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4896357 tn?1360670904

Need Urgent Advice Please

I'm on week 8 of Pegintron, Ribavirin & Victrelis. I've been getting weaker and out of breath. I have zero energy now to get anything done. I'm starting to get some small areas of rash but not bad. The best thing I've found to put on it so far is triple anti-biotic ointment w/topical anesthetic. Yesterday I went to urgent care to get an emergency cbc. The results look good. Hemoglobin is up to 14.1. WBC is 2.4. RBC is 4.8. I called my Dr. and he said to stop the meds because the rash can be fatal. I told him it wasn't that bad and that I wanted to continue the meds against his advice until he could see me. After they got the cbc, my doc agreed for me to continue the meds until I see him this Monday. The rash is not that bad and I think the doc will agree on that. A member here posted a picture of himself with the severe rash which kills the outer layer of skin. His back and shoulders were covered. He spent 17 days in the hospital. My doc told me the rash can be fatal. I am no where near this bad rash. It seems to me that most of us are dealing with some rash issues. I need to get my energy up though. I don't think I can continue like this. I don't want to stop tx. I worked so hard to get this. I cried when they told me to stop. What can be done to get my energy up? What should I ask the Doctor? I don't feel good at all. We will be doing the 8 week viral load test now too and if I am positive then tx will probably be stopped for that reason but I expect to be und. After my 4 wks of just interferon & ribavirin I was detectable. I need energy! TIA.
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Avatar universal
Rising from the dead


Stopped taking meds today, easter Sunday. After 36 weeks on this horrible medication - interferon, ribavirin, boceprevir and suffering just about every side effect that they have, including DVT after coming home from work one day and laying virtually motionless in a lounge chair for 3 weeks. Also had 3 blood transfusions due to low haemaglobin...I have finally reached the end and feel like I deserve a medal. My HCV has been undetectable since week 8, so I am hoping my meadal comes in the form of SVR.
I certainly hope that losing almost 9 months from my life on this medication proves worthwhile and am currently rejoicing in no longer having to subject my body to this toxic, poisonous regime.
I also hope that the new medications in the pipeline prove more effective, less toxic, less debilitating and of shorter duration.
Good luck and best wishes to all fellow sufferers.
If I was you Carl, I would continue the treatment...I know it makes you feel terrible as I have been there, but persevere.
.

Helpful - 0
Avatar universal
My 2 cents.  I am in substantial agreement w/ most of the posts here.  the rash is far more associated w/ incivek.  Before incivek though, people still had issues with rashes with ribavirin.  At a certain point you may need to have it looked at.  I have a friend who had the rash (with incivek) get too advanced and at a certain point was not capable of tending themselves (they were in very serious condition).  No one is telling you that you don't need medical care, just that with victrelis a rash issue is far, far less common.

Regarding anemia, people can give you reports of what worked for them, but no one is telling you to tough it out, it is doable, etc.  We see people on boards DO adjust, or do reduce dosage of riba in some cases but once again, few if any of us are doctors and can or should make that call, IMHO.
     It is not uncommon that people have passed out due to anemia.  A friend of mine passed out and knocked out their front teeth.  Another member here passed out in the doctors office, just from standing up too quickly. You don't want to get into a situation where you could be working by yourself and get into trouble.  I often hear that men have more trouble dealing w/ low RBC than women, but I think I have noticed that different people seem to have differing thresholds/ ability to adapt or maybe it is just their circumstances that help.

Good luck,

willy
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Avatar universal
Your counts are good. It seems like your symptoms and side effects are typical side effects of treatment. Some people can work through treatment, and some can't. It's a choice you have to make. When my hubby was on "consensus interferon" treatment (daily injections of consensus interferon and 1400 mg of ribavirin), he felt very sick and very fatigued, his counts all dropped, but he was "treatment determined" as mskity says. You are the only one who can make the decision whether to push through or not, but you need to consider that you cannot treat again with either Vic or inc again if you stop. None of your side effects are life threatening at this time, but you do have a responsibility to eat, drink water, rest, and get fresh air/walk to help your body and your mind cope with treatment.
Advocate1955
Helpful - 0
766573 tn?1365166466
You should not feel stupid. It does say that on the product insert.
Section 5.4 was added to the Warnings & Precautions section as part of the post marketing data and to put in context it is prefaced by:

    Patients with a history of a hypersensitivity reaction to boceprevir

It also goes on to explain that "serious acute hypersensitivity" is "a rare but serious complication of exposure..."

Getting back to what to ask your doctor if it turns out you are unable to see a Derm maybe you could ask your doctor for some decent more efficacious meds to treat your skin irritation. I would come right out and ask for an Rx for a topical steroid more potent than the OTC kind and a maybe even one for an oral antihistamine.
Helpful - 0
317787 tn?1473358451
Glad to hear you are a little better. As Hawk and others said this is a roller coaster ride, you get rid of on side effect only to get another
When I panicked at my 13th week this forum was the best, they all provided support so that I could continue the tx.  I did and am now SVR

I wish you the very best, hang in there
Dee
Helpful - 0
4896357 tn?1360670904
sph0611, Yay!!!! Congratulations. That is fantastic.

Pooh, thanks for the great advice. I don't think I can afford another specialist but will consult with my gp.

Thanks to all for the advice and just the support. I think I will be OK. I needed to eat more. I thought this might be a good time to take off 10 pounds. It's not! I should be OK. Looking to be und at 8 weeks. (cross fingers) I am feeling much better now.
Helpful - 0
Avatar universal
Hi Carl,
I hope you're feeling better. I just want you to know that last night I did my last shot of peg and I will finish the ribavirin on Thursday. This is significant in many ways. I am astounded that I made it all the way. I was completely beaten up by the incivek and looked for someone anyone to tell me to stop. But no one did and I kept going. The peg and RIBA are not a picnic either but doable. What I'm trying to say is if I can do it I truly think anyone can. The only person that knew about my situation is my husband. He couldn't have been more supportive and I'm so grateful. But coming to this forum really gave me the push and encouragement that was needed. I figured if all these people could do it and live to tell about it then I will take it one week at a time. Remember there is an end date to this tx though I know it seems so far away. As was said above your numbers look good and your almost there. Get with a dermatologist for that rash and keep up the fight!  
Helpful - 0
317787 tn?1473358451
Hang in there, Pooh gave you great advice, info.
I was so weak from low HGB I could not catch my breath. I would call the doctor and they would tell me to lay down.  they said my job was to go through tx and let everything else go until I finished.  There were days my ankles would go numb and it would work its way up my legs till I thought I would fall over.
I think many felt that while they were treating they could do other things.  My hat is off to anyone who could manage anything other than eating the fact required for Incivek and drinking lots of water.
I think I beat myself up much more than I should have.

I wish you the very best, be kind to yourself.
Dee
Helpful - 0
4896357 tn?1360670904
Thanks again for the help. I feel stupid and weak now. :( I'm a strong man and this stuff has beaten me down. Let's let it go now please. Two things I need to do is drink even more water and, especially, eat more. I have found that eating more helps a lot. I tried to find the link about the fatal allergic skin rash. I can't find it but here is one quote: Skin and Subcutaneous Tissue Disorders: angioedema, urticaria [see Warnings and Precautions (5.4)]; drug rash with eosinophilia and systemic symptoms (DRESS) syndrome, exfoliative rash, exfoliative dermatitis, Stevens-Johnson syndrome, toxic skin eruption, toxicoderma.

That is from: http://www.fda.gov/ForConsumers/ByAudience/ForPatientAdvocates/ucm326690.htm
Helpful - 0
Avatar universal
Hey Carl,
the tiredness/fatigue is a given with these drugs for most people. Maybe lower your expectations of what you will/will not do while on tx. Reassess your daily routine and adjust it so that your body can cope. This is pretty rough, heavy duty drugs we are putting into our bodies so we need to look after ourselves as the first priority.
I cannot work at all now due to the fatigue and its actually a big relief now that I know I don't have to struggle anymore to go to work and try to function as normal and try to think straight.
You need to rest when your body is tired.
I can't comment on the rash though I had some funny hive like rash last weekend that came and went.
All the best and am thinking positive thoughts for you.
Helpful - 0
3159077 tn?1356031131
I was weak and out of breath and had a pretty serious rash on Incivek. I thought my fatigue was due to mainly to anemia and low Hgb., but maybe it was just the treatment overall, because your blood work looks really good. I can totally relate to Pooh's description of her fatigue and letting go mentally of what I wasn't "accomplishing." That was the best description I've read on what it was like.

You'll get through this but you may have to adjust your energy expectations a bit. Frustration was draining and counterproductive for me.  Reid
Helpful - 0
Avatar universal
Carl-your Dr is completely wrong about the rash being fatal while on Vic.  It is probably the Riba causing it and you just need to get it under control and moisturize like crazy.  I had a few breakouts on my shoulder but that was it.  

And if you are DET @ 8 wks why would you stop tx?  That would just confirm the 48 wk plan.  

As for energy....try and do something, anything, go for a walk.  Plus it will take your mind off of tx.  This is a mental game also as well as physical.

Jules
Helpful - 0
4670047 tn?1375730401
Wow now that just sums it up. Pooh that was great. I've been thinking about this since yesterday. I am treatment determined. Even if something were to go wrong and maybe I have to treat longer. Well lets just hope that doesn't happen. Ha!!  I'm going to put my dog hair stories in my journal..
Good luck Carl.
Helpful - 0
Avatar universal
hi so sorry you having it rough like alot have said you reached the stumbling block my hubby hit it wk 7 and wk 8 but it does get easier promise! please dont give up also hubby got the riba rash but is controlled with hydrcortisone cream. I know how hard it is when you short of breath and fatigued all the time but just take a deep breathe slow down and just do what you can do and sod the rest! even though it seems forever it isnt and you will get through it. We are all here to support you anyway we can. Best wishes stay strong Jules
Helpful - 0
Avatar universal
I agree there is no serious rash with Victrelis, all these meds come with some side effects, it is what it is........
Helpful - 0
1815939 tn?1377991799
I agree with what Hrsepwrguy said about the rash. You can get a rash from Riba but it is the Incivek rash that carries the major warnings. The people on the forum with major rashes were on Incivek. The people who had to stop treatment due to rash were on Incivek.

Besides seeing your doctor as planned, it might be wise and advisable to see a Dermatologist about your rash and have him/her manage your rash. It sounds like your own treating doctor does not know much about the rashes and their treatment. The Dermatologist can prescribe appropriate treatment for the rash, which will probably include prescription antihistamines such as Hydroxizine and prescription topical corticosteroid ointments or creams such as fluocinonide, clobetesol, or some other prescription topical steroid.

As far as no energy, Carl, I am not sure you can do anything about that except slow down, lower your expectations of what you will be able to do and what you will get done, and just go with the flow. There is no point in fighting it. Fighting it will only frustrate you. Wondering what you can do about it will frustrate you. None of us felt good. Most of us did not feel good at all. Sometimes one just has to accept that this is the way it is going to be sometimes, most of the time, or once in a while, for the period one is on treatment. You are not anemic so it is the drugs that are wiping you out. That is to be expected. Granted, the degree of exhaustion varies among individuals, but these meds wipe a person out. I admire those who can keep running or exercising. I sure as heck could not. Some days I could barely make it around the house. I was hanging onto the wall so I would not lose my balance. I was so dizzy and weak half the time that I was sure I would pass out. Many times I had to sit down IMMEDIATELY because I broke out into a cold sweat and felt like I was about to faint. Walking from room to room seemed like a major chore, especially when my legs and feet would not cooperate and go where I wanted them to go. I had to actually think about placing one foot in front of the other. It was not automatic like it normally is when walking. I went through a period where my legs felt like I had lead boots on and I was walking through 2 feet of mud. Any little exertion wore me out. It took me 2 weeks to clean the bathroom last May (major cleaning). I was almost 3/4 finished with Tx then. I could only clean a few minutes and then I had to rest. Then another few minutes and I had to rest. It took me days to wash the floor. My knee collapsed when I tried to get up on the toilet seat to reach the high cabinets. I did not get those high cabinets cleaned until last fall, after I was off treatment for awhile. I was usually too tired to even think about cooking so I ate a lot of easy stuff to make like sandwiches, brats, yogurt, cheese, eggs, frozen peas, garbonzo beans, pickled beets, herbed olives, and fruit. Weird diet, but I had no appetite and everything tasted like cardboard anyway, LOL (that is why the pickled beets and olives helped). I relay my experiences only to give you an idea of what many/most of us have gone through in varying degrees. I would venture to say that very, very few of us felt good. And many/most of us felt like crap, or worse. One just has to keep his/her eye on the prize, SVR.

When I first started treatment I went along feeling like crap for days and then weeks, but it was frustrating. I was getting nothing done. It annoyed me that I not only could not get anything done. I kept thinking that I need to get organized; I need to feel better; I need to be able to concentrate; I need to get something done. But then I realized that was not going to happen and all I was doing was frustrating myself. So I switched my expectations. I made no plans for evenings or days except for doctor appointments and a concert once a month (season tickets). I accepted no guests and did not even answer the door or the phone. The dust and cat hair built up as did the 2 foot high pile of mail. Sometimes the dishes waited a week to get washed. I let all of my projects wait, both physical and mental projects. I played solitaire and hearts on the computer and did jigsaw puzzles. I read the forum. That was the limit of my concentration abilities, LOL. That was my life for months.

Now, a person could say I got nothing done, which in some ways is correct. However, I don't look at it that way. I did not get many visible activities accomplished. However, I came to realize, early on, that my main goal while on treatment was to get through treatment and attain SVR. That was primary and it was a full time job. Everything else was secondary. And so I accomplished the most important thing that I could have hoped to accomplish, and that was getting through 48 weeks of treatment with no dose reductions, missing no doses, taking the meds on time (with 20 grams of fat while on Incivek), finishing treatment, and attaining SVR.

48 weeks of feeling like crap was worth it and I now have my life and my future back, and that is no small accomplishment.
Helpful - 0
766573 tn?1365166466
Sorry all this is happening. In your post you indicate the small areas you are starting to get a rash is not bad and then later the doctor would probably agree it is not bad. Given it is Friday/Easter Weekend and the doctor did not see your rash himself or refer you elsewhere (like a nearby doc-in-a-box or clinic) then what else could he say but stop taking the meds. I doubt very many people are going to suggest not following your doctor's orders.

As far as Victrelis it does say:
Skin and Subcutaneous Tissue Disorders: angioedema, urticaria [see Warnings and Precautions (5.4)]; drug rash with eosinophilia and systemic symptoms (DRESS) syndrome, exfoliative rash, exfoliative dermatitis, Stevens-Johnson syndrome, toxic skin eruption, toxicoderma...

Either way these meds come with their share of skin irritation so having it looked at might not be a bad thing. I'm guessing it is the numbing effect in the triple anti-biotic ointment w/topical anesthetic that is providing relief and maybe the moisturizing effect that might be providing relief. In the mean time maybe you could try an OTC topical steroid cream until you have your rash looked at.

As others point out the images you mention in your post sound like the rash associated with Triple on Incivek which can indeed be lethal.
__________________

To me the counts on your CBC seem good.
What was your baseline Hgb?  

I read elsewhere on here that to some extent a little anemia means shows the drugs are working. I mean if you were still in the 14 range at week 24 or so I would wonder. This is just what I think no links or studies.

The Victrelis insert says:
The addition of VICTRELIS to peginterferon alfa and ribavirin is associated with an additional decrease in hemoglobin concentrations. Complete blood counts should be obtained pretreatment, and at Treatment Weeks 4, 8, and 12, and should be monitored closely at other time points, as clinically appropriate. If hemoglobin is less than 10 g per dL

If you stick with treatment now might be a good time to ask your doctor how he handles Anemia and whether he goes by Riba dose reduction, Procrit or a combination of each.

Anyway, everything you are saying sounds normal so far. Being self employed with no fall back in place can be tricky since I think we all appreciate that even just a slight drop in energy can be detrimental when 100% of the burden of livelihood is on your shoulders - especially without knowing anything else about your overall health and life. I think you are right and this could be a transition since these are heavy duty drugs.

Maybe when you get a handle on this and calm down a little your perspective might change. Sorry if that sounds patronizing since I truly do not mean it that way.  I am in no way discounting how you feel since I went through this the first time I treated, I felt like I was walking in quick sand when my Hgb dropped to 13. My Hgb dropped to 8.1 when I treated the second time but I was prepared and willing to do anything so maybe that made a difference.

Adjusting to having less energy is possible. It takes more time to do things, like going up stairs but if you have no other things wrong with you then it is more than possible. It does take getting used to but many, many people on here have done it more than once and you can too.

You might be offered the prospect of stopping treatment a lot. That does not necessarily mean your health is in danger. Obviously it depends on the circumstances but in the beginning the few times I was told I could stop treatment it was my doctor's way of saying we have done all we can to address your side effects and like Can-do said, "It's called treatment for a reason."

Hang in there & let us know what happens :)  :)

http://www.merck.com/product/usa/pi_circulars/v/victrelis/victrelis_pi.pdf
Helpful - 0
1747881 tn?1546175878
"I did find a warning about a potential fatal severe allergic skin rash with Victrelis"

Could you please post the link to that, I have been following triple treatment since it was approved by the FDA and that would be the first I heard of it
Helpful - 0
Avatar universal
I think it will get better...and then worse...and better again. You know, it is a roller coaster, but you are doing fine. Remember to drink lots of water.
hang in there, you will do this.
Helpful - 0
4896357 tn?1360670904
I am dizzy and light-headed too. I'm self employed and will only work today and tomorrow. I hope I can make it. Work is not hard but gets stressful. So I might just be going through a normal adjusting period? I did find a warning about a potential fatal severe allergic skin rash with Victrelis. It was on an older Merck post. Thanks for the replies so far.
Helpful - 0
Avatar universal
It's called treatment for a reason...
Helpful - 0
4652753 tn?1364581946
Hey, Treatment is hard and during 8th week I huffed and puffed like the little engine who could, but I couldn't.  Got dizzy when I bent down and stood up and held on to friends as I walked a long.  Horrible feeling and like purplecat had to tell my boss I was out of steam.  The next week I was feeling better.  I think what we continue to learn is that each day may bring something new or something old may rear it's ugly head again.   I am pulling for you that your 8 week results will be UND.  I don't know about VIC but I can tell you incivik is no picnic and everyday it forces me to change my plan of action to just try to keep up.  I feel like I am in a constant battle but believe it or not there are days I feel like I am winning.  I am on the countdown of giving up the big purple (April 11 last dose) and then will war strategize against the last two.  Hang in there, I believe you can and will continue on.
Helpful - 0
180992 tn?1383374057
.Your counts are good, relax.  You have hit the 8 week weakness stage.  I remember telling my employee at week 8 that I felt I didn't have the strength to standup.  You will adjust. I got terrible Riba rash and used over the counter cortizone until week 30  At that point I was sent to dematologist that gave me 3 stronger cortizone for face, head and body.  Got petechiae spot on my legs from low platelets. Wore compression hose to control that.  These meds make you feel weak, if you are UND at week 8, you can keep going. Hang in there, treatment is hard.
Helpful - 0
1747881 tn?1546175878
The FDA has warned those taking the hepatitis C drug Incivek (telaprevir) that it has received reports of a serious skin rash from the medication, which has been linked to several deaths.

The deaths occurred in people taking Incivek combination treatment, an antiviral treatment that includes the drug Incivek in combination with the drugs peginterferon alfa and ribavirin.

The FDA says some people had developed a serious skin rash while on the combination drug treatment, yet they continued to take the three medications despite the rash worsening and leading to life-threatening symptoms.

The advice from the FDA is that those receiving Incivek combination treatment should be aware of the potential for developing a rash as a side effect of drug treatment. It recommends that anyone who gets a serious skin reaction after taking these drugs stop them immediately and seek emergency medical care.

A boxed warning about these potential problems will be added to the Incivek drug label, instructing people receiving Incivek combination treatment to immediately discontinue all three medications if they develop a rash.

Vertex Pharmaceuticals, makers of Incivek, said that less than 1% of people who received Incivek combination treatment had a serious skin reaction to it when the treatment was tested in a late-stage clinical trial. These patients required hospitalization for the skin reaction, yet all recovered from it.

Further information can be found at www.fda.gov

http://hepatitiscnews.com/blog/2012/12/20/fda-gives-hepatitis-c-drug-incivek-black-box-warning-following-fatal-skin-reactions/
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