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Hi Carol,

When Josh was first started on a sort of high child's dose of prednisone,

25mgs, he put on lots of weight pretty quickly. That was a good thing for

us, because when he was very sick he had lost his appetitie completely and

lost a lot of weight. You could see his little ribs sticking out and he

looked very frail. Well, actually, he was very frail. He needed to be hooked

up to an IV for feeding and rehydration. So, when he got his appetite back,

we were very grateful. He did need a new wardrobe, to accomodate his growing

tummy. He quickly went from a children's size 4 to a size 10!

He did slowly lose most of the excess weight, once he was able to be more

active again and we started lowering the dose. He's been pretty stable

lately, though we have had to change the dose around at times. Only problem

is he has not been growing any taller. He weighs 57.5 pounds and is still 3

feet 10 inches tall, as of yesterday. His height has remained the same for

about three years, now. Still, when he is having a flare he tends to lose

his appetite so that is always a challenge for us. He knows it's important

to eat before taking his meds, or his stomache may hurt, so he usually

compromises.

That must have been very scary for you, when even the prednisone didn't

bring the relief that was needed. You must have been so worried about !

Fortunately, it has always worked for us. I wish we could do without it,

though!

Yes, over time it does seem like we get better tuned in and can sometimes

judge when a flare is coming on. And we can be prepared emotionally,

somewhat, for it's consequences. Still, sometimes it still catches us

off-guard. My son Josh has been sick all week, after he seemed to be doing

really well for a while. You never know, I guess, when to expect this. I

just hope this flare doesn't last too long.

Anyway, Carol, I'm glad you joined this list and look forward to talking

with you more.

I hope is feeling well.

Aloha,

Georgina

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  • 2 months later...
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Hi everyone,

I remember having a rash on the inside of my right thigh and it was real

tender and lasted a long time and nothing I put on it helped, it was

gone after the first year. I also had funny spots on my feet from

circulation problems these also have gone away.

Raven

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  • 5 months later...

Thanks Kathy,

Will do!!

:)

>From: KATBERCOO@...

>Reply- onelist

> onelist

>Subject: Re: [ ] Rash

>Date: Sun, 14 Nov 1999 14:28:28 EST

>

>Dear :

>

>I think that you should report the rash to your doctor. It could be the

>beginning of a reaction to one of your meds. It can't hurt to bring it to

>his attention. He might be able to prescribe something to relieve it.

>

>Kathy (AIH)

>Seattle area

>

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Dear :

I think that you should report the rash to your doctor. It could be the

beginning of a reaction to one of your meds. It can't hurt to bring it to

his attention. He might be able to prescribe something to relieve it.

Kathy (AIH)

Seattle area

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Geri,

Have you been pulling weeds? Sounds like poison ivy.

J

>From: Geri Spang <spangs@...>

>Reply- onelist

> onelist

>Subject: Re: [ ] Rash

>Date: Sun, 14 Nov 1999 15:04:04 -0800

>MIME-Version: 1.0

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>

>,

>I get rashes now and then that sound similar to what you describe. I can

>usually get rid of them by either taking Benadryl or using a cortisone

>cream. However, if a rash persists and even gets worse despite mild home

>remedies, you definitely should see your doctor. Right now I have a couple

>of tiny bumps that look like blisters and are intensely itchy. Even

>Bactine relieves the itch, so I'm not worried about them. If they got

>worse, though, I'd call my doctor.

>Take care,

>Geri

>

>

>

>------------------------------------------------------------------------

>Please support the American Liver Foundation!

>

>1.) To subscribe send e-mail to -subscribeonelist

>2.) To UNsubscribe send to -unsubscribeonelist

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,

I get rashes now and then that sound similar to what you describe. I can

usually get rid of them by either taking Benadryl or using a cortisone

cream. However, if a rash persists and even gets worse despite mild home

remedies, you definitely should see your doctor. Right now I have a couple

of tiny bumps that look like blisters and are intensely itchy. Even

Bactine relieves the itch, so I'm not worried about them. If they got

worse, though, I'd call my doctor.

Take care,

Geri

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HI Geri:

I remember before I was diagnosed with AIH (in 1985) that I had a similar

rash as you describe at the age of 19 in 1980. Blister like bumps over my

entire body that started on my legs .. then moved to my hands .. and then

over my torso, etc., along with severe joint pain to the point I could no

longer walk or move. The rash spread quickly over a time period of

approximately 8 hours or less. Please watch your rash closely along with

any joint pain that you are feeling. It could be a flare up of some sort.

Debbie

AIH

Michigan

Re: [ ] Rash

>From: Geri Spang <spangs@...>

>

>,

>I get rashes now and then that sound similar to what you describe. I can

>usually get rid of them by either taking Benadryl or using a cortisone

>cream. However, if a rash persists and even gets worse despite mild home

>remedies, you definitely should see your doctor. Right now I have a couple

>of tiny bumps that look like blisters and are intensely itchy. Even

>Bactine relieves the itch, so I'm not worried about them. If they got

>worse, though, I'd call my doctor.

>Take care,

>Geri

>

>>Please support the American Liver Foundation!

>

>1.) To subscribe send e-mail to -subscribeonelist

>2.) To UNsubscribe send to -unsubscribeonelist

>3.) Digest e-mail format send to -digestonelist

>4.) Normal e-mail format send to -normalonelist

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Geri,

I have noticed same kind of fine rash. My symptoms of liver disease come

and go. This time it started with an attack of itching. That subsided a

little and is now followed with nausea and rash. But docs say I just have

fatty liver. Something is wrong with this picture.

J

>From: Geri Spang <spangs@...>

>Reply- onelist

> onelist

>Subject: Re: [ ] Rash

>Date: Mon, 15 Nov 1999 02:09:25 -0800

>MIME-Version: 1.0

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>Received: from [209.207.164.61] by hotmail.com (3.2) with ESMTP id

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>Delivered-mailing list onelist

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>

>Debbie,

>I started having problems with rashes way back in 1979. It was concluded

>that I'd developed some strangely named but not-so-rare reaction to sun, my

>own perspiration and just about anything that broke the surface of my

>skin. The doctor tested me by running a pin along my back and commented

>that it raised a welt. She said that I probably could write my name on my

>skin and anyone would be able to read it!

>

>Later I had some episodes of skin problems that defied diagnosis though I

>was tested several times for Lupus. Once it caused my eyelids to swell and

>even peel. Another time it happened in 1990 when we lived in Switzerland

>and I thought I was allergic to Swiss dishwashing detergents. Rubber

>gloves, even special gloves for latex sensitive people, made it worse. My

>hands were swollen and bright red for weeks. Then it seemed to just go

>away, though meds didn't seem to have an effect. Finally, in 1996 and

>early 1997 I was treated for a full year for blisters on the palms of my

>hands. They were " mirror " images, identical on each hand. I had an HMO at

>the time and the doctor suspected something - possibly Lupus though he

>didn't tell me that, but my primary doctor wouldn't authorize further

>tests. I didn't learn that until I sent for my records from Seattle a few

>months ago. That time I had blood tests, a biopsy of one of the lesions

>and even a Cortisone injection. Nothing did any good, including about 8

>different creams and lotions he tried. Oddly, that also went away

>spontaneously. I learned when I was diagnosed for AIH that red blotches

>and " blisters " on the palm of the hand are quite typical for liver

>disease. Almost every doctor I've seen since my AIH diagnosis looks at the

>palms of my hands and they always look reddish and blotchy, though no more

>lesions. I also had swelling around the cuticles of my fingernails and

>they developed deep, rough ridges. Since I've been treated for AIH the

>ridges are almost 100% gone.

>

>Also starting in about 1979, I had episodes of severe joint pain and

>swelling for no diagnosable reason. A couple of times the swelling and

>pain in my hands was so severe I couldn't even comb my own hair. Other

>times I would wake up with a knee swollen or a few months later, it would

>be a foot and ankle. Sometimes both feet and ankles. Tests for RA and

>Lupus were always negative. The first transplant doctor I saw post AIH

>diagnosis told me that this kind of joint pain and swelling isn't unusual

>for AIH patients. The last episode I had was in 1992 while we still lived

>in Switzerland. I have no idea why it stopped, but I'm grateful. I know

>this sounds dumb, but once the problem disappeared, usually with a couple

>of weeks at longest, I never thought about it again. I just had no clue

>that I could have any kind of potentially serious chronic disease.

>

>This evening I developed a fine rash at the base of my throat. It's still

>there and if it bothers me I'll probably try one of the creams I've been

>prescribed in the past. If it gets worse, I guess it's back to the drawing

>board. I am really trying to positive think myself out of having a

>flare-up of any kind. Not that sticking my head in the sand is going to do

>much good.

>

>Take care,

>Geri

>

>

>

>------------------------------------------------------------------------

>Please support the American Liver Foundation!

>

>1.) To subscribe send e-mail to -subscribeonelist

>2.) To UNsubscribe send to -unsubscribeonelist

>3.) Digest e-mail format send to -digestonelist

>4.) Normal e-mail format send to -normalonelist

><< text3.html >>

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,

No weeds - but I've had poison oak years ago. This is just couple of

spots but I agree, they do look like poison oak blisters. It can also

cause a toxic reaction in some people. One of our sons was hospitalized

with it when he was a little boy, in fact. However, I haven't been around

anything that hasn't been there for years. No exposure...

Take care,

Geri

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Debbie,

I started having problems with rashes way back in 1979. It was concluded

that I'd developed some strangely named but not-so-rare reaction to sun, my

own perspiration and just about anything that broke the surface of my

skin. The doctor tested me by running a pin along my back and commented

that it raised a welt. She said that I probably could write my name on my

skin and anyone would be able to read it!

Later I had some episodes of skin problems that defied diagnosis though I

was tested several times for Lupus. Once it caused my eyelids to swell and

even peel. Another time it happened in 1990 when we lived in Switzerland

and I thought I was allergic to Swiss dishwashing detergents. Rubber

gloves, even special gloves for latex sensitive people, made it worse. My

hands were swollen and bright red for weeks. Then it seemed to just go

away, though meds didn't seem to have an effect. Finally, in 1996 and

early 1997 I was treated for a full year for blisters on the palms of my

hands. They were " mirror " images, identical on each hand. I had an HMO at

the time and the doctor suspected something - possibly Lupus though he

didn't tell me that, but my primary doctor wouldn't authorize further

tests. I didn't learn that until I sent for my records from Seattle a few

months ago. That time I had blood tests, a biopsy of one of the lesions

and even a Cortisone injection. Nothing did any good, including about 8

different creams and lotions he tried. Oddly, that also went away

spontaneously. I learned when I was diagnosed for AIH that red blotches

and " blisters " on the palm of the hand are quite typical for liver

disease. Almost every doctor I've seen since my AIH diagnosis looks at the

palms of my hands and they always look reddish and blotchy, though no more

lesions. I also had swelling around the cuticles of my fingernails and

they developed deep, rough ridges. Since I've been treated for AIH the

ridges are almost 100% gone.

Also starting in about 1979, I had episodes of severe joint pain and

swelling for no diagnosable reason. A couple of times the swelling and

pain in my hands was so severe I couldn't even comb my own hair. Other

times I would wake up with a knee swollen or a few months later, it would

be a foot and ankle. Sometimes both feet and ankles. Tests for RA and

Lupus were always negative. The first transplant doctor I saw post AIH

diagnosis told me that this kind of joint pain and swelling isn't unusual

for AIH patients. The last episode I had was in 1992 while we still lived

in Switzerland. I have no idea why it stopped, but I'm grateful. I know

this sounds dumb, but once the problem disappeared, usually with a couple

of weeks at longest, I never thought about it again. I just had no clue

that I could have any kind of potentially serious chronic disease.

This evening I developed a fine rash at the base of my throat. It's still

there and if it bothers me I'll probably try one of the creams I've been

prescribed in the past. If it gets worse, I guess it's back to the drawing

board. I am really trying to positive think myself out of having a

flare-up of any kind. Not that sticking my head in the sand is going to do

much good.

Take care,

Geri

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Hi ,

That's exactly like me! I have the rash on my chest, like a sunburn. I

mostly get red dots on my arms, but I've also recently got them on my

thighs. Do your bother you much? Do you know what's causing them? Are you

also on pred and imuran? It's crazy to get excited when someone else has

similar symptoms. Don't get me wrong..I'm sorry you're having rashes and

wish you weren't, but...maybe we can figure out what's going wrong. Take

care,

:)

>From: zjm@...

>Reply- onelist

> onelist

>Subject: Re: [ ] Rash

>Date: Tue, 16 Nov 1999 10:43:28 -0500 (EST)

>

> I also have a rash on my chest it is like the kind I get from tt

>much sun I aiso have some red dots on my lower part of legs.

>

>

> Pa.

>

>

>------------------------------------------------------------------------

>Please support the American Liver Foundation!

>

>1.) To subscribe send e-mail to -subscribeonelist

>2.) To UNsubscribe send to -unsubscribeonelist

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Geri,

>The doctor tested me by running a pin along my back and commented

> that it raised a welt. She said that I probably could write my

> name on my

> skin and anyone would be able to read it!

There is a name for that condition, but I can't remember what it is. It's

not serious.

Don

AIH Minneapolis

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Hi Don,

The name is something like " dermographica " or something. I know it's

common and that's what threw everyone off and probably prevented an earlier

AIH diagnosis, because it was thought that the subsequent skin problems

were related - at first - also, I took one little Hydroxyzine for years and

it seemed to control it. However, the rest of the skin problems that

followed were another story and no medications affected them. Just another

one of those things about autoimmune diseases that make it difficult to get

a good early diagnosis.

I tend to confuse the issue because I'm inclined to not mention all

symptoms and cancel appointments with doctors, rather than follow

through. You hear that doctors think many patients over-react, but IMO,

that's much better than hoping that if you ignore symptoms they'll just go

away.

Take care,

Geri

<<From: " Don Hanson " <donhanson@...>

>Geri,

> >The doctor tested me by running a pin along my back and commented

> > that it raised a welt. She said that I probably could write my

> > name on my skin and anyone would be able to read it!

>

>There is a name for that condition, but I can't remember what it is. It's

>not serious.

>

>Don

>AIH Minneapolis>>

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  • 2 months later...

I had it on my arms even before I knew I had Hep or

Fibro. the Dr told me it was from the liver. Mine did

not burn (except when in direct sunlight) or itch to

bad....Connie

--- Judy <jcmmo@...> wrote:

> I have a raised rash that covers most of my neck. I

> haven't changed

> soaps or lotions. Benadryl lotion helps the itching

> and burning. I

> don't know if it is HCV , fibromyalgia, pct or

> something else.

> The allergist and my pcp can't figure it out. Does

> anyone else get

> this ????

>

> Thanks,

> Judy

>

>

> http://community.webtv.net/jcmmo/Affirmation

>

>

__________________________________________________

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I had it on my arms even before I knew I had Hep or

Fibro. the Dr told me it was from the liver. Mine did

not burn (except when in direct sunlight) or itch to

bad....Connie

--- Judy <jcmmo@...> wrote:

> I have a raised rash that covers most of my neck. I

> haven't changed

> soaps or lotions. Benadryl lotion helps the itching

> and burning. I

> don't know if it is HCV , fibromyalgia, pct or

> something else.

> The allergist and my pcp can't figure it out. Does

> anyone else get

> this ????

>

> Thanks,

> Judy

>

>

> http://community.webtv.net/jcmmo/Affirmation

>

>

__________________________________________________

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>From: jcmmo@... (Judy)

>Reply-Hepatitis Conelist

>Hepatitis Conelist

>Subject: rash

>Date: Tue, 18 Jan 2000 11:31:29 -0600 (CST)

>

>I have a raised rash that covers most of my neck. I haven't changed

>soaps or lotions. Benadryl lotion helps the itching and burning. I

>don't know if it is HCV , fibromyalgia, pct or something else.

>The allergist and my pcp can't figure it out. Does anyone else get

>this ????

>Judy, My name is pamela and I have psorisis and it got a lot worst with the

>medication. You need to go to a dematolgist..

>Thanks,

>Judy

>

>

>http://community.webtv.net/jcmmo/Affirmation

>

______________________________________________________

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>From: jcmmo@... (Judy)

>Reply-Hepatitis Conelist

>Hepatitis Conelist

>Subject: rash

>Date: Tue, 18 Jan 2000 11:31:29 -0600 (CST)

>

>I have a raised rash that covers most of my neck. I haven't changed

>soaps or lotions. Benadryl lotion helps the itching and burning. I

>don't know if it is HCV , fibromyalgia, pct or something else.

>The allergist and my pcp can't figure it out. Does anyone else get

>this ????

>Judy, My name is pamela and I have psorisis and it got a lot worst with the

>medication. You need to go to a dematolgist..

>Thanks,

>Judy

>

>

>http://community.webtv.net/jcmmo/Affirmation

>

______________________________________________________

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  • 1 month later...
Guest guest

Dear Tracey, All I can tell you are the symptoms that n has with systemic JRA. The rash can change day to day on how severe it is and where it appears. It comes in late afternoon or evening and can be anywhere. It originally started on her back and legs, but now it can be on face , hands, etc. It is not a raised rash, just a light red rash flush with the skin. n's rash has always itched. Sometimes, she itches where there is no rash. When n has a fever, it would come in late afternoon or evening. Sometimes it is low grade night after night, and then suddenly it might spike to 103. She might have a fever for 30 minutes and it is gone. Other times it goes up and down all night long. I wish I could be of more help, but it is not a consistent disease at all. Right now n has no fever (due to a tapering dose of prednisone she is still on) but she has the itching every night. Two night ago the rash came back, after being gone for 2 weeks. With systemic JRA the liver and spleen can become tender or enlarged, so if your son has systemic, ask him if his abdomen hurts him. Also, many times the glands under the neck become very tender. n also has trouble sleeping since she has gotten sick. She wakes up many times a night, and complains of insomnia. She is 11. Good luck. P.S. n has complained of headaches and stomachaches with the disease.

rashFrom: " tracey D. Nettles " <toracey@...>

Paxton, who is 6, and has been dx. with pauci jra, has started having a rash in the evenings. It is red and kind of in patches on her back, abd. and shoulders. She says it is really itchy. It only lasts a few hours and then just disappears. I thought only the systemic jra had the rash. Could someone please give me some insight? I am really confused. I don't know whether to ride this out til her next MD apt. in April or see if we can be seen earlier. She is also continuing to have low grade fevers in the evening.

Any help anyone could give would be most appreciated. Thanks!!

Tracey

For links to websites with JRA info visit: http://www.geocities.com/Heartland/Village/8414/Links.html

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Guest guest

Hi Tracey,

The rash, along with the fever, ARE two markers of systemic invlovement

.... but they can also come from other things too, which a doctor would

probably want to rule out. No other signs of current infections going

on? Rash is a common allergic reaction. Have you changed your regular

brand of laundry detergent recently? That could possibly cause a skin

reaction. Does the rash seem to appear right after taking a dose of a

particular med? Might be med related. When our rheumatologist first saw

Josh's rash, he knew immediately that it was a classic Still's rash. I

guess they get some training to be able to distinguish one sort of rash

from another. So it might be worthwhile to have Paxton checked before

the next scheduled appt. But, if the rash is coming in the evenings,

unless the doctor has evening appts available, it might be hard to show

it to them. Pictures of the rash don't often capture it's full essence.

Josh usually gets his in the early am hours only, except for when he's

in a really bad flare and it comes twice a day, along with the fevers.

Not sure if this will help any but I hope it does.

Aloha,

Georgina

> " tracey D. Nettles " wrote:

> Paxton, who is 6, and has been dx. with pauci jra, has started having

> a rash in the evenings. It is red and kind of in patches on her back,

> abd. and shoulders. She says it is really itchy. It only lasts a few

> hours and then just disappears. I thought only the systemic jra had

> the rash. Could someone please give me some insight? I am really

> confused. I don't know whether to ride this out til her next MD apt.

> in April or see if we can be seen earlier. She is also continuing to

> have low grade fevers in the evening.

> Any help anyone could give would be most appreciated. Thanks!!

>

> Tracey

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Hi ,

I know I'm a day late and a dollar short...........but I would at least

call the doc and tell what's going on with Paxton. In the meantime,

keep a close, close eye on those fevers....Jess' started out low grade

and then went to very high spiking fevers.

Like you I don't know why she would have systemic symptoms when she

has pauci. Keep us updated. JODI

tracey D. Nettles wrote:

From: "tracey

D. Nettles" <toracey@...>Paxton,

who is 6, and has been dx. with pauci jra, has started having a rash in

the evenings. It is red and kind of in patches on her back, abd. and shoulders.

She says it is really itchy. It only lasts a few hours and then just

disappears. I thought only the systemic jra had the rash. Could

someone please give me some insight? I am really confused.

I don't know whether to ride this out til her next MD apt. in April or

see if we can be seen earlier. She is also continuing to have low

grade fevers in the evening.Any

help anyone could give would be most appreciated. Thanks!! Tracey

For links to websites with JRA info visit:

http://www.geocities.com/Heartland/Village/8414/Links.html

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  • 2 months later...
Guest guest

Jessie,

Rashes are one problem I didn't have while on combo (thankfully!).

I know it can be a side effect of the ribavirin. Have you tried benadryl?

If I find out anything else I'll let you know. By the way, I think you are

doing the best thing to stay on longer.

Claudine

>From: jessiefromchino@...

>Hi Claudine, I went to the doc. on mom. I thought I would be off

>treatment July. He said to stay on till Jan. and all the stuff I read

>says a year is better than 6 months. But I have this rash all over my

>body told the doc. he blew it off as nothing. I use Aveeno oat meal bath

>oil and itch creams of all kinds. Do you have any suggestions? I am a

>manicurist I am just wondering if it is the powder I am in, never happen

>before. My white count is back up and I am feeling good. Hope

>everything is going well with you. Jessie

>

>EZ-DOES IT

>

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