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Post by zanametambien on Oct 17, 2015 22:09:32 GMT
Alsdad..
First of all great forum.. If you recall we have communicated in one of the Medhelp forums and you helped me to capsulate the Dac API..
I cant believe how much I identify with your last diary post just after four days into my treatment.
I was sort of waiting the third day with a certain amount of anxiety given your experience of your third day, but I experienced non of that, no side effects up to now. Quite the contrary I am feeling less grouchy and more clear headed and believe that less foot pain than previously. I know that this stuff works fast in lowering viral loads and hope that the effects I am starting to perceive are not only wishful thinking on my part. I think even my partner is noticing as she been with me continuously since starting and says that I am in a better mood and less grouchy towards what I previously was highly critical to almost everything that she had to share, to the point of sometimes feeling embarrassed of myself for not having better judgment and control. At least now I am thinking a bit prior to lashing out. Liver ailments have always been associated with anger.. Hope this is all a true perception.
Anyway, thanks for sharing what you are experiencing as it helps to compare notes in this unchartered territory we are in.
Also, I hope this goes gets posted this time, as I have tried a couple of other times and think that the forum blocked my post.. Took a look at my profile and don't think I am doing anything wrong, so lets hope this time takes.
Thanks and best wishes for your continued success.
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Post by Alsdad on Oct 17, 2015 22:40:04 GMT
Hello again zanametambien, and welcome to the forum. Yes, the clearing of brain fog is amazing isn't it? I was saying to someone else that I feel like I've been given some of that medication that was given to the apes to make them more intelligent in the recent "Planet of the Apes" movie . Great that you're not getting any serious sides. The ones that I got really weren't that bad. The nicest thing for me is not being short-tempered with my young son any more. He's a bright and lively kid, and hard work at times. I was beginning to hate myself for not being patient enough with him I do the admin on here, and there are no special restrictions or permissions for any members. Any member should be able to post on any unlocked thread. I notice from the 'members online' list that you're hidden. Maybe that's causing a conflict with the forum software, and it can't recognise you're logged in? But I'm guessing. I'll ask the question at Freeforums Support. Hope to see you around some more. The more info/support we exchange, the easier it gets for us (and others thinking of climbing onboard for the ride).
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Post by zanametambien on Oct 19, 2015 17:59:05 GMT
I could not agree more that sharing all of our points of view, is not only to compare notes amongst ourselves to shine our paths forth, but to conceivably help others that are thinking of taking the treatment option. On that note I wanted to expand a bit more on your observations Alsdad reference the lifting of brain fog that you talk about. Please allow me to share what I have been experiencing before and after starting treatment 6 days ago and see if this rings true to you or anyone else, as perhaps brain fog could have various symptoms.
A little of my background first: Am close to 65 years old male, infected with HCV GT1b probably 44 years ago, treatment naïve, I have remained asymptomatic, I think, for most of this time frame. I say I think as the perhaps the mere passage of time (44 years) could in itself cloud a whole bunch of things, but the following have been symptoms that I hope are attributable to nothing else than HCV.
The last 2-3 years I have noticed a pronounced change in the following symptoms. 1)Growing feeling of anxiety and anguish without knowledge of its source. 2)Not clearly determining the passage of time as in months. When I last travelled to a certain destination. 3)When speaking having trouble choosing my words, or forgetting simple words. I speak a couple of languages and it happens with both. 4)Difficulty sometimes in making decisions and shifting back and forth with options. 5)Taking a long time in performing tasks, work and otherwise. 6)Much pain in my feet at times. I attributed to the many years that I ran. 7)Unable to sleep without the usage of sleeping pills. Rest is important for the liver to regenerate.
I know that the nature of the disease is that as time extends out the likelihood or remaining asymptomatic grows smaller. Do you and others identify with some of these symptoms? After 6 days of treatment I think I am feeling a bit more relieved in some of these things and have not suffered any side effects of the treatment at all.
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Post by Alsdad on Oct 19, 2015 21:41:38 GMT
The two symptoms I can identify with most zanametambien are 1 and 6.
In the case of symptom 1, I was suffering from occasional extreme panic attacks. I'd feel like I was about to collapse from some unknown cause! It always took a sustained series of 'pep talks' to myself to get through them, quite often in trying circumstances such as high-pressure work situations. I believe that 'another side of the same coin' with this symptom was the almost permanent irritability and impatience that I was fighting. Nothing could ever come fast enough for me.
With symptom 6, I have a theory that the virus 'attacks' or 'targets' parts of the body that the immune and repair system has had issues with. Joint pain is a very common syptom of later stage hepatitis c. I had some extensive investigations into my joint pain done at my local Rheumatology Clinic. They found no blood markers, nor ultrasound/xray evidence for arthritis, and concluded that the joint pain was probably hepc-related, a conclusion I'd already made myself (but wanted professional investigation of this). Another, associated symptom is sustained muscle injury. I first noticed it about four years ago, when I carried my then three year old son back from the beach to our hotel when on holiday. The muscles in my arm ached for weeks afterward, far beyond the lenghth of time of a strain, but not painful enough to be any serious damage. This has been a recurring problem since.
Another, rather weird symptom that I had not associated with hepc until other heppers brought it up in discussion is 'mobile phone syndrome'. It feels like your mobile phone is vibrating in your pocket, so you go to check it, but it's been inactive. Or it's not even in your pocket!
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Post by zanametambien on Oct 19, 2015 22:37:29 GMT
Interesting, and can I identify with the permanent irritability and impatience in that nothing can ever come fast enough.. I hope that changes. I think that may be tied to feelings of anxiety and anguish that you describe in the way of unexplained panic attacks.
Am wondering as you are 49 days into your tx have any of these symptoms subsided or gone away hopefully?
The mobile phone syndrome I have not experienced.. Pretty strange feeling I bet.
It would be great if we could get others to weigh in on this discussion.. Perhaps its not in the best section of the forum as its on your personal chat, heh?
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Post by Alsdad on Oct 19, 2015 23:13:46 GMT
The irritability has all-but subsided, and I've had one very minor panic attack in the last three weeks (yesterday), which quickly subsided when I was distracted by family stuff. The joint pain got worse on the first two weeks of treatment, but has improved to be slightly better than pre-treatment, with a few quite good days. Not had any prolonged muscle strains recently either. Mobile phone syndrome seems to have gone (where's some wood to touch ). Someone was speculating that it's the virus targeting your nervous system. Weird, I can tell you!
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Post by zanametambien on Oct 23, 2015 13:15:09 GMT
Yes all well until the 8th day when I woke up with a significant headache that stayed for about 36 hours. It got pretty intense as it did not seem to subside. I could sleep but when awake it would still be there. Now on the beginning of the 10th day of tx and it is still there but not totally subsided. I think others have described it as a headache that does not quite go away, but that can also be quite pronounced. Other than that moving along nicely with what seems lower joint pain especially in the feet and in a positive state of mind. WIll have blood tests on the 28th day as indicated by my doctor, this will be done on November 11th and have an appointment with him on Friday the 13th. Am trying not to be superstitious about the appointment date.
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Post by Alsdad on Oct 24, 2015 8:17:55 GMT
Yes, I got a few headaches in the first two weeks, and still get the occasional one. It's quite a common symptom apparently. I'm on 500mg Naproxen BD and Paracetamol at least once daily, for joint pain. Even extra Paracetamol doesn't touch the headaches.
A big part of running my business involves hard physical work. I think dehydration may be a big factor, and plenty of mineral water the key to keeping the headaches damped down.
I don't wish to tempt fate for you, but Alsdad The Fortune Teller thinks you're in for some very good news from your four week bloods, Friday the thirteenth or not.
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Post by zanametambien on Oct 25, 2015 0:35:52 GMT
Hey Alsdad, thanks for the kind thoughts and wishes..
Headaches have subsided but joint pain has diminished but has not gone away. That in itself would be quite miraculous. Clearer thinking seems to accompany the general feelings of well being that have accompanied treatment thus far. So the only side effect to day 11 has been a couple of days of headache. I also seem to be drawing conclusion that the cleaner you keep your diet the less likelihood of headache and pains etc.
The only other medication that I take is pills to sleep. What is called Somno here and sometimes Alprozalam. I try to keep this down and switch between one and the other to not become dependent. I have not slept well for years, could it be consequence of the HCV, I don't know.
Also one other thing worth mentioning is that 3 years ago upon follow up of yearly blood work in monitoring health in general and liver enzymes I asked the doctor to include a reading of Testosterone. I came back with an very elevated amount about 1454 ng/dL . Twice as high as of the normal level for a guy my age. Must note that this is the free floating testosterone in the blood and not the one that binds to SHBG, sex hormones. That testosterone binding to SHBG is very normal. They also found a bit high Cortisol, stress and hormone and reason perhaps as to why I don't sleep well. At any rate I went to an endocrinologist and told me that he had never seen a profile quite like mine. But told me that he would call back as he did and he provided some findings between these reading and HCV. Apparently there is a population out there with this phenomena, and the conclusion is that high testosterone can lead faster to liver deterioration fibrosis, carcinoma and the works. My level of fibrosis was F0 and upon last reading was categorized as F1. So all the more reason to start treatment sooner than later.
I am extremely grateful for having the chance to get treatment. I know that there is a lot of people out there that cant afford even the amount of cost of generics but at least a much larger amount can get treatment versus having no possibility at the costs offered by big pharma.
Alsdad, you and I seem to be carrying on alone in this conversation and I think we are sharing with each other our personal experience which should not limit others from sharing theirs and validating and enriching the experience of this thread further.
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Post by Alsdad on Oct 25, 2015 19:26:02 GMT
I think you're right about diet and headaches: They seem to be worse particularly after high sugar intake for me. I've also noticed that heavy food intake results in worse joint pain the following day.
Wrt this dicussion, you have to bear in mind that I only went public with this forum less than four weeks ago, and it currently has only eighteen members. Yet, despite having hardly any publicity, and it being a VERY specialist forum, it has still had over six thousand hits (averaging about 230 a day). The only other forum specializing in hepc generics discussion (fixhepc.com , where I help out as a moderator), got exposure in an Australian national newspaper a few weeks ago and it's viewer hits went ballistic (more than two million to date). Yet it still has less than three hundred and fifty members, and only gets a handful of posts each day. The point I'm trying to make is: It might seem like we're talking to ourselves, but a lot of people are reading these posts and, I'm sure, are appreciative of the info we put in them. The way I see it is: If just one person obtains generic medicines and is cured because of the info we posters put out there, It's all been worthwhile.
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Post by zanametambien on Oct 26, 2015 14:55:17 GMT
Could not agree more reference your comments regarding our experience helping others. I hope that the span of time of 53 days between your treatment and mine that we can provide useful information for others that are in the brink of deciding whether or not to seek generic antiviral treatment.
As previously commented after 13 days into treatment the only effects have been positive with the exception of a couple of days that have been ridden with headaches, and am almost sure that it has to do with diet and sugar as you also note. I will be able to shortly support the progress in the treatment on Friday the 13th of November after my labs are scrutinize by my doctor.
The stats and metrics you quote for this forums accessibility are impressive.
Have a good week.
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jolie
New Member
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Post by jolie on Oct 26, 2015 16:42:33 GMT
Just to say hi & thanks for posting, it is most valuable to read your stories to many such as myself who are considering tx with generic meds, hopefully soon. I dont post much but I do read & I do appreciate your time & willingness to share your experiences. I post more on the FixHepC, the Australian site.
Zanametambien, I have a question, I assume you got your meds from Mesochem, may I ask what were the quantities you ordered? Was it Sof & Dac ? I assume you did order it some time ago when you did not need a Doc's prescription nor anything else to buy the meds?
I'm considering the many options available & this is my option no.2
Best of luck with the remaining of your tx & the test on Friday the 13th !
Jolie
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Post by zanametambien on Oct 26, 2015 20:16:08 GMT
Yes Jolie.. I guess it depends on the treatment that you have been prescribed. I was prescribed 12 weeks of Sofosbuvir/Daclatasvir; thus I ordered 6 grams of Daclatasvir from Mesochem. To figure out the amount of API required you basically take the daily milligrams required times the amount of doses required. Since I needed 84 days @ 60mg, the exercise is 84 x 60 = 5.040 grams required, but rounded up to 6 grams. I also capsulated the powdered my self as in the country I live I could not find a chemist to do. The sofosbuvir I ordered from India and it was from one of the Gilead license companies. If you require contacts I would be happy to provide those for you, and I strongly encourage you to take the best qualified option to starting treatment very soon.
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gary
New Member
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Post by gary on Oct 27, 2015 15:20:10 GMT
Hello all, very nice forum, Alsdad! It looks like it took quite an effort to set it up. I agree with Jolie that there is much value in reading about the symptoms, side effects, etc. I have just started (HCV GT3B)- day 2 of 12 weeks tx - with Sof/Dac from Mesochem, self-encapsulated as no doctors in Japan will write a prescription. I have managed to find someone to do the blood tests and informally follow my progress. I also don't post much but reading the posts is very informative so am looking forward to reading more. Regards, Gary
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jolie
New Member
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Post by jolie on Oct 27, 2015 17:09:49 GMT
Yes Jolie.. I guess it depends on the treatment that you have been prescribed. I was prescribed 12 weeks of Sofosbuvir/Daclatasvir; thus I ordered 6 grams of Daclatasvir from Mesochem. To figure out the amount of API required you basically take the daily milligrams required times the amount of doses required. Since I needed 84 days @ 60mg, the exercise is 84 x 60 = 5.040 grams required, but rounded up to 6 grams. I also capsulated the powdered my self as in the country I live I could not find a chemist to do. The sofosbuvir I ordered from India and it was from one of the Gilead license companies. If you require contacts I would be happy to provide those for you, and I strongly encourage you to take the best qualified option to starting treatment very soon. Hi Thanks for that & yes please do send me your contact for the Indian Sofo if I can buy it without Doc's script - something almost impossible to get for me here. You can PM me, many thanks. Meantime I did find the page where I had the Mesochem quantities & prices saved, so am a bit wiser again. I see you've gone the same way both Alsdad & another lady from the UK I know of; Indian Sofo + Chinese Dac. It's all still new to me & between working full time & suffering serious bran fog & Fatigue there is only so much I can do in a day to speed up the process. Thanks god for coffee! I think both myself & a few others here in the UK are stuck as we cannot find an open minded Doctor who would prescribe us the generic meds. I know there is one doc in Manchester but it is not very easy nor cheap to travel to see him from where I live, just not doable, so am still hoping to find someone here in Cambridgeshire. I was hoping to get the meds via Greg or doing the trials with Doc James using the new pill combining Sofo/Dac, but without the UK Doc script I don't have a chance for either. I'm awaiting to hear back from Rachel at Mesochem now. In Australia it seems more & more Doctors are prescribing & monitoring the HCV patients & recommending the generics to patients, including hospitals, but not here in the UK. I wish the situation was different. Hi Gary, welcome from Japan!, It's great you're doing it using the Mesochem API's, they are the most trustworthy & effective little powders. Did Rachel asked you for any paperworks in order to dispatch the API's ?? Please do update us on your progress, all "life reporting" is very important to those who will follow, it's like a Real Life Trials are going on now with the generics & more & more people are joining daily, participating globally. I hope I'll join you guys soon, hopefully November. Jolie xxxxx
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