To treat now or wait that is the question?

[Ryansmom17]

Ok so I got the info on my labs...........I am Genotype 1a, My viral load is 1,288,000 which it was only 448,000 six months ago. I do have cirrhosis, altho clinically I am not showing physical signs of it ( ascites, jaundice ) I am in stage 4 of HCV. My grade 3 damage was the diagnosis of the cirrhosis I believe. Now she ordered another endoscopy. This is to look around, and to stretch my esophagus. I am having major problems swallowing food at all. I also have gastro perisis, which is a paralyzed upper GI track. My other lab that had to do with immune system/inflammation was VERY high. I am going to be tested for the other disease I spoke of before ( skleradrerma ) It causes the stomach/esophagus to paralyze. So on top of the HCV. I have chronic pancreatitus, and have to take lots of tummy meds. I also take enzymes to digest my food for me. It would not be uncommon for that lab,( I think it was a GGT? ) to be very high because I have 4 auto immune diseases. So the endoscopy is scheduled for Jan 22nd. The referral has not gone thru for a psych eval yet. I will know more on Monday as to why?  She absolutely will not treat me without a letter from a psychiatrist stating I am safe to treat mentally, and me following up with one for the whole duration of tx. So, also the office I go to is doing a trial. It is Peg/rib with Remicade added to it. It has already been approved by FDA and is in the last stage of trials. It is known to treat the 1a 1 b s better. The virus does not just come right back. Now I have RA and Remicade is an RA drug. BUT if I do the trial there is a chance I get the placebo. I can do just the regulated tx and take the chance that the HCV just comes right back, which is what I seem to see it does in a very short amount of time. I go thru all of the tx, the side effects, and battle thru all of this........Just to turn around and have it return in who knows how little of time. I do the trial and take the chance that I am getting the Remicade, which will probably help my RA/fybromyalgia pain too, but either way I am getting the other 2 drugs. I will have the swollen joints and added pain from them. Or I wait until 2010 and KNOW I am getting the Remicade with the others........Which will help my RA pain, instead of taking the chances of not being able to walk at all. You have to realize I am in serious physical pain every day and night. As a matter of fact today is a REAL bad pain day!!!! I am barely walking today at all, every step I take hurts. So to wait or not to wait that is the question? I can't take the Remicade alone because yes it will put me in liver failure, but for some reason the 3 drugs together would have a different reaction for  me??? So say I get my psych eval, sign on for the trial tx and go thru all of this just hoping I will be getting the Remicade because it is of course a blind study and no one knows. I am  just a # too the trial people. I have done studies before for MRSA. after major surgery the staph almost killed me. Even tho they didn't know if I was getting the placebo or not, I knew because my infection started clearing out immediately. I was right when the trial was done, I was told I was one on the new antiobiotics they were studying for MRSA. How would I know in this case? I have never been treated yet, so they are wanting as they called me a nieve VL for the trial. To see if just one tx would keep the virus away for good, or much much longer. Ok I am babbling Im tired sorry = ((( Last but not least in order for me to get on a TP list I have to as least be treated once. I can't just say Id rather have a new liver. And as I found out on here thru Walrus that after a TP the HCV will just attack the new liver too.
Oh no another thing lol as a DRs opinion mom asked and what would happen if I decide to not do tx at all.......She feels I have a range of 10-15 more yrs left of living in the condition I am in, but how does she really know how fast or slow my disease is progressing or how fast or slow my liver will damage completely? Honestly I got a lot of info today but feel I would rather be dealing with a Hepatologists or infectious disease Dr???? Ok I saw the assistant who went over all my questions with me, then a PA came in who basically wrote all the notes down for the DR so she knew what to discuss with me, and then the DR came in and gave me a completely different opinion as the PA. The PA said I have little or NO time to wait. The PA said my GGTs were way to high, and I must go get the tests for skleradrerma asap. The DR was nonchalant, and blase' I know he was a PA but I felt more comfortable with the opinions he was giving me. I know she is a specialist and all of the DRs in that practice deal with HCV txs and liver failure pancreatitus and have done a lot for me above and beyond especially when I was w/ out ins. I am kind of stuck with them I think? I have to find out my rights, and what they are with the medicaid HMO.
Is it wrong for me to feel like I would like another Dr to read all of my results and get a second opinion?? So for now I am awaiting a psychiatrist, endoscopy, and taking this time to make a decision!!
OK,  If I was not all over the place and anyone can make out what I said, please please give me some advice!! My brain is scattered everywhere, and I can honestly say I am glad I have some more time to wait because I have more time to make a decision! Thank you all for any advice or experiences you may add. I know I have read some of you are on trials or have been on trials. I think this is basically the drug that is being tried all over, not sure. I know I was thinking I would have to go far away from home to like Gainesville or Jacksonville to get on a trial, but I forgot that my Drs office is participating in one. Anyways I have a huge packet to read about the trial and consents and all that to sign if that is my decisions. They ( ppl doing the trial ) also said they would not start  tx without psych, since her first records with me were due to an OD!!!
Have a nice evening and thanks for being here........
Jenn

[Ryansmom17]

I do know know know at least that I do have RA and fibromyalgia. I was specifically tested for the RA. My RA was high, but has gotten higher. The skleradrerma is not something new for me to be whining about them testing me for due to all the paralyses in my GI getting worse, but I seem to not be heard often at Drs office!! As I said I am on a medicaid HMO which has more options for specialists in my area, but I still have to go thru all of the processes of getting things approved! The last visit with my GI she agreed I should be tested for it, and this time was did not remember talking about that??? I felt uncomfortable walking out of there, and very frustrated! I agree with copyman, I think that my group of Drs should all be working as a team BUT they are not. My primary is the absolute worse.
If anything my pain management Doc is the best, the most thorough, and he wants all of my records from all Drs so he knows what is going on with me. Like the test that showed severe inflammation.........That explains why my pain level is so much higher now. Also tells me to get to my rheumatologist and ask for that specific testing for the skleradrerma.  I was diagnosed with RA 10 yrs ago, and since then my RA has gone off the charts. Probably due to not treating that!


They told me that that Remicade drug alone could cause the damage to progress, but used with the PEG/rib all 2 together will cause a different outcome. and also yues she talked to me about the anxiety I already am on meds for. Said very well may get worse from the PEG. I guess the inereferon causes the most side effects physically and mentally from what I gathered yesterday?

Sorry about the post above,. I collapsed last night. Me miss insomnia was so exhausted both physical and mental I just collapsed after I ate some dinner. Again I have been feeling real bad for mos and I am wondering if that has anything to do with the inflammation tests being so high and my VL being much higher?

Have a nice day/weekend
Jenn

[copyman]

Bill has givin you some good advice. I would add that with a complicated case like yours you need to be seeing a hepatologist (liver specialist) first, then other docs for your other conditions. They all must be working as a team and on the same page.  If not then more harm could be done then good. best of luck

[merryBe]

yes you were all over the place but who wouldn't be with news like this.

a. I agree you need the scleroderma looked into asap.

b. I'm not sure why the Remicade would fry your liver alone, but not while on tx, that is something to be researched more. I would want to ask them on what basis or study do you base this knowledge.

c. As far as the psych eval, if it was a deliverate OD you are going to have to work very hard to convince them that you learned from it, and will never try suicide again. If it was accidental, you still will need to work on convincing them that you are clean and sober now, and are ready and willing to fight the good fight. If you get depressed during treatment which most everyone does, that can be treated but there also has to be resolve on your part to not give in to suicidal ideations.

d. I was not aware you had to have treated once to be A TP candidate, that's news to me. One would think there were exceptions to every rule, and in light of your RA and possible scleroderma I would think a second opinion here would be valuable. Get as many tests as possible while waiting to get seen elsewhere, make sure you see a hepatologist not just a GI guy, and at least if you hear another person's view you will have confirmation or options.

e.yes it is true were you to get a TP you would still have to treat for the HCV. It's not a perfect solution to wait for transplants.
1. because half the people die waiting for one
2. because your Meld has to be high enough to get on the list and THEN you have to be well enough when a liver becomes available, and by the time Meld is that high, the wait alone is too long for many to stay well.
3. because HCV does not progress in a linear fashion. It may take you 10 years each to go through the first 2 stages, and only 2 years each to go through the next 2 stages, ergo waiting to treat can make your health too precarious for many docs to allow you to treat.......and YET, getting a new liver may make treating for the HCV easier in that the new liver is healthier and not eaten up with 20plus years of viral damge, but the downside is you still have to treat with all your other conditions, AND you have to now treat with antirejection drugs in tow causing the immune system to be surpressed. Ergo
the new liver can be damaged more rapidly by the HCV, and especially if you cannot treat.  That's not to say it hasn't been done successfully, I don't want to entirely discourage you here...it's just that it's not a perfect world, or a perfect treatment environment. Like I said, mike simons is the person in here you need to seek out with transplant questions.

for my 2 cents I'd want a second, and also to ask both docs, what happens if I treat out in 2010, will I be able to then see a reduction in INF dosage with those drugs. (that's assuming you have true RA which INF can make worse. (there are intentions of possibly dropping the INF from the treatment regimes in the not too distant future and trial are ongoing now to see if in the presense of the new PI drugs those reductions are efficatious.)
My main concern for you is that you make certain just what you really do have. If the scleroderma is causing the joint pain, and it's not true RA, or if you had lupus or some other autoimmune thing instead (some of which are helped, not aggravated, by INF tx.) then your options would change. With all these autoimmune problems it's HIGHLY imperative you get the correct diagnosis confirmed by the right test, not just the preliminaries. Only then can you proceed to a quality decision as to whether to treat.  I had 8 autoimmune disorders when I started tx but none as serious as your sound.

Anyway you have some serious things to discover before you decide. It is true that people can live many years with cirrohsis if they stop the drinking etc. but there are no guarantees as to the number of those years, nor to the quality of them.

My heart goes out to you, you have some real dilemnas and need to give yourself permission to take a few weeks to get all these tests and questions answered...to learn and to get your ducks in a row, Once you've had a little time to get your mind around these things I know you'll be able to make a good decision. Just don't rush the process. It takes almost everyone weeks, and many take months or years before they decide to treat.  In your case, stage 4 you do not have the luxury of waiting years to decide, but you do need to allow for some breathing room. There's a lot to learn about all this, and if you add scleroderma to the issues that may complicate things even further, but you NEED to know. You need to know how likely treatment is to exacerbate your other conditions.
You also need to know that statrting tx does not mean it cannot be stopped. Say for instance if 30% of RA patients had their RA get worse on tx....well that would mean 70% did not.  So sometimes you can still try to treat, and if it becomes to difficult, then you have to stop, and learn to live with the virus, that's all. But at least, if you tried you might have the chance of clearing it and not needing a TP...or alternately you would then a least qualify for a TP a least.

you will be in my prayers.

mb

[Bill1954]

I believe that inaction/waiting with stage 4 (cirrhosis) liver disease is not an acceptable option. You’re disease is apparently still compensated; this is the time to jump on it and see if you can put this behind you.

I’m personally unfamiliar with the Remicade trial your doctor has suggested; if you *are* considering clinical trial, I’d also inquire about the Boceprevir trials that are currently recruiting. I obviously don’t have a list of your medical history, but you can review the inclusions/exclusions at the following site:

http://clinicaltrials.gov/ct2/show/NCT00705432?cond=hcv&intr=boceprevir&rank=1

There are apparently 3 locations recruiting in Florida; Wellington, Sarasota, and Miami.

Having a psychiatric evaluation is probably in everyone’s best interest if you do decide to treat; these medications can be challenging, and if you have a history of mental illness, it will help you to have a shrink in your corner if you need some help along the way. Interferon has a history of causing or exacerbating existing anxiety and/or depression; I would view a psychiatrist on board as a benefit to treatment.

Read the documents for any clinical trial very carefully, and call the trial coordinator as many times as you feel necessary with any questions; there are obviously benefits as well as risks involved with any trial.

Good luck with your decisions; hopefully others will chime in with more info.

Take care—

Bill