Hep C Hot Topics User Group
first post
About This Group:

This is a place to have spirited discussion of topics that overheat on the Hepatitis C forum and the Hepatitis Social forum

Founded by lovebird99 on April 4, 2011
51 members
Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

first post

sooo. should the first post be about natural cures????  Or posts looking like a book, or people theorizing their treatment, or people that know it all and will not admit that they are wrong?????

Inquiring minds want to know

Thought I'd make the first post interesting
8 Comments
Blank
Avatar_m_tn
I am fascinated by people who decide to customize their treatment.  I see people who adjust their doses, who add other drugs and then there is always the question of supplements.

I don't read most of the studies people post, I just don't have time and I don't know enough about the science to make much sense of some of them anyhow.  I trust my doctor. It took a long time to find him and why bother to find someone really good if you are going to prescribe for yourself anyway.   We made a plan together and I will do treatment according to plan.

I would never just decide to double my dose or add a drug unless my doctor was for it.  I see posts from people who do this and it always makes me curious.    But then I see people advising someone else to do it and that makes me worry.

What do others think?
Blank
Avatar_m_tn
I pushed my doctor but the final decision was his. If I had strong support and good reasoning for a modification he would acquiesce. But, I didn't tamper with my treatment without his OK.

Mike
Blank
1117750_tn?1307390169
i tweaked my tx and did nt tell them , but they guessed anyway
Blank
Avatar_m_tn
An example of what I mean is a thread on the Hep C board now about changing PIs in mid-treatment.  I would love to know more about that.  

jusjames, how did you decide to tweak your tx?  Was it because of test results you got, was it on someone's recommendation?  Also when you decided to tweak how did you figure out what to change and how much change would be good?  Did you change dose, add a drug, drop a drug, change timing somehow?  How did your doctor guess and what did he say?

To me this is interesting stuff.
Blank
Avatar_f_tn
I suppose if the plan all along was to add a DAA at the end of treatment with no statistics to back up the efficacy of the plan then why the concern about changing PI's mid-treatment?  If they're adding a DAA at the end, they are doing so based only on speculation, nothing more.  The outcome could be failure and developing a resistance to Tela and Boce. Then again, they might succeed but the least of their worries should be trying to to dodge the known side effects affiliated with both DAA's.  Seems a rather  pointless question to me given we know nothing about the outcome.

If it were me, (but it never will be because I wouldn't do it -  I think it's stupid)  I'd rather endure a rash at the end of treatment which can be controlled to a degree as opposed to sending my already compromised hgb to the basement because of the Boce.
Blank
179856_tn?1333550962
Kindred,

I agree you are right there are so many variables and unknowns what if it doesn't work and gives you the inability to try either drug ever again?  Why not just do it the right way that has been proven to work?

As for supplements I think they have their time and place and taking things like vitamin D and stuff is just fine.  if someone can't treat and they believe that taking something mentally helps them then good however when people push the same supplement over and over and give out specific named items that are VERY expensive it seems to me that somehow they are making a buck on them. Even if they are say receiving compassionate care discounts to me that is PAYMENT.  and yet you never hear these same people get jazzed about the real miracle meds that are coming down the pike any day - they have NO Intention of treating at all just pushing the same damn line item name and that is salesmanship not anything more.

And I agree I listened to someone who showed me some dumb small study and it almost killed me taking their advice.  If it's not common sense and WELL thought out and proven well I would never advise anyone to do anything of the sort.
Blank
179856_tn?1333550962
BTW who reads the book posts anyways? Anybody?
Blank
148588_tn?1412862268
"To me this is interesting stuff."
Oh well, everyone should have a hobby.

My gastro wanted me to tx 48 weeks with 1200mg/day riba. I dose reduced to 800 at week 19 and discontinued tx after my 23rd shot. His opinion was based on his experience txing geno 3s and my negligible drops in Hgb and WBC values. My opinion was based on the 2002 NIH consensus report, which he pointed out was based largely on European studies that hadn't been confirmed. This was '02-'03. There was no IL28B test, we were both mostly guessing. I guessed right.
Blank
Recent Activity
317787_tn?1373214989
Blank
Dee1956 commented on Kirstie_MHModerator's status
13 mins ago
4113881_tn?1401895587
Blank
ActingBrandNew commented on ActingBrandNew's status
4 hrs ago
4113881_tn?1401895587
Blank
ActingBrandNew Don't let anyone treat you ... Comment
5 hrs ago
MedHelp Health Answers