give me any info on what to maybe expect to happen.
I feel like I'm breezing through the study at the present time.
I'm having headaches,coughing,rash on my upper tordo.  Fatigue is my biggest problem.
I've been using aveeno products,Benadryl itch cream and these do not seem to have much effect on the itching.
My viro load has dropped to 300,000 but I'm concerned by the fact that they have decreased my Rebetol and my 12th week is coming up that they may stop the tx.
Thanks
poolcue

[cuteus]

some have gotten riba and interferon reductions and still achieved SVR. But a majority do not. You do not want to do this tx again unless you are into masochism.  If you don't clear by wk 12 but get a 2 log drop will they extend your tx?  It is a blessing to have someone pay for your meds, but if it is going to hinder your SVR chances and you have to repeat the tx if you relapse, it actually was a curse, right?
You need Procrit, not dose reductions. and you need to extend tx if not cleared by wk 12/

[Oreos]

I'm with Rev.  Jump up and down for Procrit!  Appeal, appeal, appeal!  8 weeks into tx my RBCs went too low so doc put me on Procrit instead of reducing my Copegus (riba) dose of 1000 mg per day.  Made it through the 48 weeks without missing any riba.  In the meantime, eat more iron-rich foods.  Good luck!

[Gladitsnotworse]

Thank you all for the information. I am sorry I butted into poolcues post. It looks like we both are worrying about meds being reduced so soon. I dont want to have to do this again.

Anyway,it is a relief to talk with people that know what I am going through.I have felt very isolated. Everything I know about hepc is from the library or bits and pieces from online. I am on Pegintron because my doctor said the meds are all the same and he likes the Pegintron rep better. The most I have got from my doctor is "everything is fine." I have seen him 3 times since November. He faxes my blood work to me per my request.  There is not a hepatologist within 100 miles of here. I am afraid to get another gastroenterologist, what if he is worse.

I am going to request the thyroid tests from now on. There was one done in March that says 1.21.  They didnt check it in previous labs or the last two that were done. Also, I am going to push for meds to keep me from having to reduce my Rebetol.

[layla]

Welcome to the forum. Sorruy it is under these circumstances but you'll find lots of support and info here. Your doc should do a TSH test for you to check your thyroid levels. Some docs think it is ok as long as it is under 5. I absolutley do not agree with this. Even in the 4 range I was very sick. It is now recommended by some docs to use 3 as the high level. I feel best in the 1.4 to 1.8 range and adjust my throid meds so I am at that level. I lost my thyroid while on tx. Make sure your doc gives you this test and you get the results. Don't just have him tell you your thyroid levels are fine, ask exactly what the TSH levels are or even ask for a copy of the test. If your TSH is higher than normal you would be hypothyroid and if it is lower you would hyperthyroid. Typically you are hyper first then as your thyroid burn out you become hypo. It takes awhile and the symptoms change. You should look these up on the internet and read about the syptoms. I know the headaches are terrible. Mine were just horrible but I believe they were so bad becasue I was having thyroid trouble which did not get caught until it was too late. Laying very still in the dark and covering my eyes helped. Light bothered me. I also got some pain killers from my doc for the worse times. We tried migraine meds but they didn't work for me. Can you see a doc who is a hepatologist? They specialise in liver disease and will be most up to date. It may take a while to get an appt but it is worth is. I hope you feel better. LL

[Gladitsnotworse]

I am knew to this forum. I really could have used it last year during my denial/breakdown period.I found out I had HCV a year ago. Started with 1a/b viral load 8 million per ml.I'm at 13 weeks of treatment with peg-intron and ribiviron. I  am tired and have dizzyness and headaches. I am trying to drink enough water.I feel like my head is in a vice 24 hours after my injection. At this time my vl is less than 50 per ml. My hgb is 11.4 from 14.7, wbc at 1.0 from 5.9, Ast at 22 and Alt at 14, Rbc at 3.5. My rdw is up to 16.7. Platelets are at 141. Doctor ordered more bloodtests on Friday and decreased rebetrol. How do I know if my symtoms are from treatment or thyroid? My doctor only has a few patients with this disease. I feel I know more than they know. I use a Gastroenterologist. They rely on Charleston, SC for any updates in treament. Do you have any ideas for headache relief? Do my labs still look ok. Dr said that its okay for white cells to get to .6. Is this what you have been told?

[pitch]

Hi.  I did a trial to start with and had the same treatment(schering) for the first 12 weeks. I also thought it was a breeze and to an extent still do at week 43. I never had any real low blood counts even though everything wbc,rbc,hemo,hema,platelet count,and neutrophils(whatever that is) are all low now. My doc says everything is within the limits that I can stand. I had all the sx everyone has but not too bad. At week 13 they took me off the trial and switched me over to Pegasys as Roche paid for the trial so my dosage went up. This wacked me out a little but again nothing too bad. They both work great for me so if I had me druthers I would have stuck with the first one but I'd rather have Roche paying the bills than my insurance co. Your experience sounds very similar to mine so in my opinion you're doing great. I know they want you clear by 12 weeks but my doc say if significant improvement has been accomplished they can continue. 7-9 mill to 300,000 is significant and it should get even better in the next two weeks. I haven't heard too many people talk about their docs but I love mine and I really love the staff. My life is much better because of these people. Over the past 11 year from when I first found out(nice 40th birthday gift) I have had 3 liver docs and absolutely hated the first 2. Life is too short(no pun intended) to put up with a bad doc and there are great ones out there. Didn't mean to ramble or rant. GOOD LUCK!!!

[scruffy]

Hi poolie, I did 48 weeks and relapsed.(1A also) You don't want to do this more then once. If at all possible don't reduce dosage. People here will advise on which drugs for which problem sides. There is neupogen and procrit but I can never remember which blood cell counts are improved or if it is platelets or hemoglobin. I forget this technical **** almost as fast as I hear it. My message is-don't reduce dosage unless ABSOLUTELY necessary. You can beat this bug first time if you stay informed and listen.(Hoping on your behalf)
Someone will inform you further here I am sure. frank

[pitch]

When the headaches got relly bad for me I tried everything and found  naprosyn(aleve) works very well. I take 3 220mg with a couple vit c every morning. I quit when they had the news on possible heart problems with Aleve etc. but went right back on when the headaches got bad again.My doc didn't think it was a big deal.  Several months later now and it's still working.

[Laika]

What they recommend is that you get your doc to prescribe Procrit if your red blood cells get too low and Neupogen if your white blood cells get too low--these meds boost them back up without necessitating dose reduction on your interferon/riba.  BUT.  I don't believe the IDEAL study allows the use of these drugs.  That's just from following the chat here...hopefully someone who is in or has checked out the IDEAL study will post soon.  Weekends are usually a little slow here.

Laika