Pruritus at its max

[GP7852]

How do you deal with pruritus.Mine has reached the pinnacle where I can't sleep anymore,my skin is so sore,black and blue and torn up from the rubbing and scratching.I am going through a container of Sarna a day.I am so bitter at my insurance company (Cigna) as they continue to deny me funding for Harvoni yet they are happy to continue to dock my paycheck for their payments.I feel like such a fool.Meanwhile it is like I have a million bugs living right under the surface of my skin trying to eat their way out,the worst nightmare of my life.I am a lifetime non responder who finally got negative on sovaldi-olysio only to relapse immediately.At this point I don't even care about my liver anymore,my #1 priority is to just stop the itching and get the soreness to heal.I am trying the Gilead assistance program since I meet all their criteria but it is slow and the torture is getting to my nervous system.Do any of you stage 4 cirhotics have any helpful info,even the cholestyramine isn't helping anymore.
                                                          Glen

[patra_]

GP: hrsepwrguy is correct.  I am on Sol/Riba now (5 more days!) and was told that anemia might be a side from the Riba.  

I have experienced that - went from 14.0 down to 8.8, then up to 9.0 then to 9.7 and last 2 Labs , 9.5.

Please note that the ONLY side I am having from that is the fatigue.  Pretty extreme while I was at 8.8, but I am retired and could rest all the time, if necessary.  Since that was my only side, and I was highly motivated not to lower the Riba, Dr kept dose the same and monitored me regularly, as the HMG came up within 3 weeks, continued same treatment.

There is also Procrit which can help with the anemia, or they can reduce the size of dose, so,even IF you have the anemia, there are some choices IF you are not experiencing a bunch of different sides from the Riba.  Also. there are many people on Riba, who do not drop, or who only drop a few points, but not enough to experience anemia.  I believe a liver friendly diet, and exercise, when you are able, helps with that.

Good Luck.  Pat

[hrsepwrguy]

Anemia observed with SOF+RBV and SOF+PEG/RBV treatment

Hemoglobin reductions with SOF+RBV similar to historical data with RBV monotherapy 1,2

RBV monotherapy results in ~2 g/dL reduction

Interferon contributes to anemia through bone marrow suppression

PEG/RBV results in ~3.5 g/dL reduction

.http://www.fda.gov/downloads/advisorycommittees/committeesmeetingmaterials/drugs/antiviraldrugsadvisorycommittee/ucm375286.pdf

[AWorriedMom]

No one can promise that you won't get anemic. However, my experience and the experience of many others, is that ribavirin needs interferon to make the chances of anemia likely. Without interferon, I would not be afraid of the ribavirin. Being a many time treater, with cirrhosis, I would want to use ribavirin. Personally, I failed treatment (null responder) many times and became critically anemic the last time (hemoglobin 7). Then I did the Abbvie trial with ribavirin and only dropped a point and got an SVR. Perhaps your doc will let you start with riba. You can always drop that drug and continue Harvoni if your hemoglobin begins to fall. Or, you might want to consider the AbbVie drugs which should be approved around Dec 17, give or take a week. Also, the AbbVie drugs will be available immediately after approval and hopefully will be easier to get approved by insurance as AbbVie is working hard with the payers. Also the AbbVie trials were much larger and there was one that was specific to cirrhotics. Either way, I wish you luck.

[GP7852]

Hi
You mentioned that I should get ribavirin if I can get the Harvoni.Why would the ribo be helpful?I thought the Harvoni takes the place of the ribo.I have been on a combo with ribo a few times and always get anemic which is why my doc does not want me to use the ribo.But I am tired of taking these drugs which have all failed me since the 80s and I want this over with.If the ribo gives me a better chance of clearing and STAYING clear then I must tell him I want it if I get the Harvoni and I will have to go to the cancer clinic once a week when the anemia arrives and get the injections to raise my platelets.I want to mount as big a fight as I can this time cause it is probably my last chance if I do get it.   Glen

[GP7852]

Thank you-ive been going through the saran like crazy-I cover myself with it and the stuff isn't cheap but it gives some temporary relief.I am on the phone all afternoon with my doctors office,the pharmacy and gillead and what makes it all the more frustrating is the incompetence of the 1st 2 I mentioned.I can't even get these people to correctly send a fax and get the proper information to Gilead.   Thanks  Glen

[Dee1956]

Hi I remember how awful the itching was during tx.  I was searching and found people talking about something called Welchol and Urso  both prescriptions.
I remember at one point a member on here talking about Gold Bond lotion being the only thing that helped her.

Another person mentioned that  grapefruit juice could help relieve itching. Check with the doctor or pharmacist first though, because sometimes it will interfere with the absorption of other medications.

Any of the over-the-counter lotions and powders that have camphor and menthol, as active ingredients (1/2 or 1 %) like Sarna or Gold Bond or any of their generics.

Dandruff shampoos with pine tar or coal tar (like T Gel) are good to use as shower gels, but they are very slippery, so put a towel on the shower floor to stand on and a bathmat or towel to get out and dry off on.

Over the counter oral diphenhydramine (Benedryl) seems to help some people. Prescription creams and lotions (Steroids like Elocon, Locoid, or Triamcinolone)

Maximum strength over the counter anti itch creams seem to work just as well. (diphenhydramines like Benadryl and hydrocortizones like Cortaid)