Update on

[Guest guest]

Hi Jane,

was maxed out on Ibuprofin,Plaquenil and MTX before starting Enbrel.He had a refractory left ankle that nothing would touch but steroids.Before Enbrel his lft ankle was turned completely inward and we had just bought him a Pogan Buggy to push him around in.As long as the steroid dose was high enough he felt pretty good.

Enbrel is 2 shots a week but the med doesn't burn going in.

Another thing,s labs were totaly messed up before Enbrel,as those astricks beside everything.His first labs after starting Enbrel they were normal and have been ever since.

Again good luck

Becki and 5systemic

[Guest guest]

Hi Jane,

While we don't have any personal experience with any of those newer

meds, I just wanted to take a moment to wish you the very best of luck

as you begin to make decisions about which course of treatment might be

best for . I'm so sorry that he's having these problems with his

hips now. I remember when he was very sick with the systemic symptoms

and once he started heading towards remission I had really hoped that

his improvements meant the arthritis was inactive and things would

remain stable. This must be very difficult for the family.

You are in our thoughts,

Georgina

Jitz45@... wrote:

> Hello everyopne just got back from the pedi rheimy. I brought s

> xrays (RYan is 12 has had systemic jra since age 6) he thinks has

> eith avascular necrosis of the right hip or degenerative arthritis.

> needs the radiologist to look at exray. he said we need to treat s

> arthritis more aggressivley. we are now giving him methotrxate by mouth

> ( tonight will be his 4th week on it. he wants to switch to enbrel

> injections and eith enbrel, humira or remicade infusions once a month.

> he said if we don't do this and treat more aggresivley he will end up

> with a hip repacement down thw road. anyone with a child on any of these

> drugs that can give me feedback ? i have a video to watch on humirA AND

> LOADS OF BOOKLETS ON ENBREL AND REMICADE. DON'T KNOW WHICH WAY TO TURN..

> ANY INFO APPRECIATED,, JANE

[Guest guest]

Georgina:

I am sitting here with tears in my eyes reading that is down to 1

mg. I will keep fingers, toes and everything else crossed that he comes

off successfully and the increased MTX controls everything well. We are

all rooting for him!

and Rob 14 Spondy

On Sat, 31 Jan 2004 11:58:54 -1000 Georgina <gmckin@...> writes:

> Hi,

>

> Josh had his rheumatology appointment yesterday. It was an afternoon

>

> appt instead of a morning one. If he had been to school, I was

> planning

> on picking him up for early dismissal and he would have missed just

> PE

> class but instead he was out for the whole day. Sore throat, achy

> muscles, stuffy ears. He appears to have caught a cold. As usual, it

>

> makes him feel really " under the weather. " As I type this, he's

> still

> sleeping. Woke up, ate a light breakfast, took his medicine, and

> then

> went right back to sleep on the couch. Several hours ago!

>

> Anyway, as of today he is taking just 1mg of prednisone a day. For

> those

> who have followed along with our story since we first went online in

>

> 1996 ... you know that this is the realization of a huge goal. Well,

> I

> guess ALL of you know that, by now. The one constant refrain in my

> postings has always been, " We need to taper the prednisone dose. "

> So, we

> finally have reached that point.

>

> The only other change we're making at this time is that we are

> increasing 's Methotrexate dose again, hoping that maybe that

> will

> help take care of his increased arthritis activity. He'll be going

> back

> to weekly injections again. He was given the option of taking the

> pills

> every other week (since he doesn't like injections) but he does not

> want

> to deal with the side effects from the oral dose, which were worse

> for

> him and lasted longer, than the milder side effects from the shots.

>

> Hopefully that will be enough to get everything back under control.

>

> Doctor did mention the possibility of Enbrel again. Seemed to like

> that

> idea better than a joint injection, which he didn't sound too

> optimistic

> about. Said the results might be effective or might not be and might

>

> last just a few weeks versus perhaps getting good control with

> regular

> maintenance from the Enbrel. Josh is willing to work with more MTX

> and

> see if that takes care of things first. Hopefully it will. Again. If

>

> not, maybe we'll have to look towards the biologicals. He also

> mentioned

> that Humira might be a future alternative/possibility. So we'll just

>

> have to see how things go, for now.

>

> I guess that's about it. Back to reading again. I still have lots of

>

> catching up to do.

>

> Take Care,

> Georgina

>

>

>

>

>

>

[Guest guest]

Great news, Georgina.

My brother moved from enbrel to humira, and is finally getting some relief after four years. He doesn't have any side effects to my knowledge. There is some talk that you may need to double up on the humira shots, which means double the money.

Update on

Hi,Josh had his rheumatology appointment yesterday. It was an afternoon appt instead of a morning one. If he had been to school, I was planning on picking him up for early dismissal and he would have missed just PE class but instead he was out for the whole day. Sore throat, achy muscles, stuffy ears. He appears to have caught a cold. As usual, it makes him feel really "under the weather." As I type this, he's still sleeping. Woke up, ate a light breakfast, took his medicine, and then went right back to sleep on the couch. Several hours ago!Anyway, as of today he is taking just 1mg of prednisone a day. For those who have followed along with our story since we first went online in 1996 ... you know that this is the realization of a huge goal. Well, I guess ALL of you know that, by now. The one constant refrain in my postings has always been, "We need to taper the prednisone dose." So, we finally have reached that point.The only other change we're making at this time is that we are increasing 's Methotrexate dose again, hoping that maybe that will help take care of his increased arthritis activity. He'll be going back to weekly injections again. He was given the option of taking the pills every other week (since he doesn't like injections) but he does not want to deal with the side effects from the oral dose, which were worse for him and lasted longer, than the milder side effects from the shots. Hopefully that will be enough to get everything back under control.Doctor did mention the possibility of Enbrel again. Seemed to like that idea better than a joint injection, which he didn't sound too optimistic about. Said the results might be effective or might not be and might last just a few weeks versus perhaps getting good control with regular maintenance from the Enbrel. Josh is willing to work with more MTX and see if that takes care of things first. Hopefully it will. Again. If not, maybe we'll have to look towards the biologicals. He also mentioned that Humira might be a future alternative/possibility. So we'll just have to see how things go, for now.I guess that's about it. Back to reading again. I still have lots of catching up to do.Take Care,Georgina

[Guest guest]

Hi Georgina:

What wonderful news! I hope the taper is a success.

I am sure you have told me, but in case I haven't asked, what side effects

did your son have from the oral dose of MTX vs. the injectable dose? I hope

this gets everything back under control.

Take care.

Patty

[Guest guest]

Hi Georgina,

First let me say WHOO HOO on the 1mg pred.That is awesome.

Sorry that Josh has a cold.I hope things get better soon and don't exasberate the arthritis for to long.I know thats always been a problem for Josh.Hopefuly going back to 1x weekly shots of MTX will help his wrists and the rest of the steroid tapers will be succesful.

Many prayers being sent your way.

Love and Hugs

Becki and 5 systemic

[Guest guest]

Hi Everyone,

Thanks, , and everyone else too, of course, who wrote in with their

well-wishes regarding 's appt this past Friday. We're very excited

about the steroid reduction, as you might imagine! And hopefully the

increased dose of MTX, weekly again, will be enough to calm everything

down ... especially 's wrists.

Hopefully I'll have a chance to get back on the computer this evening.

Till next time ...

Take Care,

Georgina

wrote:

> Georgina,

>

> So glad about the Pred. reduction!!!

>

> Hope the MTX & possibly Enbrel help you to get past

> that hump.

> Prayers are with you.

>

> [ & Skyler, 6 Stills]

[Guest guest]

Hi n,

Thanks for the heads up about your brother's experience with Humira. I'm

hoping that, at least for now, the increased MTX will do the job. Even

though he was on a higher steroid dose previously, if it weren't for him

feeling so much better would have never had it decreased to every

other week. I'm just keeping my fingers crossed that it'll work as well

this time around as it did before and that Josh doesn't begin

complaining about it again.

Thanks,

Georgina

WILLIAM PRICE wrote:

> Great news, Georgina.

> My brother moved from enbrel to humira, and is finally getting some

> relief after four years. He doesn't have any side effects to my

> knowledge. There is some talk that you may need to double up on the

> humira shots, which means double the money.

[Guest guest]

I talked to my brother today and he really likes humira. His advice to anyone would be to skip over the enbrel and go straight to the humira. He has had unrelenting arthritis for five years, and this has been a lifesaver for him. cindy(n, 15systemic)

Re: Update on

Hi n,Thanks for the heads up about your brother's experience with Humira. I'm hoping that, at least for now, the increased MTX will do the job. Even though he was on a higher steroid dose previously, if it weren't for him feeling so much better would have never had it decreased to every other week. I'm just keeping my fingers crossed that it'll work as well this time around as it did before and that Josh doesn't begin complaining about it again.Thanks,GeorginaWILLIAM PRICE wrote:> Great news, Georgina. > My brother moved from enbrel to humira, and is finally getting some > relief after four years. He doesn't have any side effects to my > knowledge. There is some talk that you may need to double up on the > humira shots, which means double the money.

[Guest guest]

Hi, Georgina. Such great news about lowering the pred. He has come a

long way since I joined this list! Hooray for Josh. Sorry he is under

the weather at this point. Hopefully he will shake the cold quickly.

Good luck with the MTX increase. Michele (16,pauci & spondy)

Update on

Hi,

Josh had his rheumatology appointment yesterday. It was an afternoon

appt instead of a morning one. If he had been to school, I was planning

on picking him up for early dismissal and he would have missed just PE

class but instead he was out for the whole day. Sore throat, achy

muscles, stuffy ears. He appears to have caught a cold. As usual, it

makes him feel really " under the weather. " As I type this, he's still

sleeping. Woke up, ate a light breakfast, took his medicine, and then

went right back to sleep on the couch. Several hours ago!

Anyway, as of today he is taking just 1mg of prednisone a day. For those

who have followed along with our story since we first went online in

1996 ... you know that this is the realization of a huge goal. Well, I

guess ALL of you know that, by now. The one constant refrain in my

postings has always been, " We need to taper the prednisone dose. " So, we

finally have reached that point.

The only other change we're making at this time is that we are

increasing 's Methotrexate dose again, hoping that maybe that will

help take care of his increased arthritis activity. He'll be going back

to weekly injections again. He was given the option of taking the pills

every other week (since he doesn't like injections) but he does not want

to deal with the side effects from the oral dose, which were worse for

him and lasted longer, than the milder side effects from the shots.

Hopefully that will be enough to get everything back under control.

Doctor did mention the possibility of Enbrel again. Seemed to like that

idea better than a joint injection, which he didn't sound too optimistic

about. Said the results might be effective or might not be and might

last just a few weeks versus perhaps getting good control with regular

maintenance from the Enbrel. Josh is willing to work with more MTX and

see if that takes care of things first. Hopefully it will. Again. If

not, maybe we'll have to look towards the biologicals. He also mentioned

that Humira might be a future alternative/possibility. So we'll just

have to see how things go, for now.

I guess that's about it. Back to reading again. I still have lots of

catching up to do.

Take Care,

Georgina

[Guest guest]

Georgina,

I hope that by now the pred taper is still going well. Hopefully Josh will not be averse to the increased injections of mtx, and maybe enbrel. I have often wondered why the biologics had not been considered before for him, since he is one of the persistant ones.

Christy (Abbie, 14 systemic)

[Guest guest]

God bless you and God bless Nikki and . Things happen for a reason, I think you know that. Nikki is a gift from God to you that's for sure. You're one lucky Mum. I just know in my heart that this wedding is going to be a fairytale come true for all of you.

anne

(wishing she could be a fly on the wall)

[ ] update on

Hey guys,

Just thought I'd take a minute to thank everyone for all the kind words, prayers, and concern regarding my recent TIA. The 'shower' last weekend that Nikki's future in-laws had for Nikki and went well and they got a lot of nice gifts. Nikki's future in-laws could be a lot worse, it's just sometimes difficult because their family dynamics are so entirely different from ours. Nikki is doing quite well with handling things and I feel sure she and will weather any in-law difficulties (on either side) just fine. I'm the momma and I just have to worry and vent at times!

I have been so incredibly exhausted since getting out of the hospital Friday that I've basically just been a slug. I slept more in the last few days than I've slept in the last month or two! I finally started feeling better yesterday evening and today has been a pretty good day. I've got a doctor's appt tomorrow with my internal med doc. My mom is going to take me because I just don't really think I am up to driving.

Nikki and have been here all week. I had planned to do all kinds of wedding things this week, but I haven't done a thing. Nikki and took care of the things that had to be done and they managed fine without me. Nikki and I talked today and she told me that she thinks that she and I need to spend the day prior to the wedding mostly just resting until time for the rehearsal and rehearsal dinner. She told me that we have plenty of other people who have offered to help get all the decorations and stuff done and that she and I are just going to have to leave it to them, along with our wedding coordinator. She said that will be our last day for her to be 'my little girl' before she becomes a married woman and she wants to spend the day with just me and her. She said we'll go and get our nails done and a pedicure and we can pop in at the church and ballroom to see that everything is going okay, but other than that, she wants the two of us to just rest. I started crying as soon as she told me that. On the one hand, they were tears of gratitude because I knew what she was saying was absolutely correct and how it's got to be. There is no way that I can hold up to spending the entire day setting things up on Friday, be at the rehearsal, and then at the rehearsal dinner, then be at the church at noon on Saturday for the beautician to begin doing our hair. Ready for pictures to begin at 5 p.m. and the wedding ceremony at 7:30 p.m. The reception will last until midnight. I have been praying for God to somehow give me the energy to be able to do everything, but in reality I really knew it was not possible. Maybe that was the reason for the TIA.. Maybe I had to accept that I have just got to let other people take care of things for the wedding. However, part of my tears were because I want so very much to do everything myself. I have ALWAYS been able to make any special event in Nikki's life even more special. Her birthdays were always a very big deal, as was her high school graduation, and her engagement party. I did all of those for crowds of up to 100 people with little or no help. I really and truly wanted to be able to do at least most of the wedding stuff myself. However, I know that Nikki is right. She said that she doesn't even think she could hold up to spending the whole day Friday setting things up and then be able to hold up for the rehearsal, rehearsal dinner, wedding, and reception. When I cried and told Nikki that I knew she was right, but that I was sad because I really wanted to do it all myself, she hugged me and told me how much I have done already for the wedding and that it's because of all I've done already that she is going to have the wedding of her dreams and it will be absolutely wonderful even if she and I let other people take care of setting things up on the day before and day of the wedding. I'm sitting here crying like a baby right now and I don't really know if my tears are because I am so lucky to have such a remarkable daughter or if they are tears of sadness and acceptance that I can no longer handle doing as much as I once could. I guess the tears are both tears of love and joy for my sweet daughter and grieving over the things I have lost with the decline in my health. Most of the time I am able to smile and realize how very blessed I am. I have things so much better than many in spite of the health issues. However, there are days like today that I do have admit to myself that it's not always so easy to accept that I now have more limitations than I did a couple of years ago.

I'll be fine and I am so lucky that my daughter actually wants to have one last day as 'my little girl'. Of all the blessings in my life, and believe there are many, I honestly cannot believe I am so blessed to have such a remarkable daughter.

Well, enough, my contacts are now cloudy and my nose is running!

Please forgive me for still not being very active in the group.

Love to all,

[Guest guest]

Hi

The best gift you can give Nikki and yourself is to be there on the wedding day in great shape it will be a very emotional day and you will need all your strenth. You are a wonderful Mom and she is very lucky to have you and she is a special girl she understands your need and is not selfish. Go get your nails done and get a massage while you are at it and don't forget lot of klenex for the wedding.

Try to relax

in Montreal Weston <karenw@...> wrote:

Hey guys,

Just thought I'd take a minute to thank everyone for all the kind words, prayers, and concern regarding my recent TIA. The 'shower' last weekend that Nikki's future in-laws had for Nikki and went well and they got a lot of nice gifts. Nikki's future in-laws could be a lot worse, it's just sometimes difficult because their family dynamics are so entirely different from ours. Nikki is doing quite well with handling things and I feel sure she and will weather any in-law difficulties (on either side) just fine. I'm the momma and I just have to worry and vent at times!

I have been so incredibly exhausted since getting out of the hospital Friday that I've basically just been a slug. I slept more in the last few days than I've slept in the last month or two! I finally started feeling better yesterday evening and today has been a pretty good day. I've got a doctor's appt tomorrow with my internal med doc. My mom is going to take me because I just don't really think I am up to driving.

Nikki and have been here all week. I had planned to do all kinds of wedding things this week, but I haven't done a thing. Nikki and took care of the things that had to be done and they managed fine without me. Nikki and I talked today and she told me that she thinks that she and I need to spend the day prior to the wedding mostly just resting until time for the rehearsal and rehearsal dinner. She told me that we have plenty of other people who have offered to help get all the decorations and stuff done and that she and I are just going to have to leave it to them, along with our wedding coordinator. She said that will be our last day for her to be 'my little girl' before she becomes a married woman and she wants to spend the day with just me and her. She said we'll go and get our nails done and a pedicure and we can pop in at the church and ballroom to see that everything is going okay, but other than

that, she wants the two of us to just rest. I started crying as soon as she told me that. On the one hand, they were tears of gratitude because I knew what she was saying was absolutely correct and how it's got to be. There is no way that I can hold up to spending the entire day setting things up on Friday, be at the rehearsal, and then at the rehearsal dinner, then be at the church at noon on Saturday for the beautician to begin doing our hair. Ready for pictures to begin at 5 p.m. and the wedding ceremony at 7:30 p.m. The reception will last until midnight. I have been praying for God to somehow give me the energy to be able to do everything, but in reality I really knew it was not possible. Maybe that was the reason for the TIA.. Maybe I had to accept that I have just got to let other people take care of things for the wedding. However, part of my tears were because I want so very much to do everything myself. I have

ALWAYS been able to make any special event in Nikki's life even more special. Her birthdays were always a very big deal, as was her high school graduation, and her engagement party. I did all of those for crowds of up to 100 people with little or no help. I really and truly wanted to be able to do at least most of the wedding stuff myself. However, I know that Nikki is right. She said that she doesn't even think she could hold up to spending the whole day Friday setting things up and then be able to hold up for the rehearsal, rehearsal dinner, wedding, and reception. When I cried and told Nikki that I knew she was right, but that I was sad because I really wanted to do it all myself, she hugged me and told me how much I have done already for the wedding and that it's because of all I've done already that she is going to have the wedding of her dreams and it will be absolutely wonderful even if she and I let other people take care of setting things

up on the day before and day of the wedding. I'm sitting here crying like a baby right now and I don't really know if my tears are because I am so lucky to have such a remarkable daughter or if they are tears of sadness and acceptance that I can no longer handle doing as much as I once could. I guess the tears are both tears of love and joy for my sweet daughter and grieving over the things I have lost with the decline in my health. Most of the time I am able to smile and realize how very blessed I am. I have things so much better than many in spite of the health issues. However, there are days like today that I do have admit to myself that it's not always so easy to accept that I now have more limitations than I did a couple of years ago.

I'll be fine and I am so lucky that my daughter actually wants to have one last day as 'my little girl'. Of all the blessings in my life, and believe there are many, I honestly cannot believe I am so blessed to have such a remarkable daughter.

Well, enough, my contacts are now cloudy and my nose is running!

Please forgive me for still not being very active in the group.

Love to all,

[Guest guest]

,

Thank you. You are very right that my being in good shape for the wedding is much more important than me spending the day before the wedding working nonstop to see that everything is set up and decorated as we want. Once I accepted Nikki's suggestion, it was actually a relief because no matter how much I wanted to do it all, I really knew there was no way I could hold up to it! I am so blessed!

[Guest guest]

anne,

Thank you for your kind words. I am indeed one lucky lady! I am going to cherish spending the day with my daughter simply relaxing and enjoying the day on her last day as a single woman.

[Guest guest]

Kyla. Poor . Sounds like she does have JRA or something

closely resembling it. At your first appointment they will take a

look at all her joints to see swelling, range or motion, etc. They

will also do blood work to check her various labs. They should do x-

rays to rule of joint or organ damage. Then they will talk to you

about what medication options you have. It is very helpful! Are you

seeing a pediatrician currently? They should be able to prescribe

ibuprofen or naprosyn for you in the interim. The naprosyn takes a

few weeks to set in, but witht the ibuprofen it might help elevate

some of the pain until you see the doctor in a few weeks.

Let us know what happens and good luck!

Alia and Caroline, age 2, poly and uveitis

> Hi, i haven't posted in a while just staying busy working and

hubby

> was TDY for a couple of weeks. But If some of you remember us,

> is 4 and we have our 1st appt finally June 15 at UAB in

> Alabama to check taylor for JRA. Her fingers are really bad

swelled

> and can't bend them, seems they get worse everyday. But now our

new

> problem is that her right knee is swelled up really bad, and when

> she bends it, it has a huge knot on it that feels like there maybe

> fluid on it. The doctors here told me to put Capzasion (sp?) cream

> on it to numb it some but the poor child screamed in pain because

it

> was burning her!!!! I just hope we get the answers we are looking

> for in a couple of weeks. Does anyone know what the Docotr usually

> does for the 1st appointment? tests and things?

>

> thanks for the help ladies,

>

> Kyla mom to possible JRA

[Guest guest]

Hi Kyla-

Your daughter's knee sounds like Genevieve's did. Luckily her JRA has been

confined to the knees for now. Hers was stuck bent. She saw the rheumy for the

first time in January. Our pediatrician had already run an xray and is was

negative so the next steps for us were a run of blood tests. The most important

of these being a sed. rate which supposedly determines the amount of swelling

(I'm leary about how accurate that test really is based on how many children

" feel " in comparison to those numbers.), they also do an ANA (anti nucleur

antibody test). If the child has JRA and is ANA positive, they are at higher

risk for uveitis (eye inflammation) and a RF (rheumatoid factor) which may be

positive in systemic children. The blood work can not give a definitive

diagnosis. That is done by using the bloodwork as a guide and also ruling other

things out. Genevieve had an MRI done of her knee to rule out infection. Once

that was ruled out, the combo. of a high sed. rate, being ANA positive and her

physical symptoms were enough for a temporary diagnosis but I know it takes much

longer in many other children. The pediatric rheumatologists are really skilled

in being able to feel swelling/inflammation in the joints. A week later she was

diagnosed with uveitis and the rheumy felt this was enough to " clinch " the JRA

diagnosis. Genevieve was put on naproxen at our first rheumy appt. She recently

had a streroid injection in the knee which has worked wonders. We CAN'T beleive

how skinny her legs look now!!! :-) For now, maybe some over the counter

ibuprofen could give her a little relief? It may reduce the swelling a litle and

help with the pain until you see the dr.

I hope this help!

Good luck!

Therese

and Therese Z.

Genevieve (DOB 10/02/02)

Pauci (dx 1/16/04)

Uveitis (dx 1/27/04)

Update on

Hi, i haven't posted in a while just staying busy working and hubby

was TDY for a couple of weeks. But If some of you remember us,

is 4 and we have our 1st appt finally June 15 at UAB in

Alabama to check taylor for JRA. Her fingers are really bad swelled

and can't bend them, seems they get worse everyday. But now our new

problem is that her right knee is swelled up really bad, and when

she bends it, it has a huge knot on it that feels like there maybe

fluid on it. The doctors here told me to put Capzasion (sp?) cream

on it to numb it some but the poor child screamed in pain because it

was burning her!!!! I just hope we get the answers we are looking

for in a couple of weeks. Does anyone know what the Docotr usually

does for the 1st appointment? tests and things?

thanks for the help ladies,

Kyla mom to possible JRA

[Guest guest]

Kyla,

I would just repeat what the other two replies have said: ibuprofin

may help a lot and make your daughter feel better until you can get

to the appointment. You may also try soaking in a warm bath, which

is good for all of the swollen joints. I can't imagine any child

would appreciate having capsaicin cream on them -- it contains the

ingredient that makes hot peppers hot, so of course it burns. I know

of adults who won't use the stuff.

Good luck with everything. Hope feels better soon!

Elisheva

> Hi, i haven't posted in a while just staying busy working and

hubby

> was TDY for a couple of weeks. But If some of you remember us,

> is 4 and we have our 1st appt finally June 15 at UAB in

> Alabama to check taylor for JRA. Her fingers are really bad

swelled

> and can't bend them, seems they get worse everyday. But now our

new

> problem is that her right knee is swelled up really bad, and when

> she bends it, it has a huge knot on it that feels like there maybe

> fluid on it. The doctors here told me to put Capzasion (sp?) cream

> on it to numb it some but the poor child screamed in pain because

it

> was burning her!!!! I just hope we get the answers we are looking

> for in a couple of weeks. Does anyone know what the Docotr usually

> does for the 1st appointment? tests and things?

>

> thanks for the help ladies,

>

> Kyla mom to possible JRA

[Guest guest]

--Hi Emilie,

I sure hope things get better soon for . My son has systemic

JRA, and when he was very sick, he had chest pain, turns out it was

from an inflammed lung. He also had an enlarged heart at the time.

Good luck to you and your daughter.

Jodi, Bronson systemic, age 10

In , " HARRY SKIDMORE " <h.skidmore@w...>

wrote:

> Hi all...

>

> First off I would like to say Congratulations to being in

remission.. It's a goal we all hope for..

>

> Patty.. If you are headed to the Tilton/Lakes Region my mom is

realtor over there, if you want her contach info let me know..

>

> I got a call from Shriners today and they requested all of her

rheumy records and pediatrician records, so hopefully things are

moving in the right direction there. We go back to her Primary Docs

tomorrow to decided whether or not we want her back in school yet.

She is still extremely fatigued, pale and listless at times. She is

also starting to cough and run low grade fevers again. The pepcid

still helps the stomach pain a little, but it still hurts throughout

the day, along with the misc. muscle pains.. She had a pain in her

chest area today that she said felt like someone pounding on her

chest. It only lasted for about 2 minutes and then she was fine..

Does anyones kids have a history of heart palpitations along with

this disease? I am going to write down what problems she is having

for the doctors appt tomorrow... Maybe we can start to get some

answers..

>

> Hugs to everyone,

> Emilie and (5 Poly)

>

>

[Guest guest]

Hi, Beth, thanks for the update on . I am glad that they may have

figured out what is causing the pain. I can see the recommendation for

being checked, with the family history. What type of med is she on that

has caused the joint pain, if you don't mind me asking? Good luck,

Michele (18, pauci & spondy)

Update On

Hi!

I have been lurking since my first few posts as I waited for results

from 's visits to Shriner's. After going to two different doctors

at Shriner's they have found that there is no disease process at work

(full range of motion, no swelling, no tenderness and Sed rate, ANA and

RF all normal). They believe that her joint pain is a rare side effect

of her being on a specific medication for a long period of time (3 yrs

with one short break). We are now debating whether to take her off the

medication or not as we have had her off one other time and could not

find an effective replacement medication. The second doctor did

recommended having the Sed rate, ANA and RF done annually because there

is a small chance that is in the early stages of an autoimmune

disorder and because she is at high risk for autoimmune disorders due

to family history (Crohn's Disease, Arthritis due to Crohn's Disease,

Systemic Lupus Erythemtosis and Dermatomyositis).

Beth

9.10

[Guest guest]

Hi Beth,

Thanks for letting us know 's lab results. Good news that it's

not JRA and very smart to be on the lookout for anything autoimmune

related. I hope things continue to improve for her.

Stacia and Hunter 9 systemic, iritis

[Guest guest]

Michele,

The medication is Prozac.

Beth

> Hi, Beth, thanks for the update on . I am glad that they may

have

> figured out what is causing the pain. I can see the recommendation

for

> being checked, with the family history. What type of med is she on

that

> has caused the joint pain, if you don't mind me asking? Good luck,

> Michele (18, pauci & spondy)

>

> Update On

>

> Hi!

>

> I have been lurking since my first few posts as I waited for

results

> from 's visits to Shriner's. After going to two different

doctors

> at Shriner's they have found that there is no disease process at

work

> (full range of motion, no swelling, no tenderness and Sed rate, ANA

and

> RF all normal). They believe that her joint pain is a rare side

effect

> of her being on a specific medication for a long period of time (3

yrs

> with one short break). We are now debating whether to take her off

the

> medication or not as we have had her off one other time and could

not

> find an effective replacement medication. The second doctor did

> recommended having the Sed rate, ANA and RF done annually because

there

> is a small chance that is in the early stages of an autoimmune

> disorder and because she is at high risk for autoimmune disorders

due

> to family history (Crohn's Disease, Arthritis due to Crohn's

Disease,

> Systemic Lupus Erythemtosis and Dermatomyositis).

>

> Beth

> 9.10

>

>

>

>

>

>

>

>

[Guest guest]

Hi everyone -

I just heard from 's friend, Maureen. went in this morning right at

9:30 and Maureen was able to spend a little time with her in pre-op. She said

she was in a bit of pain but working hard to stay positive. She is now out of

her 2nd surgery. Earlier than expected too!So surgeries are now behind her and

Maureen said Dr. Glazer said that everything " went according to plan " with no

complications! Now she is on her way to recovery. I will pass along any other

info I receive.

D (RI)

[Guest guest]

Thanks Bee,

Yes he had diarreah before he started the program. Chronic diarreah from

antibiotic use along with fatigue, brainfog, muscle twitching etc is why he

started the program. The diarreah was basically under control before the

accident which seems to have set him right back for some reason. He had no

surgery nor did he take any antibiotics in hospital, he was on endone (strong

pain killer) for about a week and a half but has been off them now for 4 weeks.

He also refused a tetnus shot. The broken back is not causing us nearly as much

grief as all the gut issues.

Traci.

[Guest guest]

One other thing, we made chicken bone brioth using 2 T of ACV. However was

not able to tolerate it, it seems the bone broth with ACV caused him massive

bloating and tummy pain - which will no doubt cause more diorreah as well. He

seems ok with bone brith made without the ACV - any ideas?