Hi, just wanted to thank yu for suggesting a second opinion about whether to treat now or not. I am so grateful to some of you for suggesting 2nd opinion from a good hepatologist. Turns out that I was able to see one of the leading hepatologists at ucsf last week and I got the help I needed. This doc is so famous that the recommendations sent to my kaiser doc were fully accepted an acted on immediately. One of the recommendations was to switch from victrellis to incivek since I had not started the PI's yet The hep dr. said there would be new, shorter term, more effective drugs possibly available in one year. Only that interf/riba will still be in the picture. I started triple tx on 4/13 and have not started the incivik yet but wait, since all this has happened on Monday so many things have transpired: raging UT infection and Shingles! I emailed my doctor about this on Friday and he said he will see me immediately which looks like Monday4/29. The shingles pain starting in friday night and I'd hoped the large quantity of antivirals would kill it off. It only gets worse and tonight the nerve pain and rash on my back and under arm is spreading....absolutely unbearable pain. I had to take a whole vicadin last night and tonight in order to write this message I tied a shawl around my chest a few hours ago just to relieve the tingling nerve pain that has become so intense. Tonight was interferon shot night and I am pretty sure that I won't be able to do the shot tonight to add to more discomfort at this point. I have to go off tx as of today. The pain is so great that not one doctor could seriously look at me in the eyes and recommend continuing at this point. Sorry about the drama, my guess is try again with some of the new drugs in a year or two. I will take the inf/riba with the new drugs down the road. I've had shingles before and have found the only thing to keep it from manifesting is to take immune support. Just in two weeks my cbc and white blood counts are so low that is why this happened to me. Sorry, don't mean to discourage any of you. This is just an unusual thing that happened ot me because I'm early stage 4 compensated.condition.
I am sorry to hear you are having such a difficult time even starting hep C treatment.
Have you told the doctor that started you on the hep C treatment you are going to stop? You need to. If this was the first time you treated you will be losing your best chance of SVR as treatment naive patients have the highest SRV rates. With cirrhosis, which has poor SVR rates, the treatment naive advantage is not something you want to give up if you can prevent it.
Most persons with low WBC do not get infections. At UCSF they start all cirrhotics on Cipro at the beginning of treatment to prevent infections.
Has your doctor mentioned treating with Neupogen? For your low ANC?
Unfortunately Kaiser's GI knowledge of cirrhosis is limited went it comes to treating cirrhotic patients because when patients become sick enough to be eligible for transplant they are sent to UCSF for care.
I have known many patients from Kaiser and seen this over and over again.
Being cirrhotic and waiting to do treatment is a risk. No one can say how quickly your cirrhosis will progress or if future treatment will work for you.
Also I don't understand why the doctor started you on treatment without a plan as you have a history of shingles. It sounds like you are taking your antiviral which is good but you should have on hand proper pain meds for Shingles pain. Not vicadin. Proper management involves neurontin, amitriptyline, numbing agents, such as lidocaine, delivered via a cream, gel, spray or skin patch or a narcotic, such as codeine if the pain is extreme.
An antibiotic should be prescribed for the UTI.
If you treat again you will probably have the same issue as the treatment will have peg-interferon and Ribavirin in addition to Sofosbuvir. So you should have a plan in place to manage these issues before starting treatment again.
Hector, Yes, this is the lesson I have learned is.the kaiser docs don't have time to know which questions to ask before starting tx. It's just one size fits all handouts. The liver nurses don't have time to answer their phone or give you any support. My situation has this poor dr.'s head spinning as a result of the problems that have arisen in just 2 weeks. He did not even know I had ascites fluid in the liver until I had the MRelastography performed just a week before starting tx. I had to inform him of this finding. I started tx with the Cipro and had a bad reaction to it so he has had me on Septra for the entire course of tx. So this week with the UTI, I've had to double up on the septra dose to treat that the UTI which would not have been discovered if I had not gone to see the hepatologist this week at ucsf. She's the only specialist I've ever seen that is so caring, knowledge driven and pro-active about what to do and when. I was lucky to be assigned to her - I think we have the same doctor.
So I'll be following up with her about everything that has happened since I
last saw her last Monday. She just reports her findings to my GI dr. and he just follows her advice about tx.
Yes, I emailed my GI dr on Friday about the shingles asking to see him about the question of continuing tx at this time. So last night was the telling moment, there was no question, I could not do the injection. I was in too much agony, even after taking the vicaden no relief. I usually don't take the vicaden very often unless the pain is unbearable. I just need to find out what I can take in it's place. The nerve pain comes on very strong in the evening and will have to find out what to take for it.
I'm not a naive status when it comes to tx,but a genotype 1a non-responder since the first try in 1999. Now I feel I can build my strength up to prepare for whatever tx that might become available in the coming years. So thankfully I have found a hepatologist and will be getting proper care and guidance along the way. At this time I'll just have to pay out of pocket to go to ucsf occasionally and stay at kaiser until I'm able to get medicare. I'm applying for SSD and will have to hire an attorney to go thru the process.
Where are you at regarding your tx? Did you have to take interf/riba with it?
I really appreciate your help and resourceful info shared with so many of us.
Yes tell Dr. T all of your concerns. Write it all done before you see her so you don't forget something. Then right done her answers. Yes she is one of the leaders in the fields of hepatitis and liver transplant plus one of the most caring people you will ever meet. She presents that latest advances to other hepatologist and others involved in liver transplant.All of her people are good too. Her NPs, her assistant Dr. Jennifer Lai (hepatologist). Can't recommend anyone more highly. She has saved me more than once.
I am one of 50 world-wide in a Gilead study for folks waiting for transplant with liver cancer treating with Sofosbuvir + Ribavirin. I have been treating for 34 weeks. Undetectable since week 2. Was a previous null responder to peg-interferon + Ribavirin.
I have been ineligible for transplant for over 2 months now as my cancer has become unmanageable. I was screened for metastasis on Friday and will have my 4th TACE cancer treatment next Wednesday. Unfortunately my case has stumped the experts. Things are looking very bad for me now. My cancer may have gone too far to reverse. I should now soon whether I have reached the end of my journey. So I am hoping for a miracle at this point.
I am still hopeful and UCSF is doing everything they can for me. Unfortunately UCSF has the longest waiting list for liver transplant in the country so it is difficult to get a transplant until we are very ill. Currently the lowest MELD score to get a transplant in 33 but often it is higher depending on who it at the top of the list.
You may want to try Allsup to get SSDI. They got it for me in 3-4 months.
The SSA determines the fee that any representative can charge for SSDI representation. Currently, under the SSA's fee agreement approval process, it is 25 percent of the retroactive dollar amount awarded, not to exceed $6,000 (as of June 22, 2009*). Those who are approved for SSDI benefits, sometimes very quickly, and do not receive a retroactive award generally pay lower fees.
Example: If you are awarded a $1,000 monthly benefit and the award is retroactive 12 months ($12,000), your fee would be $3,000 (.25 x $12,000). You would keep the other $9,000 of your retroactive award. All of your monthly benefits ($1,000) are yours to keep going forward.
The sooner you get SSDI the sooner you will get Medicare. (about 2 years). Meanwhile you should keep COBRA or look into private insurance through the California new health exchange. NEVER LET YOUR HEALTH INSURANCE EXPIRE. It will open in October 2013 as part of Affordable Care Act (ACA). And start on Jan1, 2014. It is called "Covered California".
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