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I reduced my dosage last night, I probably took about 40mg as didn’t cut the tablet exactly in half and I took the biggest bit. I take my meds around 11.30pm so tonight will be the second reduced dose.
Although I don’t look well and still feel slightly sickly my mood has much improved. Despite all my best efforts to perk up a bit my default setting seems to have been glum since I started the meds, and it was lovely today to feel more like my old self on a good day.
I’ll do a you suggest and increase to 60mg for a couple of days, and then perhaps down to 45mg after that.
Thanks again for your kind attention.
2b diagnosed about 10 years ago
Alt was 150 but got it down to a consistent 49 with Chinese herbal medicine
Started dac/sof 27/03/17
4 week test – liver function normal – alt 31
full blood count normal
RNA detected 26 IU/ml Log = 1.42
9 week test 26/05/17
bloods and liver function normal – alt 27
RNA detected <10 IU/mlHi Coral,
Strange that I didn’t get a notification in my inbox that you had written to me, I only came across your message by chance, and then it isn’t visible when I use my ipad – only my computer???
Anyway, it sounds as if you have really been through it! I can only imagine how you felt when you relapsed, but you sound optimistic about the outcome of your current treatment, and I’ll keep everything crossed for you that you manage to remain clear in future, and after everything you have done I’m sure that you will beat this disease.
Yes, I did manage to find a pill cutter and it was funny trying to cut it without this gadget. I reduced my dose last night and although I’ve felt slightly sickly all day my mood has much improved, which is great.
The only fly in the ointment is that an attic ceiling is threatening to fall down in my 250 year old rented house. It’s the old lath and plaster, so when the landlord sends someone to pull it down and replace it the mess will be unbelievable, no matter how many dust sheets I put down. It’s the sort of soot that permeates everything and continues to settle for weeks after the job is completed. I’ve had the ceiling propped up temporarily, but next week I have to arrange for the work to be done before it comes down of it’s own accord. No biggie in the usual scheme of things, but in the here and now I could so do without it. Thank goodness I’m blessed with lovely friends who have offered to help me clean up the mess, as although I’m feeling slightly better my energy levels are very low.
I hope you’re ok and the ribavarin isn’t taking it out of you too much, I’ve read that it’s a tough one to deal with sometimes. Thanks so much for your mails, it makes such a difference to hear from nice people who are going through similar times. Sending love to you x
2b diagnosed about 10 years ago
Alt was 150 but got it down to a consistent 49 with Chinese herbal medicine
Started dac/sof 27/03/17
4 week test – liver function normal – alt 31
full blood count normal
RNA detected 26 IU/ml Log = 1.42
9 week test 26/05/17
bloods and liver function normal – alt 27
RNA detected <10 IU/mlOnly a small selection in Boots, mine was £2.99 – should work fine.
2b diagnosed about 10 years ago
Alt was 150 but got it down to a consistent 49 with Chinese herbal medicine
Started dac/sof 27/03/17
4 week test – liver function normal – alt 31
full blood count normal
RNA detected 26 IU/ml Log = 1.42
9 week test 26/05/17
bloods and liver function normal – alt 27
RNA detected <10 IU/mlI was wondering if such a gadget existed and then got your post. I bought one today so will use it later. So handy – thanks.
2b diagnosed about 10 years ago
Alt was 150 but got it down to a consistent 49 with Chinese herbal medicine
Started dac/sof 27/03/17
4 week test – liver function normal – alt 31
full blood count normal
RNA detected 26 IU/ml Log = 1.42
9 week test 26/05/17
bloods and liver function normal – alt 27
RNA detected <10 IU/mlThanks Coral, I can’t tell you how lovely it was to read your mail when I switched on my computer earlier. I totally agree with you that I’m getting the best medical advice, for which I am so grateful. It occurred to me that even if I was getting treated by the NHS with the same drugs, any concerns or questions that I might have, would have to wait for an appointment at the clinic, and then I would be keeping my fingers crossed that I got to see the one doctor there who doesn’t upset me or piss me off. From the very outset they have tried to scare/manipulate me into having interferon which I made very clear I would not participate in. What also annoyed me was that when they first took my bloods my ALT was 150, which went down to a consistent 49 after taking prescribed Chinese herbal medicine, instead of showing an interest in this they would lecture me about the dangers and possible side effects when there were non. Anyway enough of that, I could go on and on, but best to move on and not focus on the negatives in life.
As far as the side effects, well they do seem to be easing off a bit. I can handle them all, it’s just when my tummy kicks off it really gets me down and it’s not been as bad recently. I do feel flat emotionally and detached from things around me, then the next minute I’m over emotional and very weepy. Last night I tried to cut the daclastavir in half at Dr. J’s suggestion, but it’s a small hard tablet and it was having none of it. It was turning into a cartoon type situation as I tried various things to split it, so I’m waiting for a friend to come over to have a go. If it does prove impossible then it’s just to bat on as I’m over half way through my treatment now, and I’ll take the side effects all day long if it means that I will finally be free of this horrible disease.
Having read your treatment info it looks like you had to take another course of Sof/Dac due to slow response. Am I right in thinking you had to do this for another 12 weeks? Anyway it looks like you’re clear now which is just the best thing ever!
Warmest wishes,
Carol (2bornot2b)
2b diagnosed about 10 years ago
Alt was 150 but got it down to a consistent 49 with Chinese herbal medicine
Started dac/sof 27/03/17
4 week test – liver function normal – alt 31
full blood count normal
RNA detected 26 IU/ml Log = 1.42
9 week test 26/05/17
bloods and liver function normal – alt 27
RNA detected <10 IU/mlThanks again Dr. J, I’ll do as you suggest starting tonight and let you know how I get on.
2b diagnosed about 10 years ago
Alt was 150 but got it down to a consistent 49 with Chinese herbal medicine
Started dac/sof 27/03/17
4 week test – liver function normal – alt 31
full blood count normal
RNA detected 26 IU/ml Log = 1.42
9 week test 26/05/17
bloods and liver function normal – alt 27
RNA detected <10 IU/mlThanks Dr. J – good to know, I’ve now stopped taking the Chinese medicine, fingers crossed I’ll be undetectable at 8 weeks.
2b diagnosed about 10 years ago
Alt was 150 but got it down to a consistent 49 with Chinese herbal medicine
Started dac/sof 27/03/17
4 week test – liver function normal – alt 31
full blood count normal
RNA detected 26 IU/ml Log = 1.42
9 week test 26/05/17
bloods and liver function normal – alt 27
RNA detected <10 IU/mlHere are my liver function and full blood count results which I have just scanned as promised.
Attachments:
2b diagnosed about 10 years ago
Alt was 150 but got it down to a consistent 49 with Chinese herbal medicine
Started dac/sof 27/03/17
4 week test – liver function normal – alt 31
full blood count normal
RNA detected 26 IU/ml Log = 1.42
9 week test 26/05/17
bloods and liver function normal – alt 27
RNA detected <10 IU/mlHi Mnem,
Thanks for your kind words and concern.
I haven’t been taking the traditional Chinese medicine for my liver, but as you can see in my reply to Dr. Freeman I have been taking a Chinese remedy for HRT occasionally. This is all going to stop from now on. Thanks again for your input.
2b diagnosed about 10 years ago
Alt was 150 but got it down to a consistent 49 with Chinese herbal medicine
Started dac/sof 27/03/17
4 week test – liver function normal – alt 31
full blood count normal
RNA detected 26 IU/ml Log = 1.42
9 week test 26/05/17
bloods and liver function normal – alt 27
RNA detected <10 IU/mlThanks so much for your prompt and informative reply Dr. Freeman.
To answer your questions I’m taking Sof and Dac.
As far as I know my renal function is fine. Would it help if I uploaded all of my results? If so I’ll have a go at doing it later when I have more time MSM as I’m new to this particular computer.
I am not taking any other medications and I never eat grapefruit.
I have however been taking some supplements, but always at the other end of the day from my meds. I only take them every 2 or 3 days as I was concerned that they might have a detrimental affect on my treatment. I take magnesium as I have a long standing back problem and if my levels are low then my muscles get very tight. Also a combined glucosamine, MSM and chondroitin tablet and fish oils as I have arthritis in one finger joint, which is enlarged at the moment as I’m not taking them every day. Also a good quality multivitamin as my tummy has been so upset some days that I don’t eat very much. Finally a Chinese HRT tablet that helps with the hot flushes, but again not every day. I will however stop taking all of these things, and wish I had done sooner, but what’s done is done and no point in regrets.
2b diagnosed about 10 years ago
Alt was 150 but got it down to a consistent 49 with Chinese herbal medicine
Started dac/sof 27/03/17
4 week test – liver function normal – alt 31
full blood count normal
RNA detected 26 IU/ml Log = 1.42
9 week test 26/05/17
bloods and liver function normal – alt 27
RNA detected <10 IU/ml -
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