Jump to content
RemedySpot.com

hello

Rate this topic


Guest guest

Recommended Posts

Hi ,

I am glad that you found our group. We do have a few other adults

on the list that also suffered with JRA and I really appreciate

their insight.

You mentioned that you had some joint replacements. I was wondering

if you still have to take medication and if so what kind?

Do you currently have any limitations or is it more residual

problems left over from the joint damage caused during your teen

years?

And lastly I was wondering if you have noticed any long term side

effects from any of the medications that you may have taken.

Thanks for finding our group and feel free to jump in and share at

any time!

God Bless,

(Aundrea 10 systemic jra)

-- In , " " <brileetay@a...>

wrote:

>

> Hello everyone. It has been many years since I have joined a

group

> and it was well before online groups were available. I am glad I

> found this group and it does look like this is an excellent group

of

> people from the posts I have read. I am hoping to share my

> experiences and to learn a little about others.

>

> I am now 35, but was first diagnosed with JRA when I was 12. I

live

> in ville, Indiana and went to Riley Hospital in Indianapolis

> after I was first diagnosed. In the early years of my disease,

the

> current thought of the day was to give as little medication as

> possible and work your way up to stronger meds as needed.

Needless

> to say I used to be in incredible pain and was in and out of the

> hospital a lot. I have had both knees and hips replaced 14 years

> ago. I have been through several surgeries and was the first

known

> case of nodules on my lungs. Feel free to ask me anything.

>

> I am now married to a wonderfull woman that takes acre of me and

we

> have 4 beautiful children. None of them have arthritis and I am

> thankfull.

>

> I would love to hear from all of you and I hope to share more

later.

>

Link to comment
Share on other sites

Hi ,

I am taking Enbrel now and it is wonderful. I was taking Humera and it

worked just as well, but the effects wore off after about 7 months and it was

only effective for a day or two. Before that I had a 4 year relieve from any

pain and medication. Now if I go off the Enbrel, I am barely able to walk.

My hands and feet are deformed, but my wrists are locked in the upright

position thanks to Dr. Passo and his recommendations for night splints. I can

still grasp most anything and have sufficient strength. My elbows do not bend

straight anymore, but they do not seem to be getting any worse and they are

functional.

As far as long term effects from medications, I have not really seen any. I

have been on Methotrexate, Gold, Humira, Prednisone, Hydrocodone, Plaquinil,

Trillisate, Arava, and probably some I don't remember, but none have had any

long term effects.

In a message dated 10/9/2005 10:04:55 A.M. Central Standard Time,

sonia1md@... writes:

Hi ,

I am glad that you found our group. We do have a few other adults

on the list that also suffered with JRA and I really appreciate

their insight.

You mentioned that you had some joint replacements. I was wondering

if you still have to take medication and if so what kind?

Do you currently have any limitations or is it more residual

problems left over from the joint damage caused during your teen

years?

And lastly I was wondering if you have noticed any long term side

effects from any of the medications that you may have taken.

Thanks for finding our group and feel free to jump in and share at

any time!

God Bless,

(Aundrea 10 systemic jra)

Link to comment
Share on other sites

Wow, and I thought I was the only one crazy enough to have 4 kids while

battling RA. I would love to come to some of the events. Keep me posted.

In a message dated 10/9/2005 11:01:43 A.M. Central Standard Time,

ajaoky@... writes:

Hi ! Welcome to the group, the best one on the net! My name is Donna

and

I live in Louisville, KY so we are practically neighbors. I have had JRA

since age 4 and have had several surgeries myself. I am married and I have 2

sons,

3 step-daughters and a 5 month old grandson. I am chairperson for the

American Juvenile Arthritis Organization of Kentuckiana ( including S.

Indiana ). We

would love to have you and your family join us at future events. If you

would

like more info please drop me a line.

Hugs and smiles to all!

Donna

Link to comment
Share on other sites

Thanks for sharing some of your story with us. I appreciate

your candor and insight and am glad that you have found our group!

Please always feel free to jump in and guide us parents as we make

our way thru this journey of raising kids with jra as well as glean

some support yourself from our adult members that have jra.

God Bless,

(aundrea 10 sjra)--

- In , brileetay@a... wrote:

>

>

> Hi ,

> I am taking Enbrel now and it is wonderful. I was taking Humera

and it

> worked just as well, but the effects wore off after about 7 months

and it was

> only effective for a day or two. Before that I had a 4 year

relieve from any

> pain and medication. Now if I go off the Enbrel, I am barely able

to walk.

>

> My hands and feet are deformed, but my wrists are locked in the

upright

> position thanks to Dr. Passo and his recommendations for night

splints. I can

> still grasp most anything and have sufficient strength. My elbows

do not bend

> straight anymore, but they do not seem to be getting any worse and

they are

> functional.

>

> As far as long term effects from medications, I have not really

seen any. I

> have been on Methotrexate, Gold, Humira, Prednisone, Hydrocodone,

Plaquinil,

> Trillisate, Arava, and probably some I don't remember, but none

have had any

> long term effects.

>

>

> In a message dated 10/9/2005 10:04:55 A.M. Central Standard Time,

> sonia1md@y... writes:

>

> Hi ,

>

> I am glad that you found our group. We do have a few other

adults

> on the list that also suffered with JRA and I really appreciate

> their insight.

>

> You mentioned that you had some joint replacements. I was

wondering

> if you still have to take medication and if so what kind?

>

> Do you currently have any limitations or is it more residual

> problems left over from the joint damage caused during your teen

> years?

>

> And lastly I was wondering if you have noticed any long term side

> effects from any of the medications that you may have taken.

>

> Thanks for finding our group and feel free to jump in and share

at

> any time!

>

> God Bless,

> (Aundrea 10 systemic jra)

>

>

>

>

>

>

>

Link to comment
Share on other sites

Thank you Stacia. These days I feel wonderful and am pain free. I am glad

most of it is behind me thanks to Enbrel.

In a message dated 10/14/2005 9:41:22 A.M. Central Standard Time,

staciar@... writes:

Welcome !

There are other JRA veteran adults here who, like you, are quite the

survivors including marriage and children. To my knowledge, none of

them have kids with JRA, thankfully. There's only so much pain to go

around maybe.

I have a 9 year old son with systemic jra and uveitis since he was 3.

He's under pretty good control with mtx. injections. I can't imagine

the course of crude things you've been subjected to over the years and

continue to pray that the medical field makes major advances with this

disease quickly for everyone.

I look forward to hearing more about your experiences and advice.

Stacia and Hunter 9 systemic, uveitis

Link to comment
Share on other sites

Welcome !

There are other JRA veteran adults here who, like you, are quite the

survivors including marriage and children. To my knowledge, none of

them have kids with JRA, thankfully. There's only so much pain to go

around maybe.

I have a 9 year old son with systemic jra and uveitis since he was 3.

He's under pretty good control with mtx. injections. I can't imagine

the course of crude things you've been subjected to over the years and

continue to pray that the medical field makes major advances with this

disease quickly for everyone.

I look forward to hearing more about your experiences and advice.

Stacia and Hunter 9 systemic, uveitis

Link to comment
Share on other sites

  • 1 month later...

,

Hello, glad to meet you! I have end-stage cirrhosis as

well and have been on a transplant list for 10 years

now. When I first got on the list they told me I'd

need surgery in about 18 months, but I stabilized, and

now have been through 3 treatments (33 out of 48

months of LIVING HELL) but still relapsed. However, it

seems to have done my liver some good, and now I'm

waiting for either Infergen or one of the protease

inhibitors to fix me.

I am really tired most of the time, have low-grade

nausea most of the time, with various aches and pains.

My WBC is low, albumin is low, platelets are normal

now but were in the 70-80,000 for 7 years before they

went up. I have a huge portal bein (looks like Lake

Erie on a scan), an enlarged spleen, and varices all

the way up to my heart. I saw the CT scan and said -

what are those pretty round things that look like

baloons? never guessing how well I described the

varices.

So how are you, are you on a list (if not why), what

kind of doc are you seeing? I go to Stanford and see

one of their transplant MD's, Dr. Imperial. Transplant

MD's are by far the best to take care of us, since

they have more experience with end-stage disease than

regular GI or hepatologists.

How are you feeling? Do you have family support? I

live with my sister, I'm on federal disability which

is so little she pretty much supports me too. I have 3

cats who are my joy, one's 22, one's 15 and one is

6.

Where do you live? Again, nice to meet you and I look

forward to talking more to you!

Michele

--- darker_goddess <darker_goddess@...> wrote:

> Hi I just joined this site and wanted to pop in to

> say hey. My name is

> stephanie, I am 20 I was dxed with HepC when I was

> sixteen. I am end

> stage chirrossis and end stage of the disease it

> self. I am hoping to

> make some friends who understand what having hep is

> like.

>

>

>

>

__________________________________________________

Link to comment
Share on other sites

Hi Michele,

It was so nice to hear from you! I was on the Peg

intron with Rebeverion but it didnt take. My viral

load is the highest there is. My liver levels are high

but not to elevated to worry to much. My Amonia level

keeps going up so im on Latalose. I have tumors on my

liver as well.

I am not on the list yet, I go next week to boston to

see my doctor, Doctor Goldberg, he is a specialist in

hep C. He is head of the department, my mum calls him

Doogy Houser cause he looks so young! But I got to

boston and have to stay in the hospital for 4 or more

days to see if I am eligable for a transplant. I may

not be because I have a very high viral load, and I

have a heart problem that they are still looking into.

I have two cats, not sure how old they are. And my

dogs are Jezzie, Dakota, Lady, Buddy, Drusilla, and

our newest addition Roxie. I live in Maine, in

Aroostook county, and we have no hep docs up here so I

have to travel all the way to boston. When I go next

week, we will see if the tumors have turned cancerous.

I have almost the exact same symptoms as you, but my

nausea is real bad I can hardly hold anything down.

--- Michele Kiger <mishkiger@...> wrote:

> ,

>

> Hello, glad to meet you! I have end-stage cirrhosis

> as

> well and have been on a transplant list for 10 years

> now. When I first got on the list they told me I'd

> need surgery in about 18 months, but I stabilized,

> and

> now have been through 3 treatments (33 out of 48

> months of LIVING HELL) but still relapsed. However,

> it

> seems to have done my liver some good, and now I'm

> waiting for either Infergen or one of the protease

> inhibitors to fix me.

>

> I am really tired most of the time, have low-grade

> nausea most of the time, with various aches and

> pains.

> My WBC is low, albumin is low, platelets are normal

> now but were in the 70-80,000 for 7 years before

> they

> went up. I have a huge portal bein (looks like Lake

> Erie on a scan), an enlarged spleen, and varices all

> the way up to my heart. I saw the CT scan and said -

> what are those pretty round things that look like

> baloons? never guessing how well I described the

> varices.

>

> So how are you, are you on a list (if not why), what

> kind of doc are you seeing? I go to Stanford and see

> one of their transplant MD's, Dr. Imperial.

> Transplant

> MD's are by far the best to take care of us, since

> they have more experience with end-stage disease

> than

> regular GI or hepatologists.

>

> How are you feeling? Do you have family support? I

> live with my sister, I'm on federal disability which

> is so little she pretty much supports me too. I have

> 3

> cats who are my joy, one's 22, one's 15 and one is

> 6.

>

> Where do you live? Again, nice to meet you and I

> look

> forward to talking more to you!

>

> Michele

>

> --- darker_goddess <darker_goddess@...> wrote:

>

> > Hi I just joined this site and wanted to pop in to

> > say hey. My name is

> > stephanie, I am 20 I was dxed with HepC when I was

> > sixteen. I am end

> > stage chirrossis and end stage of the disease it

> > self. I am hoping to

> > make some friends who understand what having hep

> is

> > like.

> >

> >

> >

> >

>

>

> __________________________________________________

>

Link to comment
Share on other sites

HEY SMOKIE, SORRY THAT I CAN'T HELP YOU. ALL I CAN DO IS TO WISH YOU A QUICK RESOLUTION TO YOUR PROBLEM. HOPE THAT YOU WILL HAVE A BETTER DAY TODAY THAN YESTERDAY. TAKE AS BEST CARE AS YOU CAN AND BE SAFE. LARRY, IN COWTOWN <smokie1952@...> wrote: Has

anyone experienced dizzy spells after neck surgery ? I am 10months post op and started having dizzy spells . REMEMBER ALL OF OUR MEN AND

WOMEN IN THE ARMED SERVICE OF OUR NATION

PRAY THAT THEY MAY BE SAFE

AND SOUND IN BODY AND MIND

Link to comment
Share on other sites

, I would contact your doctor about the dizzy spells. I have had two surgeries on my neck but I never had dizzy spells. This sounds like something else it going on with you. So it is best to contact your doctor.

Hugs and Prayers, Babs

Link to comment
Share on other sites

I have an appt next week Babs <barbnal@...> wrote: , I would contact your doctor about the dizzy spells. I have had two surgeries on my neck but I never had dizzy spells. This sounds like something else it going on with you. So it is best to contact your doctor. Hugs and Prayers, Babs

Personals Skip the bars and set-ups and start using Personals for free

Link to comment
Share on other sites

Thank you Dani,

I like how you change your name each time. That is very cool and

festive.

I hope you are having low pain days. :-)

Take care,

Katrina

>

> It's been a long time since I've posted here. I just want to welcome

> all new members, and wish everyone a less painful day.

>

Link to comment
Share on other sites

  • 3 months later...
Guest guest

Hi Dani, I am having less pain this weekend which is so great. Went

to the movies last night and was ok during it. After i was a little

sore but too bad. I am grateful for these good days. I hope you have

a great day.

Liisa

>

> Just wanted to say I hope you are enjoying your weekend and having

> less painful days.......

>

Link to comment
Share on other sites

Guest guest

Well I don't want to rain on the parade, but for some reason I'm having a

bout of the worst pain in months. If tonight goes like last night I'm

going to the ER for Morphine. SSI says they need more medical info to back

up my claim, so why lay all night writhing in pain. I about went out of my

mind last night. Can't say what the trigger is, other than a big low

pressure system came through. hope you're al doing better. Dave

Link to comment
Share on other sites

Guest guest

Hi Dave I go to PT 3-5 times a week, I now have arthritis in my shoulder and neck, as well as my knees and back, and believe it or not, last week in Vegas we had a cold spell. I went to PT, and my therapist was manipulating my knee, and I almost came off the table, the pain was so bad. He said when he was a young therapist he didn't believe the weather had anything to do with our bone and joint pain, but now that he's an old therapist, he's a believer in it. I hope your weather has changed and your pain is better. My pain dr. is making me have an EKG, I asked why and he said that when you're on heavy duty drugs, they require it once a year. Have you ever heard of that?Just one more thing to worry about- Hope you're better, how is your claim going? JeannieJeannie

New Messenger with Voice. Call regular phones from your PC and save big.

Link to comment
Share on other sites

Guest guest

Dave I hope your pain has eased up. I hope you get what you need to get your ssi. It is a battle to get it approved a battle I know all to well. But every state is different. I am still waiting on my Judges decision. But no biggie I have waited 3 years come May. Each state deals with it differently. I am in Alabama but my appeal when to Atlanta Ga since I live on the state line. A friend of mine in Wiscosin had her judge tell her she was approved at her hearing. Go figure. I am happy that she did not have to wait.

Hugs and Prayers, Babs

Link to comment
Share on other sites

Guest guest

Sorry to hear you were in so much pain Dave. I hope it has eased up.

>

> Well I don't want to rain on the parade, but for some reason I'm

having a

> bout of the worst pain in months. If tonight goes like last night

I'm

> going to the ER for Morphine. SSI says they need more medical info

to back

> up my claim, so why lay all night writhing in pain. I about went

out of my

> mind last night. Can't say what the trigger is, other than a big

low

> pressure system came through. hope you're al doing better. Dave

>

Link to comment
Share on other sites

Guest guest

At 02:31 AM 4/10/06, you wrote:

>Hi Dave

Thanks for all of your concern and wishes. I really thought I was going to

have a second night of it. But I got lots of massage before bed, 2 Ice

packs, and one extra pain killer, and I slept thru the night. It may also

be it is sunny and beautiful here today too.

As for Heart related things, my family has a history of heart

problems, and I had a scare the other night not sure if it was Gas or

something more but I'm going to schedule a stress test to rule anything out.

As for SSI I have one year to wait just for the hearing, so I try

to push that to the back of my mind. Dave

Link to comment
Share on other sites

Guest guest

Thank you!

I hope you have a great and less painful weekend too. :-)

Take care,

Katrina

>

> Just wanted to say I hope you are enjoying your weekend and having

> less painful days.......

>

Link to comment
Share on other sites

Guest guest

i think you should go and get that - - - - documented dave. i hate going to

the er, i think i do it do much, but i just can't , well, there is a lot of

things i forget to do or i make appt with new docs and miss them, i dont

know why; something always comes up. a reason, problem, or an excuse.

anyways i hope this goes away for you along with the pressure system. take

it easy

rob

i

No greater burden can be borne by an individual than to know no one cares or

understands.

>>

> >

> > Well I don't want to rain on the parade, but for some reason I'm

>having a

> > bout of the worst pain in months. If tonight goes like last night

>I'm

> > going to the ER for Morphine. SSI says they need more medical info

>to back

> > up my claim, so why lay all night writhing in pain. I about went

>out of my

> > mind last night. Can't say what the trigger is, other than a big

>low

> > pressure system came through. hope you're al doing better. Dave

> >

>

>

>

>

>

_________________________________________________________________

Express yourself instantly with MSN Messenger! Download today - it's FREE!

http://messenger.msn.click-url.com/go/onm00200471ave/direct/01/

Link to comment
Share on other sites

Guest guest

see, i wished it would go away and it did! im magic, or very late with all

my posts, hmmm

No greater burden can be borne by an individual than to know no one cares or

understands.

>From: Cruikshank <d.cruikshank@...>

>Reply-neck pain

>neck pain

>Subject: Re: Hello

>Date: Mon, 10 Apr 2006 12:11:59 -0400

>

>At 02:31 AM 4/10/06, you wrote:

> >Hi Dave

>

>Thanks for all of your concern and wishes. I really thought I was going to

>have a second night of it. But I got lots of massage before bed, 2 Ice

>packs, and one extra pain killer, and I slept thru the night. It may also

>be it is sunny and beautiful here today too.

>

> As for Heart related things, my family has a history of heart

>problems, and I had a scare the other night not sure if it was Gas or

>something more but I'm going to schedule a stress test to rule anything

>out.

>

> As for SSI I have one year to wait just for the hearing, so I try

>to push that to the back of my mind. Dave

>

_________________________________________________________________

Don’t just search. Find. Check out the new MSN Search!

http://search.msn.click-url.com/go/onm00200636ave/direct/01/

Link to comment
Share on other sites

  • 3 months later...
Guest guest

welcome ,

Glad you found this group - even though it's sad to have a reason.

I am . I am 36 and had JRA since I was 3 - so I am one of the

veteran's in this group. This group is awesome! It is full of many

knowlegeable

and very caring people. Ask any questions - someone probably knows the answer

or can tell you where to look.

As I said I have had this wonderful (can explain this if you need me to) and

awful disease since I was 3 - so if I can be of ANY help let me know. I am

married (17 yrs) to Greg and have a HEALTHY 5.5 yr old daughter, Destiny. We

live in Alabama.

Looking forard to getting to know you better.

love, prayers, and blessings

(age 36 - dx poly @ age 3)

If God leads you to it...He will lead you through it

wife to Greg 17 years

Mommy to Destiny age 5

Link to comment
Share on other sites

Guest guest

Hi ,

How old is your Son? What grade is he in? JRA is Struggles but these

kid's are troopers to. Here you have a range of ages who have JRA. You have the

Veterans to JRA and then you have children 1 yr and up. You can just type away

and vent how your feeling. You can chime in and tell what you know. You ask

a question and I bet someone on here will answer you or tell you what to do

about it. Glad you found this site.

We just had the AJAO Conference here in Atlanta Ga. So there's pictures

on the site to look at. The Next AJAO Conference is in Hershey, Pa July 1 -

4th.2007. Have you called your local AF office yet?

Robbin

Link to comment
Share on other sites

Join the conversation

You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...