Hi, I read yr last post, (which was removed) and I understand how you
are feeling right now..the same way I felt, before I found my wonderful Doctor!
One thing I know about you is this: you have failed Tx before, so if you were a Geno 1, I dont think they are using Sofosbuvir on non-treatment naive :(
Have you also considered participating in a Clinical Trial, for non-treatment naives? I believe the website is clinicaltrials.gov...let me know if you cant find it, or navigate, etc..
Here is a clinical trial in Deland, Fl. trial 15309. You can find out more and give them your phone number to call you at "clinical connections.com. You stated in a previous post that you were looking for someone to help with treatment. As the BoceprevirGal has stated you may not even be able to get treatment soon due to past treatment and genotype. It could be a few years if not more before you can treat again unless you get into a clinical trial. the above stated trial is for 18-65 year old participants. So I wouldn't wait around for to long. Regardless, see a doctor for your hep C.. Good Choice.
I posted in one of your earlier posts which is now gone since you put personal info in it. In a nutshell all I really said is that while you are most fortunate to have the resources to treat what really matters more is knowing:
1. What is your Genotype
2. What was your past treatment response
☞ A partial responder is a person who had a ≥ 2 log drop in HCV RNA after 12 weeks therapy but never undetectable subsequently.
☞ A Null responder is a person who had < 2 log drop in HCV RNA after 12 weeks of previous interferon-based therapy
3. What stage of fibrosis are you?
There are many of us on here who treated one or more times in the past with duel therapy (Interferon & Ribavarin) who have treated again and finally cleared the virus. Based on what little you said on your prior post it sounds as if your side effects were not well managed. In some cases not being able to tolerate the side effects of dual therapy was a factor. A large part of treatment adherence is recognizing and treating the side effects before they become debilitating or incapacitating.
As others mentioned knowing more about your past treatment experience will allow for more detailed responses that are tapered to your particular situation.
Here is an old thread that resurfaces from time to time. I am not sure if there is anything in your area but I do know there are a few members in the Florida area who post once in a while. You may have to check back because it has been very slow on here the past few weeks.
i am researching stuff u guys have posted now- i am geno 1, they said my platlet level was down because my splean is becoming enlarge and eats more platlettes aparently it also effects somthing in the neck and the eventual outcome is a heart attack- so i need to do something now-
i don't remember but it was a year ago i failed after first shot- doc did not give omaprasial and i dehidrated that is why i need some one to help on a 24 hour basis - i am not sure if there is a hospital i could just stay at to do the chemo or a test facalty that would give better care my doc has to many patients and he leaves a lot to the pa--i will get an ultasound august 16-- can't they just take part of the splean out so it doesn't eat so many platletts- i am dealing with va and private doctors-- va wants to do nothing.
Low platelets and enlarged spleen? That sounds like it could be serious. I am not sure what you mean by taking part of the spleen....I have learned on here that an enlarged spleen is generally caused by another medical condition that will require medical treatment. I will let others address that when you are able to provide more details.
If you do not mind my asking what is the purpose of the ultrasound? Do you have a biopsy or some other method to evaluate the stage of fibrosis you are lined up?
Failed at the first shot? You are a Geno 1 and you stopped treatment after only one shot of Interferon? If that is the case I am wondering if you might be considered treatment naive? It could matter as far as trials go. Do you still have your medical records from that time period.
I hope someone else posts and offers input on treatment with only one shot.
Truly knowing these things are the basis for formulating your treatment options.
I do not want to get too far ahead of things but at current treatment with Triple therapy can be as long as 48 weeks. It is not something you could do on an inpatient basis.
"i don't remember but it was a year ago i failed after first shot- doc did not give omaprasial and i dehidrated that is why i need some one to help on a 24 hour basis"
I not sure I am understanding this. I have never heard of someone needing to stay at the hospital because of 1 shot of "interferon" a week. Why would that be? There are visiting home nurses. but 24 hours? I am just lost at that.
I was thinking you could ask about home health and maybe a care giver when you go to your doctor's appointment. I am not sure where you would ask but this was in a link someone posted in another thread a few minutes ago:
Again it would help matters if you could clarify your overall health and exact treatment experience. This is not to be nosy or intrusive but as has been mentioned in many ways your past treatment experience / response is a huge factor in your future treatment options.
i actually tried twice, 1 time 8 years ago and then 6 months ago. never got past the 2nd shot-
now i think i am in end stage viens in throat swelling constant pain in all organs, very tired, itoday is sunday night i will get appointmen with doc phillips tomorrow- but his first question was- so you must have used iv drugs--i said no but !! i think some of these docs may not be as helpfull as they should be. he gave me off to the pa and they just ordered th e drugs and sent them to my house -- no follow up- nothing for nausia- i went dehydrated had to stop(went in hospital for three day. i am 65 look great- insides are gone
hi i moved here from calif and have no support people that can baby sit me here- they never looked to see if such a short period of taking treatment did any good- apparently not, since it is progressing
Even with the best insurance their seems to be little help and instruction with treating hepatitis C. You say they never checked to see if treatment did any good because its still progressing. Guy you really have to do this stuff your self or find someone who is educated in hep C treatment to do for you. So you are on the right track. The sad thing is hepatitis C treatment doesn't come with in home support services. Should your insurance company pay for someone to come out and check on your? Yes. Is it paid for if your alone and have nobody there? Most likely. Have you or did you ask the insurance company for assistance with medication and home health services? Well? You have to let them know your alone. They don't know it nor do they ask. So you really have to be pro active and it appears your doing it now which is afterward. I know this is very frustrating and your not alone. This seems to happen to many people who start treatment and have little instruction, not prepared and receive in the mail boxes of serious medication to take. Your on your way to the doctor now to see what's going on with you. What treatment you've been on and you Genotype is really going to determine if you can even treat again in the near future. What treatment were you on?
What was your genotype? When was your last biopsy? If you want to know the condition of your liver your going to need to get a biopsy. It's very important you let your doctor before you treat or receive medical care that requires monitoring. Let us know your genotype and the type of past treatment you've been on. Then members can direct you to possible treatment options.
i actually tried twice, 1 time 8 years ago and then 6 months ago. never got past the 2nd shot-
Are you a Geno 1a or 1b? Not that it matters so much but I saw where you said you were a Geno 1.
If you tried therapy as recently as 6 months ago I am assuming you tried Triple Therapy since that is the SOC for Genotype 1. If all this is indeed the case then at this point I am not sure about your treatment options. Even if by some fluke you were considered treatment naive I agree that you do not seem like a viable candidate for Interferon treatment.
Do you remember which drugs you took 6 months ago? It could be importatnt.
Like Can-do says I encourage you to ask about a trial or Interferon-free treatment. It
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