Re: Hunter's rheumy appt.

May 25, 2004

Hi Stacia,

WHOO HOO!! Long time coming.I am so happy things went well and hopefuly the

Optho appointment is also good.

Except the eye problems your story is so familiar except s mirical drug

was Enbrel along with 25mg MTX,200mg Plaquenil, with 300mg Ibuprofin x3 and a

minimum dose of 9mg Prelone a day.

had some very minor symptoms,that we thought he was faking,upped the

Enbrel to .5ml and comlete control ever since.

Thank you for letting us all know about Kineret and SoJRA.Unfortunately alot

of peoples insurance will not cover it ,yet.What your rheumy is doing will hit

the journals and along with others,if never FDA approved for JRA ,it will

become standard second line treatment.Go figure JRA has only hit the MTX patiant

insert within the last 2 yrs,yet has been used since the 80's.

Way to go Hunter!!!!

Hugs

Becki and 5 systemic

PS)Stacia,what Hunter experianced might have been steroid withdrawl.The

symptoms can mimic arthritis because it causes arthrits. , for once, just

breezed through his 3mg down taper.It took close to 5 months and was VERY slow

and

an alternate dose.They were more worried about his adrenal gland

functioning,to prevent symptoms, then the actual arthritis flaring up.

May 25, 2004

Stacia,

Could you tell me more about the d-dimers? What does your rheumy say

about that particular lab and how it relates to the JRA?

Thanks

> Hi all,

>

> Now this is what I like.... an uneventful rheumy visit. For the

> first time, I didn't have a notepad full of questions. The only

> notes I took were that his sed. rate is up a bit to 19 and his D-

> Dimer is elevated. He had a mini-flare two weeks ago that lasted

> two days and I thought maybe it was a lasting effect from that.

But

> the rheumy said the elevated labs. might be from the pred. taper.

> We're down to 2mg as of last Friday. The plan was to do 2mg for 2

> weeks, then 1mg for 2 weeks, then DONE. Now he wants us to stay at

> 2mg for the next 2 months. Oh well, I'm OK with that because we'll

> be traveling a lot and probably lots of late nights with all the

> cousins we'll be visiting in Ohio.

>

> I'm also OK with it because his face is almost normal looking

> again. He's dropped 8 pounds in the last two months (all pred.

> weight) and I'm very pleased with that. When he was first on pred.

> last Sept, he put on 10 pounds in two months. So he started at 58

> lbs in Sept, went to 68 lbs, and is now down to 60 lbs, but has

also

> grown 2 inches. We get another eye checkup next week and hopefully

> things are still clear. We're still on the pred forte taper, but

> only once a day so it's not bad.

>

> All in all, a good visit. We get to go a whole 2 months before we

> see the rheumy again, if all goes well.

>

> Stacia and Hunter,8,systemic,iritis

May 26, 2004

Stacia:

So happy for you and for Hunter! May things continue to go so well..

and Rob 15 Spondy

On Tue, 25 May 2004 23:13:58 -0000 " staciar101 " <staciar@...>

writes:

Hi all,

Now this is what I like.... an uneventful rheumy visit. For the

first time, I didn't have a notepad full of questions. The only

notes I took were that his sed. rate is up a bit to 19 and his D-

Dimer is elevated. He had a mini-flare two weeks ago that lasted

two days and I thought maybe it was a lasting effect from that. But

the rheumy said the elevated labs. might be from the pred. taper.

We're down to 2mg as of last Friday. The plan was to do 2mg for 2

weeks, then 1mg for 2 weeks, then DONE. Now he wants us to stay at

2mg for the next 2 months. Oh well, I'm OK with that because we'll

be traveling a lot and probably lots of late nights with all the

cousins we'll be visiting in Ohio.

I'm also OK with it because his face is almost normal looking

again. He's dropped 8 pounds in the last two months (all pred.

weight) and I'm very pleased with that. When he was first on pred.

last Sept, he put on 10 pounds in two months. So he started at 58

lbs in Sept, went to 68 lbs, and is now down to 60 lbs, but has also

grown 2 inches. We get another eye checkup next week and hopefully

things are still clear. We're still on the pred forte taper, but

only once a day so it's not bad.

All in all, a good visit. We get to go a whole 2 months before we

see the rheumy again, if all goes well.

Stacia and Hunter,8,systemic,iritis

May 26, 2004

Yeah for Hunter! Uneventful visits are my favorite kind! I am glad your

rheumy is still staying aggressive. That is good news for Hunter! We'll be

crossing our fingers for a good eye visit and to two more months of

uneventfulness!!

Alia and Caroline, age 2, poly and uveitis

Hunter's rheumy appt.