what would you do?

[Guest guest]

Oops and yes- I am also on Methrotrexate. Sorry! And lots of pain meds- I

take Oxycontin and lortab fro breakthru pain.

Jill

On 6/18/08, Jill Watkins <jill.watkins@...> wrote:

>

> When we started the Rituxan - I had a pretty high pain level. I hate the

> 1-10 scale. I picture a 10 being in a car wreck with all your limbs cut off-

> so my pain was at a 7? The Rituxan has brought it down to an average of a 4.

> Except for my right wrist with has severe degenerative joint problems and

> needs surgery. Anyway- the only side effect from Rituxan- during the

> infusion, a few times I got a tickle in my throat and the nurse slowed down

> the drip. Thats all- its going really well for me.

>

> Good luck on your decision!

>

> Jill

>

>

>

> On 6/18/08, McNally <McNacks@...> wrote:

>>

>> Hi Jill,

>>

>> I may have been in the bathroom but my husband was there from 12 noon to 8

>> that night, so there was always someone in the room.

>>

>> I looked up the cautions for rituxan last night and kinda scared me, did

>> you have any reactions at all? What was your pain level before, if you dont'

>> mind my asking. I'm only mild/moderate and wondering if I should just stay

>> on the mtx. Are you on mtx along with it? Any other comments are

>> appreciated. Thanks for taking the time. mary in pa

>> Re: [ ] what would you do?

>>

>> Hi -

>>

>> I would change docs. No question. But is there a chacne you were in the

>> bathroom or something?

>>

>> Anyway- I am on Rituxan- and it has been working better than any of the

>> others- I tried Remicade, Orencia, EMbrel etc. They all stoppped working

>> after 6 months. But the Rituxan is still going strong after 1.5 years. I

>> have to get an infusion every 3-4 months tho- instead of 1-2 timers a

>> year.

>> I am just weird, I guess.!

>>

>> But you need to go to who ever you feel most comfortable with.

>>

>> Jill

>>

>> On 6/17/08, McNally <McNacks@... <McNacks%40comcast.net>>

>> wrote:

>> >

>> > Hi Everyone, I just got home this morning from spending a full WEEK in

>> > the hospital over a big toe flare. Sunday a week ago I started to feel

>> > something funny in my left big toe, Monday a week ago I had an important

>> > fumeral to go to that I could not miss. That night I went to the

>> primary, he

>> > thought it was a spider bite and gave me a script for keflex and

>> steriods, I

>> > advised thim that I don't do steriods unless direly important and that I

>> > would hold off on them, took the script for the keflex that day 2 times.

>> > Tuesday when I woke up my toe was alot worse so I added the prednisone

>> then,

>> > by Wednesday moring I was up at 4 am waiting for the dr office to open,

>> I

>> > called at 9 and they told me to go to the ER, at this point it looked

>> like a

>> > potatoe with black spots and the redness was spreading. I went to the

>> ER,

>> > they admitted me, diagnosis seemed to be either a spider bite, gout, ra

>> > flare or a skin infection. After a day of super strong iv antibiotics

>> the

>> > internist that I was assigned knew it wasn't a skin infection. My rheumy

>> > (who I have been with for 9 years now and thought the world of) came to

>> the

>> > hospital on thursday, marked in my record book that I wasn't in my room

>> and

>> > left. I was in the room from Wednesday to this morning, only leaving for

>> an

>> > MRI on Friday at 12 noon for 1 hour. Not only was I there in the room on

>> > thursday but so was my husband. I was so hurt when I found out that I

>> can't

>> > even put it in words, I honestly thought this doc was the tops. The

>> > internist was wonderful but was looking for a confirmation from the

>> rheumy

>> > that it was a flare, the MRI on firday showed synovial inflamation, I

>> had

>> > another rheumy from the office, another partner come in friday, saturday

>> and

>> > sunday and say everyday that he didn't think it was RA related. The

>> > internist finally started iv steriods on saturday night and the

>> turnaround

>> > began, I was able to leave today, the toe looks alot better and feels

>> better

>> > too, I'll be on steriods for another 10 days along with the antibiotic.

>> > Yesterday I had another rheumy from the office that came in, looked at

>> me,

>> > said " you know this is ra related " and I was so releaved, I knew it, the

>> > jerk over the weekend is the only one who didn't. My question, I am so

>> > disappointed you can't believe in my rheumy, I'd like to change to the

>> > rheumy that I met yesterday, same practice, just a different doctor. We

>> had

>> > discussed how every time I take Remicade, I end up with a problem, small

>> or

>> > large afterwards, he said he'd have me off it then (my doc just wanted

>> to

>> > increase it) and on Rituxan, has anyone tried that yet? I called today

>> > because I need to make a follow up appt for 2 weeks from now and they

>> have

>> > to ask my old rheumy if I can go to the new guy, stinks doesn't it. I'd

>> > appreciate your comments. Thank you, in pa

>> >

>> >

[Guest guest]

--- In , " Jill Watkins " <jill.watkins@...>

wrote:

>

> When we started the Rituxan - I had a pretty high pain level. I hate

the

> 1-10 scale. I picture a 10 being in a car wreck with all your limbs

cut off-

This made me laugh - I always picture a 10 as having lost consciousness

due to the pain. My docs have always had to learn that by the time I

complain of pain, it's unbearable, period. Once they understand that I

don't whine about every little stab of pain, and that " aches " are sort

of below pain, we better understand one another lol.

[Guest guest]

Go with your gut instinct. My twins are in DOC Bands, and just started

them on 12/5, but I can already see improvement. Being as your sons

case is severe, I wouldn't chance a treatment that after a few weeks of

having gone through, you STILL don't have full confidence in.

Personally, I KNOW that the DOC Band from Cranial Technologies IS going

to be effective, and that my babies are going to get the proper

treatments. We don't live near our CT, and it takes us about 2 hours

each way, which means that we lose a good portion of the day getting

ready, driving there, etc. It is absolutely worth everything we have

to go through!

Faith

Mom of Chase and Paige- Banded since 12/5

[Guest guest]

It sounds to me like you know in your heart what you really want. I was in the same boat with Hanger and deeply regret every day we wasted in that helmet.

Keep us posted.

____________________________________________________________

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[Guest guest]

We were at the Charlotte office yesterday as well! We are going to go

with CT- we also looked an Hanger- We got him scanned today and will

get the helmet on Dec 22- he is 4 months now- so we are hoping it

will be 8-10 weeks in the band.

Let us know what you decide to do. I know that must be hard plus the

drive everyweek- but so worth it and they are so kind there.

>

> we had our consultation at cranial technologies in charlotte today

and

> were very impressed. they evaluated alex's head ... his asymmetry is

> 15mm and his ears are offset by 8mm, what they called a severe case

of

> classic plagiocephaly.

>

> if we choose to go with the docband, they'll want to see alex weekly

> and think his treatment will be about 8-10 weeks.

>

> they also evaluated his ill-fitting starband. the therapist that

> looked it over wouldn't say if it was " bad " but did mention that she

> did not understand why they were shaving off the points of contact,

> which she thought should remain consistent. it seemed

> counter-intuitive to her. alex's helmet is still pushing his ear

> forward, but after an adjustment last week is no longer covering up

> his eye.

>

> anyway, we have a decision to make. do we scrap the ill-fitting

> starband and drive from atlanta to charlotte and back each week

(about

> four hours each way)? do we give his helmet a chance to fit better

(we

> have only had it since the tuesday before thanksgiving and have gone

> in for three adjustments so far. also, the ortho at children's

> healthcare of atlanta is willing to get a new helmet if they can't

get

> this one to fit properly)? i feel like time is not on our side here.

> there's also the question of cost. it doesn't look like the helmet

we

> currently have or the new docband will be covered. that will be a

big

> hit, but totally worth it to fix my little pumpkin's head.

>

> right now my heart is leaning toward the docband. it seems like the

> funny shape will be a better fit for alex. i'm waffling though. for

> some strange reason, i feel like i'm cheating on the starband. does

> that make sense? i just want to do what's right! what would you do?

>