Caitlin's Rheumy Visit

[Guest guest]

So glad you were able to get to your appt. What med's is Caitlin

taking? I'm new to this but it was explained to me that the sed rate

is a lagging marker of inflamation were the CRP is a more accurate

marker of what is going on at the time of the blood draw. I also

have pictures of the rash, we should share. Does she still get the

rash? Some of those numbers are pretty high, what is she showing

clinically? What type of activity is she able to do during the day?

Did you mention that she is out of school? If so, how long has she

been out?

> Hello All:

>

> We were able to get to Caitlin's rheumy appointment today,

thankfully. The

> doctor is pleased with how Caitlin is progressing. Still now

definitive

> diagnosis, but looking more like systemic JRA (Still's) rather than

RF. I don't

> know which one is worse than the other, both are equally worrisome,

etc. He will

> repeat labs in 3 weeks, instead of two to give Caitlin a little

break from

> blood draws. He won't see her again until towards the end of

February. We have

> a great picture of her spots, so he kept it for her file. He hopes

to have

> her completely off the steroids (yep, we are staying on them, but

still

> tapering) by March/April. He is hopeful that this disease will not

last forever, I

> hope and pray he's right. He does not want her to stay on the meds

a minute

> longer than she has too, but is staying with the course of

treatment as is

> (except the steroid - he wants that down and gone as soon as

possible). I got a

> copy of her labs some numbers are going down, some up. I have,

surprise,

> questions on some. Here goes:

>

> WBC 20.1 (down from last blood draw - he thinks it went up

due to the

> steroids)

> Hemoglobin 10.6 (still behaving itself, thank God, normal low

is 11.5,

> so we are getting closer)

> Hematocrit 32.7 (still behaving itself too, normal low is 35.0)

>

> Here are some of the ones I have no idea about (of course, I didn't

see these

> until I left the rheumy's office):

>

> RDW 17.1 (normal range: 11.0-15.0)

> Platelet Count 544 (normal: 140-400)

> MPV 7.1 (normal: 7.5-11.5)

> Absolute Neutrophils 18090 (normal: 1500-8000)

> Absolute Lymphocytes 1206 (normal: 1500-6500)

>

> It says: Slight Hypochromasia

> Slight Anisocytosis

> Slight Polychromasis

> Platelets appear increased

>

> Sed rate 93 (down from 120/116/109 - still high, but

coming

> down)

>

> This I don't understand either:

> Chemistry:

>

> Tot. Prot. 8.5 (5.5-8.0)

> Globulin 4.4 (1.4-3.5)

>

> Her C-Reactive Protein is * also. It's high:

>

> C-Reactive Protein 54 mg/L (<8)

>

> I know we have talked about the C-Reactive Protein, but don't

remember what

> it tells. I am hoping someone can help me with these most recent

labs and my

> question as to what they mean. I will look on the internet, too,

to see what I

> can learn myself. I figured I'd share/check with you all, you are

the true

> experts. Thank you.

>

> Take care and stay warm.

> Patty

[Guest guest]

Hi All:

I am going through JRA list withdrawal. My dog somehow tore the modem

connection out of the wall and I had to get a new one, so I couldn't get online

yesterday and share our news and read all the posts. Feels good to be back

online

LOL, I am addicted to this list:)

Please allow me to share our good news:) Yesterday Caitlin had a follow up

visit with her rheumy. He walked in and immediately handed me her labs. He

was excited, like giving a child a present at Christmas:) I looked at the labs

and was pleasantly surprised. He told me to look at her sed rate and I was

shocked (pleasantly). He even said he wondered if he had the right patient

looking at these labs. He did! Most of Caitlin's labs are perfect! Her sed

rate, get this, is 11!!!!!!! Down from 120, 116, 109 and 93 (1/22 labs). I

couldn't believe it actually is down to normal. YIPPIE!!! Her hemoglobin

levels

and hematocrit are normal too:) Her MCH, RDW and platelet count are still a

bit elevated, but have come down. I am concerned about the comments of: slight

hypochromasia and platelets appear increased, but he wasn't. I am going to

check online what these might mean, maybe it's the meds. Her DNase was 340 at

the hospital, then went down to 240, but is now up again at 314. He said it is

the body's memory as to what all has happened. I am not so sure about that.

He wants her off the Prednisone by April 1. Then he wants to wean her off

the MTX with hopes to be off it by May 14, her birthday. He wants to keep the

Plaquenil on board until we see how she does with the Prednisone and MTX off.

How I want her off these meds. He is contacting a Infectious Disease doctor

about prophylactic antibiotics. We are seeing a cardiologist on Monday and I

am seeking his opinion too. The ID doctor didn't even feel it was necessary to

see Caitlin while she was in the hospital! He also found a pediatric rheumy

he really likes at Washington Hospital. Spoke in detail about Caitlin and the

doctor said he did what he would have done. It's nice to know he is seeking

other opinions also. I know Caitlin's particular case was confusing, though I

think a lot are.

His exact words as we were leaving were " the storm has passed " . God I do

hope so:)

went with us too with the question of Raynaud's Phenomenon. You

should have seen his face when he asked if she was sick too:( He said,

unfortunately, he would have to do labs to rule out/in autoimmune disorders,

etc.

Sometime Raynaud's is a symptom of another illness and not the actual illness

itself. It can be Raynaud's on it's own too. We are hoping for Raynaud's only

or, better yet, nothing but cold hands and cold feet.

So will go for labs tomorrow. She's a pro though. She gets daily

injections. She's my brave one:)

Take care.

Patty

[Guest guest]

In a message dated 2/26/04 10:39:38 AM Eastern Standard Time,

hburger64@... writes:

<<

Hi Patty, aka " The list addict "

Nothing worse than lossing internet connection for ANY length of time!!!!

I was so happy to read Caitlins appt went well. That is awesome about her sed

rate.....let hope she just keeps improving ))

Hugs Helen, mom to NIcholas (6,systemic)

>>

Yeppers, just call me the 'list addict' We are hoping and praying Caitlin

continues to progress so well and her labs behave themselves.

Take care.

Patty

[Guest guest]

Thanks Terri:)

[Guest guest]

Hi Patty, aka "The list addict"

Nothing worse than lossing internet connection for ANY length of time!!!!

I was so happy to read Caitlins appt went well. That is awesome about her sed rate.....let hope she just keeps improving ))

Hugs Helen, mom to NIcholas (6,systemic)

Hugs..Helen DH Dan DS's (20)(14)(12)Zachary(9)(6)

DD (4)>From: Emeraldsx3@... >Reply- > >Subject: Caitlin's Rheumy Visit >Date: Wed, 25 Feb 2004 14:08:21 EST > >Hi All: > >I am going through JRA list withdrawal. My dog somehow tore the modem >connection out of the wall and I had to get a new one, so I couldn't get online >yesterday and share our news and read all the posts. Feels good to be back online >LOL, I am addicted to this list:) > >Please allow me to share our good news:) Yesterday Caitlin had a follow up >visit with her rheumy. He walked in and immediately handed me her labs. He >was excited, like giving a child a present at Christmas:) I looked at the labs >and was pleasantly surprised. He told me to look at her sed rate and I was >shocked (pleasantly). He even said he wondered if he had the right patient >looking at these labs. He did! Most of Caitlin's labs are perfect! Her sed >rate, get this, is 11!!!!!!! Down from 120, 116, 109 and 93 (1/22 labs). I >couldn't believe it actually is down to normal. YIPPIE!!! Her hemoglobin levels >and hematocrit are normal too:) Her MCH, RDW and platelet count are still a >bit elevated, but have come down. I am concerned about the comments of: slight >hypochromasia and platelets appear increased, but he wasn't. I am going to >check online what these might mean, maybe it's the meds. Her DNase was 340 at >the hospital, then went down to 240, but is now up again at 314. He said it is >the body's memory as to what all has happened. I am not so sure about that. > >He wants her off the Prednisone by April 1. Then he wants to wean her off >the MTX with hopes to be off it by May 14, her birthday. He wants to keep the >Plaquenil on board until we see how she does with the Prednisone and MTX off. >How I want her off these meds. He is contacting a Infectious Disease doctor >about prophylactic antibiotics. We are seeing a cardiologist on Monday and I >am seeking his opinion too. The ID doctor didn't even feel it was necessary to >see Caitlin while she was in the hospital! He also found a pediatric rheumy >he really likes at Washington Hospital. Spoke in detail about Caitlin and the >doctor said he did what he would have done. It's nice to know he is seeking >other opinions also. I know Caitlin's particular case was confusing, though I >think a lot are. > >His exact words as we were leaving were "the storm has passed". God I do >hope so:) > > went with us too with the question of Raynaud's Phenomenon. You >should have seen his face when he asked if she was sick too:( He said, >unfortunately, he would have to do labs to rule out/in autoimmune disorders, etc. >Sometime Raynaud's is a symptom of another illness and not the actual illness >itself. It can be Raynaud's on it's own too. We are hoping for Raynaud's only >or, better yet, nothing but cold hands and cold feet. > >So will go for labs tomorrow. She's a pro though. She gets daily >injections. She's my brave one:) > >Take care. >Patty Say “good-bye” to spam, viruses and pop-ups with MSN Premium -- free trial offer!

[Guest guest]

What awesome news!!!!!!!!!!!!!Terri

Caitlin's Rheumy Visit

Hi All:I am going through JRA list withdrawal. My dog somehow tore the modem connection out of the wall and I had to get a new one, so I couldn't get online yesterday and share our news and read all the posts. Feels good to be back online LOL, I am addicted to this list:)Please allow me to share our good news:) Yesterday Caitlin had a follow up visit with her rheumy. He walked in and immediately handed me her labs. He was excited, like giving a child a present at Christmas:) I looked at the labs and was pleasantly surprised. He told me to look at her sed rate and I was shocked (pleasantly). He even said he wondered if he had the right patient looking at these labs. He did! Most of Caitlin's labs are perfect! Her sed rate, get this, is 11!!!!!!! Down from 120, 116, 109 and 93 (1/22 labs). I couldn't believe it actually is down to normal. YIPPIE!!! Her hemoglobin levels and hematocrit are normal too:) Her MCH, RDW and platelet count are still a bit elevated, but have come down. I am concerned about the comments of: slight hypochromasia and platelets appear increased, but he wasn't. I am going to check online what these might mean, maybe it's the meds. Her DNase was 340 at the hospital, then went down to 240, but is now up again at 314. He said it is the body's memory as to what all has happened. I am not so sure about that. He wants her off the Prednisone by April 1. Then he wants to wean her off the MTX with hopes to be off it by May 14, her birthday. He wants to keep the Plaquenil on board until we see how she does with the Prednisone and MTX off. How I want her off these meds. He is contacting a Infectious Disease doctor about prophylactic antibiotics. We are seeing a cardiologist on Monday and I am seeking his opinion too. The ID doctor didn't even feel it was necessary to see Caitlin while she was in the hospital! He also found a pediatric rheumy he really likes at Washington Hospital. Spoke in detail about Caitlin and the doctor said he did what he would have done. It's nice to know he is seeking other opinions also. I know Caitlin's particular case was confusing, though I think a lot are. His exact words as we were leaving were "the storm has passed". God I do hope so:) went with us too with the question of Raynaud's Phenomenon. You should have seen his face when he asked if she was sick too:( He said, unfortunately, he would have to do labs to rule out/in autoimmune disorders, etc. Sometime Raynaud's is a symptom of another illness and not the actual illness itself. It can be Raynaud's on it's own too. We are hoping for Raynaud's only or, better yet, nothing but cold hands and cold feet. So will go for labs tomorrow. She's a pro though. She gets daily injections. She's my brave one:)Take care.Patty

[Guest guest]

Thanks e:)

[Guest guest]

-Sounds like good news Patty!!! OO..

Nick was put on atarax when he 1st presented with a rash, pre dx

days. Cant remember if it helped or not. Those were in the day

before diary keeping )) If i remember correctly it was a liquid.

Good news on cupcake too )))

I hope Caitlin continues to improve ))

hugs Helen and (7,systemic)

-- In , Emeraldsx3@a... wrote:

> Hi All:

>

> Caitlin had her rheumy visit today. He believes it is not a

Still's rash,

> but an allergic reaction to something. He said even if the drug

is out of her

> system, the rash could hang around a bit longer. So we are to

stop her Cefzil

> and Prednisone. She has only been on the Prednisone since

Saturday and it

> really doesn't seem to be helping a lot. Of course, you know me,

take her off

> the Cefzil! A big worry for me, but I will have to do it and see

if she did

> develop an allergy to it. I am to call him next week with an

update on the rash.

> Labs in two weeks. ID appointment September 30. ID will decide

about the

> use of prophylactic antibiotics. No joint swelling or anything.

I mentioned

> the cardiac issues and he listened and heard no murmur. So that's

great.

>

> If this truly is an allergic reaction, I will be thrilled as it

means that

> the nasty dragon is still down!

>

> He also gave her Atarax (sp?, don't have script any longer, it's

at the

> pharmacy) to help her with the itch and get to sleep at night.

Anyone here every

> use it?

>

> Take care.

> Patty

> P.S. Cupcake continues to do well.

>

>

>

[Guest guest]

Hi Helen:

Thank you for your well wishes.

Take care.

Patty

[Guest guest]

Abbie also was placed on Atarax in the early days pre-diagnosis.She was on

it for 2 days as it made her throw up.

Christy (Abbie, 15 systemic)

Re: Caitlin's Rheumy Visit

> -Sounds like good news Patty!!! OO..

>

> Nick was put on atarax when he 1st presented with a rash, pre dx

> days. Cant remember if it helped or not. Those were in the day

> before diary keeping )) If i remember correctly it was a liquid.

>

> Good news on cupcake too )))

>

>

> I hope Caitlin continues to improve ))

>

> hugs Helen and (7,systemic)

>

>

> -- In , Emeraldsx3@a... wrote:

> > Hi All:

> >

> > Caitlin had her rheumy visit today. He believes it is not a

> Still's rash,

> > but an allergic reaction to something. He said even if the drug

> is out of her

> > system, the rash could hang around a bit longer. So we are to

> stop her Cefzil

> > and Prednisone. She has only been on the Prednisone since

> Saturday and it

> > really doesn't seem to be helping a lot. Of course, you know me,

> take her off

> > the Cefzil! A big worry for me, but I will have to do it and see

> if she did

> > develop an allergy to it. I am to call him next week with an

> update on the rash.

> > Labs in two weeks. ID appointment September 30. ID will decide

> about the

> > use of prophylactic antibiotics. No joint swelling or anything.

> I mentioned

> > the cardiac issues and he listened and heard no murmur. So that's

> great.

> >

> > If this truly is an allergic reaction, I will be thrilled as it

> means that

> > the nasty dragon is still down!

> >

> > He also gave her Atarax (sp?, don't have script any longer, it's

> at the

> > pharmacy) to help her with the itch and get to sleep at night.

> Anyone here every

> > use it?

> >

> > Take care.

> > Patty

> > P.S. Cupcake continues to do well.

> >

> >

> >

[Guest guest]

In a message dated 9/16/04 7:47:54 PM Eastern Daylight Time, gazelle@...

writes:

>

> Abbie also was placed on Atarax in the early days pre-diagnosis.She was on

> it for 2 days as it made her throw up.

>

Ew, what a reaction:( Thanks Christy. I didn't give it to Caitlin last

night. I am a little concerned about introducing something new to her body as

we

are taking her off all meds to see if that's the reason for the rash.

Take care.

Patty