how does she send the canolis? they have to be refrigerated.
The other day I went to Shop rite and they have this canoli cake, plus it was topped with canoli filling, smeared all over the top...I think I will try it next time I shop. No wonder I am not anemic!
Ben & Jerry should start a canoli ice cream flavor...
Kalio1, the real one (I was never fooled!). Good to hear from you. I think I was the last one on "post your stats 2". Thanks for the reply, hope you see this. I'm in New Zealand, so it seems like I'm doomed to be a day behind in the posts. Been following this board for quite a while, just never posted. Always seemed to be a good bunch of people on it.
I never thought of the ensure, my son was on it years ago after surgery and it helped bring his weight up. When I go out for my ultra sound this morning I'll pick that up.
Thanks,
The Beagle
I had really bad heartburn after taking riba in the beginning, took didn't take antacids because they reduce absorption, so I just put up with it for a while. Noticed that it wasn't so bad if I made the meal bigger, then later on went for higher fat meals as well. I increased from 1000 to 1200, but that was after I'd had a few months to get used to 1000. I doubt I would have been able to handle 1200 from the start, went absolutely white a few weeks in from 1000. I was actually noticing people were looking at me when I walked down the street..
The things I do notice even now with it is a slight cough and a scratchy throat for a few hours. Also lost a bit of weight, often felt nauseous and didn't feel like eating anyway. Don't seem to have so many problems anymore. I've always gained/lost weight really fast, but I think changing diet to increase riba might be a bit of a balancing act for others who lose it slower - you want to absorb it, but you also want enough for your weight. Inadvertently increasing your weight means your requirement is higher too, the goalpost moves forward along with the absorption.
Personally, I think a lot of my weight loss has been muscle, and since muscle is heavier than fat, that's what shows on the scales. I laughed reading about Jim (thanks for your reply earlier as well) taking all six at once, I couldn't recall if I'd taken my three one morning when I got to work, so took another three to be safe. Didn't take long to realise that I'd doubled up.
It's been mentioned before about not getting sunburnt while on tx, I'm a living example right now. Sat on the beach for an hour or so in the mid-day sun and my office white legs are bright red! I'm sure I shouldn't have gotten so burnt so fast. Also arms are kind of bumpy along with the burn, must be the riba.
Cheers, have a good week.
Someone here once told me to eat ice cream with the riba. It was the only thing that would go down easily the first few weeks. Try natural yogurt with a spoonful of honey for the gastric problems, it really works for me.
Was also given Ensures by my specialist nurse as I lost alot of weight also. It's not a substitute for food but helped stabalise my weight.
Best wishes
Glad to see your back, but not to hear how you feel. Thanks about the info, I didn't hear any one complaining about stomach problems so I thought it was just me.
I had posted in one of the threads below left over from Friday that it was a shame no threads were opened yesterday and I decided this morning to open one. I feel having threads are better then no threads. Even this morning I was unable to open one till after 10AM. I tried at 3PM yesterday with no luck and Jim tried through out the day with no luck. I bet others tried too, but at this point I can't even think about threads any more have enough to think about.
Susan-- Wow, you take 8 riba a day, that's 1600mg am I right. Why so much? I don't think I've seen any one with that high a dose on the forum.
On Friday Jim had started 2 threads so we could post our stats and I printed it out so I don't mix any one up. I just check and your not there, so for give my riba brain. What's your Geno type and how long on tx, etc.
The Beagle
Dyce said: Jim have you ever heard of starting riba earlier than the peg.maybe to stop the virus from replicating or to get a hold of it,so when peg. is started,the virus will take a hard hit initially?
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Someone recently posted they were in a trial with exactly this protocol. I believe it was starting riba two weeks before the first Peg shot. Other than that, I've never read or heard about it from a doctor, however I have independently thought about the concept and was gratified that someone is testing it in trial.
The idea has a certain elegance in that it should get your serum riba levels up near optimum before the first shot. As it is now, you take your first shot of Peg but your serum riba levels are just beginning to climb. I have no idea if this concept will pan out but it really intrigues me and should I have to treat again I would definitely research this further even though I was a rapid responder. I imagine though that this would be perfect for slower responders, should of course the trial pan out.
-- Jim
I should also add that studies suggest that riba alone has no effect on the virus, but the idea of starting riba earlier is a different concept in that theoretically the higher serum riba levels combined with the first peg injection could be a real head shot for the virus. FWIW, my understanding is that the biggest drop in viral load is generally during the first 24 hours of your first shot of Peg.
-- Jim
When I had my blood test Friday I asked the Dr. for a PCR test. He said NO, I know why you want it but I won't do it yet. So I guess I'll have to wait. What is the norm for this test to be given?
The Beagle
Lots of us have stomach problems especially in the earlier weeks of treatment which is why we lose so much weight. I found that with ME it does level out later. I'm no longer losing so drastically much now.
I can't EVER eat huge meals but even in the morning I take the Riba with a yogurt shake or something.
Judging by all my RIBARASH I'd say they are working just FINE...also the hemolytic anemia.....
Lots of side effects to support while I dont eat a whole pizza with a milkshake for dinner - the Riba is getting in there anyway I imagine.
Haven't been around much have a huge cold or something doing shot with it was murder. BLUCK!
Feel like anemia might be creeping in again.......good thing I have a CBC this week so I can start being paraoid.
;-)
PS Didn't want to start any threads and get yelled at again so honestly...just left it alone. I was here all day yesterday and could have tried but I get tired of the rationality that no threads are better than posting more than 2 threads in six months.
D
I agree, big meals mess me up too. I do take the 1st dose of Riba with breakfast (although it's probably not fatty enough as I don't eat that much fat). The 2nd dose, I take with a big bowl of ice cream so that does have some fat in it. My doc said the dosage timing is really not that big of an issue with the RIBA because of the long time it's in your system. It's more important to just not miss a dose, but I'm on 8 Riba's a day anyway, so I'm not worried about my Riba level.
Susan400
On the riba,12 hours between dosages probably is the best way to take this med but with such a 1/2 life your right about just getting the doses taken within a 24 hour period.I do consume some fat,so I don't think I'll have problems with absorbtion.
Jim have you ever heard of starting riba earlier than the peg.maybe to stop the virus from replicating or to get a hold of it,so when peg. is started,the virus will take a hard hit initially?
Rocker, Thanks for the imfo. on the ginger. Definately going to look into the suppliment end of this subject to.
Dyce
BB said: "I know why you want it but I won't do it yet.
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He sounds exactly like my dermatoligst. Not exactly a 'team' player. LOL. But seriously, he simply not believe in it -- still, I think it sucks when physician's can't accomodate a patient's reasonable request even if goes against their treatment approach. I mean, you're going to get blood drawn anyway, it's just a matter of ordering another test, insurance permitting.
The "norm" if you want to call it that is probably first PCR at 12 weeks, 2nd at 24 weeks, maybe one at 36 weeks and then a week 48 PCR. That said, a number of doctors believe in the week 4 PCR to get an earlier handle on viral response. My doc -- toward the extreme end -- does weekly PCR's until you clear and then monthly until end of treatment.
-- Jim
I guess it just depends on the Dr., I will be taking shot #5 tonight and maybe he felt it was to soon.
Here's a question--- I take 2 riba tablets tonight (400mg)What do you think if I took 1 sa at 5PM and 1 at 6PM, do you think it would be alright to do? I thought it might be better for my stomach given all the problem I'mhaving in this area.
BB
Of course I can't advise anyone what time to take their meds -- only your doctor or nurse can -- but I have read studies where riba is dosed three times a day, rather than twice a day. And while these are high-dose riba studies, the principle as I understand it is that the important thing is to maintain the daily dose as opposed to how you break it up. Keep in mind, if you break up the riba, you should make sure to take it in a similar fashion as when you don't break it up -- in other words with food.
Personally, given your moderate dosage, I think you could accomplish the same thing by taking the riba with a bigger meal, but I don't see anything wrong with experimenting in that regard, but that's just my opinion and inclination.
If your stomach doesn't get better soon, you should really discuss the situation with your doctor and he might prescribe something. Just be careful of taking certain antacids -- tums, mylanta, Gaviscon, etc, too close to your riba dose as it can slow the absorption. PPI's like Nexium don't have that effect, but not sure if that's indicated in your case unless you start experiencing heartburn. Maybe others here who have had stomach problems can chime in. Last thought, if the stomach thing becomes chronic, you might talk to your doc about getting scoped if you haven't already. Usually they'll biopsy a small snippet of stomach tissue to check for bacteria.
-- Jim
-- Jim
Thanks I think your right, I'll stay with the riba dose with the meals instead of breaking it up. The Dr. before I left NY gave me meds for the stomach, it's just not working fast enough for releif.
I think my problem stems from not eating meals with enough fat and taking the riba without a big enough meal.
I hope it get's better soon.
There are alot of people MIA today,and NY girl is no where to be found.
Thanks again Jim,
BB
mr B-i get stomach ache too,can't eat much at any given time,often,just do yogurt&granola w/ riba,but try to eat ...i also been drinking mango juice(100%) when belly is upset--helps me....hey i ranaway to orlando when i was 17(kidnapped by married woman w/ sack of weed))-try to forget that less than noble experiment-i was goin to mexico; searching for don juan,surprised i can rem..way too much acid .....but skedaddled back to high school when the hubby showed up and i managed to graduate& get a regents scholarship-and thats the only part of that story i share w/ my children...cripes yu could blackmail me now
NYgirl-please post ,sorry to hear that yur under the weathr,maybe it's time for a little driveby-i 'll ride shotgun for you anyday-mite take our minds off daily grind of trx&sx&hepC..."nothing quite so exhilarating as to be shot at without result"
susan400-one food that i can't seem to keep on hand-ice cream ROCKS!!
ARE YOU SURE THE WEIGHT LOSS IS FROM NOT HAVING BARBARAS COOKING?
IF I WAS IN NYC I WOULD BE GETTING FAT FROM ALL THE CANOLIES. JOAN SEND ME A DOZEN ONCE IN A WHILE AND THEY DO NOT LAST.
GREAT ON THE HGB. MINE WENT FROM 15 AT WEEK 12 TO 13.2 AT WEEK 16 TO 13.8 AT WEEK 20 SO I HOPE I AM IN THE RIGHT DIRECTION. I WOULD HAVE TO SELL A RENTAL JUST TO PAY FOR THE PROCRIT. SEE YA.
BOBBY
I only eat two meals a day. Lately breakfast is between 11AM and 12:30 PM and my second meal is between 4PM and 7PM. I often have my two riba doses as close as five hours apart but rarely under four hours. My hepatologist said the timing of the doses doesn't matter because of ribavirin's long half life. In fact, he said I could take all six pills at once if I wanted. (BTW I did this once -- by mistake -- and got quite a 'rush' -- so not sure I'd recommend that). So basically, the important thing with me is to take it with a large meal, not the timing of the dose.
It should be mentioned that others here have been told to try and take their riba 12-hours apart, and I believe so does the package label although I haven't read it. So, like everything else, always best to check with your medical team.
-- Jim
Good morning All.
Jim you mentioned taking the riba with 2 biggest meals.I eat my two big meals about 7 hours apart dailey.Would 7hours be too close together to take this powerful med.?Hope your well today.
Dyce
Thanks, I'll try the ginger roots, at this point I'll try any thing.
The Beagle
Congratulations on your hemoglobin rising! Gastro problems are very common and there can be many causes. I'm on Nexium for GERD but you may have something else. Maybe others or your doc have some suggestions.
As far as fat and riba are concerned, some report gastro upset if they take their riba with a very light fat (or no fat) meal like say a piece of fruit. Personally, I take my riba with the largest two meals of the day which therefore have adequate amounts of fat in them. Studies also suggest that the riba absorbs better in the presence of higher-fat meals.
Curious, where did you get your information that we only have a 2-3 hour window in which to open new threads every day? Don't ever remember this being the case before but maybe I just wasn't paying attention. Everything then just seemed to work. All it says on the screen is that the times to open new threads are rotated daily to give people in different time zones more of an equal opportunity. Nothing about a 2-3 hour window.
Hope this finds you well.
-- Jim