Author Topic: Horrible, horrible itching. Possible CBS?  (Read 2720 times)

purplegirl

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Horrible, horrible itching. Possible CBS?
« on: February 17, 2014, 04:48:11 AM »
Hey everyone

Just wondering if anyone has any advice for me. I have been having the most awful itching burning skin for the past month. It is at its worst after I shower and at night when I try to sleep.

Lately it has become unbearable, so am seeing my rheumatologist soon.

I have tried special cleansers, moisturisers, antihystamines etc but nothing helps.

The doctor wanted me to stop the plasmoquine for 10 days to see if the itching persisted, but I only stopped for 5 because on the 5th day my joints became stiff and painful.

I dont know whether it is the meds causing the itching or whether there is liver involvement. I'm really scared that I may have Chronic Billary Cirrhosis, does any one have experience with this?

I am also afraid that if it is the meds that I will have to change to methotrexate which i dread.

Im at a total loss as to what to do :(

katie1111

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Re: Horrible, horrible itching. Possible CBS?
« Reply #1 on: February 17, 2014, 06:34:58 AM »
I have Primary Biliary Cirrhosis and have had it since 1992.  Itching is one of the main symptoms, in fact, right now they are recruiting for a new study on itching in PBC.   It is difficult to treat and we use many different products.  The basic treatment is to keep the skin moist by applying a moisturizer right after showering - Aveeno has an anti-itch moisturizer that many use.  Sarno is stronger but has an unpleasant odor.  Also, bathe in warm, not hot water and pat the skin dry - don't rub. If the area is small, an ice bag may help. (some recommend using a bag a frozen peas as it can be molded to the shape of the area.  I, personally, have found that using an oatmeal based soap works for me -  St. Ive's has an shea butter and oatmeal liquid soap that is quite good.  As for medications, most start with Benedryl at night, since it can cause drowsiness. Prescription drugs include Rifampicin, Natrexone, Gabapentin and Questran and Atarax.  The list is long because there is no one treatment that works for all.  Generally it is a matter of experimenting to see what works for you.

As for the diagnosis, usually one of the first symptoms is an elevated Alkaline Phosphatase.  Fatigue is also a major component.

Please feel free to contact me if you have more questions.

purplegirl

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Re: Horrible, horrible itching. Possible CBS?
« Reply #2 on: February 17, 2014, 07:11:23 AM »
Thank you so much for your helpful and informative reply. I will try the patting dry and using moisturiser immediately after my shower tonight.

Are there any other symptoms of CBS that I could look out for?

Joe S.

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Re: Horrible, horrible itching. Possible CBS?
« Reply #3 on: February 17, 2014, 07:16:49 AM »
I know this sounds stupid, but I was wondering how a TV network could cause itching.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
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andreamarie

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Re: Horrible, horrible itching. Possible CBS?
« Reply #4 on: February 17, 2014, 07:27:17 AM »
I have itching that is not PBC. I posted yesterday: see Vaginal neuropathic itching.

You might have neuropathic itching; I have it on my back from a bad sunburn as a child. That itching is not related to SS.

I've tried everything for the vaginal itch and the thing that worked best for me is doxepin, an old tricyclic antidepressant. It comes in a cream if you don't want to take pills but the cream would cost you a fortune if it's your whole body. I also take Atarax, aka as hydroxyzine; another really old pill that costs pennies.

For my back I use a cortisone cream and AmLactin aka Lachidrin.

Do you have a good derm? Mine knew right away that my itch was neuropathic.

sassygal

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Re: Horrible, horrible itching. Possible CBS?
« Reply #5 on: February 17, 2014, 08:39:54 AM »
I do not have PBC, but go crazy from the itching. What works for me after a shower:

 While still in the shower, using my hands I wipe off excess drops of water. Then I apply baby oil with aloe all over my body. By the time I am done that, most of my body is dry. I then take a towel and pat dry.

Once out of the shower, I apply my regular moisturizing lotion. This takes away the post bath/shower itching, and lasts 10 - 12 hrs. This of course would help with the dry skin, not so much neuropathic itching or PBC. 

For dryness, drink lots of fluid and take omega 3's.

sassygal

katie1111

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Re: Horrible, horrible itching. Possible CBS?
« Reply #6 on: February 17, 2014, 08:08:26 PM »
There is a wonderful PBC website - PBCers.org which has loads of information.  The main symptoms are fatigue, itching, dry mouth, joint pain, osteoporosis, but like all autoimmune diseses, you can add etc., etc.  There is a specific blood test, but it is not usually drawn unless you have an elevated alk. phos.  Though the fatigue and itching bring most to the doctor, mine actually started with joint pain and osteoporosis.  We are all different.

Belsey1

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Re: Horrible, horrible itching. Possible CBS?
« Reply #7 on: February 17, 2014, 10:36:05 PM »
I use Sarna, an anti-itch lotion.  It does have a fairly strong smell, but I do not think it smells that bad...just a little strong smelling.  But it is medicated, camphor and menthol, so it is going to smell.

purplegirl

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Re: Horrible, horrible itching. Possible CBS?
« Reply #8 on: February 17, 2014, 11:03:11 PM »
Thank you everyone :)

Joe, I meant pbc not cbs! haha oh dear what a mistake, must be the stress getting to me!


Joe S.

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Re: Horrible, horrible itching. Possible CBS?
« Reply #9 on: February 18, 2014, 05:21:34 AM »
Sorry, I am a bit of a tease, and sometimes it is just the fog.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, D3, ALA, ALC, Aleve, cistanche
Reiki, reflexology, meditation, electro-herbalism

purplegirl

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Re: Horrible, horrible itching. Possible CBS?
« Reply #10 on: February 19, 2014, 02:48:36 AM »
So i went to the rheumatologist yesterday and he said it cant be my liver causing this itching as I would be yellow. He didnt even do any tests. Im sure that I have read that you dont neccessarily have to be yellow?

Anyway he thinks its the plasmaquine so I have to stop it for a week and then get back to him.I also got a depo medrol/cortisone shot to stop the itching and an antihistamine.

So far no improvement in the itching whatsoever and the last time I have taken plasmoquine was friday.

Oh well guess I will have to wait and see.

Are there any alternatives to plasmaquine?

lolo1979

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Re: Horrible, horrible itching. Possible CBS?
« Reply #11 on: February 19, 2014, 06:50:57 PM »
That seems totally irresponsible of your rheumy. Your liver can definitely be affected without you being jaundiced yet. From my understanding, jaundice tends to happen later in the process, when the liver has been inflamed for a while and / or it is an acute situation.

At a minimum, he should've at least offered to check your basic liver function tests.  Those are pretty standard and comparatively inexpensive lab tests.

Get those LFTs done!!! Call him and ask him to do the tests, even if its just to placate you.

And, even if they're normal now , be sure to keep getting them checked periodically.

Don't take no for an answer.