Re: Son diagnosed with Spondyloarthritis

[Guest guest]

Can't someone reply to ? I know we have several member with children with

same or similar DX.

Thanks

Rick.

>

> My son (15) was diagnosed with Spondyloarthritis in September. We have done

xrays, labs, an MRI, Children's Hospital appointments, physical therapy, eye

appointments, etc. I'm feeling like we have a pretty good handle on things but

the one thing that's missing is people he and I can relate to. He doesn't know

any other teens with this condition and I don't know any other parents going

through all of this stuff with their child. I'm hoping to find a group where I

can make a connection. Anyone else have a teen with Spondyloarthritis?

>

[Guest guest]

May I recommend SWIFT?  Spondylitis Web Info for Teens  

http://teens.spondylitis.org/

I had a teen with spondylitis; she's now a grad student in Michigan.  She's

also a support group leader in Ann Arbor.  I'm a member of one here in

Indianapolis.  http://www.spondylitis.org/patient_resources/support_groups.aspx

We often welcome teens and their families to meetings.  As you can see there

are support groups around the country.  We recently had the pleasure of meeting

a woman who drove up here from Kentucky because we were the closest group for

her.

Janette in Indiana

From: Rick <rick.hahn@...>

Subject: Re: Son diagnosed with Spondyloarthritis

Date: Wednesday, February 16, 2011, 10:13 AM

 

Can't someone reply to ? I know we have several member with children with

same or similar DX.

Thanks

Rick.

>

> My son (15) was diagnosed with Spondyloarthritis in September. We have done

xrays, labs, an MRI, Children's Hospital appointments, physical therapy, eye

appointments, etc. I'm feeling like we have a pretty good handle on things but

the one thing that's missing is people he and I can relate to. He doesn't know

any other teens with this condition and I don't know any other parents going

through all of this stuff with their child. I'm hoping to find a group where I

can make a connection. Anyone else have a teen with Spondyloarthritis?

>

[Guest guest]

Thanks, Rick! =)

> >

> > My son (15) was diagnosed with Spondyloarthritis in September. We have done

xrays, labs, an MRI, Children's Hospital appointments, physical therapy, eye

appointments, etc. I'm feeling like we have a pretty good handle on things but

the one thing that's missing is people he and I can relate to. He doesn't know

any other teens with this condition and I don't know any other parents going

through all of this stuff with their child. I'm hoping to find a group where I

can make a connection. Anyone else have a teen with Spondyloarthritis?

> >

>

[Guest guest]

Thanks! SWIFT looks GREAT! I'll show it to my son when he gets home.

>

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> > My son (15) was diagnosed with Spondyloarthritis in September. We have done

xrays, labs, an MRI, Children's Hospital appointments, physical therapy, eye

appointments, etc. I'm feeling like we have a pretty good handle on things but

the one thing that's missing is people he and I can relate to. He doesn't know

any other teens with this condition and I don't know any other parents going

through all of this stuff with their child. I'm hoping to find a group where I

can make a connection. Anyone else have a teen with Spondyloarthritis?

>

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[Guest guest]

My son is not a teenager now; he's 36 but he acquired AS at a very young age. 

Take hope.  Greg still works.  He gives himself Enbrel injections and also has

ulcerative colitiis so he takes another medication for that.  He is very

determined to live his life and your son should also do as much as he can to be

normal.  I've had the eye problems but Greg has never been bothered with

them. 

Good luck...........Jane in Arkansas 

________________________________

From: C <chilcotes5@...>

Subject: Re: Son diagnosed with Spondyloarthritis

  Thanks, Rick! =)

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..

[Guest guest]

is enbrel safer than humira? i have this wonderful disease too and nothing has

worked... my rhumatologist reccomends humira, but as i have googled that word

and read horror stories, including death, i am not in that much pain...

thanks,

joey

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[Guest guest]

, I don't know.  I would think they both play havoc with your immune

system.  Greg has been on enbrel for four or five years and has done fine with

it.  He is in horrible pain though if he doesn't take his meds.

________________________________

From: joey t <beatmenace@...>

Sent: Thu, February 17, 2011 4:05:26 PM

Subject: Re: Son diagnosed with Spondyloarthritis

 

is enbrel safer than humira? i have this wonderful disease too and nothing has

worked... my rhumatologist reccomends humira, but as i have googled that word

and read horror stories, including death, i am not in that much pain...

thanks,

joey

>

> Switch to: Text-Only, Daily Digest • Unsubscribe • Terms of Use

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[Guest guest]

Luckily my son hasn't had to be on either one (I hate to say " yet " ).  I haven't

done any research on either.  There is so much to soak in with this disease so

I'm taking baby steps.  I have heard of people having great success with

both.  Do you have a Facebook page?  That is where I'm getting most of my

info.  There are some great groups that answer questions like yours everyday. 

Lots of different views and opinions.  Good luck with your pain.  I hope you

find something you are happy with.=)

From: joey t <beatmenace@...>

Subject: Re: Son diagnosed with Spondyloarthritis

Date: Thursday, February 17, 2011, 2:05 PM

 

is enbrel safer than humira? i have this wonderful disease too and nothing has

worked... my rhumatologist reccomends humira, but as i have googled that word

and read horror stories, including death, i am not in that much pain...

thanks,

joey

>

> Switch to: Text-Only, Daily Digest • Unsubscribe • Terms of Use

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[Guest guest]

I don't know how long you've had this but I'm speaking from 23 years of

experience with a

disease that started out not that bad and is now quite severe.  Everything has

side effects:  for me the worst were with methotrexate and prednisone but I put

up with them in hopes of continuing to live a useful life.  Actually Enbrel is

the one drug I've taken that has caused  NO side effects for me other than

punishment to my

pocketbook.  I used to get infections on methotrexate, sulfasalazine and

prednisone but Enbrel now keeps me amazingly healthy - NO infections.  I think

it's because, like Humira, it targets only TNF and is not a general immune

suppressor.  I hope your disease never progresses like mine but you may one day

reach the point where a crippled, painful life makes the risk of biologics

acceptable.  When we discovered my teen daughter inherited this I fought to get

her on biologics ASAP so she is not crippled and living a normal 20-something

life now.  They've done research in the UK on how many people die each year

from methotrexate or prednisone but we don't hear about that here.  Have you

heard that all the NSAIDS, which also help me, increase your risk for heart

attack?  Life is risky.

Janette in Indiana

From: joey t <beatmenace@...>

Subject: Re: Son diagnosed with Spondyloarthritis

Date: Thursday, February 17, 2011, 5:05 PM

 

is enbrel safer than humira? i have this wonderful disease too and nothing

has worked... my rhumatologist reccomends humira, but as i have googled that

word and read horror stories, including death, i am not in that much pain...

thanks,

joey

>

> Switch to: Text-Only, Daily Digest • Unsubscribe • Terms of Use

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[Guest guest]

i've had this about 2 years... nsaids don't help much except celebrex helps just

a little but kind of expensive...

trying methotrexate now.. i hate it! and i think i am going to stop..i can feel

the damage it is causing to my liver and kidneys..

magical fruit juice? that might actually be the best answer...not being

sarcastic, lol, i read a book last year called " natural cures THEY don't want

you to know about... "

i see the rhumatologist again next month, maybe i will look into enbrel, after i

do a little more research.....

thank you

joey

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[Guest guest]

We've learned first hand that diet is very important with this disease. I know

it's hard to believe, but might actually help you.

Myndi Fitzgerald

Ph: 317-503-3701

www.TheGreatProduct.com/gmfitz

Drink It. Feel It. Share It.

________________________________

From: joey t <beatmenace@...>

Sent: Fri, February 18, 2011 12:22:21 PM

Subject: Re: Son diagnosed with Spondyloarthritis

i've had this about 2 years... nsaids don't help much except celebrex helps just

a little but kind of expensive...

trying methotrexate now.. i hate it! and i think i am going to stop..i can feel

the damage it is causing to my liver and kidneys..

magical fruit juice? that might actually be the best answer...not being

sarcastic, lol, i read a book last year called " natural cures THEY don't want

you to know about... "

i see the rhumatologist again next month, maybe i will look into enbrel, after i

do a little more research.....

thank you

joey

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• Terms of Use

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