Stopping Peg and Riba for a few weeks

[pjxak]

Hi - I'm new to the board but have been watching and many posts have been very helpful. It's nice to be able to get feedback from people who are actually going through the same things. I haven't been able to find anything about stopping treatment for a few weeks and then starting at a lower dose and I apologize if I've missed a thread. I've been on peg and riba for 11 weeks and due to overwhelming fatigue and weakness, and anorexia,  I have to take a break from treatment for a few weeks. I'm g1b. Wondering if anyone has had to do this and gone on to SVR. How long does it take to get this stuff out of your system? My last shot was a week ago Sunday so I've only missed one dose of Peg so far.

[pjxak]

All - after a good night's sleep and the reminders of all you good people about the risks of being off meds for three weeks, I decided to go back on the riba today. It was recommended to go down to 600 mg from 800 and that I will do. This is a good weight-based dose for me (>10.6 mg/kg) Did this last time I treated and remained und until I quit at 5 months.  I am convinced all my symptoms are due to the peg so the riba should not make the weakness worse, at least at this point. I feel I have no other options. I can't be bedridden for the next eight months. I will have to try a half dose of peg and maybe increase if symptoms are tolerable. It does seem my sides are worse than most. Seems most go to work or at least get up in the morning and pretend to some kind of normality in their day even though they are experiencing the side effects. I can't do this. I have no strength. I have a hard time sitting up. Thanks for all your support in my time of weakness. I can only hope this regimen will to therapeutic and get me to SVR.

cure - thanks for letting me know about how you deal with the sides. I have trouble sleeping too but I took a Dramamine last night and slept very well for the first time in a week. I usually toss and turn all night and get only about 3 hours sleep, sometimes less. Can't do that for too long either without going crazy. Having trouble with solid food. Hard to get down. Love the ice cream. Ben and Jerry's chocoloate chip cookie dough! Drinking boost though it tastes horrible. I mix it with milk and it's more bearable. I'm hoping the lower dose of peg will give me some relief of this side. Not quite as bothered by the rash though it is annoying. Not keeping me up at night anyway at this point. Count my blessings right?

Copyman - I was thinking about the new drugs and shorter treatment time but yes, I still have to figure out how to get through the peg and riba! Not to mention a third drug and all it's sides! I'm already into this 12 weeks and I don't want to start over so I should deal with it now.

Thanks Guys!

[copyman]

If you have to stop something you may want to consider stopping just the Riba for a week or two.  Or wait for the new drugs coming out this year. Just keep in mind that the new drugs will still include the present combo drugs, ribavirin & peg-interferon

[curehepc]

I am so sorry you are going thru such a time! Sounds worse than most! I was going to stop treatment myself, and these supportive people on this forum, helped me to decide to stick it out. The hardest part for me is eating and sleeping at nite. I find if I force myself to eat, my body does feel better with some solid nurishment. Mac and cheese, mashed potatoes, oatmeal, toast, soup and yup ice cream! I have very wicked horror movies in my head at nite! For rash I bought Aveeno oatmeal soap, Avon cracked Heel relief( it's a thick cream with lidocaine) and childs clarinex just one a day. Took the clarinex or clariton only once a day, in a week rash gone. I feel for you and we are all here to offer help, keep us posted!  

[pjxak]

I was afraid of that. Thanks for letting me know how it affected you. As I have said, I am uber sensitive to meds. I think I'm between a pediatric dose and an adult dose. I'd rather keep the drugs to a minimum and I think if I would sleep, I may be more alert and less fatigued during the day. Maybe I should concentrate on getting a good sleep aid.

[pjxak]

Provigil. I will check on that. I also have insomnia so I would have to check that out I guess and deal with that.  I did not have insomnia until last week. I was sleeping okay, not all night but I felt okay during the day. I toss and turn all night now. I took some Dramamine because that usually knocks me out but it's not doing what is usually does. I would love to get 6 hours of sleep!   I am very sensitive to drugs. I usually take half the adult dose of medicines and that works for me. Can't take tylenol pm because it makes me jittery. Benadryl too. Took Ambien once and had psychotic dreams. Didn't like that. My sensitivity to drugs compared to others is another reason I was hoping I could lower my dose and be successfully treated. I have very dry skin and a rash, almost like poison ivy in that I have a tiny blister that forms a small scab that itches. This I can handle.

[paen53]

Ice cream and frozen yogurts are great, especially if you have any mouth sores too!

I was prescribed provigil (nuvigil now, I can't remember) but didn't like it. I have heard others that said it really helped, but I think if the fatigue is anemia based, that it needs to be addressed first. The Provigil just kept me awake longer, extending my misery. You might ask your Dr. for a weekly trial packet and see how it goes. It also a hard med to get through some insurance companies. I would have had to pay out of pocket and it's quite spendy.

[nygirl7]

I loved the ice cream because there were so many flavors.  And I ate TONS of fudgicles (anyone who was here in 2005 would remember that I think they were my staple) all day long because they didn't bother my stomach and they kept my mouth from drying out too much.

Some people have gone on some medication that I cant remember Provigil? that is supposed to offset the lethargy. Most of us just shuffled through, brain dead, emaciated and almost hairless though....the anemia is the toughest thing of all though once it's in the 9s look out. but that does have a fix.  

Aside from not eating and lethargy what other issues do you have? Those two are definitely the most common of them all.Along with the rashes that is and that can be fixed up with a good moisturizing lotion and cortizone usually.

[Trinity4]

Provigil is used for narcolepsy but it is also prescribed by hepatologists for extreme fatigue.  I was prescribed it but I ended up not taking it.  I have heard others state it helped greatly.

Trinity

http://www.provigil.com/

[pjxak]

thanks for the support and good advice all. And thanks  Bill1954 for that story. I know that guy was very lucky and it's not likely that I will be but it does give me a little hope that anything can happen. I know, I know....it's not likely and I'm with you on that. I was very bummed that I am having to take this risk. I was expecting to get through it this time. So what other interventions should my doc be recommending for sides from interferon like the weakness and fatigue I have besides dose reduction? I do love ice cream and that seems to go down well. I was drinking Boost for a time but it's soooooo bad now. I actually liked somewhat for a time but it's hard to get it down now. Maybe I should just stick with ice cream. That still tastes good. My endocrinologist just called and he said he thinks the weakness is caused by the interferon. At least there is nothing autoimmune going on at this point.

[nygirl7]

Actually you are pretty lucky a BMI of 21 is very very healthy.  When I was on treatment I was down to a bmi of 18.......very unhealthy but I made it through.  It might suck but next time you have to just try eating ice cream and drink those protein shakes and stuff for some strength.  10.8 isn't low enough for Procrit in most cases because it's very very expensive and cost my insurance over 6k for a box of 10.

It's too bad probably you were UND judging by your numbers.  Maybe next time you can add the PI and make it through - although it might add more sides so you'd better find a doctor who might be a bit more proactive than this one was - there are things one can do to help treatment be a bit more tolerant (even though it's never any fun and almost all of us have had the same sides...a good doc or some knowledge in this can help).

[paen53]

I'd have to say that your plan of taking a break and then restarting at a lower dose is doomed from the start. We've seen a few people here and there that clear with partial compliance, but they are the exceptions rather than the rule. My guess is that you may be beating your body into the ground for nothing, especially being a 1b with little damage..

Maybe a better idea to talk over with your Dr. is to stop and wait for the new meds coming out this summer. Even so, get your ducks in a row and discuss a way with your Dr. to help minimize your sx, especially if they're the same ones that gave you probs with your first tx.  Loss of appetite is quite common and you need to find some way to get nutrients into your body. Trust me, I know it's hard, but it can be done. You may need to stick to some protein drinks for a time, and as unappetizing as they can be, they can keep you in the game. Good luck to you!

[Trinity4]

The newer drugs (protease inhibitors) are expected to be released 2011 mid year and increase the odds of SVR to 75% for genotype 1 as opposed to the existing 45% with the current standard of care.  Interferon and ribavirin will still be part of the treatment mix so waiting six months for a better treatment with better odds might be a consideration.
You have very little liver damage and there is no urgency to treat right now as opposed to six months or a year down the road.

Trinity

[Bill1954]

Sure, it’s possible you’ve gotten enough meds so far to tip the scales in your direction, but very unlikely. We have a guy in our local HCV support group that received a new liver and was on anti rejection meds. He started treatment (genotype 1) but was intolerant and quit after 7 weeks. This was in 2004, and he’s virus negative to this day.  Stranger things happen; but the odds aren’t on your side, as you know.

New meds are pending; perhaps if they’re released soon and become  available to you, you might be able to get by with a 24 week treatment protocol. Sorry again to hear it hit you so hard-

Bill

[pjxak]

It was my intention to go a full 48 weeks. The sides hit me kind of all of a sudden. I was driving and feeling almost normal until a week ago Fri. And then it hit me like a ton of bricks!   I was in the ER two days last week and the conclusion was all my symptoms were due to the side effects of the peg or riba. My doc said I am having worse sides than most. I was thinking I may have to start over and that's better than no treatment. I'm 60. The reason I decided to start again on the treatment was my enzymes were rising steadily for a couple of years and I'm not getting any younger and the hep isn't going to go away on it's own. I was dxd 2001 stage 1 after 40 years. After the first treatment which lasted about 5 months, undetectable the whole time, Fibrosure indicated no fibrosis. So I'm hoping the meds are giving my liver a rest. Liver enzymes have been normal since week 4. They were about 3x upper limit of normal when I started.

Thanks for listening everyone....

[Trinity4]

I don't advise it either but it is your choice and as long as you realize stopping treatment for any duration may impact negatively and you may be facing another round of treatment at some point in your life.  Good Luck

Trinity

[pjxak]

Thanks for your responses. Yes, this was advised by my doctor. My hemoglobin is not too low, 10.9 as of last Wed. So it's only mild hemolytic anemia and insurance won't pay until it's lower than 10.  I will be getting PCR done this week so I don't know yet if I'm und. My initial viral load was 1 million and at four weeks it was 678, that's 6 hundred 78, so good log drop but not und. My randon glucose was a bit high and T4 was also a bit high. TSH was normal. I am on thyroid replacement. I have a call into my endocrinologist and maybe he can shed some light on this. Also, I have treated once before 7 years ago and had to stop due to sides. This is much worse this time

I'm very disapppointed to have to take the break. I really thought I could to it this time, but I'm unbelievably weak and I have trouble eating. I get full after a few bites and nothing tastes good. I'm too weak to drive. Okay with weight so far, only lost a few pounds. I do know the chances of SVR are less when this happens but this is just not doable for me at this point. I am a small person, 5'1", 112 pounds and was on 800 riba and standard dose Peg. I've seen some studies that say smaller people seem to have worse sides and also can achieve SVR with a smaller dose.  I was hoping maybe I could be one of those. I have to stay off the meds until I get my strength back, get back on the horse but at a lower dose and work my way up to a therapeutic dose. thought there might be someone out there who had to discontinue for a time and went on to SVR. Thanks

[Bill1954]

Hi there,

Sorry to hear you feel so crummy. As others have mentioned, stopping meds in midstream can reduce your odds of long term viral eradication.

You’ll serve yourself better if you discuss this with your doctor, and assuming he/she agrees, starting the meds back up; perhaps the doctor can help better manage your side effects. Ongoing compliance with these drugs is important, and thought to be a leading cause of treatment failure.

Good luck—

-Bill

[HectorSF]

Stopping treatment for so long probably means you will have to start all over again. Others here can say exactly how long you can go between dosing but as it is 9 days ago for your peg and 9 days since ribavirin I would say the virus has probably returned at this time. (see your current PCR viral load test results).

There are a few things that you may want to think about for the future.
First you need to work with a doctor who you trust and can communicate any problems you are having with treatment so they can help you to manage the symptoms of treatment. Secondly you need to be committed to treatment for the period that it will take to work. With current meds you needed to be committed to following the regiment for 48 weeks. HCV can be a serious illness and the treatment meds are powerful medicine. You can not start and stop medicine whenever you want to and expect it to be effective. It doesn't work that way. Perhaps you should educate yourself about HCV and its treatment before starting treatment again so you understand the benefits and risks of treating and not treating.

You can still use this experience to prepare for re-treatment in the future should you wish to treat your HCV. Maybe you can wait for the new meds to come out later this year that may lessen the amount of time you will have to treat. By looking at your viral load response (PCR blood test results at week 4 & 8 & 12) to this first treatment, it may indicate your chance of this being a possibility.

Best of luck in the future.
Hectorsf

[nygirl7]

If you stop the meds you could easily relapse.  At this point as a geno1b chances are the interferon has not had time to train your immune system to fight off any remaining virus that might be hiding out.  Getting to undetectible is just the first part of the journey.  Staying UND is the hard part.

Many of us have experienced hemolytic anemia very dreadfully and yet have managed to make it through treatment by taking Procrit. You should speak to your doctor asap about it and not stop taking the meds. Chances are if you do you will end up retreating at another time all over again.

Do you know if you even got to UND at this point?  I would advise heavily against stopping the meds........that virus comes back easily enough for people who have done their entire 48 weeks of treatment.

[meakea]

Is this break from treatment ordered by your doctor?  Has your doctor offered you injections (Procrit) to help with anemia so that you can avoid taking a break in treatment?