Aa
Questions
Why is it so difficult to find a hepatologist in Eastern North Carolina? Gastro's coming out the woodwork but no Hep Doc's. Two big training hospitals (Duke, Pitt) but they're all gastro's. Do I settle for that if thats all there is? They do have a study trial starting ( IMO2125 ) but I don't think I fall in to the catagory they're looking for.
For those that advocate waiting for treatment if you have minimal liver damage, what length of time are we talking about? Can I wait 2 years? 5? If I'm stage 1 and in good health and don't drink, does the disease progress over time? Is there a study on the progressive nature of Hep C? Can I go from stage 1 to stage 4 and if I can, is there a time span and how can I avoid it or slow it down?
I've seen this asked before but I'm going to ask again. Is there a study on the long term side effects of Interferon/Riba combination? There are some concerns that are cropping up and I'd like to find out if they're related to treatment. Concentration is one of them. I can't seem to stay focused on any one thing. My mind wanders to something else and when I try to back to the orginal thought, I've forgotten it. An Arthritic condition is another. Before treatment I had no problems with arthritis but now I find it difficult to grip or squeeze anything with my hands. Jeez, I've just went a full circle on this damn disease. For those doing it a second time or more, can I pretty much expect the same sx as the first time? Is there anything you would do different? Thanks for any info.
For those that advocate waiting for treatment if you have minimal liver damage, what length of time are we talking about? Can I wait 2 years? 5? If I'm stage 1 and in good health and don't drink, does the disease progress over time? Is there a study on the progressive nature of Hep C? Can I go from stage 1 to stage 4 and if I can, is there a time span and how can I avoid it or slow it down?
I've seen this asked before but I'm going to ask again. Is there a study on the long term side effects of Interferon/Riba combination? There are some concerns that are cropping up and I'd like to find out if they're related to treatment. Concentration is one of them. I can't seem to stay focused on any one thing. My mind wanders to something else and when I try to back to the orginal thought, I've forgotten it. An Arthritic condition is another. Before treatment I had no problems with arthritis but now I find it difficult to grip or squeeze anything with my hands. Jeez, I've just went a full circle on this damn disease. For those doing it a second time or more, can I pretty much expect the same sx as the first time? Is there anything you would do different? Thanks for any info.
When I began tx, i was seeing a reg. Gastro. Found him to be uninterested in me or Hepc. Took busses, trains and subways to go see Hepatologist, Director of Hep. Dept @ a Univ. Hosp....this was @ my 6 wk. of tx. During consult..asked him about switching to Pegintron...due to BMI (and reading/researching this forum). Nope...he says...though I had not gotten near a 2 vl drop. Now I go back at 25 wk. with a higher vl than my, say 20th wk. I ask about stopping tx. He says I don't recommend. He gives me the option of double dosing Pegasys or switching (now) to SOC Pegintron. I ask NP and Himself...what dya think I should do...they shrug??? Hep Dr. says, "If you had started txing with me, I would have prescribed PegIntron...so I say, let's order that then. Come home, get on forum...and after giving it some more thought (Foggy thought)..I call back office and say double dose pegasys.... Now with more time to ruminate on things...I'm sortin' things out and wondering why he didn't switch me at 12 weeks (high vl) or anytime when I brought up the fact of being a little over the BMI? Now I'm looking for a 2nd opinion. When I started with Hep Dr., I asked will I be seeing him each time I made this (nightmarish) trip to hosp. He assured me I would. Here comes along an ambitious NP who wants to add me to her roster of patients...i don't know what's happening and go along with this scenario. Looking back I see now, that this was to my detriment...ah well, live and learn. This is a crapshoot and the best thing we can do for ourselves it to be hypervigilent advocates reg. our healthcare. It stinks....but on a happier note, it's the best there is...yadayadayada. Just my foggy take.
Now I'm double dosing on Pegays and 1 1/2 x the regular SOC riba............it's nuts. Reality is...at this date...I don't even know what week I'm in......
Now I'm double dosing on Pegays and 1 1/2 x the regular SOC riba............it's nuts. Reality is...at this date...I don't even know what week I'm in......
Thanks. Sometimes it helps to step out of the box once in awhile and get a different perspective. Since this is my first time as a relapser, I guess it's kinda premature to base my previous treatment on something that I haven't experienced yet (my second treatment). I guess I was naive going in the first time and hopefully I'll be a little smarter and ask more questions on the second go around. If I learned anything this past year from the forum it's Research! Research! Research! Thanks again.
thanks all for your opinions
"There are so many variables; someone who's a top doc for one patient may be not at all right for another" thanks mark, makes sense
"There are so many variables; someone who's a top doc for one patient may be not at all right for another" thanks mark, makes sense
Re: Top Doc.
I'm being treated by a so-called TOP DOC. His designation as such I think is based on the numbers of patients he has treated; the complexity of the patients he treats; his involvement in clinical studies so as to be on the cutting edge of new modalities; his participation in lectures and advanced medical seminars to bring current knowledge to those docs outside the biggest centers; the number of patients he attracts from all over the greater metropolitan area. Whether his success rate at treatment is comparable, better, or worse than others, I don't think one can make that comparison because he treats so many difficult patients - previous non-responders, relapsers, those co-infected with HIV and or Hep B, those with borderline medical status because of liver disease.
There are so many variables; someone who's a top doc for one patient may be not at all right for another.
Just my thoughts.
Mark
I'm being treated by a so-called TOP DOC. His designation as such I think is based on the numbers of patients he has treated; the complexity of the patients he treats; his involvement in clinical studies so as to be on the cutting edge of new modalities; his participation in lectures and advanced medical seminars to bring current knowledge to those docs outside the biggest centers; the number of patients he attracts from all over the greater metropolitan area. Whether his success rate at treatment is comparable, better, or worse than others, I don't think one can make that comparison because he treats so many difficult patients - previous non-responders, relapsers, those co-infected with HIV and or Hep B, those with borderline medical status because of liver disease.
There are so many variables; someone who's a top doc for one patient may be not at all right for another.
Just my thoughts.
Mark
Just my take;
As a one-time professional in another area, I can say that most of my former colleagues would NEVER recommend someone who they didn't absolutely believe had an advanced level of expertise.
Word-of-mouth is, i think, often more accurate than actual formal rankings and it's human nature not to want to promote someone or something that may eventually come back and bite you - eg; if you give a favorable reference about someone you KNOW isn't qualified and the person comes back to you questionuing your knowledge.
If a professional rattled off several names of other professionals i would think in most cases they would be qualified.
wyntre
As a one-time professional in another area, I can say that most of my former colleagues would NEVER recommend someone who they didn't absolutely believe had an advanced level of expertise.
Word-of-mouth is, i think, often more accurate than actual formal rankings and it's human nature not to want to promote someone or something that may eventually come back and bite you - eg; if you give a favorable reference about someone you KNOW isn't qualified and the person comes back to you questionuing your knowledge.
If a professional rattled off several names of other professionals i would think in most cases they would be qualified.
wyntre
I slowed down the progression of my hep. C disease with Dr. Zhang's herbs for 3 years. If you stop the inflammation you stop the progression of the disease. My alt/ast became near normal and in 2 weeks all the exhaustion went away. They also help during tx to lessen the side effects but you can't take all the same ones for both before tx and while tx. (sinomedresearch dot org). I'm genotype 1A. My biopsy showed I was a stage 2-3. Good luck to you.
Have an Answer?
You are reading content posted in the Hepatitis Social Community
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
