Re: Digest Number 3463

[Guest guest]

From reading and talking to neighbors, I gather that while shingles has/have a typical set of symptoms, they can vary widely. One neighbor says he was in too much pain to work well for a year -- and only his leg was affected. Another neighbor says she had no pain at all, only a few itchy blisters. Both were formally diagnosed by a lab test.

This subject may seem far off-topic, but it isn't: those of use who are immuno-suppressed are at much higher risk for shingles (and thrush) than the general population. Early diagnosis is extremely important for us.

Harper

In a message dated 1/11/2004 6:05:27 AM Pacific Standard Time, writes:

How could one have shingles and not know they had them? Not around my waist, but on my back?Harper , best wishes to you.Lyn from Ark.

[Guest guest]

anne, does Daryl's doctor know about the itching? Itching is an extremely meaningful symptom with liver disease. Please speak with his doctor right away.

Here's a summary of helpful treatments, based my own situation and others' experience:

First, make sure you're getting the best, most appropriate medication. For me, several doctors recommended Atarax. It's meant specifically for skin itchiness. Some people like Benadryl; my doctor said something directed just toward the skin would be more effective with fewer unnecessary side effects. It makes you sleepy, but I was very glad for that. My doctors said I could safely take quite a lot Atarax.

Keep away from heat and abrasion. Take cool showers; NEVER take a hot bath during the itchy stage. Dress lightly. Use your smoothest, lightest sheets. I found that silk nightgowns provided a comfortable buffer for my skin. Unisex nightshirts are available from Wintersilks.com; they also carry silk long underwear, which I think would help if you had to be dressed.

Some people like Sarnad (sp?) skin lotion. For me, it caused my skin to burn, and it hurt terribly even after I washed it off. Gold Bond medicated itch powder had the same effect.

I used Aveeno oatmeal shower gels and oils and powders. The effect was neutral. No gain, no harm except for my bank account. Plus you must be careful to slip on the oil in the tub.

I did not do well with regular bath talc or with baby talc. The only powder that helped was plain, ordinary kitchen cornstarch. Not baby talc with cornstarch; it felt as if it were made with gravel. Just plain cooking cornstarch. I found the cornstarch quite soothing if dusted on with a very gentle hand. And, the residue is easy to get rid of, doesn't clog up sheets and clothing or lungs.

Having a fan directed toward me helped sometimes, mostly because it "distracted" me, substituted for scratching. It would help for only a few minutes at a time, but that's something.

My secret weapon was a lambs wool duster with a long handle. Actually, I had two in different sizes. Brushing them lightly against my skin gaveme some sense of control.

Scratching can cause real problems when we aren't well to begin with. I have heard several times about people with AIH, immuno-suppressed and vulnerable, who developed serious infections from scratching. Again, increased itching is something Daryl's doctor needs to know about and to take seriously. Best wishes.

Harper

In a message dated 1/11/2004 6:05:27 AM Pacific Standard Time, writes:

Daryl is driving himself and me crazy with his incredibly itchy skin. I think it's part of this ESLD. Does anyone else suffer with this itch and what's safe to take for it??anne

[Guest guest]

, thanks for your post and information. You certainly lead an interesting life! You certainly lead an interesting life!

Harper

[Guest guest]

Dear Harper and everyone,

Thank you for your feedback about Daryl's itches. I appreciate each one of you. I posted the email at the beginning of a weekend here and thought I'd ask the 'experts' before his specialist as I couldn't contact him over this past weekend. I'm just waiting for the clock to tick over 9am and will call Daryl's dr and inform him. I'm not sure what the dr will do but I hope it's something because the poor man is scrathing himself raw. The LAST thing he needs is to get another infection!

anne

Re: [ ] Digest Number 3463

anne, does Daryl's doctor know about the itching? Itching is an extremely meaningful symptom with liver disease. Please speak with his doctor right away.

Here's a summary of helpful treatments, based my own situation and others' experience:

First, make sure you're getting the best, most appropriate medication. For me, several doctors recommended Atarax. It's meant specifically for skin itchiness. Some people like Benadryl; my doctor said something directed just toward the skin would be more effective with fewer unnecessary side effects. It makes you sleepy, but I was very glad for that. My doctors said I could safely take quite a lot Atarax.

Keep away from heat and abrasion. Take cool showers; NEVER take a hot bath during the itchy stage. Dress lightly. Use your smoothest, lightest sheets. I found that silk nightgowns provided a comfortable buffer for my skin. Unisex nightshirts are available from Wintersilks.com; they also carry silk long underwear, which I think would help if you had to be dressed.

Some people like Sarnad (sp?) skin lotion. For me, it caused my skin to burn, and it hurt terribly even after I washed it off. Gold Bond medicated itch powder had the same effect.

I used Aveeno oatmeal shower gels and oils and powders. The effect was neutral. No gain, no harm except for my bank account. Plus you must be careful to slip on the oil in the tub.

I did not do well with regular bath talc or with baby talc. The only powder that helped was plain, ordinary kitchen cornstarch. Not baby talc with cornstarch; it felt as if it were made with gravel. Just plain cooking cornstarch. I found the cornstarch quite soothing if dusted on with a very gentle hand. And, the residue is easy to get rid of, doesn't clog up sheets and clothing or lungs.

Having a fan directed toward me helped sometimes, mostly because it "distracted" me, substituted for scratching. It would help for only a few minutes at a time, but that's something.

My secret weapon was a lambs wool duster with a long handle. Actually, I had two in different sizes. Brushing them lightly against my skin gaveme some sense of control.

Scratching can cause real problems when we aren't well to begin with. I have heard several times about people with AIH, immuno-suppressed and vulnerable, who developed serious infections from scratching. Again, increased itching is something Daryl's doctor needs to know about and to take seriously. Best wishes.

Harper

In a message dated 1/11/2004 6:05:27 AM Pacific Standard Time, writes:

Daryl is driving himself and me crazy with his incredibly itchy skin. I think it's part of this ESLD. Does anyone else suffer with this itch and what's safe to take for it??anne

[Guest guest]

Just wanted you to know that I spoke with Daryl's Dr this morning and thanks Harper, it was the right thing to do. He prescribed Questran Lite (cholestyramine) and antihistamines. Apparantly the itch happens because the liver can no longer process (get rid of) bile salts. It's the bile salts that cause the itch! Here's what it says on the box -

"The active ingredient in Questran - Lite, instead of being absorbed, remains in the digestive tract where it combines with bile acids secreted by the liver. This results in a lowering of serum cholesterol and helps prevent diarrhoea due to bile salt malabsorbtion."

So it seems to have a tri-edged effect. Lowers cholesterol, stops 'liver itch' and helps with diarrhoea!

anne

Re: [ ] Digest Number 3463

anne, does Daryl's doctor know about the itching? Itching is an extremely meaningful symptom with liver disease. Please speak with his doctor right away.

Here's a summary of helpful treatments, based my own situation and others' experience:

First, make sure you're getting the best, most appropriate medication. For me, several doctors recommended Atarax. It's meant specifically for skin itchiness. Some people like Benadryl; my doctor said something directed just toward the skin would be more effective with fewer unnecessary side effects. It makes you sleepy, but I was very glad for that. My doctors said I could safely take quite a lot Atarax.

Keep away from heat and abrasion. Take cool showers; NEVER take a hot bath during the itchy stage. Dress lightly. Use your smoothest, lightest sheets. I found that silk nightgowns provided a comfortable buffer for my skin. Unisex nightshirts are available from Wintersilks.com; they also carry silk long underwear, which I think would help if you had to be dressed.

Some people like Sarnad (sp?) skin lotion. For me, it caused my skin to burn, and it hurt terribly even after I washed it off. Gold Bond medicated itch powder had the same effect.

I used Aveeno oatmeal shower gels and oils and powders. The effect was neutral. No gain, no harm except for my bank account. Plus you must be careful to slip on the oil in the tub.

I did not do well with regular bath talc or with baby talc. The only powder that helped was plain, ordinary kitchen cornstarch. Not baby talc with cornstarch; it felt as if it were made with gravel. Just plain cooking cornstarch. I found the cornstarch quite soothing if dusted on with a very gentle hand. And, the residue is easy to get rid of, doesn't clog up sheets and clothing or lungs.

Having a fan directed toward me helped sometimes, mostly because it "distracted" me, substituted for scratching. It would help for only a few minutes at a time, but that's something.

My secret weapon was a lambs wool duster with a long handle. Actually, I had two in different sizes. Brushing them lightly against my skin gaveme some sense of control.

Scratching can cause real problems when we aren't well to begin with. I have heard several times about people with AIH, immuno-suppressed and vulnerable, who developed serious infections from scratching. Again, increased itching is something Daryl's doctor needs to know about and to take seriously. Best wishes.

Harper

In a message dated 1/11/2004 6:05:27 AM Pacific Standard Time, writes:

Daryl is driving himself and me crazy with his incredibly itchy skin. I think it's part of this ESLD. Does anyone else suffer with this itch and what's safe to take for it??anne

[Guest guest]

Dear Harper,

I know you've been suffering for a while. It's just amazing to think of pain that pain meds can't stop. I am so glad your hubby stayed in town and followed through for you - it's almost impossible to really do a good job advocating for yourself when you are in extreme pain and probably not entirely coherent. It's hard to be a squeaky wheel but at the right moments, extremely effective.

Good luck on Wed. and hopefully someone else's pain will go away sooner so that you can get in earlier!

Amy

[Guest guest]

Does anyone know how long Tony was going to be gone? I know it had to be an exhausting trip but I start thinking of him more and more when we don't hear anything.

Amy

[Guest guest]

Dear Gaynel and Cliff,

Yes itching does come with liver disease. I know quite of few of the people hear have dealt with pretty severe bouts of it and will let you know their remedies. I believe there is an over the counter med that is pretty effective - does anyone remember what it is?

Good luck finding some relief!

Amy

[Guest guest]

Thanks Amy for the reply...

How are you doing these days? Hope this is a good year for you... And , to all of the group , wish you a good year and happiness.

Love Gaynel & Cliffxxxxs ooooos