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Week 4 of treatment struggling
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Week 4 of treatment struggling

Hi I'm at week 4 of triple therapy and some of the side effects are really kicking my butt. My doctor kind of didn't help when I said how I was feeling, she just said how I'm feeling is normal. I guess I was hoping for some coping suggestions. I'm so exhausted, I nap on my lunch break at work and stay on my couch until bedtime and sleep a full night of sleep! I'm a day care teacher and even at work I'm taking it easy, I'm sitting with the kids instead of pacing around the room checking on them. I also have a serious side pain almost all the time! It's behind my right side of my ribs, my dr said its my liver and it means the meds are working and to take tylonel. It brings me to tears in pain, I can't sit a certain way and the tylonel doesn't really help. My menstral cycle is off, I haven't gotten my period yet but my cramps are terrible!! I feel like I'm 14 again with these cramps! I'm on BC so I don't get bad cramps too! My depression is weird, I don't know how to explain it. I started Prozac 2 weeks ago, so I'm not crying all the time but I'm just numb. Not happy not sad. I don't know if I like it. My anus is insanely itchy and burning, I'm putting pep h, and witch hazel on it but I still am in so much pain before and after a bowel movement. My skin is itchy, been showering less in hope it would clear up and for the most part I'm not as itchy. But the creams don't seem to work as well.
I know I have a lot of questions but the most important ones are my fatigue and anal issues. I need to figure out other ways to cope.
17 Comments Post a Comment
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1840891_tn?1383280315
Welcome to the forum! I am so sorry you are having such a hard time, but I'm also really impressed that you are working every day, and with kids no less, while doing this tx. You are tough! I don't know if much can be done for the fatigue unless it is being caused by anemia - in which case your doctor could either give you an Rx for procrit or possibly order transfusions for you. What have your blood tests been showing? We'd be especially interested in your hemoglobin counts. It would also be good to know your viral load (HCV PCR) at the beginning and at the four week point, as those numbers determine how long you have to treat.

I didn't have the anal issues, so I'm not an expert on that, but I do know that nearly all of the symptoms are worse if you aren't drinking at least a whole gallon of water per day. That's really important! It's also very important to follow all the rules very precisely when it comes to timing if the meds and the food that goes with them. I hope someone else will come along with more advice on the anal issues. Best wishes for SVR!
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4670047_tn?1375734001
Hello there!! Wow I'm like ceanothus, impressed your working with kids!! I'm not doing triple therapy but with the bum issues you can try dermablast spray (Wallmart) about $7. The other thing is nupercainal ointment. I've heard of people ordering it on amazon. I don't know what store sells it. Those are my favorites!! Good luck!!   Kitty
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Avatar_f_tn
No anemia, my dr said all viral loads are normal and decreasing. As much as I feel I don't have the energy should I try walking? Or small exercising?
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Avatar_f_tn
Thanks for your suggestion!!! I appreciate it !
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4670047_tn?1375734001
If you can, try and fill out your profile a little more. I wouldn't know how to advise with exercise except maybe if your younger you can handle more. But just do not over due that. I know where your at sweetie, your trying to work out the side effects. Don't mean to sound like Debbie downer but for the most part they are what they are. I think your doing what we all do on treatment, it's human nature to try and fix ourselves.  By all means if you find something that works for you do it.
My granddaughter while she exhausts me she takes my mind off of ME!!!
:):) Kitty
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1815939_tn?1377995399
Welcome to the forum. I, too, am sorry you are having these side effects, although most of them are pretty common among those who treat. I, too, am impressed that you have been able to continue to work, especially with kids.

It is unfortunate that your doctor is not helpful with coping strategies or side effect treatment. This is a common problem, it seems, with treatment. Many doctors either have no clue how to assess or treat side effects or just seem not to care. However, many of us have had to deal with these side effects so hopefully we can offer some suggestions that help.

As far as fatigue is concerned, that is very common. Unfortunately, there is not a great deal that can be done about the fatigue. Most of us just learn to live with it during treatment knowing it will improve when treatment ends. Getting plenty of rest and resting when needed is important as well as slowing down ones pace. Napping at lunch sounds like a good idea. Clearing off the calendar helps .... do only what one has to do. Don't book a lot of extra engagements or activities. Letting go helps ..... forget about any major cleanings or chores until after treatment is over. Just do what you can and let the rest go. If you are able, walking is beneficial, but I would not overdo it. Low level exercises would also be beneficial. They won't help with the fatigue, but they will help to stem the muscle loss that goes along with inactivity.  

I don't know what to tell you about the right sided pain other than it should be checked out by a physician. A lot of things can cause right sided pain and the way you describe it, it is right flank pain or possibly higher up. Regardless, it should be checked. If you treating MD is not paying any attention to it, then go to your regular primary care MD and ask him/her to evaluate your pain. It could be kidney pain, or from a number of other medical problems. I don't buy that statement from your doc that it means the meds are working. That statement, to me, sounds like a brush-off, and I do not think it is based in any fact whatsoever. You need to be seen by someone who will listen to you and investigate the underlying cause of the pain.

You have been on the Prozac only 2 weeks so it may be difficult to tell how you will feel once it gets up to a decent blood level. If it does not help, maybe you can be evaluated by a psychiatrist and get on a different antidepressant.

The rectal/anal issues are a problem with Incivek. I had severe internal rectal pain and it sounds like you may have that side effect too. The best way I could describe it was crapping shards of glass. Others say crapping razor blades. If that is the type of pain you are having, then what I found (and others found too) is that keeping the stool very firm will get rid of it. I took loperimide at the first inkling of soft or loose stools and as long as I kept the stools very firm, and I do mean firm, then I had none of that crapping shards of glass pain. If the stools got even remotely soft, then I had the pain. That is internal pain so creams and ointments are not going to help it. Annusol supp. might, but if you can avoid it in the first place, that is better. Loperimide is over the counter so you can get it at any drugstore. The Annusol supp. are prescription. For the exterior, I used Huggies Baby Wipes to keep the area spotless. Any tiny little piece of stool will cause a problem so the Huggies wipes kept me clean and debris free. The generic brands tend to burn so go with a good brand that contains aloe and is for sensitive skin. Showers also work. Then I applied baneal or butt balm or xylocaine cream with hydrocortizone (prescription) or desitin cream or A&D ointment or Preparation H cream. You will have to experiment to see which of them works for you and sometimes one works for awhile and then one has to change to another. I also combined them sometimes, using one in one area and another in another area. Also, I used Prep. H suppositories at night. The Xylocaine with hydrocortisone was good for the external pain and the itching. Keeping the area clean also helped with itching.

For the skin, you may need prescription steroid creams or ointments. The over the counters were worthless for me. I used prescription Fluocinonide ointment for my body, clobetesol soln for scalp, and Hydrocortisone Valerate for my face. But I had a rash also. For the itching, if Benadryl is not working, then you may need a prescription antihistamine. I used 50 mg Hydroxyzine every 6 hours for the itching and it also greatly helped the rash. If you get a rash, get on top of it immediately. The rash can and will snowball out of control rapidly.

I hope this helps.
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1840891_tn?1383280315
Walking IS a very good idea. It may sound like the last thing you want to do, but it is one of the best ways to boost the energy levels a little bit. Carry a water bottle with you everywhere you go and sip it constantly. The drugs do take a very large toll on your energy and there really isn't any magic solution. I'm guessing that you are relatively young, is that right? It seems like its mostly the younger people who can manage to work all the way through triple tx, and the older you get the harder it hits you. I treated at ages 41, 51 and 58, and it got a lot harder each time. Fortunately, the "third time is a charm" worked and I finally achieved SVR. I don't know if I could have gone through one more tx.

I think if you search within the site for the words "anal" and "triple tx" together you will find many discussions of that problem and many possible tips for handling it. I do remember that people have said one key thing is to keep your bowel movements to proper consistency, using meds to firm them or loosen them as needed, and that it was far more likely to be painful if they were too loose or if constipated. I also remember people saying that they had much more anal pain if they took their pills without adequate food or if they didn't get enough water. Beyond that there were some medical remedies that I don't remember clearly. Are you doing okay with the upper G.I.? No extreme nausea problems? That was my worst sx from the Incivek and there is a miracle Rx for that, called Ondanesetron. If nausea starts getting you ask for that right away, as the nausea tends to get worse really fast once it starts. Depression is extremely common with interferon. I've gotten it bad every time, and have always had to up my dose of antidepressants right around week 4 to 6. Better control of that might help with your fatigue problems. When will you get the results from your 4 week HCV PCR test? I hope it is UND, as then you will only have to treat for 24 weeks total (assuming you don't have cirrhosis). Best wishes!
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1840891_tn?1383280315
So glad to see that Pooh joined in - she is one of the most knowledgeable members here (and an RN, if I remember correctly).
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4670047_tn?1375734001
Oops!! The brand Nupercainal is discontinued but you can get Dibucaine 1% in on amazon. But if you can get the prescription pooh suggests it would probably be a lot more effective in your condition. I had the discomfort only on occasion after my shot. But I was spared the "Fire in the hole". Good luck!!
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Avatar_f_tn
Wow thanks so much! I feel like I'm crapping pine needles! I  am scared to use the bathroom in a public place because I basically scream in pain almost every time. I've been taking fiber gummies to help, haven't really noticed a difference yet. I've been using wet wipes and putting prep h cream on religiously. I think I might try one of the other creams suggested. I have an extremely sore bum, all the time.
I guess I am young for the treatment, everyone in my mandatory triple therapy class was at least 50+. I'm 23. I feel the day I struggle with the most is the day after my pegysus injection. Today I napped for 2 hours and after I woke up I tried doing some dishes, felt like I was dizzy so I layed back down, but now I feel like I could sleep more! I know this treatment is only 6 months out of my life, but so far I feel kinda bummed about my weekends/ days off consisting of more sleeping.
This is the first week that I've felt nauseous, it seems to be random when it happens. But I haven't vomited yet, so I guess that's good.
In 6 days I will find out if I'm negative or positive so far. I'm nervously excited. I kinda wish I could tell other people other than family and close friends  what's going on with me other than a "liver treatment" I guess I'm embarrassed? Or I don't want them asking questions? I just wish people were more informed, if they were maybe they wouldn't be so quick to judge.
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1815939_tn?1377995399
Well, it sounds like you got the crapping shards of glass/razor blades/pne needles. Yes, I know the feeling and the pain. I used to break out in a cold sweat, get white knuckled hanging onto the bathroom vanity, and feel like I would literally pass out, and I was swearing as opposed to screaming, albeit it was very loud swearing. I scared my cats. I am pretty sure firming up the stools will get rid of that pain and keep it away. That internal pain is most likely caused by fissures from the burning loose stools and diarrhea so getting rid of the loose stools and diarrhea fixed the problem. If it is okay with your doctor, Loperimide works pretty fast.

I think with the fatigue, unless it is due to low hemoglobin,  a person just needs an attitude shift. Most of us get/got fatigued, some more than others. I got really frustrated at first because I was getting absolutely nothing done. But then I just accepted that I was going to get nothing done and everything became much easier. I no longer got frustrated. Keep in mind this is for a limited amount of time; then you get your life back. The other thing to keep in mind is that we are fighting a very insidious and dangerous virus and disease. We need to get rid of this virus. We need to concentrate on getting rid of the virus. The main focus during treatment is to take all of the drugs on time, eat the required fat (if on Incivek), and complete treatment with hopefully no dose reductions. The other thing is to stay on top of the side effects because they can and will interfere with treatment and may even cause some people to quit treatment or reduce dosages. So the main focus is to stay on treatment and get the most out of it (hopefully cure). If we don't vacuum for 6 months, so what. Too bad, LOL. I did not vacuum for months and I have cats. I also would not let anyone in the house, LOL. I made an effort to do one thing a day ..... either the dishes or the laundry or clean the little box or cook something. But I did not do more than 1 thing a day. At the most 2, on very rare occasions.  I was just too tired. So don't feel bad about feeling tired or wasting the weekend. Besides, you are not wasting the weekend. You are treating your Hepatitis C. That is not wasting your weekend. Treating your Hep C means you are accomplishing the most important thing in your life right now so you can live a long, healthy, Hep C free life.

It is great that you are treating at age 23 before you get a lot of damage or a lot of extrahepatic manifestations. Most of the rest of us would have loved to have treated BEFORE we got older, had more liver damage, and had extrahepatic manifestations.

Hang in there. You are 1/6th finished with treatment.
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4856858_tn?1365382377
As already said, you need to check for anemia and get procrit if you are anemic. When I started having anal problems I got a prescription for some suppositories. I took (or shoved) about three of them. That kind of cleared it up and just needed vasoline after every trip to the can after that. It was Hydrocortisone AC 25 mg suppository. Good luck to you and be prepared for itching down the road. Ask on this sight what to do when that happens. Maybe you can beat that part down b4 it gets bad.
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2114467_tn?1358213856
Hi there. Looks like you are getting some good advice. The fact that we are forced to rest while on tx. is difficult at first. I worked full time when I treated. On my days off, like Pooh, I would usually do one small chore. Then, I would hang out on the couch with my stack of magazines. Just making a phone call was a lot of effort. I would visit this site a lot, so I didn't feel so alone. You can even rant here when you are having a bad day; we've all been there and many are early in tx as you are.
I had the discipline of regular swimming so I did really short swims. The best part of that, was the small group of woman, at the club, that supported me thru all the rough times.
Good luck on your test results. I think seeing the results may help. Do not be alarmed by your CBC's. it kind of scared me at first because I really got how serious these meds are.
Rest, drink water, find a confidant and remember there is life after treatment.
Cheers
C
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1669790_tn?1333666195
Welcome to the forum!  You are at the point where the med have fully saturated your body/blood cells and you are feeling the full effects.  Hopefully now things will begin to level off and you will begin to adjust to this new normal.  You will have good days and bad, so just do your best to get through them.  Much of this is also a mental challenge, wondering if you can endure the total length of trt required.  I'd guess that you treating for 24 weeks, so you're fortunate, since many of us had to trt for 48.  Try not to think of how much time is remaining, just focus on the day and the week.  Time will click by and you'll be at the end before you know it.  

Regarding your question about fatigue - it is very normal.  As 1swimmer mentioned above, she continued her swimming routine, but at a lower level.  I also continued my cycling, but backed off considerably in both pace and distance.  Although it took some energy to get out and do it, I always felt better afterwards.  I'd encourage some form of exercise if you feel up to it, such as walking, yoga, etc. to get the blood flowing.  But do get plenty of rest also.

Be sure to visit this forum often, since there are some great people here to help and give advice.  Best of luck to you.
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Avatar_f_tn
I didn't go to work yesterday due to side pain, body aches, insane tiredness, irritability, and a terrible migraine that made me nauseous. I went to work today and I feel the same. I just want to lay down and sleep! This ***** so bad. I called my dr and she told me to not drink so much water?!?!!!!! Gah I seriously feel kinda hopeless right now and really trying to be positive. I don't know if I should admit myself to ER because i feel like I'm losing my mind--- like I can't make it through another day?!!  Wtf do I do with work? Like how do I make money to live if I feel like I can't even work?? Someone help I really feel lost these past few days....
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Avatar_f_tn
hi there im so sorry that you are having a rough time of it it must be really hard esecially working with kids they hard work at best of times. Have you got any holidays due could you use some of them just to give yourself a breather? Also your tabs need time to help with depression i think you have hit the brick wall hubby got his wk7/8 but after felt much better  Hang in there you should feel much better when finished with incivek  please find out if anemic because you get get help for that and it should help you feel better once treated best of look for the rest of tx
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1840891_tn?1383280315
Some days are just gonna be awful, but hopefully they will be interspersed with better days. Many people find it is cyclic, with their worst days being one or two days after their weekly injection. Try to look for a pattern and you might come up with a coping strategy. I don't think I've ever told someone to ignore their doctor but I'm gonna do it now: I can almost guarantee that you will feel much sicker if you drink less water. We all have found over and over that lots of water helps the sx.

For the energy problems, do you drink coffee? Studies have shown that drinking lots of coffee actually improves the success rates with triple tx. My stomach was too sensitive to take that advice myself, but I'd ha e done it is I could have. Good luck!
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