To treat or not to treat...my perspective again...

[Kathy73]

We are all individuals. While there are predicators as to whether someone has a better chance than others to reach SVR, it is the individual who will respond one way or the other. These are only predicators not absolutes. This goes for obesity, platelets and many other aspects of treatment and/or side effects and ability to work. That is why doctors “practice” medicine.

I’m not going to give any medical advice or study information. These are my observations and response to txt as I see them and as how they relate to me alone.

I was diagnosed last summer with Hep C, 1.a. I started Pegasys and Ribavirin in November of 2008. I have since finished treatment. I started txt weighing over 260 lbs and am currently around 202. My viral load was over 11,000,000 which is pretty high. My platelets were 44 when I started because I have ITP which is a platelet disorder. They are currently 172 which is extremely unusual to have them increase on txt instead of decreasing. No-one can tell me why. I was UND at 12 weeks and am 100% compliant except for two times I took double the riba by mistake.

First thing, for all of you out there trying to make up their minds as to whether to treat or not. This is a difficult decision and mine wasn’t easy either. I chose to treat now instead of waiting for new drugs. I have a firm support system in place and a good job. I’m aware that new drugs are coming out that make the odds better in getting SVR, but these drugs are in addition to and not in replacement of current txt (as far as I know).

I have a 40 hour work week in a stressful environment. I commute so you can add 2 hours per day on to that. I have only missed one day of work in the almost year that I have been on txt. I did have to take a week off before txt to get my platelets up before starting.

My side effects have included weight loss (I needed it), loss of hair, headache, weakness, lethargy, anger/rage, brain fog, earing loss, loss of appetite, insomnia, loose stools and constipation (from headache medicine). While all of these sides were uncomfortable, they were doable. Some sides have been constant through txt and some have come and then disappeared.

If I can help anyone, I’d be happy to.

[Kathy73]

Thank you so much. You said what I couldn't find words for without seeming to be "grumpy" or attacking the studies. It seems that obesity seems to be a real problem with the experts on here. Not eveyone who is obese has insulin resistence. And comments like "take a walk around the block, etc." are only derogatory not helpful.

[Kathy73]

I've never claimed to be normal either and I don't want to be. I'm kinda abby normal, like in Young Frankenstein. I have no idea about the platelets and believe me I'd like to know. None of the experts have an idea either. Was I misdiagnosed with ITP? Was my liver hiding or destroying them and once it got better so did they? I have alot more energy now and am so thankful. Are you Irish with fair skin? Maybe thats the reason for the rosacea? My skin still seems to be dry but I keep it under control with fragrance free lubriderm.

[Kathy73]

Thank you for your well wishes. With only 10 days to go I wish you the best too! While I agree predicators are important and I don't want to mislead anyone, not eveyone who is overweight has diabetes. I know I don't. I'm also not insulin resistent. As far as plateletes there aren't many ways to bring them up. Before the new drug there was only prednisone and a few other ways. I couldn't do prednisone because of the effects on Hep C so that didn't give me a whole lot of options. In order to get a biopsy I had to have gamma globulin infusions over 5 days of 6-8 hour sessions at the hospital. While this enabled me to get the biopsy it only lasted around 2 weeks so that doesn't work long term. Hope you do well for your last days on tx and SVR in the near future!
Kathy

[Marcia2202]

I'm sorry that you interpreted my comment as a 'disclaimer'. As said before, I think it is great that Kathy was able to have such great results, despite of some of the negative predicators she herself mentioned. And I am genuinely happy for her. And I'm wishing her SVR from all my heart, as for anyone else who is going through this illness. We are all in this together!

I just think it is important to be aware of all the aspects and possibilities to achieve the best possible outcome of treatment. And I cannot see why you see anything wrong in that.

I myself was fortunate to only have one predicator against me, but one I really couldn't do anything against, which is being partially African American. So I searched elsewhere to try to outweigh that factor.

I did all the research I could on supplements. Some encourage viral replication and others encourage viral eradication. So I came up with a list of supplements which would help my treatment and avoided the other. It took me 2 months to research this. I call it being proactive. Nevertheless, I did not clear a 4 weeks, which is essential for a geno 3. So I had to extend treatment. If I hadn't been proactive (supplements and an extension I fought for) I would have treated 24 weeks and would have most probably relapsed.

Your comment: "Low viral load is also a predictor of achieving an SVR.  People who wait to treat risk the potential of increasing their viral load."

I agree to the first sentence, but only 50% to the second. People who wait to treat risk both, the potential of increasing but also the potential of decreasing their viral load. Viral load swings a lot either way.

The ideal scenario would be to try to get everything under control before treating, (if you can afford to wait) to have the best outcome.

I know that studies can be flawed, but they are the only thing we can work with. Some things have been studied over and over again, with similar results. Studies and statistics. If we didn't have them, we would know nothing about this disease and how to handle it. We are dependent on them. So why not use them to our advantage?

[Marcia2202]

Thanks Kathy. I achieved SVR last months. If I'm not mistaken, you congratulated me on my SVR thread. There have been so many SVR's rolling in, that it is starting to get confusing. In my mood I am cheering on GB, who has 10 more days to go.

I did not implement that you had IR. I know that overweight doesn't equal IR, diabetes. I have a sister who is overweight, and she is healthy. I also think that the new drug for upping platelets is not on the market, yet. I think it is still in the trial phase. In my post I was speaking about predicators in general, what ever they may be. If one can do something about it, I believe one should, that's all.

But people who treat in the future will be able to do something against that and that's great. You are very lucky that your platelets went up. Who knows, maybe it was the hep c virus itself which was messing with your platelets. Maybe a new symptom they don't know about yet. The human body is so complicated.

Anyway, wishing you all the best on your road to SVR!

[newleaf09]

Wow, I'd kill for platelets at 172.  At 5 1/2 mos. post I am only at 119,000, but the first few months they were only going up by 1000 per month and now they are going up by 1,000 per week.  At this rate I may be normal sometime next year!  Joey, don't be discouraged by your counts.  I ended at 30,000 and only got to 90 at my 4 wk. followup.  It will all come.  I found the post EOT period almost as challenging as TX itself. Still have dry eyes, a weird knee ache and get tired if I overdo but by 6 mos. post I am otherwise amazingly normal and happy that it's all behind me.  Glad you are doing so well, Kathy.