Re: Psa and Uveitis

October 17, 2007

Hi , My 11 year old daughter has uveitis, and I remember one time she had a funky looking rash on her chest, and Dr. wanted it tested for psoriasis (or shingles) because there are certain meds that work better to control both at the same time. It wasn't either, so we were able to stay on the current med that is working for her. If you want to ask Dr. what medicine works better for psoriais and uveitis, you can at www.uveitis.org You can even search pubmed.org and type in the search line uveitis psoriasis, and see the papers that come up. It took 5 years to get my daughters uveitis into medicated remission, but it usually doesn't take that long. I had a dr. that did not prescribe anything more than drops the first whole year after diagnoses. Arthritis related uveitis can be a bugger to tame, though. I hope

your sons gets put into remission, soon. Welcome, ' & a 11 jia/uveitistoivonen4 <toivonen4@...> wrote: Hello - My name is and I am new to this group. I have a son, age 10, named Grant. He has been diagnosed with Psa and Uveitis. He has had scalp psoriasis since age 3. It wasn't until last Fall when scar tissue and damage was found in his eye as a result of inflammation that went undetected. In the spring he had an inflammation in both eyes which lead

us to a Pediatric Rheumatologist to determine if this was systemic. It was finally in August that Psa was diagnosed. He is on 500mg of Naprosyn/day but after 9 weeks now the inflammation in his ankle has not diminished completely. His eyes are not completely inflammation free yet either. I'm not sure what the next step will be and worry about it on a daily basis. Thankfully Grant has not had much pain with this. I'm starting to think that he has a high pain threshold. I am looking forward to this group just to hopefully connect with others that can relate to what I'm dealing with. Thanks for reading! __________________________________________________

October 17, 2007

Hi

Thanks for the info! I have been on Uveitis.org and asked Dr.

questions before but didn't think of asking him about

specific medications. I will do that and also check out pubmed.

How long has your daughter been in remission? Do you live near Dr.

or are you like many and have travelled quite a distance to

see him.

Thanks again!

& Grant 10 Psa/Uveitis

-- In , ' Taunton <lcdanceacademy@...>

wrote:

>

> Hi ,

> My 11 year old daughter has uveitis, and I remember one time she

had a funky looking rash on her chest, and Dr. wanted it

tested for psoriasis (or shingles) because there are certain meds

that work better to control both at the same time. It wasn't

either, so we were able to stay on the current med that is working

for her. If you want to ask Dr. what medicine works better

for psoriais and uveitis, you can at www.uveitis.org You can even

search pubmed.org and type in the search line uveitis psoriasis, and

see the papers that come up.

>

> It took 5 years to get my daughters uveitis into medicated

remission, but it usually doesn't take that long. I had a dr. that

did not prescribe anything more than drops the first whole year

after diagnoses. Arthritis related uveitis can be a bugger to tame,

though. I hope your sons gets put into remission, soon.

>

> Welcome,

> ' & a 11 jia/uveitis

>

> toivonen4 <toivonen4@...> wrote:

> Hello -

>

> My name is and I am new to this group. I have a son, age 10,

> named Grant. He has been diagnosed with Psa and Uveitis. He has

> had scalp psoriasis since age 3. It wasn't until last Fall when

> scar tissue and damage was found in his eye as a result of

> inflammation that went undetected. In the spring he had an

> inflammation in both eyes which lead us to a Pediatric

> Rheumatologist to determine if this was systemic. It was finally

in

> August that Psa was diagnosed. He is on 500mg of Naprosyn/day but

> after 9 weeks now the inflammation in his ankle has not diminished

> completely. His eyes are not completely inflammation free yet

> either. I'm not sure what the next step will be and worry about it

> on a daily basis. Thankfully Grant has not had much pain with

this.

> I'm starting to think that he has a high pain threshold. I am

> looking forward to this group just to hopefully connect with

others

> that can relate to what I'm dealing with.

>

> Thanks for reading!

>

> __________________________________________________

>

October 18, 2007

I live in Oregon. So, yes I travel a long distance. I am still disgusted to this day with how my daughter was not treated with systemic meds at casey's eye in Portland. I blame them (one dr. in particular) for not referring her to someone who could do this. Her inflammation was so out of control that by the time we got referred to someone at Casey's who could put her on systemic meds, the medicine wouldn't work. We saw Dr. two years after being diagnosed and he was shocked to say the least at what he found. We were there for 5 hours. He brought in his fellows to have them look at a's eyes. He told them about the lack of treatment the first year, to leaving her on medication for an entire year that wasn't even working. He told them that this is why he is teaching them, so that this type of treatment doesn't happen anymore. I was almost in tears, because I was told my daughter was stable by

the doc at home. She was found to be legally blind, with blind spots and optic nerve damage that day. Now you know why we travel. He has told me that every medication has a timeline to see if it is going to work. If it doesn't work you move on. So many doctors don't. He has performed her last two eye surgeries, and he prescribes her meds, then relays it to our hematologist back home. My daughter has been quiet for a period of time, but trauma from the last surgery caused a lot of inflammation. That isn't considered a true flare, just something you have to be prepared for to fire hose it with steroid, then slowly taper off so that you can go back to the "quiet state". She has been in a good place with her eyes since March. She had her vitrectomy, lens implant and cataract removal in July, and is down to one drop of pred a day. Sorry, this has been such

a book. Dr. is wonderful for answering questions as long as it isn't diagnosing in nature. You already had the diagnoses, you were just asking for his expert opinion ' & a 11 jia/uveitistoivonen4 <toivonen4@...> wrote: Hi Thanks for the info! I have been on Uveitis.org and asked Dr. questions before but didn't think of asking him about specific medications. I will do that and also check out pubmed.How long has your daughter been in

remission? Do you live near Dr. or are you like many and have travelled quite a distance to see him. Thanks again! & Grant 10 Psa/Uveitis-- In , ' Taunton <lcdanceacademy@...> wrote:>> Hi ,> My 11 year old daughter has uveitis, and I remember one time she had a funky looking rash on her chest, and Dr. wanted it tested for psoriasis (or shingles) because there are certain meds that work better to control both at the same time. It wasn't either, so we were able to stay on the current med that is working for her. If you want to ask Dr. what medicine works better for psoriais and uveitis, you can at www.uveitis.org You can even search pubmed.org and type in the search line uveitis psoriasis, and see the papers that come up. > > It took 5 years to

get my daughters uveitis into medicated remission, but it usually doesn't take that long. I had a dr. that did not prescribe anything more than drops the first whole year after diagnoses. Arthritis related uveitis can be a bugger to tame, though. I hope your sons gets put into remission, soon.> > Welcome,> ' & a 11 jia/uveitis> > toivonen4 <toivonen4@...> wrote:> Hello - > > My name is and I am new to this group. I have a son, age 10, > named Grant. He has been diagnosed with Psa and Uveitis. He has > had scalp psoriasis since age 3. It wasn't until last Fall when > scar tissue and damage was found in his eye as a result of > inflammation that went undetected. In the spring he had an > inflammation in both eyes which lead us to a Pediatric > Rheumatologist to determine if this was systemic. It was finally in > August

that Psa was diagnosed. He is on 500mg of Naprosyn/day but > after 9 weeks now the inflammation in his ankle has not diminished > completely. His eyes are not completely inflammation free yet > either. I'm not sure what the next step will be and worry about it > on a daily basis. Thankfully Grant has not had much pain with this. > I'm starting to think that he has a high pain threshold. I am > looking forward to this group just to hopefully connect with others > that can relate to what I'm dealing with. > > Thanks for reading!> > > > > > > > __________________________________________________>

October 18, 2007

It took Aubrey 9 months of Metx and contd increases to get her into a remission state. Terri

Re: Psa and Uveitis

Hi Thanks for the info! I have been on Uveitis.org and asked Dr. questions before but didn't think of asking him about specific medications. I will do that and also check out pubmed.How long has your daughter been in remission? Do you live near Dr. or are you like many and have travelled quite a distance to see him. Thanks again! & Grant 10 Psa/Uveitis-- In , ' Taunton <lcdanceacademy@...> wrote:>> Hi ,> My 11 year old daughter has uveitis, and I remember one time she had a funky looking rash on her chest, and Dr. wanted it tested for psoriasis (or shingles) because there are certain meds that work better to control both at the same time. It wasn't either, so we were able to stay on the current med that is working for her. If you want to ask Dr. what medicine works better for psoriais and uveitis, you can at www.uveitis.org You can even search pubmed.org and type in the search line uveitis psoriasis, and see the papers that come up. > > It took 5 years to get my daughters uveitis into medicated remission, but it usually doesn't take that long. I had a dr. that did not prescribe anything more than drops the first whole year after diagnoses. Arthritis related uveitis can be a bugger to tame, though. I hope your sons gets put into remission, soon.> > Welcome,> ' & a 11 jia/uveitis> > toivonen4 <toivonen4@...> wrote:> Hello - > > My name is and I am new to this group. I have a son, age 10, > named Grant. He has been diagnosed with Psa and Uveitis. He has > had scalp psoriasis since age 3. It wasn't until last Fall when > scar tissue and damage was found in his eye as a result of > inflammation that went undetected. In the spring he had an > inflammation in both eyes which lead us to a Pediatric > Rheumatologist to determine if this was systemic. It was finally in > August that Psa was diagnosed. He is on 500mg of Naprosyn/day but > after 9 weeks now the inflammation in his ankle has not diminished > completely. His eyes are not completely inflammation free yet > either. I'm not sure what the next step will be and worry about it > on a daily basis. Thankfully Grant has not had much pain with this. > I'm starting to think that he has a high pain threshold. I am > looking forward to this group just to hopefully connect with others > that can relate to what I'm dealing with. > > Thanks for reading!> > > > > > > > __________________________________________________>

October 22, 2007

From what understand Kids with Uveitis have a low inflammation rate as far as joints. This is what I have seen in research Terri And Aubrey

Psa and Uveitis

Hello - My name is and I am new to this group. I have a son, age 10, named Grant. He has been diagnosed with Psa and Uveitis. He has had scalp psoriasis since age 3. It wasn't until last Fall when scar tissue and damage was found in his eye as a result of inflammation that went undetected. In the spring he had an inflammation in both eyes which lead us to a Pediatric Rheumatologist to determine if this was systemic. It was finally in August that Psa was diagnosed. He is on 500mg of Naprosyn/day but after 9 weeks now the inflammation in his ankle has not diminished completely. His eyes are not completely inflammation free yet either. I'm not sure what the next step will be and worry about it on a daily basis. Thankfully Grant has not had much pain with this. I'm starting to think that he has a high pain threshold. I am looking forward to this group just to hopefully connect with others that can relate to what I'm dealing with. Thanks for reading!

No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.488 / Virus Database: 269.14.13/1075 - Release Date: 10/17/2007 9:38 AM

October 23, 2007

I would love to see documentation on that. I have done a lot of

research on this and have never come accross that information.

, Grant,10 Psa/Uveitis

-- In , " Terri Berube " <TerriBer@...> wrote:

>

> From what understand Kids with Uveitis have a low inflammation

rate as far as joints. This is what I have seen in research Terri

And Aubrey

> Psa and Uveitis

>

> Hello -

>

> My name is and I am new to this group. I have a son, age

10,

> named Grant. He has been diagnosed with Psa and Uveitis. He has

> had scalp psoriasis since age 3. It wasn't until last Fall when

> scar tissue and damage was found in his eye as a result of

> inflammation that went undetected. In the spring he had an

> inflammation in both eyes which lead us to a Pediatric

> Rheumatologist to determine if this was systemic. It was finally

in

> August that Psa was diagnosed. He is on 500mg of Naprosyn/day

but

> after 9 weeks now the inflammation in his ankle has not

diminished

> completely. His eyes are not completely inflammation free yet

> either. I'm not sure what the next step will be and worry about

it

> on a daily basis. Thankfully Grant has not had much pain with

this.

> I'm starting to think that he has a high pain threshold. I am

> looking forward to this group just to hopefully connect with

others

> that can relate to what I'm dealing with.

>

> Thanks for reading!

>

> -------------------------------------------------------------------

-----------

>

> No virus found in this incoming message.

> Checked by AVG Free Edition.

> Version: 7.5.488 / Virus Database: 269.14.13/1075 - Release

Date: 10/17/2007 9:38 AM

>

October 23, 2007

I also would like to read about that. I have not yet come across any literature indicating that to be true. I can say my 2 year old daughter responded very well to steroid injection in her knee a year ago but continues to have inflammation of middle finger joint despite two different NSAIDs, Methotrexate, we have just started Humira... I was sure the MTX would have knocked out that inflammation but it appears very subborn and very swollen. Not the best finger to be swollen with limited range of motion

Cheri and Anabelle 2 years old, Pauci/uveitis

Psa and Uveitis> > > Hello - > > My name is and I am new to this group. I have a son, age 10,

> named Grant. He has been diagnosed with Psa and Uveitis. He has > had scalp psoriasis since age 3. It wasn't until last Fall when > scar tissue and damage was found in his eye as a result of > inflammation that went undetected. In the spring he had an > inflammation in both eyes which lead us to a Pediatric > Rheumatologist to determine if this was systemic. It was finally in > August that Psa was diagnosed. He is on 500mg of Naprosyn/day but > after 9 weeks now the inflammation in his ankle has not diminished > completely. His eyes are not completely inflammation free yet > either. I'm not sure what the next step will be and worry about it > on a daily basis. Thankfully Grant has not had much pain with this. > I'm starting to think that he has a high pain threshold. I am > looking forward to this group just to hopefully connect with

others > that can relate to what I'm dealing with. > > Thanks for reading!> > > > > > > > > ------------ --------- --------- --------- --------- --------- ------------> > > No virus found in this incoming message.> Checked by AVG Free Edition. > Version: 7.5.488 / Virus Database: 269.14.13/1075 - Release Date: 10/17/2007 9:38 AM>

__________________________________________________

October 24, 2007

I look forward to day and get it posted to the site. Aubrey has had Uveitis for 6 years so we have seen paperwork for a very long time...Terri and Aubrey.

Psa and Uveitis> > > Hello - > > My name is and I am new to this group. I have a son, age 10, > named Grant. He has been diagnosed with Psa and Uveitis. He has > had scalp psoriasis since age 3. It wasn't until last Fall when > scar tissue and damage was found in his eye as a result of > inflammation that went undetected. In the spring he had an > inflammation in both eyes which lead us to a Pediatric > Rheumatologist to determine if this was systemic. It was finally in > August that Psa was diagnosed. He is on 500mg of Naprosyn/day but > after 9 weeks now the inflammation in his ankle has not diminished > completely. His eyes are not completely inflammation free yet > either. I'm not sure what the next step will be and worry about it > on a daily basis. Thankfully Grant has not had much pain with this. > I'm starting to think that he has a high pain threshold. I am > looking forward to this group just to hopefully connect with others > that can relate to what I'm dealing with. > > Thanks for reading!> > > > > > > > > ---------------------------------------------------------------------> > > No virus found in this incoming message.> Checked by AVG Free Edition. > Version: 7.5.488 / Virus Database: 269.14.13/1075 - Release Date: 10/17/2007 9:38 AM>

No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.488 / Virus Database: 269.15.5/1084 - Release Date: 10/21/2007 3:09 PM

October 24, 2007

How have you managed Aubrey's Uveitis? Grant was just at the

Opthamologist yesterday and I am really frustrated. Grant still has

a little inflammation in both eyes and the Dr. wants to up the drops

to 3/day. After reading info from Dr. I am completely uneasy

with this. He has been on drops in one eye for 1 year now and

nothing has changed. THe opth said if the Rheumy wants to switch to

Methotrexate for his joints, that would be okay then. So I am

hoping now that the rheumy will agree to do this. We have 3 weeks

to wait and see. What else does Aubrey have besides uveitis and how

old?

& Grant, 10 PsA/Uveitis

- In , " Terri Berube " <TerriBer@...> wrote:

>

> I look forward to day and get it posted to the site. Aubrey has

had Uveitis for 6 years so we have seen paperwork for a very long

time...Terri and Aubrey.

> Psa and Uveitis

> >

> > Hello -

> >

> > My name is and I am new to this group. I have a son, age

> 10,

> > named Grant. He has been diagnosed with Psa and Uveitis. He

has

> > had scalp psoriasis since age 3. It wasn't until last Fall

when

> > scar tissue and damage was found in his eye as a result of

> > inflammation that went undetected. In the spring he had an

> > inflammation in both eyes which lead us to a Pediatric

> > Rheumatologist to determine if this was systemic. It was

finally

> in

> > August that Psa was diagnosed. He is on 500mg of Naprosyn/day

> but

> > after 9 weeks now the inflammation in his ankle has not

> diminished

> > completely. His eyes are not completely inflammation free yet

> > either. I'm not sure what the next step will be and worry

about

> it

> > on a daily basis. Thankfully Grant has not had much pain with

> this.

> > I'm starting to think that he has a high pain threshold. I am

> > looking forward to this group just to hopefully connect with

> others

> > that can relate to what I'm dealing with.

> >

> > Thanks for reading!

> >

> > ----------------------------------------------------------

> -----------

> >

> > No virus found in this incoming message.

> > Checked by AVG Free Edition.

> > Version: 7.5.488 / Virus Database: 269.14.13/1075 - Release

> Date: 10/17/2007 9:38 AM

> >

>

> -------------------------------------------------------------------

-----------

>

> No virus found in this incoming message.

> Checked by AVG Free Edition.

> Version: 7.5.488 / Virus Database: 269.15.5/1084 - Release Date:

10/21/2007 3:09 PM

>

October 24, 2007

Hi ,

I completely understand your frustration. Uveitis is indeed a Very frustrating and subborn disease.

Our daughter was first diagnosed with Uveitis last March. After 2 failed tapers from steroid drops Dr. advised us to go to methotrexate. He said we know the eye drops work at stopping her inflammation in the eye but we can't continue to rely on them and the faster you can find a medicine to rid her of inflammation the better off her eyes will be. I would think that a year on eye drops is reason enough to move on to something else or at the very least get a second opinion from a uveitis expert.

Cheri and Anabelle 2 years old/Pauci JIA/uveitis

Psa and Uveitis> > > > > > Hello - > > > > My name is and I am new to this group. I have a son, age > 10, > > named Grant. He has been diagnosed with Psa and Uveitis. He has > > had scalp psoriasis since age 3. It wasn't until last Fall when > > scar tissue and damage was found in his eye as a result of > > inflammation that went undetected. In the spring he had an > > inflammation in both eyes which lead us to a Pediatric > > Rheumatologist to determine if this was systemic.

It was finally > in > > August that Psa was diagnosed. He is on 500mg of Naprosyn/day > but > > after 9 weeks now the inflammation in his ankle has not > diminished > > completely. His eyes are not completely inflammation free yet > > either. I'm not sure what the next step will be and worry about > it > > on a daily basis. Thankfully Grant has not had much pain with > this. > > I'm starting to think that he has a high pain threshold. I am > > looking forward to this group just to hopefully connect with > others > > that can relate to what I'm dealing with. > > > > Thanks for reading!> > > > > > > > > > > > > > > > > > ------------ --------- --------- --------- --------- --------- -> ----------->

> > > > > No virus found in this incoming message.> > Checked by AVG Free Edition. > > Version: 7.5.488 / Virus Database: 269.14.13/1075 - Release > Date: 10/17/2007 9:38 AM> >> > > > > > > ------------ --------- --------- --------- --------- --------- ------------> > > No virus found in this incoming message.> Checked by AVG Free Edition. > Version: 7.5.488 / Virus Database: 269.15.5/1084 - Release Date: 10/21/2007 3:09 PM>

__________________________________________________

October 24, 2007

- I would be frustrated also!!! Caroline has had a stubborn case of Uveitis, although we have been EXTREMELY fortunate that she doesn't have too much damage - a cataract is it so far. She has gone from a 4+ to trace and back again several times in the last 4 years. We have been lucky to have an eye doc and rheumy who are very aggressive.

Caroline has had steroid (kenalog) injections into her eyes twice in addition to a laundry list of meds. Currently she takes Humira, Methotrexate, Cyclosprorine, Oral Prednisone, and Pred Forte. This past week we went to the doc and she is in a flare (a 2+) so we've upped her Prednisone to 20mg daily and Pred Forte drops to six times a day each eye. We go back next week to see if it's helping, but most likely we will be doing the injections again.

I guess my point is - be aggresive. Trust your gut - because mom's are usually right. Don't be afraid to seek a second opinion.....

Alia and Caroline, age 5, poly and uveitis