New with questions:)

[Guest guest]

Hi, we just started our 6 yr. old autistic son on the enzymes Sunday. I need to

mix the enzymes with his food, because if it doesnt pass his sniff test, he wont

touch it. I am pulling the capsules apart and mixing with his warm food after

the food has been cooked, and I have also mixed with ice cream, now I am

wondering if I am harming the activation of the enzymes by the hot and cold

temps of the food? How warm is to hot, and how cold is to cold, if the

temperatures do matters? Thanks!

[Guest guest]

Welcome, joanne. I'm sorry about what you are experiencing.

As Sue is, I'm also wondering if you are seeing a rheumatologist. You

need a rheumatologist who has experience with lupus who can help

alleviate your symptoms and who will monitor for and treat the other

effects SLE may be having on you.

This is a very active lupus group:

LUPIES/

They may have some good suggestions about whom to see in your area.

I'm not sure about your exact situation at work, but the bulbs can be

replaced or the exisiting fixtures can be fitted with special filters

so that the light doesn't adversely affect you.

Not an MD

On Wed, Feb 24, 2010 at 4:36 PM, Joanne <jo_wh@...> wrote:

> Hi,

> I was just diagnosed with systemic lupus, and I am extremely anxious about it.

 The fluorscent lights at work bother my eyes; my skin has a red rash all over

it, and my joints ache.  I currently am not on any medication because my doctor

says he's hesitant about prescribing " strong " medicines. Which is fine but...I

am feeling really miserable, shaky, and in pain, plus itchy with the skin rash.

 I also am trying to find a sunscreen and moisturizer I can use without

exacerbating it all.

> Help?!

> thanks,

> joanne

[Guest guest]

I would suggest you try a new rheumy.

 

 

From: Joanne <jo_wh@...>

Subject: [ ] new with questions:)

Date: Wednesday, February 24, 2010, 3:36 PM

 

Hi,

I was just diagnosed with systemic lupus, and I am extremely anxious about it.

The fluorscent lights at work bother my eyes; my skin has a red rash all over

it, and my joints ache. I currently am not on any medication because my doctor

says he's hesitant about prescribing " strong " medicines. Which is fine but...I

am feeling really miserable, shaky, and in pain, plus itchy with the skin rash.

I also am trying to find a sunscreen and moisturizer I can use without

exacerbating it all.

Help?!

thanks,

joanne

[Guest guest]

Joanne

the fact that your doc is afraid to prescribe strong drugs.....makes me

concerned that you are not seeing the appropriate doc.  Do you have systemic

lupus or the skin disorder discoid lupus this makes a huge difference in the

treatment........you said SLE which doesnt make sense not to treat.  With a

letter from your physician your employer would have to make  reasonable

accomodations for your disability.  I would be especially concerned if your

eyes are bothering you....I have suffered from iritis which is another problem

that happense with auto immune disease.

Deb RN

 Debra

[Guest guest]

I have a Lupus component to my disease and they started me on Plaquenil right

away. That is usually the first line of treatment in Lupus. I suggest seeing a

rheumatologist (or a new one if already seeing one) because the regular family

practice docs really don't know much about auto immune diseases and don't like

to mess with the drugs for them. Best of luck to you and I am very familiar with

the support group that suggested for you. The people over there have a ton

of Lupus info.

Hope you get to feeling better and feel free to stick with us as well.

>

> Hi,

> I was just diagnosed with systemic lupus, and I am extremely anxious about it.

The fluorscent lights at work bother my eyes; my skin has a red rash all over

it, and my joints ache. I currently am not on any medication because my doctor

says he's hesitant about prescribing " strong " medicines. Which is fine but...I

am feeling really miserable, shaky, and in pain, plus itchy with the skin rash.

I also am trying to find a sunscreen and moisturizer I can use without

exacerbating it all.

> Help?!

> thanks,

> joanne

>

[Guest guest]

Hi Joanne, I hope you got some good advice, I'm sorry to be responding so

late.  I have problems access email at work.  I wanted to tell you to hang in

there.  Lupus can be tough and it's certainly scary in the beginning, but I

have several friends who are doing quite well.  One of my friends has pretty

severe lupus with hair loss, rashes, and joint pain, but she is still active

duty Army and just completed a deployment to Cuba.  She does well on Plaquenil

and has taken it for years.  I would set up a 2nd and 3rd opinion with a

rheumatologist.  Sometimes " strong " meds are just what we need, and more info

from specialists can help steer you toward a plan that gets lupus in the

background of your life rather than the foreground.  And for sunscreen Aveeno

makes a daily moisturizer with SPF 15 for sensitive red skin.  It's in a beige

bottle and has feverfew extract.  Maybe give that a try and use something mild

w/o SPF when you go to bed at night.

Kate F

________________________________

From: Joanne <jo_wh@...>

Sent: Wed, February 24, 2010 4:36:43 PM

Subject: [ ] new with questions:)

 

Hi,

I was just diagnosed with systemic lupus, and I am extremely anxious about it.

The fluorscent lights at work bother my eyes; my skin has a red rash all over

it, and my joints ache. I currently am not on any medication because my doctor

says he's hesitant about prescribing " strong " medicines. Which is fine but...I

am feeling really miserable, shaky, and in pain, plus itchy with the skin rash.

I also am trying to find a sunscreen and moisturizer I can use without

exacerbating it all.

Help?!

thanks,

joanne