Re: ivig - Sorry long!!

[Guest guest]

Hi - Sorry to take so long getting back to you . Anyways - I don't

remember the brand of IVIG we used. I am sure I could look it up - that would be

something good to note in her book.

Caroline's history is long and sorrid as many on the list know, but I will try

to recap it with just the higlights (or lowlights depending on how you look at

it). Caroline has Poly JRA + Uveitis and we have rarely had both in control

during the 3+ years that she has been diagnosed. We have been fortunate to have

one or the other doing great, but rarely, if ever, both at the same time.

Caroline can't take and NSAID's (liver sensitvity) so she started with the big

guys pretty early on. She tried and failed Enbrel three times. We've upped her

Methotrexate to the max and gone down again several times. She's been on Oral

Prednisone for almost the entire time at varing dosages from 30mg daily now down

to 2mg daily. Additionally, she has had so many infections we have lost track.

Pnemonia, Influenza, Whooping Cough, Step, Hand, Foot, Mouth, etc. etc. to name

a few. During all these infections we found out she has chronic sinusitis and so

she had her adenoids out, sinuses tapped and drained and a PICC line inserted 2

summers ago. We had hoped this would help reduce her influx of infections. It

did help some, but them the chronic UTI's started and she was diagnosed with VUR

aka Kidney Reflux.

The reason I tell you all this is that all of this lead us to the decision to do

IVIG. Again, during this time her eyes were going crazy (4+ flare) and her

arthirits was not well controlled (lost ROM in her neck, etc.). She had already

been placed on a permanent anti-biotic which was doing little to help in the way

of infections. So, the thought was to give IVIG a try. We felt that it would one

- help boost her immune system, and two if we were lucky help her Uveitis and

maybe even her arthritis.

Unfortunately, the first infusion didn't go well. It could have been a multitude

of problems. The wrong brand, infused too quickly, the wrong amount. Who knows.

However, with Caroline's history her doc's were not willing to take the chance

and try again. In came Remicade. We have been doing Remicade since about

February or March. The first few infusions were scary. She broke out in hives

from head to toe, rashes, the whole nice yards. Still , we continued on because

as you may have guessed from this mini book, we were not left with many choices.

However, her eyes and arthritis continued to get worse so we quit mid summer.

We upped her Prednisone, Cyclosporine, and MTX once again and she went into the

OR to have steroid injections in her eyes. Within two weeks of the the

injections her eyes showed little improvement so the decision was made to once

again try Remicade. We have now done about 5 infusions with not as many side

effects. We have stretched out this last infusion to six weeks (down from every

4), and Miss C once again has a stiff neck so I am sure we will be going back to

every four weeks. Her eyes we're all clear at her last appointment, but we have

a follow up this week and we will see what happens.

I guess my whole point is that although I would LOVE to try IVIG again, I don't

know if it's in Caroline's cards. If the Remicade should fail us a second time,

then I would suspect we would try Humira or the IVIG again.

I am not sure what 2007 holds for us, but I am ready for just about anything I

can tell you that much!!!

I appreciate all your kind words, I am sorry this got so long...

PS -How is doing??

Alia and Caroline, age 4 11/12th's!!!, poly and uveitis

Re: ivig

Hello,

I am very new here and do not know either of you, so please excuse my

intrusion....but when I saw IVIG, I had to interject...what brand of IVIG did

you try? Did you pretreat with Benadryl? Did the dr consider a different brand

of benadryl? My daughter has a PIDD (primary immune deficiency) and receives

IVIG weekly.. I belong to a parent chat for PIDD and read all the problems,

suggestion, and sometimes solutions for problems and rxns to IVIG. Brand can

make a big difference, as some have more " fillers " than others...the rate of

infusion is a huge factor...also, my understanding is for autoimmune such as

JRA, the does is much higher than for PIDD - perhaps building up to the

appropriate dose would alleviate rxns...did they do a trial dose? (where they

infuse a small portion of the normal dose to check rxns). There are many

different brands such as Gammagard, Gammunux, Polygam, Vivaglobin (my daughter

uses this one and it has no fillers such as destrose, sucrose, etc)

Anyway, if you are content with the results of the prednisone and Remicade,

forgive my intrusion...just wanted to let you know there are lots of options to

work with IVIG that the drs aren't always up on if they aren't cutting edge

immunologist.

Just curious - what dose (gms) did they have Caroline on? I have been

considering asking to try this for my daughter, since she is already on

IVIG...the problem is, depending on necessary dose, she recently switched to

subQ, vs IV, which we can do ourselves and she loves the freedom..not sure if

she would have to revert ot IV again.

Hope this unsolicited info might help....

mom to , 16, arthritis, still determining type, CVID, chronic migraines

aliaalan@... wrote: Deadra -

I know has chimed in already, but I thought I would tell you about

Caroline's brief IVIG experience. We only did IVIG one time. Like Chase's doctor

prescribed we did the infusion in one day. The infusion itself went well. It

took about 8 hours to infuse Caroline, but it went off without a problem.

However, the next day Caroline woke up with a migraine and vomiting. Her rheumy

said that she was having an IVIG reaction and therefore we stopped it.

We are now doing Remicade (10mg/kg) and it seems to be doing much better.

She is still on high dose Prednisone, so it's hard to say which one of these are

helping her. She did also have steroid injections into her eyes about 3

months ago. We go back to the eye doctor next week so we will see if they are

still holding.

I am so sorry to hear that Chase is once again struggling with his eyes. I

think he has had one of the roughest roads, but you are amazing to keep going

and search out the best care for him!

Alia and Caroline, age 4 1/2, poly and uveitis