Doctor - suggested me to wait

[Noku77]

Hello everyone,
Finally I got the results. The difference with the other test were the viral load. Genotype 1B, viral load 1.975.000 and on the first tests was 1.7 x 10^8, 170.000.000. After he visited me and checked my blood test he told me that I am at the early stage of disease and based on his experience I have to wait. He also told me, that twice a year I have to redo some tests and once a year I have to do another tests. What to say I, was so decided to go throught TX therapy but he told me, due to side effect that these medicaments have now, is better to wait a bit. he told me also that are 5-6 pharmaceutical companies that already are claiming that already a new cure are ready and are on the test phase. After 2 years I can start with the new cures. The existing cure is here and you can start when you want. Spoke to him also for the hygene and also what I must do in case to not infect other people. He told me almost everything you guys told me on my previous post and when I have to go to the dentist i have to let him know about my proble. What to say more.
Regards
n

[Noku77]

Thank you very much for you encouragement. The doctor I meet is the one who discovered the Hep D. I felt lucky  to meet such experienced doctor. I explained him - what was my profession, how many hours I do work etc. etc. I don't know if he is the best of Europe, but surely is among the best, and compare to what doctor told me here is far better. But smth that helped and extend my knowledge about this disease is this website where people share their experience and see somehow , how their doctor is treating them. Thank you again
Regards
n  

[rivll]

Hi.
You saw a leading Hepatologist. He advised you to wait and to make sure to continue to be monitored.
I trust your Dr. if you do and I believe that you will follow up with monitoring your health.
We often tell people to follow the instructions of their Hepa. You sought out the best in Europe and he has advised you. I wish you all the best and know that you you will follow through with whatever needs to be done.
Please stay in touch and good luck with starting an HCV forum in your language. It is a wonderful idea.
I wish you all the best.

[Noku77]

thank you for you reply. It make sense what you are saying to me, but as I told me I was convicted to start the tx asap and he told me to wait a bit. At the end I asked him between these two way what I must do. He said right way I heve to wait.
Regards
n

[Bali05]

"if there is smth wrong I will start immediately the cure."
Personally I would not want to wait until something is "wrong" and
starting tx when something is wrong is not great either.
I would want to know from your Dr. what would be a reason
for him or what needs to be wrong for him to decide to tx now.
In order to postpone tx I would need know to exactly which meds
I am waiting for and why he is confident that they will be available
in 2 years.

BTW the patent on Pegasys INF is due to expire 2018. It would not surprise me if it takes another 5 years for INF free tx to be FDA approved
but of course I could be wrong.

b

[Noku77]

Thank u for you reply. He also told me that. He told me to lose 1kg in 2 month. He never said that this or that food is bad. Just try to decrease carbohydrates. I will be in close contact with him during this period and iftthere is smth wrong I will start immediately the cure. He told to make test twice per year and some others test once.

[Diana66]

Hmmm, not to be a downer, but I had a high protein, low carbs diet for very long time , it did not make any difference on hep c progression. It will help you with the weight loss though

As for the non interferon meds: there isn't yet any guarantee that they will ever make the market. Maybe they will, probably they will. But keep a close eye on the condition of your liver and on other extra hepatic manifestations.

Liver damage is not the only thing which can happen

Good luck

[Noku77]

In fact we did not mentioned the name of them. Just that they are on test phase and in 2-3 year will be ready with less side effects. The actual cure was interferon +ribavirin and biocep....or telepravir. He told me that new drugs will be all pills. Meanwhile during this time I have to do some analysis every 6 months. Spoke him about the diet and he told me that my food has to be will less carbohydrates and try to avoid sweet things

[Bali05]

Hi Noku77,
I would want to know exactly which meds your Dr, says will be available in
2 years that have  less side effects and that you should wait for.

b

[pooh55811]

Your situation is a little more complicated than many others due to where you live and where your doctor resides. It is great you found a good doctor, an experienced hepatologist. Please let us know how everything goes with you and please let us know when you do treat. And especially let us know after you treat that you were cured. We all love success stories and we hope everyone will attain Sustained Virologic Response (Cure). Best of luck.

[Noku77]

He exactly told me now that I am remembering that your desease is modest. We have to motorised it. Don't know what to say he is one of the best and he have seen a lot of people in the stage I am. He also has made his personal discoveries on this issue and to me he is the best in Italy and the best I could find He was explaining to me that during the cure you have to be very close to the hepatologist because in case that you don't have a svr in 3 week you have to suspend the therapy because risk virus mutations, and possibly if you continue the therapy for 24_48 weeks you risk that even the new drugs will have no effect on you. Spoke with him for 45 minutes and I do not really remember everything he told me, but I am going to follow his advice even though I was thinking to go through tx asap. A sincere big big thank to this wonderful website and to all of you that helped me a lot during this period and the days that are comming. You helped me a lot. As you helped and are helping me I will manage to open asap a website like this in Albanian language to help people here that do not have the possibility to travel outside country not to be lied by the corrupted doctors who are trying to sell friend's pills.

[Noku77]

He exactly told me now that I am remembering that your desease is modest. We have to monitorise it. Don't know what to say he is one of the best and he have seen a lot of people in the stage. He also has made his personal descovers on this issue and to me he is the best in Italy and the best I could find. He was explaining to me that during the cure yog the cure you have to be very close to the hepatologist because in case that you don't have a svr in 3 week you have to suspend the therapy because risk virus mutations, and possibly even the new drugs will have no chanse. Spoke with him for 45 minutes and I do not really remember everything he told me, but I am going to follow his advice eventhough I was thinking to go through tx asap.

[nygirl7]

My doctor didn't even want me to be tested.  then she said my biopsy report was fine.  I went to the specialist finally - he was like well bad news you are stage three. Glad I was biopsied I felt perfectly fine and had no idea anything was wrong and neither did my PRIMARY CARE doctor.

Have you been seen by a heptologist or is this a primary doc?

Also on here we have seen many many new drugs not pan out due to unforseen circumstances in the past. One can never guarantee when and if the new drugs will come to market. We hope and believe they will but........not worth wasting two thirds of your liver on if you dont have to.

[bbj2856]

I guess i am different but if I know I have something wrong and it wont get better just get worse then why would I want to get worse.
My Dr told me I could wait another year come back do liver biopsy an treat then. If I was against treatment. I said if I have this why would I want to wait. His answer was I would not wait. He said you looking at 2 med's Pegyus  and Rebapak  now if you wait there may be 3 and that may be a year of treatment 48 weeks.  I said do it now get it out my body.
This desease dont get better it gets worse and so does your liver.

bbj

[Shdwsldy]

Ultimately it is entirely up to you whether or not you want to wait.  As a previous poster mentioned, you never know when the new drugs will actually end up being approved.  And as my husband is finding out, things can change in your condition when you least expect it.  He has only known for about a month of his HCV, but in the last week something has gone awry with his liver and it is not functioning the way it is supposed to be.  Prior to all that, all the tests have not indicated any problems so they had not done a liver biopsy.  Now he is in the hospital, been referred to an actual hepatologist, and is awaiting a time for them to do a liver biopsy today.

[Noku77]

I haven't done the biopsy. I had a lot of eco of the last 2 Months and an elastografia the one that shows liver fibrosis. He told me that thre is no need for the biopsy in this stage. After he visited me I was told that would be better to wait a bit. The cure is there if I change my mind I can start from tomorrow. I do not like to mention names but according to what I have read for him, he is among the best all over the world, and he has done his discovery for hepatitis and is well known for  this issue. According to him I am at the early stage 0-1. The liver is a bit fatty but this is due to my overweight, I have 10-12kg overweight. I have to lose 1 kg for 2 months, easy easy. I will have the desease under monitoring. At the beginning I was for the therapy than I decided to wait after doctor suggest

[Noku77]

I haven't done the biopsy. I had a lot of eco of the last 2 Months and an elastografia the one that shows liver fibrosis. He told me that thre is no need for the biopsy in this stage. After he visited me I was told that would be better to wait a bit. The cure is there if I change my mind I can start from tomorrow. I do not like to mention names but according to what I have read for him, he is among the best all over the world, and he has done his discovery for hepatitis and is well known for  this issue. According to him I am at the early stage 0-1. The liver is a bit fatty but this is due to my overweight, I have 10-12kg overweight. I have to lose 1 kg for 2 months, easy easy. I will have the desease under monitoring. At the beginning I was for the therapy than I decided to wait after doctor suggestions

[Advocate1955]

Have you had a liver biopsy, and do you know the actual stage of your liver disease?
Advocate1955

[copyman]

You doctor is correct that there are new drugs being tested. But there are no guarantees these drugs will make it to market. Or it could take another 5-10 years for FDA approval.

On the other hand there are drugs right now that offer a 80% cure. The treatment can be harsh but MOST of the time it is not that bad.

Personally I would treat now. Don't make sense to wait and take a chance of liver fibrosis progressing and/or suffer from hepatic manifestations.

Best of luck