After 9 months finally getting started

[motheroffour]

Whew, what a long nine months. They've looked at every inch of my husbands body inside and out and drawn so much blood it would make your head spin.  He's been CTed, Ultrasounded, MRIed, biopsied, endoscoped and who knows what all.  My H's meds are finally arriving tomorrow.  Now we wait 'til mid Sept. for him to "do" first shot because of conflicts at the docs office.  After injecting Enbrel for a year for the psoriasis my H is ready to inject without the docs visit.  I promised doc's office he would do "no such thing". He's was dxed w/cirrhosis which is scary, but his latest blood tests look real good.  ALT was normal, AST was only 59, viral load 51,737 IU/mL, AFP a tiny bit up, every single other thing they looked at was normal. His HGB is low for a man (so they say)  so I'm going to watch like a hawk for anemia.  This was the guy who had never had abnormal labs and he's stage 4 soooo bad things can happen after 30 years of undetected Hep C.   I think I'm more nervous than he and very scared for him, but I just want him around for many more years. One good thing for having such a looong time from diagnosis to treatment is that phsyically he's in better shape than I've ever seen him in.  He took the 9 months to get strong, eat healthy, lots and lots of exercise.  I've been hearing waaay to much "your husband looks so good" from the girlfriends LOL.  Hopefully it won't be too bad on him, I just hope there's not too much Riba Rage 'cause I have abit of a hair trigger temper.  Guess I'll have to learn to bite my tongue. Cross your fingers for him (and for me & the Riba Rage)

[FlGuy]

Very smart of you and hubby to take the time and get stuff together.  I hope tx goes well for all of you.  How long, and what geno, is the tx planned for?

[jmjm530]

Sounds like the long wait is finally coming to an end.

Is your husband planning on continuing Enbrel during treatment? I ask because I had a major flare of psoriasis around week 14 of treatment that lasted until around week 42. This is not uncommon  if you have had  psoriasis in the past.

One dermatologist recommended Enbrel, but in the end I decided not to take it as one liver specialist suggested that adding another immunosuppresant drug (Enbrel) to the mix might interfere with the interferon. However, looking back, I can certainly see why the recommendation was made, and hopefully you've had, or will have this discussion both with your treating doctor and a dermatologist who is familiar with both psoriasis and interferon therapy.

I hope it works out for the both of you.

All the best.

-- Jim

[motheroffour]

Sad to say he's a 1A so 48 weeks...so very long indeed (the 72 I'm reading about lately is truly scary).  To make a long story short and for inquiring minds, he got the Hep when he was 20 or so (i didn't know him then).  4 guys on a road trip to go skiing in Colorado decide to get tatoos.  Well you can guess the rest.  When H got diagnosed we couldn't figure out how he got it except for the very very small little tatoo reminder.  Well, he called the buddies, only found 2 of them and sure 'nough both of those guys had been treated about 10 years ago and are still clear so I have hopes that H can clear also.  The buddies did not have near as much liver damage as my H has now.  Now, for inquiring minds, yes we drink/drank alcohol.  No he's not an alcoholic.  He drinks (drank, I need to keep this in past tense I guess) only beer and wine and occasionally a mixed drink.  Yes he drank more than a couple glasses of wine a week.  No he didn't drink every day.  Yes I'd label him a moderate to heavy drinker when we had drinks socially, but not a fall down drunk drinker or a problem drinker. So now you know the story. I truly believe that alcohol is like fuel for the Hep fire.

[motheroffour]

Jim, he's going to cross the Enbrel bridge when he gets there I think.  They took him off Enbrel 9 months ago and at first suspected the high liver enzymes were the enbrel.  Fortunately at that point he only had heavy psoriasis on his elbows, lower back and buttocks and alittle on his head and alittle on his legs (this was a guy who was almost totally covered with it).  I noticed last night that without the Enbrel the patches are growing and his back is bleeding again (oh BTW to inquiring minds, I've been "dealing" with my H's blood for 12 years and I don't have Hep c)  The rheumatologist is on stand-by waiting for him and we're all holding our breath how bad it will get.  Enbrel supposedly doesn't cross the liver, but two imuno-suppresants would be very, very scary.  Deep inside I know the psoriasis is going to get worse.  I'll keep you posted over the coming weeks how he deals with it or even if he decides to live with it since he's lived with it 12 years before Enbrel.  Enbrel was a godsend for him.  It's a d**n shame this Hep C thing surfaced.  If he makes it through the 48 weeks covered in psoriasis and feeling like s**t he's a hero in my book.

[Alady1620]

I'm sure your husband will do fine on treatment.  He has you to take care of him!  He should definitely wait for the doctor and not start his meds yet.

Good luck!  Everything is gonna be ok.  He may not be showing it but he is probably very nervous.  I hope you have a lot of patience with him while he's treating.

[jmjm530]

I'll expand a little on my Enbrel "research". The liver specialist who was wary of using two immunosuppresants (Enbrel and Peg Interferon) also said to use Enbrel if  absolutely necessary. In other words, if it meant the difference between staying on treatment or not. Also, I did find a small study several years ago where they actually used Enbrel in conjunction with interferon and ribavirin in order to actually try to improve the odds of SVR.

I forgot exactly where the study came out but do remember that Enbrel actually decreased the side effects from the interferon. I mentioned this study to two doctors but neither had heard of it and I could find no follow-through studies in this regard.

Your husband sounds like a very brave man and you a very brave and supporting wife. I wish both of you the very best.


-- Jim

[Kalio1]

Welome aboard! You guys really did your homework that will pay off. Your hubby working on getting in shape and diet changes is very smart. Good job. He is so lucky to have such a loving, supportive wife who clearly is also a determined advocate!
I know a few people here have had their skin problems get worse and drive them nuts but I had some patches of psorasis that had gotten really bad before I was dx'ed with HCV and they cleared up on tx so it can go either way. I had soe purpura tarda too and it also cleared up completely. Try to keep positive about it, you never know. You are due for a lucky draw I think!
Plenty of us drank a few beers or wine here and there, cocktails at parties etc. there is nothing wrong with us and it doesnt mean we have a problem at all, we had no idea we had Hep C just like your hubby. You are probably right in that it could very well have made it worse but heck, we didn't know. Now we do and we don't drink. Life is such a catch 22 sometimes.
I am on week 48/72 and I didn't have any out of whack enzymes or anything to clue the doctor plus I contracted this when I was past 40 so I didnt have it for decades and I recently found out I am cirrhotic too so it can happen. There are drugs in the pipeline right now in phase II/III trials that are showing great promise in reversing cirrhotic scarring so keep the faith!

[jmjm530]

Here is the Enbrel(entercept)study I mentioned earlier. Sounded promising to me, but there was no SVR (cure) data and no follow-up as far as I know. Like I said, I mentioned the study to a couple of doctors but they didn't seem impressed.

http://tinyurl.com/p77eu

[motheroffour]

Thanks for the link to the study.  I remember my H saying that (9 months ago) the rheumatologist and his gastro guy were having phone conversations about keeping him on the  Enbrel because the gastro guy said "there were some studies indicating that the Enbrel might actually help his liver".  My husband elected to get off the drug while everyone was trying to figure out what was going on with him.  The rheumatologist brought up Hepatitis early on because of some levels they saw in his blood tests. If the psoriasis flares I'm sure H will be having some discussions with all his docs (we're up to 3 now, family guy, gastro guy and psoriasis guy).  And thanks everyone on this board.  H is pretty quiet about what is going on with him so we dont' "talk" about it with anyone.  Our friends think he quit drinking to loose weight, try to get rid of the psoriasis, get healthy and ironically within the last year quitting alcohol has become sort of an "in" thing to do in our crowd. Must be a 50s kind of thing or all the docs are telling the 50 year olds to quit living like a bunch of 20 year olds!  Who knows.   I'm really worried and consumed by "life expectancy" ****, something I never, ever thought about and need an outlet and you all have provided both knowledge and an outlet. Thanks for being there albeit in an anonymous sort of way.