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545538 tn?1295992017

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

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.
27 Responses
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717272 tn?1277590780
High BMI was the reason that dosing of ribivirin became weight-based.   I feel that weight-based dosing is one of the major reasons that SVR rates for geno 1's are improving.

m-strings, it's a pleasure to hear from an articulate poster.  I hope we hear a lot more from you!
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545538 tn?1295992017
Thank you so much. I wish you the best too!
Kathy
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Avatar universal
Congratulations on your great news!!
I wish you the best of luck.
Be well,
Mike
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768754 tn?1373918737
I also type too fast.  Meant to say "That was their advice based upon their professional experience."  
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768754 tn?1373918737
I was told by a medical expert that it was better to be overweight than underweight when treating.  Have no studies to back that up.  That was their experience.
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545538 tn?1295992017
No, my doctors didn't give opposite advice, they simply didn't care about my BMI and treating. They were concerned about my plateletes, but not my BMI.

What is so wrong about people with a high BMI being encouraged to try treatment? If it doesn't work by 4 or 12 weeks they can just stop the way any other treater can stop. Why can't we be encouraged too?
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29837 tn?1414534648
Your question poses a response dilemma for a lot of us. I'm a 4 time non-responder and know the agony of defeat. However, if you consider there is no other treatment and in my case, the ever hanging dark cloud above me daily of the possibility I may get to the point of needing a liver transplant and not getting one in time, there's no question in my mind that I want to go for a 5th treatment.

I won't do the traditional treatment any more since it did greatly affect my body and looks and promises no results. I will however go for the Protease Inhibitor drugs which the doctor is currently trying to get me before they are released to the public.

I was one of the fortunate to not become anemic or have other sides to have the doctor stop treatment. In all four cases (except for the Infergen disaster), treatment was stopped because I did not respond after months of trying.

I think if anyone can wait, they should. The doctor is best to make that decision though. In my case, I can wait but with caution and scrutiny and timely lab tests. I hope for the best for you and anyone else agonizing over this problem,.,,

Magnum
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179856 tn?1333547362
Sorry I cannot seem to type correctly today

It should read everything we've stated is "wrong" not "wroong" and
I was "quite" thin not "quit" thin.

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179856 tn?1333547362
It seems that some of the experts here who send adamant messages about BMI and Treatment are giving the opposite advice that the experts in the fields have been giving some patients."

They are saying that obesity is a plus factor for treatment? I've never seen anything in study data except the exact opposite information.  Can you please post the data, perhaps everything we've read is wroong or not current information but all I have ever heard discussed by any expert is that obsesity is a negative predictor and one should do everything they can before treatment to remedy the situation.

Nobody ever said someone who is morbidly obese cannot achieve SVR - just that as with someone with cirrhosis...it's more difficult.

And to be objective I was quit thin and athletic when I started treatment which is supposed to be a positive factor yet I did not clear until somewhere between 12 - 24 and I was almost double dosing.
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768754 tn?1373918737
AMEN!  Here's to kicking HCV's derriere!
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768754 tn?1373918737
Re: "We always hope for the best outcome for anyone treating a disease, whether it's cancer, hcv or any other type of disease that requires very strong drugs for a long period of time."  Amen to that!  I totally agree.  

It's too bad you were not able to fully hear my message.  There are numerous people with high BMI who are turned off of this wonderful MedHelp community b/c they aren't being heard.  It seems that some of the experts here who send adamant messages about BMI and Treatment are giving the opposite advice that the experts in the fields have been giving some patients.  In fact, some have been down right rude about it and that just isn't acceptable.  Not saying that about you or Marcia, by any means, but maybe that might help you understand my earlier responses and defensiveness.  

I'm not saying we should ignore science.  My advice, rather, is to embrace science and look at ALL the data, including personal experiences not found in formal studies, and not discount them.  My reaction to the "you have to be careful" statement was that it was discounting.  That was my opinion, and I'm guessing I'm not alone.  People have a right to voice their opinions without being discounted.  There are other ways of sharing information.  Again, totally my opinion.  I'm not trying to be a bully about it.  I think this forum usually does a good job with being sensitive and supportive to people in general.  No reason why we cannot do the same on this thread, right?  I'm less worried about sensitivity than I am about just being respectful, mindful, and open to hearing what's happening in the tx world that may contradict some of the studies out there.    

Please feel free to email me if you have questions/comments.  More than happy to chat w/you.    
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Avatar universal
"The thing that came across a bit negatively was that you took the opportunity in Kathy’s thread  to add a note of caution to discuss something that didn’t pertain to her outcome".  

Just because it didn't pertain to her outcome doesn't mean the awareness factor should not be presented.  She mentioned the negative factors in her original post.  Nobody came in broaching the subject just because they felt like it.  Everyone is entitled to their own perspective. This is an open forum and it's not about sensitivity here, it's about facts.  

Thank goodness for studies and statics.  Otherwise, we could not move forward with the appropriate decisions for our own individual treatment.  The information regarding negative predictors is out there.  It's up to the individual how they wish to proceed.

We always hope for the best outcome for anyone treating a disease, whether it's cancer, hcv or any other type of disease that requires very strong drugs for a long period of time. Many people beat the odds, despite of the negative predictors but this is an open forum and everyone should be entitled to their opinion whether they agree or disagree.

Good luck to Kathy and hoping that 12 wk PCR is UND.  

dabdees
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476246 tn?1418870914
Thank you for your well wishes! And I truly wish that you will also get rid of this disease!

SVR for everyone!

Marcia
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768754 tn?1373918737
Hi Marcia:  

First, I'm very happy to hear about your SVR as well.  That is awesome!!


Re: Your comment: "I know that studies can be flawed, but they are the only thing we can work with."  I personally don’t believe it is the only thing we can work with.  I believe working with the individual and their personal experience is much more powerful than working with studies/statistics alone.  And that's coming from someone who's spent countless graduate hours/years studying research.  That’s just been my experience.  You also sound educated and I support what works for you.  It’s certainly not a debate.  It’s just about different mindsets and ways of thinking about things/prioritizing what works in our own individual lives.  I am fully supportive of scientific research as a tool to guide us in our personal decisions, but not as a religious doctrine to live by.  Scientists all have their biases, (and I am no different).


Re: your comment:  “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 love that you want to encourage people to be educated.  I most certainly don’t see anything wrong with that and it appears to be a strength of yours.  The thing that came across a bit negatively was that you took the opportunity in Kathy’s thread  to add a note of caution to discuss something that didn’t pertain to her outcome, as if it wasn’t okay for her to share the level of enthusiasm about her experience that high BMI did not negatively impact her treatment. From your reaction, you certainly did not intend this.  You may not think of it as a disclaimer, but I’m guessing if you asked Kathy if it felt like you were discounting her experience, she might have something to say about that.  Your comments have merit, but perhaps would be better received if discussed in a new thread.  I hope you are okay with my honesty in response.  I really do hate debates via threads because you never know your personal comments will be interpreted.  Please feel free to email me if you have further personal comments or wish me to clarify anything.


Again, I’m truly happy for you and your recovery from this ugly virus.  I hope I can join in the SVR ranks someday soon!        
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545538 tn?1295992017
Thanks Newleaf! I always enjoy your postings. I feel a kindred spirit in you.
Kathy
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717272 tn?1277590780
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.
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476246 tn?1418870914
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!
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476246 tn?1418870914
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?










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545538 tn?1295992017
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
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545538 tn?1295992017
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.
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545538 tn?1295992017
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.
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Avatar universal
Hi Kathy,

I wonder what caused your platelets to increase - mine went down to about 60, which isn't too bad. Mine started at 167. So glad your first labs were good! I also don't recall normal, although I never claimed to be normal in any way:) My only remaining side effects after 3 months are rosacea on my nose that started right after tx - a dermatologist insisted it was from drinking and i haven't had a sip in many years. I also have a bit of IBS but changing my diet and cutting out most sugar seems to help. What other side effects do you have? How's your energy level now?

Joey
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768754 tn?1373918737
Re: Your comment: "But we have to be careful not to encourage people to look past negative predicators, which could be taken care of before tx, if they have the chance to do so."

We also have to be careful not to try and mislead people into believing that waiting to lose weight = better treatment outcome potential.  People often point to studies to try and prove this point, but studies can be flawed, and assumptions that people pull from studies can also be misleading.  Studies are also about statistics, not about the individual person.  

Low viral load is also a predictor of achieving an SVR.  People who wait to treat risk the potential of increasing their viral load.  Respectfully, everyone needs to make their own decision on treating or not treating.  Kathy shared her story and it's important for people like myself to hear this side.  I don't think the disclaimer was necessary as it seems to try and take away the importance of the fact that high BMI, in her instance, did not equate negative treatment outcome.  That is her experience.  (And what a wonderful thing it is!  Congrats Kathy!)
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Avatar universal
One size does not fit all with this disease. I'm currently preparing to start tx next month. I'm aware of the sides from the meds, and I'd be a liar if I said it didn't concern me. But I can't see the future, so I don't know what I might experience. Since I'm only a grade 1/stage 1/2, the damage thats been done is minimal. Before it progresses any further I decided to treat now. My ALT levels have been rising since August, last test it was almost 300 up from 180. So something is definately going on in that liver of mine. I weighed the effects of not treating on my QOL to treating. And I'd much rather suffer for the short term, than fight liver disease the rest of my life. I have a good support system in place now, so no time is better than the present.
All I can say is learn, learn, learn as much as you can. Be proactive in decisions regarding your health. Its your body, not theirs. Your mind is a powerful tool. Think positive!
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