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Pruritus at its max

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
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Avatar universal
When I was on the triple treatment I gave my gastro doctor until the end of the day to get me some relief from the itching or I was quitting the treatment. He got me into a dermatologist that day and to my amazement the stuff stopped the itching instantly. When you spray it I would go into the bathroom cover your mouth hold your breath and then leave the room right after you spray it on. Its a corticosteroid so I doubt that it's good to take to much of it into your lungs. Stuff works great. From their website: "Relief of the inflammatory and pruritic manifestations."
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Avatar universal
Thank you hoping and I have already left a message with my docs nurse asking to try Kenalog.
                                     Glen
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Avatar universal
Thanks Dee
I am trying everything-always end up going back to cholestyramine.
Just saw a suggestion from hoping4cure about Kenalog.I am now looking into that.It is so frustrating dealing with my insurance company and Gilead.I am running out of fight which is what they want.They want to wear you out so you eventually quit and throw in the towel.Well they have the wrong customer.
                             Glen
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Avatar universal
Try having your doctor prescribe Kenalog spray which is a triamcinolone acetonide  aerosol spray. That will give you instant results. I used it while on the triple therapy a few years back and it was the only thing that worked, a real life saver but you can't stay on it forever
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317787 tn?1473358451
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.
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317787 tn?1473358451
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.
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Avatar universal
Thanks His way
I am trying anything and everything-things have gotten desperate.It is so painful.         Glen
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200956 tn?1425591539
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.
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Avatar universal
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
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Avatar universal
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
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Avatar universal
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
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1747881 tn?1546175878
"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
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Avatar universal
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
Helpful - 0
1747881 tn?1546175878

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
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Avatar universal
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.
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Avatar universal
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
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Avatar universal
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
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317787 tn?1473358451
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)


Helpful - 0
1815939 tn?1377991799
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.
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Avatar universal
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
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Avatar universal
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.
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Avatar universal
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.
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1747881 tn?1546175878
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
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Avatar universal
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.
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