Side effects

[Guest guest]

Hi Patty,

s started out as an infection.They claim that you have to have some particular gene then something triggers it like an infection or trauma to a joint.s infection I am positive triggered it and 2 weeks later his bike wreck sent it into hyperdrive.Our city is about 60-75,000 and I know of 3 systemics and 1 pauci and probably a handful more.

I found the advice from our rheumy useless but lots and lots of fruit,high in water content low in calories.Hopefuly Caitlen wont get to the point of crying and begging for food and sneaking it.

Hugs

Becki and 5 systemic

[Guest guest]

Hi Patty,

My son Robbie had a ferocious appetite on the steriods, seemed worse the first

couple of times he started on a high dose, though the last time the appetite was

back, but as the body adjusts, and with a little taper it subsides some - and

seemed to do so more quickly this last go-round. He would eat 3 times the

amount of dinner I ate, and wake me at 2:00 am for me to fix him something to

eat. (After having a bedtime snack!). He also had a giddy - I used to call it

manic laugh. The first time his after school care lady experienced that last

winter - she gave me a look like she was scared. I explained it was the

steriods, and warned her about the mood swings - which he experienced as well -

cried just as easily as he would laugh - and switch from one to the other

midstream. During a follow up with the rheumy he (at age 5) told the rheumy

that sometimes he laughed or cried and didn't know why. Luckily, those subsided

as well with the taper. I hadn't really thought about those side affects in

awhile - I feel lucky to be where we are today! I hope Caitlin gets relief from

her meds.

Val

Rob's Mom (6,systemic)

In a message dated 1/5/2004 7:48:54 PM Eastern Standard Time, Emeraldsx3 writes:

>

>

> Hello All:

>

> We are certainly seeing some side effects from the steroid. This child, who

> never has eaten much in all her 11 years, is now eating like a PIG. She is

> going to eat us out of house and home. It's constant, I can't keep up with

her.

> I give her something and she wants more, more and more. It's amazing how

> quickly the steroid affects your body with the side effects. She is also

giddy,

> euphoric like. Has anyone else experienced this particular side effect?

> It's bizarre. She's in her room with her stuffed animals, talking to them and

> laughing up a storm. Saying how they are her friends, etc.

>

> Caitlin had her blood drawn today. I am eager to see the results at her

> appointment tomorrow with her rheumy. I used Emla on her arm today and it

didn't

> hurt her at all -YEAH.

>

> A question regarding systemic JRA. Does systemic JRA start with an infection

> or start out of the clear blue sky with no rhyme or reason to it?

>

> Thank you all so much for sharing your words of wisdom and

> experience.

>

> Take care.

> Patty

>

>

>

>

[Guest guest]

In a message dated 1/5/04 10:25:06 PM Eastern Standard Time,

alesha1003@... writes:

<< We believe that hers started from an infection that got way out of control

in May. Oddly enough though the little boy that lives across the street from

us was diagnosed the same week by another docter with the same thing. So I

am trying to do some research on environmental factors. I just find it strange

that so few kids in the United State >>

Hi Alesha:

That is very odd that they were both diagnosed within the same week by two

different doctors and live on the same street, hhhmmmm. Certainly makes you

wonder. I would love to learn about any research you come across regarding

environmental factors.

Take care.

Patty

[Guest guest]

In a message dated 1/5/04 10:38:06 PM Eastern Standard Time,

bc.price@... writes:

<< Then my brother gets diagnosed with it in May of 1999, and then my ten

year old daughter gets it in November of 1999. My brother lives in New Orleans

and our daughter lived there until she was two.

My Mother had heart problems and was in intensive care (where they both went

and saw her) and both were healthy at that time. The next time they saw one

another they both had developed rheumatoid arthritis. Now granted he has

regular rheumatoid arthritis with an onset at 52, and our daughter has systemic

jra. But it seems a bit too coincidental to me. I am sure there is a genetic

link, but to have it go off in both of them the same year is a bit much.

(n, 14, s >>

Hi :

That is interesting that they both got RA at the same time at different ages.

Take care.

Patty

[Guest guest]

In a message dated 1/6/04 8:29:50 AM Eastern Standard Time,

nikki228@... writes:

<< atty,

Systemic JRA can be brought on by an untreated infection,

some think that it can be related to vaccinations, etc., or

it can be genetic and just rear its ugly head anytime it

feels like it.

Tammy

>>

It sure is ugly:( I wish none of us ever saw it! It certainly has a mind of

it's own.

Take care.

Patty

[Guest guest]

In a message dated 1/6/04 12:49:26 PM Eastern Standard Time,

carneyval@... writes:

<< of times he started on a high dose, though the last time the appetite was

back, but as the body adjusts, and with a little taper it subsides some - and

seemed to do so more quickly this last go-round >>

I am hoping that with Caitlin's steroid wean we see less and less of the

'eating like a piggy' effect.

<<He also had a giddy - I used to call it manic laugh. The first time his

after school care lady experienced that last winter - she gave me a look like

she was scared. I explained it was the steriods, and warned her about the mood

swings - which he experienced as well - cried just as easily as he would

laugh - and switch from one to the other midstream. >>

I find this the most bizarre side effect with Caitlin so far. It is really

weird to see.

I am glad she is having the giddy reaction rather than the crying one though.

<<During a follow up with the rheumy he (at age 5) told the rheumy that

sometimes he laughed or cried and didn't know why. Luckily, those subsided as

well

with the taper. I hadn't really thought about those side affects in awhile -

I feel lucky to be where we are today! I hope Caitlin gets relief from her

meds.>>

Val

It's good to hear they subsided with the taper too. Thank you Val. Caitlin

seems to be getting better, finally:)

Take care.

Patty

[Guest guest]

In a message dated 1/6/04 2:06:56 PM Eastern Standard Time,

Arthurnator@... writes:

<< Hi Patty,

s started out as an infection.They claim that you have to have some

particular gene then something triggers it like an infection or trauma to a

joint. >>

Hi Becki:

You mention the genetic link. Have either you or your husband been tested?

Is there even a test that identifies the gene? Do they even know the gene?

<<Our city is about 60-75,000 and I know of 3 systemics

and 1 pauci and probably a handful more.>>

Do you know them personally? It would be nice to have people close by in

similar situations. Having an understanding ear.

<>

What type of advice did your rheumy give regarding eating a lot from

steroids. Luckily, Caitlin likes fruits, veggies, etc. although she is on this

hard

boiled egg kick. I swear this child had 8 hard boiled eggs in one day which

can't be good for the cholesterol. She hasn't reach the point of crying for or

sneaking the food, thankfully.

Take care.

Patty

[Guest guest]

In a message dated 1/6/04 3:09:16 PM Eastern Standard Time,

MTepper@... writes:

<< Their lead counts have been tested and there were no

problems there. I believe that some people are genetically inclined to

this disease and if the circumstances are put in place, they will

develop jra. Just my personal theory! Michele (16,pauci & spondy)

Thanks for sharing your personal theory Michele. I learn so much from

everyone on this list daily.

Take care.

Patty

[Guest guest]

In a message dated 1/6/04 6:51:35 PM Eastern Standard Time,

sonia1md@... writes:

<< n regards to your question about the on-come of systemic jra, Aundrea's

was quite sudden. Last Feb. she was hospitalized with a severe rash,

horrible joint pain, high fever and sorethroat. She was diagnosed with

scarlet

fever. >>

Hi :

I find your post especially interesting to me. At the beginning of Caitlin's

illness she complained of sore throat and had a high fever so I brought her

to the peds. Strep was negative. Then she developed a rash, again strep

negative. After two weeks of in and out of the peds office she was admitted

into

the hospital to see if they could figure out what was going on. At this point

Caitlin's throat no longer hurt (because it had cleared from there and went

into her blood long before this), but her fever was still very much out of

control, arthritis to where she could barely walk. The rash had cleared

somewhat

because of the steroids she was put on by the peds the first week into her

illness. They diagnosed your daughter with Scarlet Fever but, with Caitlin,

they

thought perhaps, Rheumatic Fever, both had the same symptoms, strange. Of

course, we still do not have a definitive dx. Her rheumy keeps stating

Caitlin's

case is complex (I am sure a lot are).

<<fever. In September of this year she had all of those same symptoms

except her condition was worse in regards to the joint pain and rash.

She was diagnosed in sept with systemic jra and it was believed that in

Feb. she actually had her first full blown flare rather than the original

diagnosis of scarlet fever. She did have two rapid strep tests done and two

growth strep tests done. 3/4 were negative for strep. Kind of strange!

>>

When they initially thought Scarlet Fever, did they place her on prophylactic

antibiotics to help prevent another infection of Strep? All of Caitlin's

strep cultures were negative (quick test and growth). Her throat had cleared

the

infection from her throat and it went to her blood. Did you daughter ever

have a Stepozine (sp?) test done? ASO test? I would be curious what those

showed if she was tested for it.

<<The good news for us is that Aundrea has been off all meds for over 2 weeks.

She is doing wonderful. I was pretty scared last week because our whole

family got the flu. But, in answer to prayer Aundrea was spared the flu

and is continuing to do wonderful.

I hope that things continue to improve for Caitlin <<

I am thrilled to hear Aundrea has been of all meds for 2 weeks+ and is doing

so well. A huge relief to all of you, I am sure. Yuck, the flu, sorry to

hear that. I am glad Aundrea escaped that bug:) Thank you for Caitlin's well

wishes.

Take care.

Patty

[Guest guest]

Ive always heard about the side effects of Pred and find it very interesting that every time Nick has been on it ( for his asthma as a toddler and once breifly with a flare this past summer) It has always made him very calm and mellow. I guess we just lucked out.

Hugs Helen and (6,systemic)

Hugs..Helen DH Dan DS's (20)(14)(11)Zachary(9)(6) And DD Yuping Burger, adopted May 9th 2000 DuChang, JiangXi, China DOB 3/29/99 ACR 0-9 mths (11 mths at referral) DTC 7/22/99 DOR 2/25/00 (219 days of waiting) DOT 5/5-5/20/00>From: Emeraldsx3@... >Reply- > >Subject: Re: Side Effects >Date: Wed, 7 Jan 2004 18:27:26 EST > >In a message dated 1/6/04 12:49:26 PM Eastern Standard Time, >carneyval@... writes: > ><< of times he started on a high dose, though the last time the appetite was >back, but as the body adjusts, and with a little taper it subsides some - and >seemed to do so more quickly this last go-round >> > >I am hoping that with Caitlin's steroid wean we see less and less of the >'eating like a piggy' effect. > > <after school care lady experienced that last winter - she gave me a look like >she was scared. I explained it was the steriods, and warned her about the mood >swings - which he experienced as well - cried just as easily as he would >laugh - and switch from one to the other midstream. >> > >I find this the most bizarre side effect with Caitlin so far. It is really >weird to see. >I am glad she is having the giddy reaction rather than the crying one though. > > ><sometimes he laughed or cried and didn't know why. Luckily, those subsided as well >with the taper. I hadn't really thought about those side affects in awhile - >I feel lucky to be where we are today! I hope Caitlin gets relief from her >meds.>> >Val > >It's good to hear they subsided with the taper too. Thank you Val. Caitlin >seems to be getting better, finally:) > >Take care. >Patty Check your PC for viruses with the FREE McAfee online computer scan.

[Guest guest]

In a message dated 1/7/04 5:37:01 PM Central Standard Time, Emeraldsx3@... writes:

You mention the genetic link. Have either you or your husband been tested?

Is there even a test that identifies the gene? Do they even know the gene?

No,not sure and my aunt has RA and my husbands niece has Lupas.I also have a very strong family history of type 1 diabetes also an auto immune disease.

<<Our city is about 60-75,000 and I know of 3 systemics and 1 pauci and probably a handful more.>>

Do you know them personally? It would be nice to have people close by in similar situations. Having an understanding ear.

I know one very well.She is about 9 months younger then and they go to the same school.Her mom cuts s hair.The other I met at the rheumy's office and the 3rd ones dad is heading our local Arthritis walk and I read about him in the paper.The Arthritis Foundation claims that there is probably atleast one child with arthritis in every school.Not neccessarily JRA but one of the 100 forms.

Hugs

Becki and 5 systemic

[Guest guest]

Hi,

The dose probably has alot to do with it. was always at his worst between 20 and 30 mg.Duration probably factors in also.

Hugs

Becki and 5 systemic

[Guest guest]

Hi ,

Very pleased to hear that Aundrea was a bit luckier than the rest of the

household members and did not get the flu. The arthritis flares are

difficult enough to deal with! Hopefully, everything will remain stable

for a very long time and Aundrea won't be having any symptoms or

underlying disease activity.

Take Care,

Georgina

sonia dykhuizen wrote:

> Hi Patty,

> In regards to your question about the on-come of systemic jra, Aundrea's

> was quite sudden. Last Feb. she was hospitalized with a severe rash,

> horrible joint pain, high fever and sorethroat. She was diagnosed with

> scarlet

> fever. In September of this year she had all of those same symptoms

> except her condition was worse in regards to the joint pain and rash.

> She was diagnosed in sept with systemic jra and it was believed that in

> Feb. she actually had her first full blown flare rather than the original

> diagnosis of scarlet fever. She did have two rapid strep tests done

and two

> growth strep tests done. 3/4 were negative for strep. Kind of strange!

> The good news for us is that Aundrea has been off all meds for over 2

weeks.

> She is doing wonderful. I was pretty scared last week because our whole

> family got the flu. But, in answer to prayer Aundrea was spared the flu

> and is continuing to do wonderful.

> I hope that things continue to improve for Caitlin.

> Take Care,

> (mom to Aundrea age 8 systemic jra)

>

> Emeraldsx3@... wrote:

>

> Hello All:

>

> We are certainly seeing some side effects from the steroid. This

> child, who

> never has eaten much in all her 11 years, is now eating like a PIG.

> She is

> going to eat us out of house and home. It's constant, I can't keep

> up with her.

> I give her something and she wants more, more and more. It's

> amazing how

> quickly the steroid affects your body with the side effects. She is

> also giddy,

> euphoric like. Has anyone else experienced this particular side

> effect?

> It's bizarre. She's in her room with her stuffed animals, talking

> to them and

> laughing up a storm. Saying how they are her friends, etc.

>

> Caitlin had her blood drawn today. I am eager to see the results at

> her

> appointment tomorrow with her rheumy. I used Emla on her arm today

> and it didn't

> hurt her at all -YEAH.

>

> A question regarding systemic JRA. Does systemic JRA start with an

> infection

> or start out of the clear blue sky with no rhyme or reason to it?

>

> Thank you all so much for sharing your words of wisdom and

experience.

>

> Take care.

> Patty

[Guest guest]

In a message dated 1/20/04 6:36:49 PM Eastern Standard Time,

carneyval@... writes:

<<

Hi again Patty,

Yes, the ferocious appetite is really something to see, isn't it. I am glad

that Caitlin seemed to be doing better when you wrote this - I am so far

behind, I hope that things are still going well.

Val

Rob's Mom (6,systemic)

>>

Hi Val:

It sure was. As Caitlin has been being tapered off the steroids (she is now

down to 2 mls in the am only as of today) her appetite has pretty much gotten

back to normal YEAH. I have noticed though that when she sits down to eat she

now will eat almost all of it something she hasn't consistently done in the

past. Caitlin has been placed on two more meds - Plaquenil and MTX. She is

now having more good days than bad thank God. She was to go for labs yesterday,

but when I got there the waiting area was full and (I know I have become

germaphobic, but this started from a strep germ) we turned around and left. You

should have seen me on the elevator when 2 families got on with 5 kids - we got

off. I don't know when I will be comfortable with Caitlin being around so

many kids - well she goes back to school in February. She is walking with ease

and now complains at night (occasionally) that her hands hurt/swollen. The

arthritis seems to be gone from all the other areas. Still working on a

diagnosis for her and with these labs (we're trying again tomorrow - probably

take

the stairs - I hate being like this - so paranoid with germs) and when she goes

to see her rheumy next Tuesday, hopefully we will have a clearer picture.

Take care.

Patty

[Guest guest]

Hi again Patty,

Yes, the ferocious appetite is really something to see, isn't it. I am glad

that Caitlin seemed to be doing better when you wrote this - I am so far behind,

I hope that things are still going well.

Val

Rob's Mom (6,systemic)

In a message dated 1/7/2004 6:27:26 PM Eastern Standard Time, Emeraldsx3 writes:

>

>

> In a message dated 1/6/04 12:49:26 PM Eastern Standard Time,

> carneyval@... writes:

>

> << of times he started on a high dose, though the last time the appetite was

> back, but as the body adjusts, and with a little taper it subsides some - and

> seemed to do so more quickly this last go-round >>

>

> I am hoping that with Caitlin's steroid wean we see less and less of the

> 'eating like a piggy' effect.

>

> <<He also had a giddy - I used to call it manic laugh. The first time his

> after school care lady experienced that last winter - she gave me a look like

> she was scared. I explained it was the steriods, and warned her about the

mood

> swings - which he experienced as well - cried just as easily as he would

> laugh - and switch from one to the other midstream. >>

>

> I find this the most bizarre side effect with Caitlin so far. It is really

> weird to see.

> I am glad she is having the giddy reaction rather than the crying one though.

>

>

> <<During a follow up with the rheumy he (at age 5) told the rheumy that

> sometimes he laughed or cried and didn't know why. Luckily, those subsided as

well

> with the taper. I hadn't really thought about those side affects in awhile -

> I feel lucky to be where we are today! I hope Caitlin gets relief from her

> meds.>>

> Val

>

> It's good to hear they subsided with the taper too. Thank

> you Val. Caitlin

> seems to be getting better, finally:)

>

> Take care.

> Patty

>

>

>

>

[Guest guest]

Deb, those side effects sound like exactly what I

experienced.

I recently attempted to go back on Lexapro after a

6-mo. haitus. Unfortunately, it also causes a lot of

G-I issues for me (at least, I think it causes the

problems). That for me is an unacceptable side effect.

The dizziness and lightheadedness were easy enough to

deal with and went away eventually. Another side effet

that seems connected to this, however, was a feeling

of heaviness in my forearms and hands. Not quite pain,

but just dull, tired weakness, if that makes sense.

That's my experience. For now, I'm just trying to

manage my anxiety without the drug. Seems to be

working for now.

Good luck to you!

Jeff

--- Deb <damndanes@...> wrote:

> Hi guys,

>

> Can anyone please tell my what side effects they've

> experienced with

> the Lexapro. I'm on day 11 and having

> dizzy/lightheaded spells and

> feel really fatigued. Normal? Thanks.

>

> Deb

>

>

=====

D. Hamrick1050 W. Buena Ave., 3AChicago, Illinois 60613773/248-4688

(home)773/702-7680 (work)MrHamrick@...press (DOT) uchicago.edu " After

silence, that which comes nearest to expressing the inexpressible is music. " –

Aldous Huxley

[Guest guest]

Thank you Jeff. I guess I just have to stick it out. Horrible feeling,

though. Good luck to you also!

Deb

Re: Side Effects

> Deb, those side effects sound like exactly what I

> experienced.

>

> I recently attempted to go back on Lexapro after a

> 6-mo. haitus. Unfortunately, it also causes a lot of

> G-I issues for me (at least, I think it causes the

> problems). That for me is an unacceptable side effect.

>

> The dizziness and lightheadedness were easy enough to

> deal with and went away eventually. Another side effet

> that seems connected to this, however, was a feeling

> of heaviness in my forearms and hands. Not quite pain,

> but just dull, tired weakness, if that makes sense.

>

> That's my experience. For now, I'm just trying to

> manage my anxiety without the drug. Seems to be

> working for now.

>

> Good luck to you!

>

> Jeff

>

>

> --- Deb <damndanes@...> wrote:

> > Hi guys,

> >

> > Can anyone please tell my what side effects they've

> > experienced with

> > the Lexapro. I'm on day 11 and having

> > dizzy/lightheaded spells and

> > feel really fatigued. Normal? Thanks.

> >

> > Deb

> >

> >

>

>

> =====

> D. Hamrick1050 W. Buena Ave., 3AChicago, Illinois

60613773/248-4688 (home)773/702-7680

(work)MrHamrick@...press (DOT) uchicago.edu " After silence, that

which comes nearest to expressing the inexpressible is music. " - Aldous

Huxley

>

>

>

>

[Guest guest]

Here's a really simple list of side effects of Hep C.

There are a lot more, and treatment sides can duplicate the Hep side effects

plus some. Check out " Hepatitis Central " --I think every question you may have

can be answered there and it's very interesting reading.

Good luck,

Betty in Arkansas

Symptoms include crushing fatigue...exhaustion, depression, very mild

flu-like symptoms that seem to get a little better after getting lots of rest

only to

return as soon as you get tired again. Mild fever, chills, body aches. Ashen

or yellow complexion, dark circles under the eyes, red palms, possible

abdominal swelling, (almost spelled it abdominable) LOL. Elevated

liver enzymes on liver panel test (alt and ast). This is the most conclusive

signal until the actual test for hep is run.

[Guest guest]

I've been in treatment 30 weeks (Pegasys and Ribavarinn) and the only side I've

had that is listed below are the dark circles under my eyes...and it blew out my

thyroid which we regulate with Synthroid.

Sides aren't standard...they vary from person to person. The key is to drink

lots and lots of water, eat low fat foods stay away from red meats, etc. and

eat high grain foods. I work full time, volunteer two nights a week and other

than collapsing on Saturdays for a day of sleep, I've been doing just fine.

I take supplements, avoid stress and drum fo stay centered. I also stay

positive.

I'll try to remember this on the weekend and send you the vitamins and herbs

that I take. Can barely keep my eyes open tonight...

Tatezi

Symptoms include crushing fatigue...exhaustion, depression, very mild

flu-like symptoms that seem to get a little better after getting lots of rest

only to

return as soon as you get tired again. Mild fever, chills, body aches. Ashen

or yellow complexion, dark circles under the eyes, red palms, possible

abdominal swelling, (almost spelled it abdominable) LOL. Elevated

liver enzymes on liver panel test (alt and ast). This is the most conclusive

signal until the actual test for hep is run.

[Guest guest]

I've been in treatment 30 weeks (Pegasys and Ribavarinn) and the only side I've

had that is listed below are the dark circles under my eyes...and it blew out my

thyroid which we regulate with Synthroid.

Sides aren't standard...they vary from person to person. The key is to drink

lots and lots of water, eat low fat foods stay away from red meats, etc. and

eat high grain foods. I work full time, volunteer two nights a week and other

than collapsing on Saturdays for a day of sleep, I've been doing just fine.

I take supplements, avoid stress and drum fo stay centered. I also stay

positive.

I'll try to remember this on the weekend and send you the vitamins and herbs

that I take. Can barely keep my eyes open tonight...

Tatezi

Symptoms include crushing fatigue...exhaustion, depression, very mild

flu-like symptoms that seem to get a little better after getting lots of rest

only to

return as soon as you get tired again. Mild fever, chills, body aches. Ashen

or yellow complexion, dark circles under the eyes, red palms, possible

abdominal swelling, (almost spelled it abdominable) LOL. Elevated

liver enzymes on liver panel test (alt and ast). This is the most conclusive

signal until the actual test for hep is run.

[Guest guest]

In a message dated 2/19/2004 9:07:42 AM Eastern Standard Time,

t1d1r1d1@... writes:

> What is SVR?

>

Sustained Viral Response, I think.

[Guest guest]

In a message dated 2/19/2004 9:07:42 AM Eastern Standard Time,

t1d1r1d1@... writes:

> What is SVR?

>

Sustained Viral Response, I think.

[Guest guest]

That is a wonderful site. Thanks.

<><TammieD><>

Check out " Hepatitis Central " --I think every question you may have

> can be answered there and it's very interesting reading.

[Guest guest]

That is a wonderful site. Thanks.

<><TammieD><>

Check out " Hepatitis Central " --I think every question you may have

> can be answered there and it's very interesting reading.

[Guest guest]

What is SVR?

However, I'm really beginning to see lots of people with 1b

> who are having a SVR with Pegasys and ribavirin, even those who

> didn't respond to other treatments!