That first night with chills and aches is common. I had that a lot but some don't.
I was okay for a while (after my nasty first shot experience) but then when the anemia set in, it took me by surprise. I was too tired to even put on lipstick...and more or less stopped combing my hair....I was just so zonked but now, post-treatment, my energy is great. There are days that I feel I have more energy than before treatment but there's no way to know for sure.
I see you're a genotype three on 800 mg of ribavirin. Can I ask how much you weigh?
I forgot to send you this link from the health pages:
People here recommended that I drink water throughout the day, which I don't usually like to do. That's a good thing to do, I think.
I had a fever and flu like symptoms for about 1.5 days after the first injection. the next 8-10 injections gave me aches and pains and all fog, but were not nearly as bad as the first. my last 6-8 injections I barely feel. That being said I feel worse in general.
Everyone is completely different. Trying to get a picture of your experience from others will be difficult. It's a good idea to ask the questions, but there it is impossible to know how your body will react. My symptoms, sides and blood reactions have changed constantly.
Good Luck - dave
Ditto to what Spectda says. I'm on week 19 and the most dominant symptom now is brain fog. My fatigue isn't as hard to deal with but I don't know if it is because I have gotten used to it because my hgb is still 10.8. Don't like being around a lot of people any more. I have body aches at least once a day but they respond well to Ibuprofen... thank goodness!
Thanks for you replies! :)
PORTANN - I only weigh just under 7stone, I'm 5ft 1 and very petite!
My specialist gave me a prescription of build up drinks and I have an appt with a dietician next week as I want advice on foods I should be having more of and foods to cut down on as generally my diet is pretty bad (fry ups for breakfast, lots of crisps and chocolate etc)
Ok, this American girl does not understand, lol, what weight in "stones" lol converts to in pounds.
Please help. Lol
14 lbs per stone, (google works wonders :-) )
she weighs 98 lbs, 44.5 kilos
Hi again Kxsx!
Glad to hear you've started and I'm hoping really hard for easy sides for you.
Your riba dose translates into at least 17.97 mg of riba per kilo. So you're on a lot of riba and you may feel it in a couple of weeks, if anemia sets in.
(That's hemolytic anemia caused by the ribavirin and has nothing to do with regular old dietary anemia.)
I took about that amount but many people take between 13 and 15, so your dosage is up there with the heavy hitters (although there are some here who really went to town on their riba and lived to talk about it).
Now the strange thing about getting anemia and feeling zonked by it is that it's often looked on by docs as a positive sign that you're responding well to the meds. So feeling rotten down the road can be a great sign, if that makes sense.
The nice break for you is that as a g-3, you'll be done in 24 weeks. Make sure to get your four week HCV RNA PCR test results. If you can also get a one week HCV RNA PCR test that would be super. Can that be arranged where you are?
As for eating, I hope you're seeing a dietician familiar with treatment, as all the healthy talk in the world is not much good if you can only eat what you can eat. The meds have a powerful way of dictating your food choices and guidelines mean diddly-squat when your old faves won't go down and veggies make you throw up.
Eat what works and make sure to have a reasonable amount of (healthy?) fat when taking your riba.
What's a fry up?
Best of luck to you in your new treatment. Im 27 weeks into treatments and can remember that the first intake of my meds was by far my worst night, with craamping, night sweats and nausea. But it only lasted a few hours. I have nights like that off and on now. I really have not been bothered by too many side effects until lately. Im getting more tired and rundown and my eating habits have changed. What once taste good now makes me sick. I think attitude has alot to do with the outcome of the treatmentes. So try and keep as positive as you can throughout. Watch out for the depression don't let it get the best of you. Had sleeping problems for awhile but got ambien to help with that. And anit-depressants for the depression. Seems to be helping. Drink plenty of water they say. And keep a positive outlook throughout. This fourn of people has been a great place to talk and gather information so you don't feel so alone going through it. Best of luck to you.
thanks for all the feedback! :)
Well the specialist said that I won't get my viral load checked until end of treatment! On wednesday I'll be getting a full blood count and on the 22nd of Sept I'll be getting liver and kidney tests done by my specialist!
The specialist arranged the dietician so she will be advising me what is best for me while on treatment!
A fry up is sausage bacon egg, fried onions etc etc
week 4 is a very important indicator of success with treatment, and may even determine the length of tx. People that don't respond by week 12 with no viral load or minimal viral load generally stop treatment or plan on an extended treatment period.
I don't know what kind of specialist would only do a treatment at the end of tx. Is this doctor a hepatologist?
I meant to say:
I don't know what kind of specialist would only do a viral load test at the end of tx. Is this doctor a hepatologist?
It's a hepatologist..
After reading about stuff on here I assumed I'd get VL checked between too but she saud that as I'm geno 3 she won't be taking it until the end of my treatment!
Gee, it may be the old conventions for G3's still apply in the UK system, due to the economic constraints of socialized medicine.
The idea was that 2's and 3's have such a high rate of success that it was a wasteful use of resources and that still may be the thinking, with cutting corners the bottom line in an overtaxed health care system. That's my guess but maybe someone from the UK can help out here.
Maybe you still have time to persuade her, as G-3's deserve special attention and should not simply be lumped together with G-2's.
Gotta run, sorry....
Hi again, Ksxsx,
Hope you're doing okay, heading into your third day!
You know, the most important thing for you to do now is take all your meds on schedule. I wouldn't worry about the tests for now at all but when you see the doc the next time, you could ask again about a 4 week test.
The thing is, you're on weight-dosed riba and on almost 18 mg per kilo (I think the usual recommendation is for 13-15 mg per kilo), so you're really whacking this with your mega- dose - a good thing, some here would say.
And you have amazing, wonderful predictors for success:
3) very, very low starting viral load of 73, 986
3) genotype three
4) and probably little or no damage, since you assume you got it recently.
You look to me like the gal who's going to beat this for sure, based on all of the above, so now the crucial thing is just hang in there with your meds on schedule, drink water to keep hydrated, keep asking any questions you may have about treatment and take good care of your new five month old baby!
What's the baby's name?
Thinking of you and sure rooting for you to get through this,
Here in the Uk some medics are still only testing geno 2 and 3s at the beginning and end of Tx....You could try and ask the Gp for a viral test at 4 weeks and see if he will comply...
I am unsure Kxxx is on weight based meds she is on the right dose for her weight but I suspect even if she was heavier would have been given 800mg riba...
Best of luck..Px
Really helps having people to talk about all this and get more of an understanding!
Well I really hope I do beat it! I have specialist appt on 22nd of this month so I'll ask bout vl then!
So far so good with the treatment, not been bad at all but I'm not expecting it to stay like this!
Ye, I wouldn't be without her - she makes everything worth while! Her name's Layla