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Incivek Anal Burning
I'm on my fifth day of Incivek and I'm already considering ending the treatment. The anal burning sensation during and after a bowel movement is nearly unbearable. I'm afraid to eat anything because I know that will cause me to have a bowel movement. It's like giving birth everytime I have a BM. Is this normal? I'm well hydrated and eating fat before taking meds. Any advice on how to make this stop?
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They have named it fire-rehia (spelling???)  I have read taht if you keep the stool firm, it helps alot...so at the first sign of it getting soft, start working on firming it up....fiber, or I'm not sure what else, but you can probalby put it into the search here and get a bunch of old messages on this very subject....it comes up ALOT!
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1747881 tn?1358189534
follow the link

http://www.medhelp.org/posts/Hepatitis-C/Anal-Issues-Bowel-Movements/show/1629482

also here is this

pooh55811  
Jan 06, 2012 .To: garelli.I was on Incivek for 12 weeks. I have been off of it for 2 1/2 weeks. I had the rectal problems with Incivek. After feeling like I was crapping hot shards of glass, I finaly figured out that the solution is to keep the stools firm, not like a rock, but pretty firm. The minute they get soft or loose, or heaven forbid, diarrhea, they start to burn and truly feel like shards of glass. It took me too tries to figure this out (two episodes of the shards of glass) but I did figure out what worked. TYhe third time it started I nipped it in the bud and cleared up the problem quickly.

To keep the stools firm I took loperimide tabs at the first sign of soft stools. As long as I got it before it got soft, I was fine. I don't know about the fiber. I read some place (but have no idea where) that commercial fiber binds with the pills so I never took any of the drugstore fiber.

Also, use Huggies (with aloe) baby wipes and use them every s single time you go. Keep the rectal area exceptionally clean.The generic brands burn, so I stuck with Huggies.

I also used Prep H suppositories and Prep. H cream. They worked.

Hope this helps because the rectal issues, if they are bad enough, could be a big problem. .
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ya, that's the post I was thinking of!
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408795 tn?1324939275
Welcome to the forum OJay.  All I can say is talk to your doctor and ask if there's a prescription type numbing cream you can use.  Do not stop tx, there's gotta be a way to continue.  I've heard of this anal issue and it's really surprising that Vertex was not able to eliminate it from the drug, but it is what it is.  good luck

Here's a link and a cut and paste from it.  

http://www.hcvadvocate.org/hepatitis/factsheets_pdf/SEM_Anal%20Itching.pdf


Managing Anal Itching and Burning
These recommendations are from medical providers
who are working with Incivek:
• For mild-to-moderate itching, try over-thecounter
(OTC) creams or ointments that contain
hydrocortisone. Use these sparingly and as
directed.
• Apply zinc oxide cream such as Desitin or other
protective ointment to the anal region. Calamine
lotion may also help.
• There are many products that provide relief for
anorectal problems. Preparation H offers a variety;
look for one that suits your needs.
• If these measures don’t work, your medical provider
may prescribe a cream or ointment and/or
an antihistamine.
Prevention of anal itching mainly involves washing
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1669790 tn?1333666195
The following is from Clinical Care Options: Strategies for Success: Management of Telaprevir-Associated Rash and Anorectal Symptoms

In the controlled trials of telaprevir, anorectal symptoms consisted primarily of hemorrhoids, anorectal discomfort, anal pruritus, and rectal burning.[1] Some patients experience diarrhea while taking telaprevir, which can exacerbate these symptoms. Overall, 29% of patients treated with telaprevir experienced anorectal symptoms. Most events were mild, and it was rare that they were treatment limiting. The median time to onset was 9 days, and the median duration was 57 days.[3] My colleagues and I have found in our practice that these symptoms are troubling or annoying to patients, but tolerable. Moreover, it is very rare that patients need to discontinue treatment due to these events.

Management of anorectal adverse events should target the symptoms through use of topical lubricants (eg, petroleum jelly, aloe vera), topical hydrocortisone cream, and in some cases, topical anesthetics (eg, lidocaine). The underlying approach is to get patients through treatment and to remind them that these symptoms will resolve when the course of telaprevir is complete.

http://www.clinicaloptions.com/Hepatitis/Journal%20Options/Collections/2011%20JO%20Hepatitis%20Volume%205/Articles/Sherman_NEJM_2011/Commentary.aspx
You need to register to view, but well worth it.
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    It is bad, I know ! This treatment is rough! I found that eating a lot of cheese for my20 gram fat helped  firm the stools. High fiber will cause it to be more bulky.  You need a good balance I do not know about others but mine  got better after a couple of weeks. Now it has settled down a lot. Hang in there. Peperation H, soaking in the tub and a lot of cussing helps
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I wonder if the people who write these things have ever experienced the sx their self.....
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Ojay, I found the probiotics kept my stool soft. If runny it did increase the problem. Was treated with tmc 435 another protease inhibitor. Kept the itching under control for a long time using haemorrhoid creams (zinc oxide, Lidocain Hydrochloride). Later it came back after been a bit lax applying that cream and it was no longer effective. Then I found a mixture of thrush cream (clortritmazole) the haemorrhoid cream and a cream called eumovate which contains topical corticosteroids and is available over the counter in the uk. In the uk they also sell wipes for those with haemorrhoids. Had to keep applying throughout in various combinations but it did work.
A big surprise was a product called Magicool plus. An aerosol that looks like something for the beech. Bought it when trying anything that supposedly stopped itching and dismissed it has worthless. Late on in treatment used it on my itchy ears has they were getting clogged with cream and it worked. Then tried it on the rear end has I had gone way over the recommended number of times to use the creams and it stopped the itch there has well.
Thought the fire in the hole problem would stop at 12 wks when I finished the tmc but it kept on till a few weeks after finishing the 24 wks.
Find something that works, the docs dont seem to understand that when you are down from hcv and then down from meds what to them seem trivial make your life a misery.
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1815939 tn?1377995399
"My colleagues and I have found in our practice that these symptoms are troubling or annoying to patients, but tolerable."
-------------------------------------------------------------------------------------------------
The terms "troubling and annoying" may apply to plain and simple diarrhea, anal itching, outer anal burning (although that can get bad too), but I can guarantee those clinicians that the internal rectal pain which feels like crapping shards of glass or razor blades, probably from internal fissures, is anything but just troubling and annoying. It is excrutiating, cold sweat excrutiating, pass out excrutiating, hang onto the sink cabinet excrutiating, as anyone on this forum who has had this internal pain will tell those clinicians.

I really cannot believe that no one in the trials had this internal rectal pain. While it may be true that most do not, the companies and trial people have done a  true disservice to those of us that get it by not to disclosing it. If they would disclose it and offer some effective remedies, people would not have to do trial and error or just plain suffer when they get it. In addition, many doctors believe what the trials state so they have no idea how bad this pain is. After all, the company/trials said it was only "annoying and troubling."

Personally, if I had not figured out how to control and prevent this, it may have been a game changer. I really do not think I could have tolerated that pain for 60 (or average 57) days.
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1669790 tn?1333666195
Pooh, i realize these publications sound impersonal without taking into account the true suffering going on by the patients.  This "matter of fact" style of presenting data doesn't always give comfort.  I'm just trying to present some findings from a very recent publication.  

I've often thought that anyone prescribing these challenging med should have to go through trt so they truely understand the struggles.  Perhaps they would be more responsive and sympathetic when responding to the patient's needs.  Hope this painful situation is resolved soon.  
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Yup, husband had that side effect first week.  Excruciating!  This was what he did to stop it right away, and at the end of week 6 it has not revisited.  He took 1 (not 2- important) anti-diarrheal to firm stool, and added in 15g of water soluble fiber at night.  Must be water soluble, the other kind does bind to meds.  Prior to finding this solution that stopped the pain and allowed him to heal, he soaked in Aveeno oatmeal baths after each BM, and used Nupercainal cream and Prep H suppositories.  The dr. prescribed a prescription foam that did not work for him, but may work for you.  The key was slowing down the frequency of the BM's, and bulking up the stool.  Best of luck to you, and please hang in there and don't stop tx.  You can get a handle on this and be alright, I promise.
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1815939 tn?1377995399
Sorry if my post sounded directed at you. It was not but the quote came from your post so that is why I put your name in, so people could read the entire context of what the publication said (since I took only one sentence). I know you and others and me often post things from publications so the data gets presented and I think that is great. It is good to know all of the new stuff out there. We should be aware of everything out there.

Underestimating how many side effects we have and the severity of some of those side effects (by the doctors) and then not appropriately and proactively addressing the major side affect (by the doctors) is a huge pet peeve of mine (as some have probably noticed). There is no reason why we as patients should have to reinvent the wheel when dealing with these side effects. There really should be some guidelines for clinicians so they know how to deal with these issues, so they know we are not just crybaby whiners, and so they can prepare us in advance and/or give us the appropriate advice and treatment when the sides appear. They have guidelines for the sides that might kill us (anemia, blood work off, etc.), but if the side is not life threatening, it is just "annoying and troublesome." From the posts, some of these doctors don't even appropriately treat the rashes, which can be severe and in rare cases, life threatening. Even mine waited too long to order the fluocinonide ointment. I should have had that ointment a week before I did. Most of the sides we just have to deal with, but those that can be treated should be treated.

I get really frustrated about this and it makes me angry. They have no clue what we are dealing with. Mine keep telling me how well I am doing and that I look great. My case manager said I am their poster patient. (They see me on Mondays, the same day I take my inj. later that eve, so my best day.) Well, maybe I should  go in there disheveled and in my nightgown, looking like I feel (like crap, lol).

I do think another reason this gets to me is that I worked for decades in the health care field and I used to write protocols and policies. It is not rocket science. There is no reason there is not more attention paid to this.

I agree, those docs should have to go through any treatment  they prescribe. They might look at it in a different light.

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1972385 tn?1343830676
Yes,hrsepwrguy  has the right idea to keep it clean.My dr perscribed Pramosone hcl 1% hydrocortisone acetate 2.5% cream.I have tried the rest now get the best.Not the generic brand.But it is expensive.About $80.But is is worth it.It is the only cream I use.I will swear by it.The others did not work for me.My colonoscopy dr uses it after he does a colonoscopy.But ignore the expiration date.My dr told me that is put on there to protact the company from law suits.The cream is still good even 3 years afterwards.You will not use that much in the long run.Clears up the area fast.Highly recommended.
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190885 tn?1333029491
mine came on early like that and was gone for the most part by end of week 3....good luck....billy
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1979985 tn?1326238881
CALMOSEPTINE is 8dollars you can get at Walgreens. It really works for an over the counter med to relieve the pain. As far as the shards of glass= I don't think anyone can truly understand unless they experience it. It is quite unbearable and makes me cry but after 10 mins. the pain lessons and I can lie back down in bed. Unfortunately I haven't been able to stop the diarreha but keep on trying. Really too tired to think about it a lot of the time. Too busy throwing up ha ha.
Try it and see if it helps a little. Good luck.
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the number one thing to get rid of the burn is DIAPER RASH OINTMENT.  Put a dab on everytime you go, and take immodium....end of problem
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I posted suggestions from everyone on this forum over the past few months regarding this side effect in my journal:  
http://www.medhelp.org/user_journals/show/333064/Incivek--Ideas-for-dealing-with-anal-rectal-pain-or-bleeding
My husband suffered with this side effect, which for him also included bleeding (probably from internal hemorrhoids).  
Advocate1955
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My hubby says it's like pooping a mixture of peanut butter and turpentine.  He's on week 3 and was doing great until about 5 days ago.  Between the trowing up and painful poops I feel sick for him.  I got him Prep H and Hydrocortizone and so far I think we need more.  I think we will try the diaper creme.  I got "Female" sanity wipes and those seem to help a tad. He also said his hemrhoids are the size of his butt cheecks.  I guess I am just letting ya'll know that you aren't the only ones and if we find something  will definately be back to let ya'll know.  Hang in there!! Think about the other side of this.  It'll be worth it!
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1815939 tn?1377995399
I am sorry your husband is having this problem. Several of us ghave had it.

I found that keeping the stool firm was the key. It took me some trial and error to figure this put because firm stools seems counterintuitive when one has hemorrhoids. It really  need to be firm, not hard as  rock, but firm. If it gets soft or loose then the pain is really horrendous. To keep the stools firm I used Loperimide at the first sign of a soft stool.

I also kept the area super clean with Huggies baby wipes with aloe.

At night I put in a Prep. H supp.

I also used Prep. H cream and some prescription xylocaine with hydrocortisone cream for the outside and the hemorrhoids.

I am now off Incivek and the internal rectal pain is totally gone, has not reappeared. The outside is irritated now (excoriated and itchy) (never healed up from the Incivek burn) and now I am using Desitin cream (40% zinc). That works like a charm.  I should have got some of that sooner, lol.

It will get better if he keeps the stools firm, I think, and after Incivek is finished it should go away.

For the nausea have his doctor order something. I waited too long and was really sick. Once I got on Zofran 8 mg. every 8 hours (took about an hour or two before my Incivek dose) the nausea cleared up and I felt considerably better. If Zofran does not work, the doc can order some other antinausea med.

I wish you the best.
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1856046 tn?1330240845
Thanks for all the suggestions everyone. I start Tx in February with a four week lead-in and then the Incivek. After reading all this, I can hardly wait!

On the subject of fiber, I have diverticulitis and IBS like symptoms and I have found that taking fiber twice a day has kept my symptoms away.

The best fiber I have found is Heather's Tummy Fiber. It is not gritty and has no taste and doesn't bulk-up while still in the glass so if you have trouble swallowing this really helps.

The cheapest I have found it ($10.95/lb)is at iHerb and shipping is free in the US for orders over $20.

Here is a link:
http://www.iherb.com/Heather-s-Tummy-Care-Acacia-Senegal-Tummy-Fiber-Organic-16-oz-453-g/16509

With the diverticulitis/IBS I am VERY familiar with the 'burning shards of glass' feelings and since I have been taking this EVERY DAY, no problems.

Thanks again for all the tips and I have bookmarked this thread for easy reference and good luck to all!!!

Chris
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1635208 tn?1300810760
Hydrocortisone cream 2.5% .  after EVERY movement wash with Aveeno body wash, put on cream back there & when things calm down you can use Tucks.  Also no straining & no soft stools..watch diet.  These things worked well for me.  Cleared up completely after 6 weeks........hang in there  --  there are so many more interesting things ahead.  Seriously, it will all be fine ....just a little "bump" in road...............Get well..........
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My husband has the same problem - on his 5th week and has found Desitin ( the diaper ointment we had in for our son) works great. He says it's the most unbearable part of this treatment. We are hoping it ends when he is done the incevik
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I am telaprevir+riba+interferon treatment, week 8.

Also had the firerrhea. It was so painful at first that I did wonder how I would make it through the entire treatment. It got better, still itches at times, but not this unimaginable shards of glass feeling everytime I have a bowel movement.

I agree, the key is to keep your stools regular, not too watery, not too hard. Steroid and zinc ointments didn't work for me, made it worse. Bag Balm works wonders, I put a little in the morning and in the evening, seems to keep things at bay. Not completely itch free, but not crazy-can't-stop-itching-there state.

Good luck!
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Don't stop treatment!!!!!! There's gotta be something that will help.

I've had three kidney stones, and thought I knew what pain was, but this was a whole new dimension...not worse, just different. Like pooping red-hot lava. Screaming helped a little.

No interest in repeating that experience, so I'll go to the drug store and try a few things...

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2069069 tn?1331567716
I started Incivek on 2/24/12 and have been experiancing severe rectal burning and discomfort, to the point of almost falling to my knees in pain!! I was reading about Incivek product info, and one thing caught my eye, 82% of incivek is excreted in feces, which got me thinking that is possible that the feces themselves are the irratant.Not the consistancy or frequency?Ive noticed that being hypervigilant about peri care helps a great deal, as does warm sitz baths..But even though I clean myself thouroughly after every BM, I shudder to think about resuming my love of the outdoors, and hiking, and fishing. I feel kind of shut in and scared to stray far from home.Also Ive noticed that every site Ive given myself of the Pegasys is red and stays red, and itchy.I have constant head aches as well.And fatigue as well. this Tx is no joke!!
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1815939 tn?1377995399
Yes, I think I would agree that it is the Incivek in the feces that is causing the irritation. (Welll, I am pretty sure about that since I have had no problems since being off Incivek.) Howevr, I found that the softer or the looser stools, which tend to be more frequent simply because they are passing faster, are the ones that caused me trouble. As long as I kept the stools form, I was okay and had no problem with the pain or burning. (I was one of the people who had severe internal pain when I passed those loose or soft stools. I thought I was about to pass out each time.)

Someone posted (not sure if it is in this thread) that eating more fat helped a lot to prevent the pain and burning. I know it is a lot of fat, but if it works, might be worth a try.

Of course, Huggies wipes, Prep H supp. and Prep H cream also helped as did letting the shower water run over my behind. Some use butt cream or butt balm (not sure of the name but I did see it in the pharmacy) and others use Baneal (something like that). It is in the pharmaacy too.

There are (at least) two types of problems. One is the burning at the anus but some of us also got the horrible internal pain (like crapping razor blades or shards of glass). They both stem from the feces but the solutions may be different. All the creams in the world did nothing for that shards of glass pain because the cream was on the outside and the pain was on the inside (probably from fissures caused by the burning frequent feces). I had to keep that feces firm.The suppositories helped too.

I hope you can get this under control. If you can figure out a way to stop it treatment will be much easier or, at least, a lot less painful. Not sure I could have stood that pain for 12 weeks solid. So try a few things and hopefully you can get rid of the pain, at least.  

By the way, welcome to the forum.

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1815939 tn?1377995399
Just want to add that many of us had those big red itchy circles affter the injections. They stay around for awhile too. You could try some hydrocortizone cream on them to stop the itching but I never put that cream on until at least a week after I had injected at that particular site. You may want to run it past your doctor just in case. It is always best to discuss problems with the doc or case manager.
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1972385 tn?1343830676
This to will pass,a common side effect with Incevek.I almost quit and I found this forum and it saved me.Keep the area clean and treated after every BM.It should clear itself up and be less painful.Use non-alcoholic baby wipes.
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15g of water soluble fiber at night ended this terrible side effect for my husband, but there is some other very good advice here as well.
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Hi, welcome to the forum. I understand your discomfort, I finished incevik 5 weeks ago it was uncomfortable to say the least. I did notice eating the fat as instructed did help, but it still burned. I used warm wet wipes to ease pain. I will tell you almost immediately after finishing incevik the burning subsided. I still have a little discomfort but I still have 6 more weeks of Pegasus and ribo. I wlil also tell you I did develop anemia and the Dr prescribed procrit and it did help. I hope that you could do this like the old cliche one day @ a time and finish it will make you stronger! Stay well and god bless  
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532827 tn?1331364628
First time post to the community. Let me endear myself to all of you by talking about my ***!

Specifically, the anal burning. My experience was the shards of glass thing starting about day 3 or 4. I know a thing or two about pain, having severed my Achille's, but this was heavy duty and I wondered how the hell I could last through treatment. The really painful craps only lasted a bit more than than a week, though -- even so, it was an eternity in my mind.

The anal burning has not returned as of the 4-week mark. I started taking a bit more than the 20 grams of fat and perhaps that helped.

Can't say how typical my experience is. But if you're going through this agony in the early stages, it may get better.

Pointer: Baby wipes, torn in half. Boudreaux's Butt Paste. Ahhh.

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Welcome, Nazzman.  Nothing sacred here, so you did just endear yourself.  Glad that particularly fun side effect has gone away!
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1749655 tn?1321804534
Hang in there.  I am almost in my 8th month of treatment and suffered terribly for the entire 12 weeks that I took incivek.  It started on day 2 and I honestly thought I would pass out from the pain.  I tried everything and nothing seemed to help.  The best advice is to keep things clean, take some metamucil or fibercon and I found A&D ointment and immodium helped the most.  Once I finished the incivek things returned to semi-normal.  Good luck.
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My husband started the triple therapy program 5 days ago and he has had the hemmarroids for 2 days. Excrutiating pain. You are so right about the trial patients not mentioning this problem. The doctor and nurse we deal with never did mention this symtom appearing, after reading comments on this forum i feel better that he is not the only one experiencing this. Because it wasnt mentioned to us we thought this was an isolated issue.
Thank you, he will try some of the recommended treatments
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My husband started the triple therapy program 5 days ago and he has had the hemmarroids for 2 days. Excrutiating pain. You are so right about the trial patients not mentioning this problem. The doctor and nurse we deal with never did mention this symtom appearing, after reading comments on this forum i feel better that he is not the only one experiencing this. Because it wasnt mentioned to us we thought this was an isolated issue.
Thank you, he will try some of the recommended treatments
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The trial patients did tell the study centers about this. I was one of the participants and it was well known about incivik and hemorrhoids.  It happens in a large % of people treating with this PI. Some worse then others.  Symptoms  are treatable so don't quit because of it.

If your doctor & nurse are unaware of this side effect then they must not be up to date with treating HCV.

Best of luck
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All these ideas sound good. For me, however, I've had to keep my stool loose. I use a stool softener twice a day and a laxative about every other week. My hemorrhoids and rectal bleeding are so severe that I cannot afford to pass a hard stool... Anacort is a prescription strength suppository which I find much more helpful than prepH.
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