Re: Just joined..

[Guest guest]

I'm too new to Lex to know what will affect it and what won't but I wanted

to share something a doctor told me awhile back. I was taking paxil and had

good days and bad days still so thought I needed a higher dose. The doctor

explained to me that the paxil wasn't meant to make my life *perfect* and

that I'd still have up and down days.....just wouldn't be in a constant

state of *dread* or having only *down* days.

It's quite possible though that going to 15 mgs. will help you and you might

need a different dose if you are still feeling anxious and crappy

constantly.....it does sound like you've been through a lot. Everybody's

different! I hope the doctor can come up with what's best for you....

Take care,

Cyndi

On 10/9/06, alison <sayonarabeat@...> wrote:

>

> hi, i just joined this list.

>

> i started taking 10mg about 2 months ago. i experienced a few weeks of

> feeling " good " ,

> but lately i am feeling anxious and sorta crappy again. i have been

> through a lot this year

> and my girlfriend relapsed with leukemia and had a bone marrow transplant

> and i have

> been through a lot of stress.

>

> my doctor recommended taking vitamins, but im not sure if its messing with

> my

> medication. anyone go through a good and then sorta numb period about

> starting this

> medication? my doctor told me to take 15mg and i will be seeing her

> shortly to figure out

> what my next step is.

>

> please write, thanks!

>

>

>

[Guest guest]

I take several vitamins with my lexapro. I suggest

that you talk to a pharmacist about which vitamin is

safe to take. I wanted to use the one that is suppose

to help with memory but the pharm. said I couldn't ( i

forgot to ask why) but I could take a combination of

vitamin B (which was suggested by someone on an

earlier email)I think that's suppose to help with the

energy level. I do feel a bit better since taking it.

ak

--- alison <sayonarabeat@...> wrote:

> hi, i just joined this list.

>

> i started taking 10mg about 2 months ago. i

> experienced a few weeks of feeling " good " ,

> but lately i am feeling anxious and sorta crappy

> again. i have been through a lot this year

> and my girlfriend relapsed with leukemia and had a

> bone marrow transplant and i have

> been through a lot of stress.

>

> my doctor recommended taking vitamins, but im not

> sure if its messing with my

> medication. anyone go through a good and then sorta

> numb period about starting this

> medication? my doctor told me to take 15mg and i

> will be seeing her shortly to figure out

> what my next step is.

>

> please write, thanks!

>

>

>

>

>

[Guest guest]

Have you discussed Remicaid? My daughter is not systemic, but from my

knowledge remicaid works well on kids that are systemic. I also

understand that the kineret shots are very painful, much more so than

the methotrexate. I would search for an answer that isn't quite so

evasive first, and see if there could be another answer. Just my 2

cents.

and Allie (10 poly)

________________________________

From: [mailto: ] On

Behalf Of Ask me when I know you better.

Sent: Tuesday, March 06, 2007 8:53 AM

Subject: Just joined..

Hi everyone. My name is Jalyn and I am the mother of an 8 year old

daughter, , who is systemic jra since age 5. i hope to find

friendship here and advice, support and medical knowledge.

started her jra in December of 2004 and was not " officially "

diagnosed until July 2005. She was put on steroid " prednisone "

temporarily until December and methotrexate in August that year and

rapidly did wonderful until July of last year 2006 when she was doing

so well that we were going to start tapering her off her meds. Well

she flared again and has been in it ever since. She got switched to

injections of the methotrexate and it no longer seems to work. She is

also on 2 Aleve a day as well as the folic acid. It's just not working

for her anymore. Her rheumatologist has suggested Kineret which is a

daily injection as you know as opposed to the once weekly shot she's on

now. I just want my daughter to be able to function, a feeling i'm

sure many of you share. Anyway, this was just my way of introduction.

I hope to be able to find good friends here.

Thanks for allowing me to join.

Jalyn G. (, 8, systemic jra)

[Guest guest]

Hi, Jalyn and welcome. Sorry to hear of your daughter's struggles. I do

not have experience with Kineret; my son was on MTX and did quite well

with it. Just wanted to say Hi and let you know you have found a great

support system here. Ask any questions and vent whenever you need to,

Michele ( 19, spondy)

________________________________

From: [mailto: ] On

Behalf Of Ask me when I know you better.

Sent: Tuesday, March 06, 2007 8:53 AM

Subject: Just joined..

Hi everyone. My name is Jalyn and I am the mother of an 8 year old

daughter, , who is systemic jra since age 5. i hope to find

friendship here and advice, support and medical knowledge.

started her jra in December of 2004 and was not " officially "

diagnosed until July 2005. She was put on steroid " prednisone "

temporarily until December and methotrexate in August that year and

rapidly did wonderful until July of last year 2006 when she was doing

so well that we were going to start tapering her off her meds. Well

she flared again and has been in it ever since. She got switched to

injections of the methotrexate and it no longer seems to work. She is

also on 2 Aleve a day as well as the folic acid. It's just not working

for her anymore. Her rheumatologist has suggested Kineret which is a

daily injection as you know as opposed to the once weekly shot she's on

now. I just want my daughter to be able to function, a feeling i'm

sure many of you share. Anyway, this was just my way of introduction.

I hope to be able to find good friends here.

Thanks for allowing me to join.

Jalyn G. (, 8, systemic jra)

[Guest guest]

Hi Jalyn,

I am a veteran of systemic JRA, as my daughter is in her eighth year

of systemic. We are pretty new to Kineret though. n is on her

second month of kineret. She had been on enbrel for two years, but

her quality of life just wasn't as good as we wanted so we switched.

Here are a couple of observations that I have about the kineret.

Yes, it hurts. We ice the area before and after. n listens to

her Ipod for distraction and then does relaxation breathing for the

pain of the shot. When we first started with the kineret, it seemed

to really hurt for 3-5 minutes. I would say that it hurts like a

yellow jacket sting. It now hurts bad for about 45-60 seconds, and

then she is on her way. There is a 71% site reaction rate, but we

haven't had any problems with that. We have tried different areas

for the injection, but she says the stomach is the least painful.

I have seen her energy improve, but it has not put her into

remission. Her joints still bother her, but I don't know about the

swelling. She is 18 and won't share that with me. I know that

kineret can be a wonder drug for some systemics. I hope this helps.

(n, 18, systemic)

On Mar 6, 2007, at 6:53 AM, Ask me when I know you better. wrote:

> Hi everyone. My name is Jalyn and I am the mother of an 8 year old

> daughter, , who is systemic jra since age 5. i hope to find

> friendship here and advice, support and medical knowledge.

> started her jra in December of 2004 and was not " officially "

> diagnosed until July 2005. She was put on steroid " prednisone "

> temporarily until December and methotrexate in August that year and

> rapidly did wonderful until July of last year 2006 when she was doing

> so well that we were going to start tapering her off her meds. Well

> she flared again and has been in it ever since. She got switched to

> injections of the methotrexate and it no longer seems to work. She is

> also on 2 Aleve a day as well as the folic acid. It's just not working

> for her anymore. Her rheumatologist has suggested Kineret which is a

> daily injection as you know as opposed to the once weekly shot

> she's on

> now. I just want my daughter to be able to function, a feeling i'm

> sure many of you share. Anyway, this was just my way of introduction.

> I hope to be able to find good friends here.

>

> Thanks for allowing me to join.

>

> Jalyn G. (, 8, systemic jra)

>

>

>

[Guest guest]

Hi Jalyn,

Welcome to the group. Sorry to hear that your daughter is flaring

again, and that you are looking to add or switch meds. My daughter's

rheumy gave us the choice of Enbrel or Remicade before looking at

Kineret? Have you looked into those at all? My daughter's labs

aren't horrible, and she isn't dealing with high fevers and rashes

consistently, but her joints are very swollen. I don't know what

your daughter is dealing with, but I think Enbrel works on the joints

more than the " systemic " features(?), so that may be why they

recommend it for my daughter vs. the Kineret. I don't really know

for sure, but adding a once weekly shot to her mtx shot seems a lot

easier (if it will work) than adding a painful daily shot. Just my

thoughts...

((hugs))

Tracey and Madi 2yr systemic

>

> Hi everyone. My name is Jalyn and I am the mother of an 8 year old

> daughter, , who is systemic jra since age 5. i hope to find

> friendship here and advice, support and medical knowledge.

> started her jra in December of 2004 and was not " officially "

> diagnosed until July 2005. She was put on steroid " prednisone "

> temporarily until December and methotrexate in August that year and

> rapidly did wonderful until July of last year 2006 when she was

doing

> so well that we were going to start tapering her off her meds.

Well

> she flared again and has been in it ever since. She got switched

to

> injections of the methotrexate and it no longer seems to work. She

is

> also on 2 Aleve a day as well as the folic acid. It's just not

working

> for her anymore. Her rheumatologist has suggested Kineret which is

a

> daily injection as you know as opposed to the once weekly shot

she's on

> now. I just want my daughter to be able to function, a feeling i'm

> sure many of you share. Anyway, this was just my way of

introduction.

> I hope to be able to find good friends here.

>

> Thanks for allowing me to join.

>

> Jalyn G. (, 8, systemic jra)

>

[Guest guest]

Jalyn,

You will definitely find support here!!! Everyone is very nice and always

willing to help. If you need to vent they will listen and if you have a question

they will try to answer it. If you just feel like freaking out about something

they can help with that also. (Trust me...I do that alot!! ) Anyway, hope all

goes well for you and for .--- & Elaney(12 JRA, heart defects,

scoliosis) & Elyssa(8 Tourette's Syndrome)---Yes, we have alot of issues in our

family which is why I tend to freak out so often! :-)

" Ask me when I know you better. " <jalgon74@...> wrote:

Hi everyone. My name is Jalyn and I am the mother of an 8 year old

daughter, , who is systemic jra since age 5. i hope to find

friendship here and advice, support and medical knowledge.

started her jra in December of 2004 and was not " officially "

diagnosed until July 2005. She was put on steroid " prednisone "

temporarily until December and methotrexate in August that year and

rapidly did wonderful until July of last year 2006 when she was doing

so well that we were going to start tapering her off her meds. Well

she flared again and has been in it ever since. She got switched to

injections of the methotrexate and it no longer seems to work. She is

also on 2 Aleve a day as well as the folic acid. It's just not working

for her anymore. Her rheumatologist has suggested Kineret which is a

daily injection as you know as opposed to the once weekly shot she's on

now. I just want my daughter to be able to function, a feeling i'm

sure many of you share. Anyway, this was just my way of introduction.

I hope to be able to find good friends here.

Thanks for allowing me to join.

Jalyn G. (, 8, systemic jra)

---------------------------------

Now that's room service! Choose from over 150,000 hotels

in 45,000 destinations on Travel to find your fit.

[Guest guest]

not to freak you out, but our Dr. never recommended such doses of prednisone. 

We were told just 1-2 doses in total. 

 Regards,

Nick Handrinos

[Guest guest]

not to freak you out, but our Dr. never recommended such doses of prednisone. 

We were told just 1-2 doses in total. 

 Regards,

Nick Handrinos

[Guest guest]

not to freak you out, but our Dr. never recommended such doses of prednisone. 

We were told just 1-2 doses in total. 

 Regards,

Nick Handrinos

[Guest guest]

Hi Teja,

It seems like someone on the board once mentioned a compound pharmacist who made

a motrin/ibuprofen suppository for her child, so you might search the past

messages for this posting. I haven't explored this option yet for my 9 year old

who has , but I'm planning on looking into it. When my daughter had

terrible strep a few weeks ago, I crushed a throat lozenge in a baggie, and she

was able to put the tiny pieces in her mouth, but the tylenol suppositories were

probably the biggest help.

By the way, we just started cimetidine for my son, and he hasn't had any adverse

reactions to it. His cycle was interrupted by strep, so I don't know yet if this

medicine will work. We haven't used prednisone because he has had an adverse

reaction before. We also changed his diet (a gluten dairy free diet) and his

episodes have since been milder.

Best wishes,

Ethan, 9 years old, fevering since January 2008

[Guest guest]

Thanks!

We (and the Dr.) now know that we could have stopped the med after the

fever was down, but I didn't know any better at the time. I was on

vacation and so I did what was recommended. I was glad then to be able

to continue our week of fun, although my son was a happy grouch for

three days! With the fever returning once we got home, I am not willing

to do that treatment again any time soon. Has the 1-2 doses shown less

likelihood of the fever returning so quickly? I thought I would have

had more time to research, and of course, I just learned of this group!

This fever we let it go it's course, next time, I don't know????

Teja

[Guest guest]

Teja -

If you discontinue using prednisone, the fevers should spread out again. We

used prednisone for 2 or 3 episodes and fevers were very close together. Once

we stopped using it, the fevers gradually spread out and are now 6 weeks apart.

BTW - I have read from people who have continued to use prednisone that the

fevers usually spread out again over time also, but I'm not sure how long that

takes since we did not decide to continue the prednisone treatment. As a side

note, due to stomach irritation, we put our daughter on a wheat and dairy free

diet and since then, fevers have seemed milder (1-2 day episodes of low-grade

fever, every 6 weeks). We don't know if this is linked or not, but interesting

to read that this happened to someone else as well!

- Mandy

>

> I have just bean reading messages and can see that this site will be so

helpful to me!! Thank you.

> I have a 19 month old son recently DX with . He had his first fever last

March, but after his 4th in July he had a hiatus until this March. (We had moved

from CT to Northern CA) He did have colds and high fevers with a few ear

infections in that time period, but we thought the mystery was over. Luckily

our Pediatrician group has had another child with and we started thinking

this was what he was suffering from when he got #5. Three weeks later while on

vacation he got another fever and the Dr. sent us a Rx for the Prednazone. We

started the 1st day of fever, 2X a day for 3 days. It stopped the fever after

the 1st dose (sooo happy!) but his manic mood was hard to take. I was told by

the Dr. that in some cases the steriod has made the fever more frequent, but I

was optimistic. Unfortunately, 1 1/2 weeks later we are in day 3 of fever again.

We are not medicating again, of course. Anyone know if it will now always be

more frequent or just this one time? So, I am just starting to read about the

different treatment options. My husband is very against daily medication, but I

am open if the side effects aren't worse than the fever (ie. steriod). Can the

meds be used intermittently? My son doesn't seem to be on any kind of clockwork

schedule (when does that happen?) Any suggestions re. homeopathic treatment?

Also, my son is refusing Motrin-gags just seeing us approach. My dh and I have

to hold him down-torture! We usually use both Motrin and

acetaminophen(suppository this time) to manage the fever. If he is kept

at/under 102 he seems to be able to play and " be himself " . One alone doesn't do

it. Any suggestions on how to get the motrin dose into him? We even tried

putting it in chocolate syrup, but this is the 1st time he has a throat

ulceration, so he also is not eating (he has vomited the first two nights). He

refused the chocolate! He refuses ice pops! Can you tell me how long his throat

will hurt? In the past he started eating again by today?

> I obviously need to spend some time reading, it's good to know we are not

alone in this!

> Thanks, Teja

[Guest guest]

hi Voo1966 and welcome... unlike Knighthaak, my son has had a posivite result

using the predinsone... but here in australia we call it predimix.. still

samething dose of steriods.. my son almost 2 cycle was 14 days since may08.. we

just started steriod dose in Feb09 it actually spaced his cycle out to 19 days..

for the last 3 cycles.. we are now on day 20 waiting for the next one.... it has

also seemed to have brought his temp down a lot..we are only getting low grade

temps...but if this pattern contuies we have been asked to consider putting him

on Singular.. as for his age were told it has the least side effects out of

treatments recommened.. We already put our son on powerful meds... for 6 mths

and that totally changed him.... we have him back to normal now. and are praying

that he still reacts to the steriods. like most kids on something so long the

become immune to it...Good luck finding what treatment is right for your

child... now you know you are not the only ones dealing with this it makes it

easier to keep fighting for a solution to hopefully get to the bottom of what

causes it...

[Guest guest]

hi Voo1966 and welcome... unlike Knighthaak, my son has had a posivite result

using the predinsone... but here in australia we call it predimix.. still

samething dose of steriods.. my son almost 2 cycle was 14 days since may08.. we

just started steriod dose in Feb09 it actually spaced his cycle out to 19 days..

for the last 3 cycles.. we are now on day 20 waiting for the next one.... it has

also seemed to have brought his temp down a lot..we are only getting low grade

temps...but if this pattern contuies we have been asked to consider putting him

on Singular.. as for his age were told it has the least side effects out of

treatments recommened.. We already put our son on powerful meds... for 6 mths

and that totally changed him.... we have him back to normal now. and are praying

that he still reacts to the steriods. like most kids on something so long the

become immune to it...Good luck finding what treatment is right for your

child... now you know you are not the only ones dealing with this it makes it

easier to keep fighting for a solution to hopefully get to the bottom of what

causes it...

[Guest guest]

hi Voo1966 and welcome... unlike Knighthaak, my son has had a posivite result

using the predinsone... but here in australia we call it predimix.. still

samething dose of steriods.. my son almost 2 cycle was 14 days since may08.. we

just started steriod dose in Feb09 it actually spaced his cycle out to 19 days..

for the last 3 cycles.. we are now on day 20 waiting for the next one.... it has

also seemed to have brought his temp down a lot..we are only getting low grade

temps...but if this pattern contuies we have been asked to consider putting him

on Singular.. as for his age were told it has the least side effects out of

treatments recommened.. We already put our son on powerful meds... for 6 mths

and that totally changed him.... we have him back to normal now. and are praying

that he still reacts to the steriods. like most kids on something so long the

become immune to it...Good luck finding what treatment is right for your

child... now you know you are not the only ones dealing with this it makes it

easier to keep fighting for a solution to hopefully get to the bottom of what

causes it...

[Guest guest]

Hi,

I also just joined. We recently had our 6 yr old son diagnosed with

. It's a relief after all these years of not knowing. He used to have

flare-ups every other month then last summer it went to monthly. They

lasted from 4 to 7 days, getting longer as time went on.

He would have high temps.. 104+ and severe headaches, swollen glands, sore

throat, and mouth sores. Now that he is on the prednisone, his fiare ups

are spaced out more and he never goes above 101. I am assuming this is

due to the steroids. He also is fine after the first dose. It's amazing.

Is this the norm?

While I am not thrilled about the steriods, it's better than having him

sick for a week and missing all that school and feeling horid.

I'm so glad to have found a group like this!!!

in Tucson

**************Why pay full price? Check out this month's deals on the new

AOL Shopping. (http://shopping.aol.com/?ncid=emlcntinstor00000001)

[Guest guest]

Hi,

I also just joined. We recently had our 6 yr old son diagnosed with

. It's a relief after all these years of not knowing. He used to have

flare-ups every other month then last summer it went to monthly. They

lasted from 4 to 7 days, getting longer as time went on.

He would have high temps.. 104+ and severe headaches, swollen glands, sore

throat, and mouth sores. Now that he is on the prednisone, his fiare ups

are spaced out more and he never goes above 101. I am assuming this is

due to the steroids. He also is fine after the first dose. It's amazing.

Is this the norm?

While I am not thrilled about the steriods, it's better than having him

sick for a week and missing all that school and feeling horid.

I'm so glad to have found a group like this!!!

in Tucson

**************Why pay full price? Check out this month's deals on the new

AOL Shopping. (http://shopping.aol.com/?ncid=emlcntinstor00000001)

[Guest guest]

Hi,

I also just joined. We recently had our 6 yr old son diagnosed with

. It's a relief after all these years of not knowing. He used to have

flare-ups every other month then last summer it went to monthly. They

lasted from 4 to 7 days, getting longer as time went on.

He would have high temps.. 104+ and severe headaches, swollen glands, sore

throat, and mouth sores. Now that he is on the prednisone, his fiare ups

are spaced out more and he never goes above 101. I am assuming this is

due to the steroids. He also is fine after the first dose. It's amazing.

Is this the norm?

While I am not thrilled about the steriods, it's better than having him

sick for a week and missing all that school and feeling horid.

I'm so glad to have found a group like this!!!

in Tucson

**************Why pay full price? Check out this month's deals on the new

AOL Shopping. (http://shopping.aol.com/?ncid=emlcntinstor00000001)

[Guest guest]

Hi Teja,

There are a few posts here about how reduced Prednisone dosages have actually

spread cycles out(while also lessening the adverse effects on behavior, etc). I

know Ginger posted a message a few times about dosages so you can do a search on

that. We did a one time dose and kept lowering it so we'd use the least amount

possible. Our Dr told us if we continued to use it we'd start spacing out again.

In terms of daily meds, we use Cimetidine and have been very fortunate with the

results. It has been one of the best things to happen to us since the fevers

began. It's not successful for all, but it's a common first course of action.

May be worth discussing with your Dr.

Best,

Vivian

[Guest guest]

Hi Teja,

There are a few posts here about how reduced Prednisone dosages have actually

spread cycles out(while also lessening the adverse effects on behavior, etc). I

know Ginger posted a message a few times about dosages so you can do a search on

that. We did a one time dose and kept lowering it so we'd use the least amount

possible. Our Dr told us if we continued to use it we'd start spacing out again.

In terms of daily meds, we use Cimetidine and have been very fortunate with the

results. It has been one of the best things to happen to us since the fevers

began. It's not successful for all, but it's a common first course of action.

May be worth discussing with your Dr.

Best,

Vivian

[Guest guest]

Hi Teja,

There are a few posts here about how reduced Prednisone dosages have actually

spread cycles out(while also lessening the adverse effects on behavior, etc). I

know Ginger posted a message a few times about dosages so you can do a search on

that. We did a one time dose and kept lowering it so we'd use the least amount

possible. Our Dr told us if we continued to use it we'd start spacing out again.

In terms of daily meds, we use Cimetidine and have been very fortunate with the

results. It has been one of the best things to happen to us since the fevers

began. It's not successful for all, but it's a common first course of action.

May be worth discussing with your Dr.

Best,

Vivian

[Guest guest]

Hello!

Since joining, I am addicted to this site! I have so many questions,

but since I am sure they are repeats, I am now consumed with searching

the archives first. We did not medicate my son's last fever which ended

last Saturday. I have this feeling of " what now " . I feel like we have

to see if they space out again after the one set of prednisone tx.

To , how long have you used the steriod? Were the fevers close

together in the beginning and spread out, as has been suggested?

Did/does your son have mood alteration with the steriod? How did you

experiment with getting the dose just right? I hope to have a better

grip on this before my son begins school. It seems complicated at this

point!

So many questions, more to come...

Teja

[Guest guest]

Hello!

Since joining, I am addicted to this site! I have so many questions,

but since I am sure they are repeats, I am now consumed with searching

the archives first. We did not medicate my son's last fever which ended

last Saturday. I have this feeling of " what now " . I feel like we have

to see if they space out again after the one set of prednisone tx.

To , how long have you used the steriod? Were the fevers close

together in the beginning and spread out, as has been suggested?

Did/does your son have mood alteration with the steriod? How did you

experiment with getting the dose just right? I hope to have a better

grip on this before my son begins school. It seems complicated at this

point!

So many questions, more to come...

Teja

[Guest guest]

Hello!

Since joining, I am addicted to this site! I have so many questions,

but since I am sure they are repeats, I am now consumed with searching

the archives first. We did not medicate my son's last fever which ended

last Saturday. I have this feeling of " what now " . I feel like we have

to see if they space out again after the one set of prednisone tx.

To , how long have you used the steriod? Were the fevers close

together in the beginning and spread out, as has been suggested?

Did/does your son have mood alteration with the steriod? How did you

experiment with getting the dose just right? I hope to have a better

grip on this before my son begins school. It seems complicated at this

point!

So many questions, more to come...

Teja