Re: [JRA]was Patty/now SED

[Guest guest]

Hi Patty,

I slightly remember Tree's post but just an added kicker that the Sed can be highly influinced.Some rheumies don't even test it at every lab.

was having his lft ankle drained of fluid and injected with steroids for the second time in 6 weeks.This was before Enbrel and his miricle happened.Since he had IV lines hooked up to administor consious sedation I had orders for routine labs to be drawn through the line.His ankle was huge and twisted inward,the ortho showed us the huge syringe full of blood tinged extra synoviol fluid like it was a trophy.His SED came back a 10,perfectly normal,yet he was having trouble with his huge lft ankle, rt ankle and both wrists.Never,ever came back normal before.Several ,several months in a strong medicated remission we left the peds office due to being sick earlier in the week and now a rash and cellulitis(Infected cut)in his knee and headed to the lab.The SED came back a 34 not extremely high but went from 109 to the mid 30's once starting high doses of pred and stayed there forever,until the injection and once starting Enbrel everything came back normal and has basicly stayed that way.

The rheumy was concerned at first until I pointed out what was going on and he looked at his complete labs,showing infection and allergic reactions.The SED is good but not always a true picture.

I am still amazed that Caitlins was so high and still is without very severe systemic and joint symptoms.There is inflimation some where and alot of it.Did the rheumy say anything about why it was so extremely high?

Hugs

Becki and 5 systemic

[Guest guest]

Hey Becki, I am one of those who can have aches and pains and my sed rate be 6 or 8 but then I am one of those who seldom swells, who knows? Maybe after all these years they may determine its not even JRA. I know some really rely on SED rates but I am not convinced it is the best indicator...just my 2 cents..hugs and smiles..Donna

[Guest guest]

Hi Donna,

I have learnt to not trust it alone either.I tend to look at how is feeling and his labs as a whole.

I can't wait until 4-3 ats house.

Love and hugs

Becki and 5 systemic

[Guest guest]

In a message dated 1/30/04 8:18:24 PM Eastern Standard Time,

Arthurnator@... writes:

<<

for routine labs to be drawn through the line.His ankle was huge and twisted

inward,the ortho showed us the huge syringe full of blood tinged extra

synoviol

fluid like it was a trophy.His SED came back a 10,perfectly normal,yet he

was

having trouble with his hug >>

Hi Becki:

Interesting that he had so much swelling and his sed rate was normal. Like

you said it can be influence by other stuff going on.

<>

Initial symptoms with Caitlin were severe systemic and joint. Perhaps the

meds are calming the symptoms somewhat. I don't know. I just know that her sed

rate is still quite high, but progressively going down. The rheumy said it

can takes month for it to go back down. Maybe it has something to do with the

strep, but her ASO is now negative THANK GOD and even with it being negative

the sed rate is high. HHhhmmmm, you have me worried. Has anyone else here had

a sed rate that took months to go down to normal?

Take care.

Patty

[Guest guest]

Hi Patty,

Yup. 's SED rate was also in the extremely high range (in the

130's) and it stayed that way for a very long time. His arthritis was

persistently active for many, many months. Years. The SED rate didn't

reach the so-called normal range until a month after we switched from

oral to injectable Methotrexate. That was more than four years after the

initial symptoms presented.

We did a step up approach. First tried anti-biotics, thinking there was

some kind of infection. Then started on Naproxen, which still didn't

touch most of the symptoms. Next we added Prednisone, which we thought

would be a temporary measure until things got under control. Then began

Methotrexate pills weekly, gradually increasing the dose as he could

tolerate it. We switched NSAIDs from Naproxen to Indomethacin, hoping

for a better response. The we added another DMARD (Plaquenil) to see if

that might tip the scales in our favor. Then we added Cytotec, to help

with associated stomache problems. Added folic acid supplementation to

help with side effects from the oral MTX, which he eventually maxed out

on based on his size and weight. We also doubled the Plaquenil dose.

Finally, despite objections from a kid who used to be petrified by the

thought of getting injections (taking blood, mind you, didn't bother him

nearly as much) we switched to injectable MTX ... and everything changed

for the better. When we got back the results of his first post-injection

lab results I was certain there'd been some kind of mistake. It took

some convincing, and more blood work, for me to really believe that

things were finally turning around. Slowly but surely, Josh himself

noticed improvement. Fewer affected joints. Less morning stiffness. More

energy. We felt very optimistic that maybe, finally, we were going to

beat this thing!

There have been a couple of surprises since then but overall, it changed

the direction this was heading. Last SED rate was a 28, I think. Or a

32? I'm no longer as focused on the numbers anymore. It's a part of the

big picture but it's not the whole picture, as others have said.

Take Care,

Georgina

Emeraldsx3@... wrote:

> Interesting that he had so much swelling and his sed rate was normal. Like

> you said it can be influence by other stuff going on.

>

> Initial symptoms with Caitlin were severe systemic and joint. Perhaps the

> meds are calming the symptoms somewhat. I don't know. I just know that her

sed

> rate is still quite high, but progressively going down. The rheumy said it

> can takes month for it to go back down. Maybe it has something to do with the

> strep, but her ASO is now negative THANK GOD and even with it being negative

> the sed rate is high. HHhhmmmm, you have me worried. Has anyone else here

had

> a sed rate that took months to go down to normal?

>

> Take care.

> Patty

[Guest guest]

In a message dated 1/31/04 4:32:26 PM Eastern Standard Time, gmckin@...

writes:

<< in the extremely high range (in the

130's) and it stayed that way for a very long time. His arthritis was

persistently active for many, many months. Years. The SED rate didn't

reach the so-called normal range until a month after we switched from

oral to injectable Methotrexate. That was more than four years after the

initial symptoms presented. >>

Hi Georgina:

Thank you for responding to my email. Four years is a LONG time for the SED

rate to go to the normal range. Like you said it's only a piece of the puzzle,

but I will feel better when it's back in the normal range.

Take care.

Patty

[Guest guest]

Hi Patty,

I certainly do agree with you. When our children are doing well, the

world suddenly seems a brighter and more friendly place. When even just

a few of the puzzle pieces start falling into place we can begin to feel

more at ease and ready to face the remaining challenges. Once 's

monthly labs started improving, it gave us a brand new sense of optimism.

Aloha,

Georgina

Ps ... how was Caitlin's first day back at school? She certainly sounded

like she was well-prepared and very excited to be going back!

Emeraldsx3@... wrote:

> In a message dated 1/31/04 4:32:26 PM Eastern Standard Time, gmckin@...

> writes:

>

> << in the extremely high range (in the

> 130's) and it stayed that way for a very long time. His arthritis was

> persistently active for many, many months. Years. The SED rate didn't

> reach the so-called normal range until a month after we switched from

> oral to injectable Methotrexate. That was more than four years after the

> initial symptoms presented. >>

>

> Hi Georgina:

>

> Thank you for responding to my email. Four years is a LONG time for the SED

> rate to go to the normal range. Like you said it's only a piece of the

puzzle,

> but I will feel better when it's back in the normal range.

>

> Take care.

> Patty

[Guest guest]

Hi Georgina:

Caitlin's first day back was great. She was thrilled to see her

friends/teachers and they her. She didn't have fatigue or anything signaling it

was to

early to go back. I will, of course, not let my guard down. It's only been one

day back:) I did make her go to bed early, well, we compromised. She rested

in bed and watched some TV for about an hour. Then off to sleepy land:) No

school today due to the ice and frozen roads (we just need ice skates,

something Caitlin is great at:) so she was bummed there was no school. Off she

goes

again tomorrow:)

Thanks for asking about her first day back, you're a sweetie.

How's the tapering going with ? Still keeping him in thoughts and

prayers this will work!

Take care.

Patty

[Guest guest]

In a message dated 2/3/04 3:20:00 PM Eastern Standard Time,

boundforlondon@... writes:

<< urgery and a boy with pneumonia. All the kids were thrilled to see them

this week. I bet Caitlin got the same reaction. Wishing her continued great

days. >>

Hi e:

Yes, same reaction:) One even commented to the teacher that he was seeing a

ghost. She had been out a long time. Thank you for your well wishes for

Caitlin!

Take care.

Patty