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Post by Alsdad on Oct 27, 2015 22:47:39 GMT
Welcome to the forum Gary. We've chatted a little elsewhere, I recall. Jolie, good luck with your plan to obtain meds. Hope to see you joining our club whingeing about minor side effects soon . Sound advice, as usual Zanametambien. Why don't you guys start your own blogs on here? It can be quite therapeutic to do, rather than just having it all 'running around' inside your head.
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gary
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Post by gary on Oct 28, 2015 1:03:10 GMT
Jolie, I bought the Sof/Dac ASAP after reading Greg's blog and Rachel did not ask for paperwork. Fortunately, I contacted her and completed the bank transfer, etc., about 10 days before Mesochem started changing the requirements. I tried doing things by the book but couldn't find anyone willing to help, here or in China, in a short period of time so I decided I would buy it, have it sent to Shanghai, to my wife's friend's place, and then figure out how best to get it into the country. Worse case scenario was that I would have to throw or give it away and figure out another way but in the end I decided to fly over, put it in my suitcase and bring it home. Customs here or in Shanghai would have simply thrown it in the garbage if they had found it but it was a chance I was willing to take as the opportunity to be rid of the dragon was/is worth the money & small time investment. In Japan, people are only allowed to bring in a one or two month supply of medication IF they have a prescription and the medical system is quite strict/unforgiving with doctors who are seen as risk takers so accessing it any other way seemed/seems basically impossible. They are still pushing the Interferon/Riba option here though some of the other drugs have been okeyed and are being used, though not in the Sofo/Dac combo yet. It seems that Rachel is still sometimes willing to dispatch the meds without documentation, but it seems to be a hit and miss situation. Greg's method may be the easiest but I guess it depends on your situation. Anyway, hope things work out for you.
Alsdad, sorry about the mini-hijacking of your blog.
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gary
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Post by gary on Oct 28, 2015 2:00:27 GMT
Alsdad, yes, we chatted on the fixhepc site. I saw your post about starting this site so thought I would drop by and say hello and try to help spread the word that there are more resources online for people interested in treating with generics.
I understand about starting various personal blogs but I fear that starting my own would probably put people to sleep as it would not be very interesting.
It seems my Hep has been rather timid when compared to what others have gone through. Some of the stories I have read have made me feel very, very grateful that my experience has been so uneventful. Though I have had it for over 20 years and more than likely 30 plus years, I have no fibrosis, quite a low viral load, very reasonable AST, ALT, and other markers, etc, etc. For me, it has been more of a, generally minor, irritant than a serious health or life threatening situation.
Other than tinnitus and possibly being more irritable I haven't really be plagued by anything much. My treatment, though in the early stages, has been as unremarkable. So, I am not sure if there is much of value anyone would get out of reading what I would write. When I have consulted doctors in the past, they have generally been somewhat puzzled as to why my disease progression has been rather unremarkable and has progressed so little over the years. It seems to be just sitting in the background as a reminder not to repeat some of my youthful indiscretions and to remind me not to take good health for granted.
Other than fasting/juicing a few times a year for the past 15 years and having some ozone treatments in Cuba, I have lived my life as I did before finding out I was positive for HepC though I did give up the hard liquor years ago and more recently alcohol altogether. Anyway, good talking to you all and hope everyone gets treated successfully.
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Post by Alsdad on Oct 28, 2015 13:44:29 GMT
Gary, you're chatting about your own treatment story amongst other things. That's good enough for me. My detailed story is in my blog thread. And we don't do forum Naziism (sp?) here anyway . Your story's very simiar to mine, in that I also lived a normal, 'rude health' life (apart from going through the hell of interferon/riba 11 years ago after being diagnosed 13 years ago). But I started getting noticeable symptoms a couple of years ago, which had got steadily worse until I commenced treatment recently. I think anyone would have to be extraordinarily lucky to live out a normal life, having had HepC for most of it. It tends to catch up with people eventually. Which makes your decision to treat now, before it does catch up with you, a great one.
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gary
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Post by gary on Oct 29, 2015 2:18:39 GMT
Alsdad, your description "I also lived a normal, 'rude health' life" is quite apt. Perhaps my decline has been so gradual that I have mistaken it for "normal aging" (I am 53) when in reality it has been largely impacted by the HepC. My focus on the markers may have kept me from looking at the situation holistically and allowed me to fool myself into believing that the HepC wasn't having much of an effect. I am now on Day 4 so am very interested in seeing what happens over the next week or so in regards to energy levels, sleep quality/quantity, general well-being, etc. I am very much hoping to experience some of the positive results that others have experienced. I am also very happy I did not do the inteferon/riba as my initial doctor advised. After reading some of the horror stories it makes me realize how lucky I was to not have been so sick that I had no choice. These new drugs are/seem so, so much more user-friendly. The only side effects for me so far seem to be not needing as much sleep, waking up feeling more rested (with a smile on my face, not a grimace), less yawning and a general feeling of being more healthy - makes me wonder if I am projecting or actually experiencing as it is only day 4. Ringing in the ears is still there but maybe that will diminish as treatment progresses. Hope treatment continues going well for you and everyone else riding the generics train. It seems that more and more people are now at the stage where they are experiencing SVR and the energy of the forums is decidedly positive so I am hopeful that I will soon be able to post another SVR result and be able to add to the positive vibe.
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Post by Alsdad on Oct 29, 2015 10:29:03 GMT
Yes, many of the symptoms are insidious. It's easy to chalk them off to "I'm getting older". Successful treatment will tell you if they were HepC-related. For a while after my joint and muscle pain started (a couple of years ago,) I put it down to rheumatoid arthritis (which my dad had suffered badly with, so an easy conclusion to draw). It had got so bad by early this year, that I went to see a Rheumatology Consultant. Extensive investigations revealed no rheumatoid inflammation and no blood markers for it. The last week has seen marked improvement in my pain symptoms, even an improvement today over yesterday.
Like I said, treatment and time will tell.
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jolie
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Post by jolie on Oct 29, 2015 18:48:03 GMT
hi Gary, thanks for your story, most interesting & yes, you're very wise not to tx with Interferon.
Those new DAA's are just like a little miracles by comparison with 95% success rate, but over on the FixHepC site, 100% success rate seems to be the norm so far, judging by people life reporting, just amazing. We're really so lucky & fortunate to be able to access the generic meds now with the help of Doc James & Greg or our own wits, many HCV patients died while waiting for this new treatment who could have been treated successfully now.
I agree that the "treatment blogs" could be insignificant & very short, like:
"OK, got the meds, not much sides, finished, SVR, getting on with my life now, bye & good luck everyone else !"
I'll hopefully start my own tx mid. November, as all is now in place & am ready to do it, thanks to Greg's help & support. That man is a legend!
best of luck guys & girls! jolie xxxxx
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gary
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Post by gary on Oct 30, 2015 9:31:50 GMT
Jolie, the DDA's truly do seem to be little miracles. It would be so, so grand to have a treatment blog such as you wrote. Hopefully, you will not be waiting much longer and will be also to join the SVR group soon after, maybe even in time for a lovely Christmas present at your 4 week blood tests. I agree that Greg (and Dr Freeman) are legends - Greg answered all of my questions very quickly so I was able to act quickly before things tightened up. Dr Freeman also answered my blog questions even though I am not a patient of his so I am truly grateful for their kindnesses. Hopefully, the government supports them and not big Pharma so everyone who needs this treatment can get it quickly and at a reasonable cost. I see you went through the treatment hell of peg/riba years ago so hopefully you get an easy ride this time around. Good luck!!
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gary
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Post by gary on Oct 30, 2015 9:42:38 GMT
Yes, many of the symptoms are insidious. It's easy to chalk them off to "I'm getting older". Successful treatment will tell you if they were HepC-related. For a while after my joint and muscle pain started (a couple of years ago,) I put it down to rheumatoid arthritis (which my dad had suffered badly with, so an easy conclusion to draw). It had got so bad by early this year, that I went to see a Rheumatology Consultant. Extensive investigations revealed no rheumatoid inflammation and no blood markers for it. The last week has seen marked improvement in my pain symptoms, even an improvement today over yesterday. Like I said, treatment and time will tell. Alsdad, hopefully you continue to improve as the Hep loosens it grip on your health. As for myself, I would be ecstatic if I return to the way I was when I was in my 30s but would be more than happy if I just return to like I was in my 40s. Hell, I'll actually be very, very happy just to be rid of this virus and not have to think about it, research treatment options, wonder if it is suddenly going to get worse, etc., etc. It is amazing how people are reporting such dramatic changes, and as you wrote, almost daily. I guess it goes to show that HepC isn't just a liver virus but truly screws with the whole body, mind, spirit continuum.
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Post by zanametambien on Oct 31, 2015 23:56:00 GMT
Good to have others share their experience.. Good luck to you Gary you are just behind me as I enter 17th day of treatment and agree with the description of symptoms classified as quasi insidious.. at times I am not sure of what I have been feeling for the last 44 years that I have been infected.. I know of a general malaise that I a lot of times and becoming more noticeable with the passage of time. As for treatment I only had a day and a half of head aches on the 8th and 9th day and after that it has been a very smooth ride. I feel much more energy and ability to concentrate, perhaps a little less joint pain but perhaps too early to really draw conclusions.
Am very happy for you Jolie since learning that the UK is allowing imports for antivirals without doctors prescriptions. I hope this allows you to make a decision to go forth and import. I think the contact I sent you for the Sofosbuvir could even present you with options on providing a local prescription if the pharmaceutical lab that she works with Natco requires it which I think they do. I hope that Mesochem is a viable alternative and that it has not added additional bureaucratic type requirements to acquiring APIs.
All the real content I can add to our thread at this juncture, is that things could not be going better, the only unnerving thought is that after my 65th birthday in a couple of weeks that I will have to begin thinking of living longer than I had previously anticipated. That seems to be the thought that permeates my ongoing thinking as treatment charges forward. Its kind of cool as I never dreamt it that my alternatives could change so drastically in such a short period of time. In the worst or perhaps the best scenario would be to retire and really devote time to passionate matters, for me that is music and my saxophones as I have played since I was 12 years old and made my living from that for many many years, although its difficult to calculate the economic part of retirement in this day and age, but perhaps in the worst case I can take a couple of years of continuous work to get my chops back and if money becomes an issue I can work on a suitable repertoire to make some coin on the subway. Suffice it to say that I would not have contemplated any of this just a few short weeks ago.. I hope this is relevant to treatment and its many side effects..
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gary
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Post by gary on Nov 2, 2015 12:57:33 GMT
Zanametambien, I am hoping for a smooth ride - so far very little in the way of side effects. Picking up the sax for a few more years sounds like a grand plan. Good luck with the remainder of you tx.
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jolie
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Post by jolie on Nov 2, 2015 17:10:23 GMT
Hi Gary & zanametambien & all, I cannot wait to start but have to wait a bit until the new Daclatasvir is tested in Australia as this is a very new generic & they only just got it from one of the Bangladesh'e Pharma's. So moment Greg gives me the go ahead I'll be ordering my meds from him, both Sofo & Dac for 12 weeks.
I also got an email reply from Rachel Mesochem & she too was willing to post me the meds, so now I'm spoiled for choice!. As Greg was my first, preferred option so am going to go with him, hopefully will order the meds this week once the tests are done but am tempted to order from Rachel as well in case I need to do longer tx then the 12 but not as long as 24….something to ponder about.
I have been feeling so progressively tired the last few months, we're the same age Gary & that feeling of exhaustion is def HCV , it is not "ageing". I remember my 88 years old Mother had more energy then I did a few years back. For me the worse symptoms are the physical exhaustion & the loss of many cognitive abilities - "mental exhaustion". HCV affects all aspects of person's life, not just the bloods….I just try not to think about it too much otherwise would get seriously depressed about the whole thing.
Anyway, hopefully it all will go away with the magic pills & soon.
Once again thanks for sharing your stories everyone, jolie xxxx
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gary
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Post by gary on Nov 3, 2015 5:49:55 GMT
Jolie, I here what you are saying. Being spoiled for choices in fantastic! I would be very tempted to give in and simply order from Mesochem (no, I definitely would give in but not trying to persuade you one way or the other) while waiting for the tests to finish. If it turns out there is a problem with the Bangladesh Pharma's goods you would still have the other but I guess it really depends on your financial and treatment situation and other considerations. I think Greg would understand if you simply ordered from the first opportunity that comes along but as you wrote it will probably only be a few more days for the test results so....... I was very nervous about the pipeline being shut down so jumped on the opportunity ASAP after reading Greg's blog even though I had no way of knowing how I would get it into the country. However, now with all of the other options opening up it seems that it may/will be impossible for Big Pharma or even individual governments to completely shut the access down though they may be able to make it more difficult to access. My concern is that Big Pharma may ask the Aus/UK/etc governments to cut access to generics for a minuscule cut in the non-generic drugs but that may not even be a consideration for the governments as allowing access gives them some serious negotiating power if they want to use it.
It seems that for you adding Riba to the mix may also be an option but Riba does seem to have a nasty downside so adding 12 weeks or part of that of just Sof/Dac looks like an equally good option. I also saw on the fishepc site that adding simeprevir or asunaprevir to the cocktail may be advised - though that is all something that would be best confirmed with Doc Freeman. For me, the stress release just from knowing it was on the way was great. I am on day 9 and am feeling great, so far. My energy levels are getting better - sometimes a bit tired so need more sleep but overall the energy is up, my aches and pains are going away, my thinking is clearer and I am generally a happier camper and the best thing is my optimism is strengthening toward previous levels. The first couple of weeks are likely the toughest as it looks like most of the bad guys are being eliminated so the body is using tons of energy while the good battle is being fought but after that it looks like it is almost all positive. Looking at all the feedback the magic pills will not only most certainly make it all go away but will give you true health back and do it amazingly quickly. Stay positive and keep us updated!
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Post by zanametambien on Nov 12, 2015 12:59:32 GMT
Wanted to share with you as previously promised the outcome of first follow after starting treatment 29 days ago. Treatment is for HCV GT1B with Sofosbuvir/Daclatasvir . Most likely infection was back 44 years ago. Was informed of an F1 level of fibrosis. Also I wont have results of viral load exams back prior to a couple of weeks and doctor has not looked at these results that I am providing you, but the labs here provide results directly to patient, so I can share with you.
One of the exams solicited by my doctor was for alpha-fetoprotein AFP exam which incremented its level from previous exam or reading from 6.4 ng/mL to 9.5 ng/mL . AFP is a protein produced by the liver and is usually monitored for higher readings ( 8.1 ng/mL) for detecting cancerous cells in certain organs. If you or anyone has relevant information I would appreciate pertinent commentaries.
Exam Unit of Measurement Actual Reading Previous Reading SGOT U/L 25 54 SGPT U/L 31 104 SGPT/SGPT Index - 0.8 1.0 GGT U/L 31 121 Alcaline Fostfates U/L 41 48 Total Bilirubin Mg/dL 0.61 0.73 Direct Bilirubin Mg/dL 0.24 0.23 Protrombine Time Seconds 10.6 10.7
From first sight things look very promising as I don’t think that I have had normal liver enzymes for probably the last four decades. I will advise of any changes that my doctor may inform on November 20th when I see him.
Yes, well worth noting that liver functions and enzymes here are acronyms different than AST and ALT but do correspond to one or the other.
Best regards,
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Post by zanametambien on Nov 12, 2015 13:05:03 GMT
Sorry for the confusing layout of exam results above. Forum seems to have reformatted the table that I had copied and pasted to the posting. At any rate, it seems that all liver enzymes have returned to normal functional readings with the exception of AFP Alpha fetoprotein.
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