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Post by Alsdad on Sept 30, 2015 18:21:34 GMT
Diagnosed with Genotype three 13 years ago, probably got it 34 years ago. Put on 24 weeks of Peginterferon Alpha/Ribavirin 11 years ago. Treatment stopped on consultant's advice after 12 weeks due to severe side effects, which lingered on for about a year and a half after stopping treatment. Stuck my head in the sand wrt my HCV for the next few years.
Started getting arthralgia and myalgia in my legs about 2 years ago, combined with fatigue. Pain has steadily spread to feet, hands, arms, shoulders and neck since then, and fatigue has worsened. Been on 500mg Naproxen BD and 1000mg of Paracetamol in the morning, sometimes evenings on bad days since March this year.
Started doing some research on the Arthralgia and Myalgia, and came across evidence of them being quite common symptoms of HCV. Did some research on this and found out about Sovaldi. Decided to get back on the Hepatology Clinic treadmill to investigate possibility of obtaining the new treatment. Also got an appointment at the Rheumatology Clinic, where extensive investigations could find no evidence of Arthritis. Consultant strongly suspected HCV to be the cause of my symptoms, and wrote to my Hepatology Consultant recommending me for treatment.
In the meantime, the Hepatology Clinic's own invesigations (blood tests and ultrasound scan) had concluded that I had no liver damage, and would probably have to wait several years for the new medicine, subject to annual reviews.
So I decided that I needed to take matters into my own hands.
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Post by Alsdad on Sept 30, 2015 20:47:08 GMT
Whilst Googling for info about Sovaldi, I discovered that it had recently become available in generic form in India. I found all kinds of websites offering it for sale: Online pharmacies that either wanted a prescription or wanted stupid money; Dropshippers and suchlike. I got a price off one particular dropshipper, but after a couple of weeks of emails back and forth, he couldn't get me any Ribavirin, and I'd come to the conclusion that he was 'dodgy' anyway. The whole dropshipping thing seemed dodgy the more I looked into it, so I ruled that option out.
Then I happened across Greg Jefferys' blog. What an eye-opener! I did a bit of due dilligence on him. He seemed to be the real thing. So I got in touch with him. He gave me all the necessary info and requirements. The stumbling block was he needed a prescription.
So I went to see my GP, and had a long, earnest chat with her, where I put my cards on the table, told her I'd be getting the medication one way or another, even if it meant travelling to India to get it, and asked her to stay involved whatever the outcome, which she agreed to. We ended with her saying that she'd need to discuss my request for a prescription with the other practice doctors and would let me know her decision the following week. I finally got to see her again three weeks later, where she informed that she just didn't have enough knowledge about the situation, and would write to my Hepatology Consultant asking him if he would give me a prescription.
I was pretty 'down' when I left the surgery, but vowed to explore every avenue to get this medication.
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Post by Alsdad on Sept 30, 2015 22:47:12 GMT
So I started phoning round local private clinics. I found one in Manchester called Pall Mall Medical. The practice manager said they had a Consultant Hepatologist, and she thought he would be prepared to get involved. After a bit of a struggle getting a mutually convenient apointment, I got to see him. He was remarkably knowledgable, very thorough and was interested in getting involved subject to me providing a documentary case history and him checking out the legalities. My NHS Hepatology Clinic had been un-cooperative to the point of obstruction. They didn't even give me any blood test results, and I'd found out my viral load score from a letter from my excellent Rheumatology Consultant of all people  ! So I had to get a full set of bloods done privately at Pall Mall Medical. A couple of weeks later I got a copy of a letter from the Pall Mall Consultant to my NHS Consultants advising them that he was taking on my treatment with generics. 24 Weeks Sofosbuvir and Ribavirin. Result! Blood tests attached below: Attachments:Starting Blood Test.pdf (535.24 KB)
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Post by Alsdad on Oct 2, 2015 16:03:19 GMT
Around this time, I'd been made aware, through Greg Jefferys' Blog, of Mesochem Daclatasvir API being available in small quantities directly through Mesochem's rep Rachel. So I emailed Rachel, who replied promptly with a quote of two hundred US Dollars for six grams (enough to make about a hundred doses) incuding Fedex delivery, no prescription required. Four days after ordering, it was in my hands.
Now, how to put it into useable form? I spent days Googling, phoning pharmacies (nothing doing here in the UK), discussing with others. Some thought that we had to make up the exact same formula as Bristol Myers Squibb's Daklinza pills. Investigation into the components of Daklinza pills indicated that all the extra components (excipients & coatings) are nothing more than a delivery system to get the pill into one's stomach and to get it to break up once it's there. Eventually, I found an official document which informed me that Daclatasvir is an 'immediate release' medicine, ie: you just have to get it into your stomach.
So I purchased some digital micro scales and some pharmaceutical grade gelatin capsules and got on with putting my dosages together. My next post is a 'how to' for this.
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Post by Alsdad on Oct 2, 2015 16:05:20 GMT
Encapsulating Daclatasvir API into useable form
The Process
1) I bought some 'precise digital scales' from myprotein.com, which I first calibrated with a couple of quantified small weights. These scales weigh in increments of 10mg.
2) I then put the Daclatasvir into the big end of pharmaceutical grade gelatin capsules (size 3, which I had check weighed at 40mg), which I had bought from The Alchemists Apothecary on ebay.
3) I then weighed them with the capsule cap loosely fitted. It was trial and error, but I soon got a feel for aproximately the correct amount (66mg + 40mg capsule weight) without having to re-weigh several times.
4) I weighed each batch of 20 filled capsules to check that the total weight was 20x1 dose + 20 capsules, which they were. I did this process 4 times.
5) I followed the same methodology as above (4) to produce 5 more loaded capsules.
6) I check weighed the whole batch, divided the weight by 85 and subtracted 40mg (the capsule weight) from this to triple check that I had the correct dosage per capsule.
7) I pressed all the capsules tight (the large section and cap click together). I then put them into an empty re-sealable vitamin container with a sachet of silica (it helps eliminate moisture from the air in the container).
Notes
1) myprotein.com is a UK company. You should be able to obtain a similar product in most countries. It should be easy to find them by Googling 'precise digital scales'.
2) If I was to do this again, I would try to find scales that weigh in increments of 1mg if they were not too expensive. This would eliminate the need for so much check weighing (though I would probably still check weigh for peace of mind).
3) The Alchemists Apothecary is also a UK company (you can collect from the ebay counter in Argos stores). But, again, it should be easy to find capsules through Google in your own country.
4) Don't get the enteric-coated delayed release capsules. This medicine is designed for immediate release in the stomach.
5) This method is best suited to encapsulating individual medicines, but the same process with adjusted dosages can be used for Ledipasvir (96mg) and Sofosbuvir (400mg).
6) I recommend size 3 capsules for Daclatasvir, size 2 capsules for Ledipasvir and size 00 capsules for Sofosbuvir.
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Post by Alsdad on Oct 8, 2015 20:25:14 GMT
I was now just waiting on Greg's Indian Sof which, after a very minor hiccup, turned up a few days after I'd encapsulated the Dac. I started treatment straight away, upon receiving the Sof, on the 1st September. I felt a little giddy and light-headed for a couple of hours (probably a combination of excitement and nerves), but soon settled down and got on with the mundane and normal. The feeling of normality continued for a couple of days. Then, on the third day, I got up and felt like I'd been hit by a truck! It was like the 'flu but not the 'flu. The arthralgia and myalgia that I'd been suffering from for the last two years was worse, and I had a headache that wouldn't quite go away, despite me being on Paracetamol and prescription Naproxen. I'd half expected this because my research had forewarned me that these were common starting side effects of the Sof/Dac combo.This continued to a greater or lesser extent for a week-and-a-half, until I got up one morning and felt much better, my body pains feeling improved on what they'd been before treatment which was a small bonus. I also felt amazingly clear of mind, like I hadn't felt in years, like a long-term haze had lifted from my brain! When I got into work that day, a couple of colleagues commented that I looked different: "Have you had a haircut?" "There's something different about you today." I was sure that the medicine was working. But I wanted to be very sure, so I arranged for GammaGT and viral load tests at Pall Mall. The GGT result came back quickly and showed a significant drop from the starting 357 to 194. The viral load test came back a few days later and showed virus undetected. But wait! It was for HVB! I contacted the clinic receptionist: "Was that not what you wanted?" Me: " I'm being treated for HCV". So they looked into it, clerical error, the usual, and arranged for for more blood to be drawn. I also had my first blood drawing done at my GP's that day, so was feeling a bit like a pin cushion! Viral load result came back about the same time as my liver and kidney function tests from the GP's. Virus Not Detected! Over the moon, Brian! to use an old football cliche. Bloods from the GP's showed my GGT down further to 154, ALP down a bit to 83, ALT down to a remarkable 10. Looking good! Two week viral load and bood tests attached below: |
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Post by Alsdad on Oct 17, 2015 19:42:17 GMT
One of the most remarkable effects of this treatment has been the lifting of the 'fog' from my mind. I'd read about 'brain fog' as a symptom of HepC, but didn't consider myself to be suffering from it: I've run a reasonably successful and mentally demanding business for many years, and always thought of myself as quite competent mentally. Over the last three weeks-or-so, my clarity of mind has been personally astonishing Everything in my life, on my mind, has come much more into focus. This indicates just how insidious and pervasive HepC is on you over time. Another, equally pleasing effect of the treatment is it's easing of my 'grouchiness'. I feel much more laid back than I have for many years. Anyway, I had some 29 day blood-drawing done at my GP's. Gamma GT, which was sky-high on starting treatment, was now down to 75. Almost in the 'normal' range. Test results attached below: Attachments:
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Post by Alsdad on Oct 28, 2015 13:26:59 GMT
Eight weeks and two days into my treatment now. It's been a gentle ride so far. A bit of flu-type sickness for a few days at the start, the odd headache here and there. Joint and muscle pain are still there but markedly improved from pre-treatment: I can now walk downstairs normally in the morning to get my cuppa and meds, instead of 'crabbing' downstairs sideways  . I'd been trying to get a fibroscan done for the last few weeks. No local private clinics/hospitals have a scanner, so I phoned my local NHS hospital (who I knew had purchased a scanner last year) to see if I could go private with them. The very helpful clinic leader had told me that if I got a referral from my GP, they'd do it on the NHS, and at the next clinic. GP wanted a request letter from my Hepatology Consultant, which was obtained and handed over to them on Monday last week. GP told me that the referral was faxed this Monday. But the hospital had no record of it. Fibroscan Clinic Leader to the rescue again, who tracked the referral down to the CT Scan Clinic, and booked me in yesterday for a fibroscan this morning. This lady should be running that hospital! Anyway fibroscan result was 4.9, which is in the 'healthy' range, so I'm confident about sticking with my twelve week treatment plan. Had some blood drawn for a viral load test yesterday at Pall Mall Clinic, more as a personal reassurance than anything else. Assuming that it's still UND, I won't bother now until twelve weeks end of treatment. I feel like I'm over the top of the mountain now, and on my way down the other side. Like I'm in quite a good place physically and mentally now. |
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Post by Alsdad on Oct 30, 2015 20:10:10 GMT
Got the result of my 8 week viral load test back this morning. Still Not Detected. No surprise there, but the reassurance it there.
Saw my Pall Mall Consultant this evening. He's delighted with my progress: Last FBC results were spot-on; General health good, improved; Just wants me to send him a copy of my 9 week LFT's that my GP will do next week. He's pretty-much signed me off. Wants me to do a 12 week eot viral load test and, subject to that being satisfactory, he'll do an eot report for my GP.
We chatted a bit about the generics situation. He's still getting people turning up at his NHS clinic with them, asking him to monitor. After a series of meetings with the NHS Trust, the order has come down from on high: No NHS monitoring. UGH!!!!! He's quite frustrated by the situation, having seen the good that these generics are doing.
He'd had a look at fixhepc.com and the Buyers Club setup following my previous suggestion. He was impressed. He likes what Dr Freeman is doing.
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Post by Alsdad on Nov 10, 2015 17:53:19 GMT
Picked up my GP Practice week 9 blood test results today. Gamma GT is down to 47, now in the 'normal' range. So, as things stand, I'm virus-free and my liver is functioning normally. Previous two GP Practice blood test results have been a one page affair containing basic LFTs and KFTs. This latest one is a pretty thorough four page job. Makes me think that the progress of my treatment may have made someone in the NHS ears prick up. I've attached the results with all identifying info redacted manually. |
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Post by Alsdad on Nov 10, 2015 17:54:21 GMT
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Post by zanametambien on Nov 12, 2015 13:20:22 GMT
Excellent Alsdad you seem to be rushing to the finish line with excellent markers. I shared my results a few minutes ago on the on other thread Before/During/After Treatment. How are you feeling at this stage of your treatment?
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Post by Alsdad on Nov 12, 2015 16:56:33 GMT
Feeling pretty good. Still a bit of joint pain, but much improved. Mild headache today, probably because we've been eating chocolates from my son's birtday a couple of days ago.
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Post by Alsdad on Nov 16, 2015 17:51:38 GMT
Took my seventy-seventh Sof and Dac pills today. Only seven more of each left. I'd been on the max dose of Naproxen since early this year, supplemented by regular max doses of Paracetamol, to take the edge off the muscle and joint pain that had developed over the last couple of years. I got up yesterday morning and decided I was going to manage without the Naproxen. Today, I cut out the Paracetamol too. Still in a bit of pain, but it's quite mild and manageable. Having my eot bloods drawn on the 30th, not sure if my GP wants an eot review, but I've asked the question. Then it's just the dreaded wait for twelve weeks post-treatment. But I'm feeling quite relaxed about it all, and physically well.
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Post by zanametambien on Nov 22, 2015 20:47:00 GMT
Alsdad I see that congrats are on order for you as your treatment draws to a conclusion tomorrow.
I know your results will be altogether of a positive nature and will look at tomorrow as a day of completion in an unfortunate phase in your life that you approached with courage and dignity..
All the best going forward and I know you will share with us your treatment success during the later part of Feb 2016 when 12 weeks post treatment have been completed.
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! So I had to get a full set of bloods done privately at Pall Mall Medical. A couple of weeks later I got a copy of a letter from the Pall Mall Consultant to my NHS Consultants advising them that he was taking on my treatment with generics. 24 Weeks Sofosbuvir and Ribavirin.
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