Double dosing?

[OceanLiver]

Saw liver Doc on Thursday and he wants to start me on double dose of inteferon.  First add 20,000 procrit then when  HGB up to 11.5 (currently 11.1) add 200 mg. riba ( total 1200).  Then start the double doses of peg. Oh, yes and lose another 10-15 lbs. Argh!  They will have to convince the insurance company to go along.  The ins. company is very strict.  So we will see how that goes.  

I was actually glad to hear double dose,  relieved to hear that he was not booting me off treatment.  Hope is sooo... seductive.  But now the rational mind kicks in.  Will it really help?  Will I be able to handle the SX?  What will it do to my body in the  long run?   At this point I feel like I should give it a try.  I can always quit. Currently very slow steady responce - week 20 VL 521.  Geno 1b - stage 4 compensated.  No real sympoms before treatment.  Gratefully, tolerating treatment very well.  

Anyone who has had any experience or information about double dosing please give me your experience.


Thanks for you help.  Ocean

[bobbyullc]

i double dosed and cleared, sides where fair.

[Kalio1]

That's good advice for anyone taking higher dosages to check blood levels more frequently.

Do you happen to remember what dosages you were on? As I recall it was pretty high but I can't remember the particulars. Your doctor was aware of the dosage amounts if I remember correctly.

Im so glad you mede it through all that, I know it was touch and go there for awhile. Hope you are doing well now.

[Magnum]

The standard dose for Infergen is 15mcg daily. I was taking 24, nearly double, along with 1200mg Ribavirin daily. My ALT and AST levels went from the 80's into the 700's! My Bilirubin was way out range and my urine was almost chocolate brown. I was unable to get out of bed for more than 10-15 minutes daily, enough to go to the toilet. It was a situation where I felt the doctor knew what he was doing, but I insisted something was wrong. When he looked at the bloodwork, he was very alarmed and had me stop immediately..

If you're double dosing, I would suggest blood work every 2 weeks if not every week. I would also ask the doctor if he has done this with other patients. How many? What were the results? Did any have complications? I will say this though, the count went from 3,800,000 to 6,000 in two months but I was dying. So, which would have died first, the virus or me? Very scary - - -Be very careful!!

Good luck...

Magnum

[Rastiss]

My Dr. said to take both shots at the same time. I thought that one shot every 3-1/2 days might be better, but I wouldn't want to feel like Saturday and Sunday all week long.

I started to repost to you last night about insurance. I'll try not to rant and rave, but there is a big difference in what the standard insurance corporation will cover when the drug costs $5 a dose or when it costs $1500 a dose. I got an initial approval and started on a double dose for three or four weeks until their accountants found out about it and decided that they knew more than my Dr and tried to prescribe my dose. My Dr., my pharmacist and I probably put in a total of 24 hours on the phone over about three weeks before the insurance company finally agreed to do what they're paid to do. They think that your Dr. should spend three hours on the phone waiting and getting transferred instead of seeing patients. Good luck getting it approved.

[OceanLiver]

I will be getting labs 1 x a week do you think that is enough? could you tell me more of th details of your experience.  AST, ALT, billirubin numbers?  Wht physical sympoms did you have/  Do you consider double dosing an overdose?  what dosage were you on and for how long until you had the adverse effects. How long did it take you to recover after you stopped?  Did you SVR?  how are you doing now?   What do  you think I should ask the doc? Hope this is not too much to ask. I really appreciate your insights.  
Thank you, Ocean

[jmjm530]

Double dosing is discussed on the Clinical Care Options web site. See "Doc Eye for the Hep Guy" video module narrated by Drs Dieterich and Jensen. Studies re double dosing should be available with side effect profile. Free registration is required: http://www.clinicaloptions.com/Hepatitis.aspx

All the best,

-- Jim

[Magnum]

Be very careful regarding overdosing! I did it on Infergen and almost died. If you intend to overdose, be very sure your doctor keeps a very close eye on your ALT and AST readings, as well as your Bilirubin readings. Your body is going thorough this, not your doctor's. You have to really stay on top of this. I was lucky I survived. Some others may not be so lucky...

I don't endorse overdosing after what happened to me. My situation happened under Infergen, which I understand is much more volatile than Interferon. Nonetheless, I would ask many questions of your doctor and I would strongly insist that you get bloodwork much more often than people under standard dosage treatment.

Good luck...

Magnum

[Cindy10]

The weight issue is intersting about 2 years ago I gained about 25 lbs, stress related. Anyway doc never said anything about the weight. And of course I have not lost any weight on tx either (seems when you need to you can't but when you dont have it to lose you do). Anyway I have read recently that is an important issue while tx. I will have to check with doc. Also I am hypothyroid, not sure if that is not helping either.
I almost feel like I would rather have extra weight on tx, than underweight, just my opinion.


Good luck to you both.

[jmjm530]

I'm a bit perplexed myself as the peg has little to do with your anemia, it's mostly the riba. I might remind him again that studies suggest it's very important to be non-detectible by week 24 even if extending, and that's only four weeks away. Taking the riba with some peanut butter is a good idea when in doubt about how much fat is in a meal.

Hopefully it will all work out.

-- Jim

[OceanLiver]

Thanks for the tip on the good diet site.   I started TX in Sept. this year.   It was nice to have the summer to "get it together".  Good luck, Ocean

[OceanLiver]

Doc wants to wait till I start the riba after upping the procrit.  he doesn't want me to go below 10 again.  I did feel like **** when I was at 8.5.  I'm at week 23 now.    How much fat is enough fat?  My PA says whatever normal amount is in my meal is good.  Oil in salad dressing?  Yogurt and nuts, etc.?  I have been confused about this for a while -  the doc never mentions it.   Sometimes I take a small spoon of peanut butter with riba if I think I have not had adequate fats.

Thanks for your comments.  yeah,  I wish I could start more peg right now .  But I do think as an "aggessive doc" his  procrit first plan is prudent.  Don't know why he wants to do the peg later - maybe to assure that I have an adequate stash.  Ocean

[jmjm530]

I'm a little confused if you're going to start double dosing now (at week 20) or if you will start once your hemoglobin climbs to 11.5. I think your docs plan is reasonable in your case but I would think the double dosing would start right away as you want to be non-detectible within the next month. Even then you will probably extend to 72 weeks. I double-dosed for several weeks and no noticeable difference in the immediate side effects. I assume you must feel like sh*t or you'd be on 1200 mg of ribavirin already as 11.1 isn't that bad as an absolute number. Most lose weight from the treatment itself, but it sounds like you aren't. Just make sure you eat enough fat with your ribavirin so it will be absorbed well.

All the best,

-- Jim

[foofighter]

Interesting. I guess I will just have to kick it up a notch and see if I can get down below 25 before I start. I can't begin until Sept. regardless of the weight due to heavy summer workload.

I am hoping to move to a new doc that Grand Oak suggested and maybe he will run a thyroid test, but I have a feeling it is just genetic. Same is true for siblings and mother, right down to the calorie.

I have been so preoccupied by this diagnosis I haven't had too hard a time with a healty diet. Lost 40 since mid September. Just eat to get the right fuel. Maybe when I shake this sadness, my appetite will come roaring back.

I do enjoy fresh pineapple lately, but I suppose I shouldn't waste the calories, since it has so much sugar. This is a great site:

http://www.nutritiondata.com/

When you get to the food detail page, they rate the particular food you have entered with a 5-star system for weight loss, health, etc. Then it gives you pros and cons and a ton of other info. Best is a pulldown that will give you Better Choices for Weight Loss (e.g. it tells me that an apple is a better choice than pineapple.) Cool site.

[FlGuy]

Athough the docs and I cooked up the scheme we did not involve insurance, since I knew it would be a short term event.  What I did was to kick-off the perscriptions and refills, but did not start tx right away building up a 'reserve' of peg without the risk of running short when I went to singles. Then, my wife (in a medical field) was able to scrounge up a couple. This is why I'm going to 46 weeks, not 48.  This might not work for you if you are going double-dutch for a protracted time.

[OceanLiver]

Thanks for telling me of you experiences.   Do you always do the 2 shots on the same night?  I am, of course,  glad to hear of your experiences with the SX.  My doc does not want to switch to PegIntron but he did mention possible going to Concensus 15 mg. every day.  But for some reason I thought that was if there was trouble with the insurance co.  I guess I am not clear on this. Did you have trouble getting your insurance co. to go along with the double dosing?  hope you are both doing well this weekend.
Ocean

[OceanLiver]

The old weight thing.  Yes, I lost about 10 lbs. before treatment. Almost as much as the doc recommended.  BMI 27.  I expected to lose more on treatment- but not this body.  He reccommends that if I lose another 10-15 lbs. then the current 1000 riba dose may be adequate.  With the harsh sides of riba, it makes me want to do that.  Also the more I hear about treatment and general liver health, the more it seems beeing slim is a big bonus.  So all my life I have struggled with my weight - vanity was never enough reason to disipline my eating habits.  It is also clear that the foods that make one heavy are also hard on the liver.  Fats and sugars. Portion control is a good tool for me.  That way I do not have to feel deprived, a piece of good bread or one cookie now and then will not hurt.  Have you checked your thyroid?  All that exersize and such low calorie intake you should be losing. You sound like you could easily be hypothyroid.  It seems to be very common.  They are now changing what is considered normal and you may be in the new range.

I have definately heard of doctors that will not treat until the patient loses weight.  I think taking the time to lose the weight will serve you in the long run.  It took me a while to set my life up to be able to do this treatment anyway.  So it will give you the time to prepare on all levels.  I kind of saw it as a test.  If I can adjust to the discomfort of dieting, I will be able to put up with the discomfort of TX.  Kind of stenthening my will power, if you will.   Also the start of my healing journey.   I have been careful not to gain weight during treatment and I will let you know how hard it is to get past my new "set point"  Good luck.  Maybe we could be weight loss buddies.  Got to go, I'm hungry! LOL.

[Rastiss]

I'm double dosing right now.  

After about 8 months of variable results, I did 12 weeks of double IFN (360ug/week).  I went back to a regular dose for a week, then my Dr. put me on 4 more weeks of double IFN plus another 200mg or Ribavirin each day. I've got one more double shot to go next Friday - then another 6-9 months on a regular dose. I'm trying to finally get down to UND and it is working. Can't rent a time machine so I guess this is the next best option.

The side effects of the double IFN aren't much worse than being on a regular dose, but the extra Ribavirin seems to make me feel worse and my ongoing rash has been worse lately.  I haven't had any rescue drugs yet and my HGB was still around 11.2 a few weeks ago. The proactive Procrit sounds like a good idea. Good luck.

[FlGuy]

At the start of tx#2 I double-dosed peg for 4 weeks.  In those weeks, both pegs on same night.  A little different here though. In tx #1, I responded but relapsed after the 24 weeks (geno 3).  In tx# 2 the double dosing seemed to help in those early weeks. I was und at weeks 2 and 6.  Probably should not have waited this long but I'll have another pcr this week (#16).  This tx will be 46 weeks.  There are a few others who have double dosed peg, for longer than I did.  I don't recall if Magnum was one, but he certainly was an Infergan guy.  My expereince was that the sides of double peg were not twice as bad a a single. I'd estimate a factor of about 25 percent, notably in headaches. It wasn't that bad for the results I got. Good luck.  As long as you have the insurance coverage, worth a try.   It's good you have a doc who will consider alternatives.

[foofighter]

Ocean, if I may ask if you were carrying extra pounds before tx? Was weight loss discussed?

You may have read some of my history, but if not, in spite of my cirrhosis diagnosis, my NP is wanting me to hold off starting treatment until I reach a BMI of 30 (which for me is 165 lbs...still 18 lbs overweight for someone under 5'5").

NP considers severity of disease and being overweight equal in the grand scheme of things as far as SVR. Until recently I was scared he was having me wait, but I know it is one more thing I can to do increase my chances my odds and I suppose it took me 30 years to get to stage 4, what's one more year.

I am 20 pounds away from the 165 goal at the moment.

Have you gained any weight while treating? I don't think he would want me to wait to get down to optimal weight, but I worry if I just hit that magic BMI of 30, that I would have difficulty losing any more or probably be one of the people that puts on pounds while treating.
I have always stuggled. Even consuming 1200-1400 calories per day over this last six months, if I don't get in at least two miles of walking 5 days a week, nary a pound will come off. Have a feeling I won't be able to keep that up once I start!

Has anyone else put tx start date on the back burner to lose weight? Because doc said so?

[Cindy10]

You might want to check in with FL Guy he double dosed a while, he can elaborate on that. I wish you luck!

[HCA]

You are a very slow responder and you will need extended treatment.At stage 4 you don't want to mess about.I agree that aggressive treatment (double dosing) is a good idea.
I would also consider changing interferons as the virus will have designed a resistant strain by now,so that may help to wrong foot it.
I can't go back over it all now but I seem to recall that the sx were not a major issue with double dosers.
Go for it!!!!!!!!!