Re: Georgina/

[Guest guest]

Hi ,

, I am so glad to hear that you're starting to feel better, after beginning

treatment for RA. What type of eye trouble did you have? I ask because I've

noticed lately that my own eyes seem to be becoming more sensitive to light.

My sunglasses, which I've had for a while, just don't seem to be working

quite as well lately. They're dark clipons that I use over my prescription

glasses. I've even tried using my old glasses, which have Transitions lenses,

and they don't seem quite strong enough anymore either. I will definitely

have to make an appt with my eye doctor in the very near future to see what's

going on. I have light eyes (green/blue), which I've been told are more sensisitve

to light than darker colored eyes, but this has only recently become a problem

for me and I've been living in this same, very sunny, environment for nearly 10 years now. Maybe it's just an aspect of aging? Maybe it is something

else?

Thank you for your encouragement about 's recent taper. So far, so good. His growth, too, does seem to be moving along nicely. Great to hear about Rob growing so quickly. He must be feeling excited about that! At 's last doctor appt. he was 1 1/2 centimeters taller than the month before. Which

made him feel terrific ... and it makes having the growth hormone shots just a little bit less of a hassle. We've talked about Rob and his experience with

the daily injections and when we see the endocrinologist in July we may ask

about switching over to that type. He goes back and forth with it. In one

way he likes having just 2 shots a month but it is still a big deal to him

(the pain of the medicine going in and the large bump it leaves at the injection

site, which lasts for about 9-10 days) and it's been over a year already.

The daily shot sounds so much easier, using an almost painless needle/injector

pen. I've been encouraging it but I have no idea if it will be a big deal

to switch brands or not. Have to talk with the doctor about that.

Can you believe our boys are getting ready to go to high school? I still vividly remember that very first day of kindergarten and already ... it's nearly time for 9th grade! Amazing, how quickly they grow up. Josh is looking forward to it. He's feeling very confident, not at all nervous. (Yet.) He knows quite a few kids who are already there and has several good friends who'll be incoming freshman with him, so hopefully they'll all look out for one another. We'll see how it goes, right?

Well, I better get going. Hadn't been able to post as often as I'd like

so I wanted to chat for a bit but it's getting late so I better be heading

upstairs. Have a great day.

Aloha,

Georgina

snooksmama@...

wrote:

Georgina:

Thanks so much for the kind thoughts. Rob has had blood in his urine

since January, and they at first said that it was common in JRA kids. But

the amount has been increasing every time he is tested, and now since May

he has had 3 episodes where you could actually see it. So that is why we

are so concerned.

Rob says he is feeling better today, JAS-wise. He has only been on the

MTX for 2 weeks now; I don't know if it is that or the fact that we seem

to finally be without extended periods of rain and damp weather that we

had been having.

Georgina, thanks for the reminder to take care of myself, too. I had been

having symptoms of RA, and I finally did start treatment in January after

my hubbie pointed out that I was using all my time taking care of Rob and

not myself. I am slowly getting better...I started MTX in April after a

bout of RA related eye trouble made my rheumy get more aggressive. I do

try to get some R & R too when I can. We are planning a nice little trip in

a couple of weeks, so that will help too. But it was so kind of you to

suggest that I take care of myself. I think that is excellent advice that

all JRA parents can take! We have to be strong for these kiddoes...

I was SO EXCITED to hear that Josh's taper is going so incredibly well. I

will be praying that this is the time he finally gets off the pred once

and for all. I am sure that his growth will continue to pick up as well.

Did I tell you that Rob grew over an inch since starting the growth

hormone on 4/24? That is more than he grew in the whole last year! He is

very excited about that.

Josh and Rob will be beginning high school at the same time. I know that

it will offer special challenges to the two of them, but I also know that

they are up to it!!

Thanks again for all you do!

Love,

and Rob 14 JAS

[Guest guest]

Hi Helen,

Since re-starting and/or increasing the meds, many of his symptoms have

now come under control. Although he's still getting the rash in some

areas, on some days, it's not nearly as bad or scattered all over as it

was ... and there's no more fever. No more exhaustion and fatigue. He's

getting his energy and spunk back again. Most days, limited or almost no

morning stiffness now ~ where before it was actually lasting a couple

hours. His joints are doing much better again, all except for his wrists

~ which have long been a prominent and troublesome spot and seem to

always take longer. If the typical pattern occurs, his wrists will soon

improve but then I wouldn't be surprised if his ankles all of a sudden

became swollen and painful. Or maybe not. Maybe things will be different

this time, we hope. Josh actually said he thinks he's ready to start

tapering down his pred. I wanted to give the increased dosing of MTX

(every week again, instead of every other) some time to kick in. I think

it has! Tomorrow is the kids' last day of school, so I plan on talking

to the doctor about it after the weekend. Things are definitely back on

track again. Finally. What a disappointment it was, though, for him to

flare so badly. Reality check, I guess. Never can tell when the beast

may awaken. Arghh!!!

So, you guys have started Enbrel!!!! And, as usual, your Nick was so

calm and brave about the whole thing. What a trooper he is! Such an

inspiration. I hope it works really well for him. That would be great,

to be able to taper off the prednisone with no major difficulties and

then work on decreasing the MTX. Don't worry about the folic acid. Won't

do any harm and it's actually quite a good supplement to take. One less

daily pill, of course, which CAN sometimes mean a world of difference to

our kids. So I understand

Well, I better get going. Know that you and and the entire

family are in our thoughts. That was such a scare, when your husband set

out for the Thanksgiving trip. My heart was racing, reading your email!

I'm so glad everyone is safe and sound again.

Aloha,

Georgina

hburger64 wrote:

>

> Georgina,

>

> I saw in another post you mention Josh's pred dose... I had to ask,

> how is he doing now?? any signs of improvement??? Im so sorry he is

> having to deal with this... Things looked so hopeful back in the

> summer when he finally got to stop the prednisone, How are YOU doing

> with all this????

>

> Thinking of you both...

>

> Hugs Helen and (7,systemic)