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

[hrsepwrguy]

Have you tried atarax ?

http://www.drugs.com/atarax.html

[Livelife777]

Glen.  So sorry that this itching seems relentless.  Your Dr is the only person that can prescribe meds, but these are a few natural remedy's that may help.
Oatmeal scrub
Coconut oil
Oregano oil
Black strap molasses
Apple cider vinegar
Do know how uncomfortable it is to be continually itching.  Have also heard that some pain relievers can help, but your Dr needs to OK it.
Wish I had better choices.
.....Kim

[keepingOnkeepingOn]

Diet is key here. I can only speak from experience and give suggestions as I am not a doctor. If you haven't already, eliminate salt and salted foods from your diet. This should bring some relief by eliminating it. Seek out a knowledgeable dietician to help you. Your Insurance company or your doctor may recommend one. Medical teams anymore have a dietician on staff.
Stage 4 here and eating the foods compatible with my liver has helped reduce liver disease symptoms greatly.
I drink lots of coconut milk to help me but everyone is different.
If I eat eggs I'll have jaundice, itching and other serious symptoms. Other foods bother me. Find out what foods you can and cannot eat. Results from altering food intake will happen over a short time.

Shower in warm water rather than hot and use soap for sensitive skin.
You need to get on Harvoni with riba if possible because of past relapses. Call your Insurance company and tell them your story. Advocate heavily for yourself. Get the person on the phone to really hear you just like a sibling would. Tell them your story and that you need it now. Fight. Don't ever give up. Call the doc and tell him to help you get TX. Tell them there is no time left. You need tx now.

The skin seems to act like it's trying to rid the body of toxins that the liver can no longer do. Drink lots of water and keep clean. Good grooming helps your mood too.

[GP7852]

Thank you all for your responses-I will try to find the atarax that horsepower guy suggested.I constantly call my insurance company only to receive the letters of denial.I cant even open them anymore when I see them in the mail,I just want to scream.I do drink water all day and eat right but it's not enough.The itching never stops and you lose your mind.All I have is the cholestyramine but that gets me in trouble,especially at work.When it hits your bowels you can't control what happens and it has caused embarrassment that makes you want to die.I need to make something happen before this long weekend arrives,I would sell my soul for some relief.Happy Thanksgiving    Glen

[HealingHearts]

Very good advice as I am on a plant based diet and improved my hep c symptoms greatly. I have cut back on salt, sugars, etc. and am able to function as I wait to get the Harvoni treatment.

The liver is the only organ that can regenerate. But as long as the virus is attacking our body, it cannot do it's 500+ functions at 100%. Therefore, we need to "lighten the load" and watch what we are putting in our bodies.

[hrsepwrguy]

Hey Glen, atarax is RX only, so you will have to talk to your doc, many of us used during treatment with incivek which had some super intense itching as a side effect. Hope you can get some relief.

Have a great day

[AugustineMama]

Glen I got to the point it was like bee stings. Nothing I put on it worked. I ended up with Atarax 3-4 times a day and Benadryl at night. It wore me out and left me with scars.

[AWorriedMom]

Benadryl helped me the most and it is very liver friendly and over the counter. The only bad thing is that it can leave you feeling hung over in the AM. For me, that was better than the constant itch.

[GP7852]

I just picked up the Benadryl,really praying that it helps.The cholestyramine is so dangerous for me.When it hits you cant control it and wherever you are everything is coming out,very very embarrassing at work.I was pleading with Gilead today and a nice lady was going to contact my insurance company (Cigna) and try and move things along on their end or on hers.It is so frustrating for me to have them take all that money out of my check bi weekly but when I need them they sweep me under the rug and tell me to die.This disease is like a big,scary tree that keeps growing evil branches like horrible leg cramps and the nose bleeds and malfunctioning thyroid.I guess the liver is the quarterback of the body.                       Glen

[pooh55811]

If the Benadryl does not give you relief, then I would get a prescription for Atarax (Hydroxyzine).

Your PCP or Hepatologist should order it for you but, if not, then you may need to go to a Dermatologist to get it. (My original treating doctors were useless and did not want to treat the rash so I finally went to the Dermatologist.)

Benadryl did absolutely nothing for my rash and itching. Atarax worked, but you need a high enough dose to make it work. I started on 20 mg at night but that barely made a dent. The Atarax was increased to 50mg every 6 hours and that gave me relief.

I had the rash for months before I finally got the right dose and some relief. I would never put up with that again, ever. One has to be assertive and get the appropriate treatment and relief.

Best of luck.

[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)

[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

[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

[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.

[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

[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]

"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."


I would like to point out that patra's case is not typical as I posted above the average HGB loss during sovaldi trials without inf was only ~2 g/dL the same as riba monotherapy I don't think the ledisprevir has any effect on anemia, I would take the riba

Have a great day

[GP7852]

My doc has ordered the ribavirin to go with the Harvoni if I ever get the harvoni.I am working both sides of the fence between Gilead and my insurance company.Gilead has me jumping through hoops like a circus dog.After finally getting them everything they wanted including the 2 letters of denial from my insurance company they are now telling me they need a 3rd letterof denial to an appeal prior authorization.The days are so long with this disease and these companies just make them even longer with all the frustration they put you through.Meanwhile my insurance company does remember to take their hefty payments out of my paycheck every 2 weeks.                            Glen

[Mmorgan856]

hi Glen, I'm not sure this experience with a friend recently would help you, but hoping.  Like you, she broke out out with horrible rash, intense itching from neck to toes. She's untreated so far.  I took her to E.R. they gave her EPI. IV an steroids.  Then cream.  Slowly, she got relief.  I'm not sure sharing this would help.. I'm hoping an certainly praying for you to have strength to get through this, get some relief, an start your treatment soon.  Take care. Mary

[GP7852]

Mary
It is important to me to understand what you stated.In laymans terms,is this something I can purchase and what is the exact names of these.I can only get some relief from the cholestyramine but the stuff is literally destroying my bowel system.I can not lead a normal life anymore because of this and it can eventually cost me my job which would include my medical benefits.
                                   Thank you     Glen

[His way]

My whole body was a mess with horrible rash during triple treatment. The only thing that worked for me was Clobetasol cream and ointment (You can google but I think Clobetsol is a steroid.) I also took a round of oral prednisone which was contrary to Incivek. It only worked if I kept myself covered in it and it made my hair fall out. Nothing over the counter worked at all and in fact some o/c lotions made it worse.
I empathize with your suffering, skin is your largest organ and when it gets sick it is hell! Hope you find some relief.

[GP7852]

Thanks His way
I am trying anything and everything-things have gotten desperate.It is so painful.         Glen

[Dee1956]

Hi I was searching for something and found this information. I just cut and pasted the pertinent part along with the medications used. Some have already been suggested.  When I had severe itching from the tx one thing that helped was applying frozen washcloths to the area itching.  The ice seemed to numb the skin for a bit.

Other medicines are sometimes used to ease itch if the above are not helpful. For example, rifampicin. It is not clear how these work, but they do help in some people. Ursodeoxycholic acid (UDCA, or urso) - see below - may also relieve itch. Plasmapheresis, which is like a plasma exchange, has been used in some cases of persistent, severe itch. This may need to be repeated.

Dry skin can make itch worse, so using liberal amounts of moisturiser is useful if you have dry skin. It can help to keep the moisturizer cool.

[Dee1956]

Hi, have you posted your question on the cirrhosis forum? I tried to see if you had, could not find anything.

http://www.medhelp.org/forums/Cirrhosis-of-the-Liver/show/1390

Also, are you seeing a hepatologist?  Sorry if you have already mentioned, I remember Hector telling someone that only their doctor could decide what would help with the itching.

I was where you are now and remember how miserable I was.