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Upping Remicade for Little Farm Girl

Farmwife

Farmwife

New thread for new change. I just wish I didn't have to keep doing this.:voodoo:

The plan is to up Remicade to the max. She's also on a 10mg pred burst.

Grace's arthritis has hit hard and has already done damage to her knees.

Her GI said since she was just scoped a few months ago that we'll wait to see if upping Remicade will take care of her upper abdominal pains, lack of appetite and fatigue.

The rheumatologist wanted her to have an xray of her knee.
The xray showed fusion of the bone.:voodoo: and she has bakers cyst.
This all had happened in 7 weeks, unbelievable!!!

Thankfully the pred seems to be helping a bit but not a much or as fast as in the past.
 
Maya142

Maya142

Moderator
Staff member
We have also found that pred takes longer to work for M now and she needs a higher dose than before to get the same effect.

Hope the increased dose of Remicade works like magic. Sorry to hear about her knees.
Are you sure they didn't say effusion of her knees? Effusion just means swelling - fluid in her knees. M has had this many times.

I've never heard of knees fusing but then again, my husband's ankle fused and that is pretty rare too.

Sending HUGS!
 
Farmwife

Farmwife

Yes effusion, :ybatty: stupid spell check. Lol
We were told the effusion was from damage but the didn't say what specially.
 
Maya142

Maya142

Moderator
Staff member
M had her knee aspirated and that really made a big difference - she went from being in constant pain and having trouble walking, to almost normal. She also had a steroid injection in that knee at the same time (very convenient - one stick, which was nice since she was not sedated for it).
 
Pilgrim

Pilgrim

Oh Farmwife. Your poor little girl. She never seems to get a break at all.

I'm just sad about it. Sending prayers up for her.
 
pdx

pdx

I really hope the higher Remicade dose works well for your daughter. When is her next infusion?
 
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kimmidwife

kimmidwife

Really hoping this does the magic for her!!!!
Your poor baby!!! fingers crossed for her to start feeling better quickly! It seems both our girls have a difficult time with these drugs!
 
Farmwife

Farmwife

:yfrown: The GP didn't get the TB test to the rheumatologist in time which means that Remicade will not be increased this time around.
Her arthritis has spread further to her neck, one wrist and 3 toes (12 joints in all)
I'm unbelievable upset and it doesn't help that we cancelled our vacation!


At least Grace can still do stuff but you can tell she's wearing out emotionaly.
She threw an epic fit at a store that I'm sure we'll be talked about for years.:yfrown:
all I could do was yell back..... where's your mother, kid!:ylol:
 
C

crohnsinct

Well-known member
What TB test did they do? O has the skin test yearly and I read the results and call them in. One time we were delayed a bit past the year and they still did the infusion...just got a stern talking to. Unless they had more concerns and wanted a blood test?????
 
pdx

pdx

Big hugs. :ghug:

Sorry about everything--what an incredibly hard and frustrating couple of days, for her and you.
 
Farmwife

Farmwife

crohnsinct said:
What TB test did they do? O has the skin test yearly and I read the results and call them in. One time we were delayed a bit past the year and they still did the infusion...just got a stern talking to. Unless they had more concerns and wanted a blood test?????
Click to expand...
^^^Well I'm glad I'm not the only one that thought this.

Her rheumatologist said that her insurance company is requesting ( demanding) that the TB test be done before approving the dose increase of Remicade.
Why should that matter at all THEM?????
 
C

crohnsinct

Well-known member
Seriously...when was her last test? And besides if it was the skin test you could just tell the Infusion nurses the result although I get that they probably need the official note from the doctor. Was the infusion today?
 
Farmwife

Farmwife

It was a blood test not a skin prick for TB. It came back negative (of course). It's just the GP office never faxed it to the Rheumy.

She had a TB test 6 months or less ago.
I know its all very stupid. Welcome to Insurance.
 
C

crohnsinct

Well-known member
So was her infusion today? Why couldn't the infusion center call the GP and request they fax the results? Or, better yet, the GP should have had the GI or whoever the doc is that has the infusion center cc'd on the results or better yet, that doc should have ordered the test so results would be sent directly.

Obviously an impatient city girl here. And don't start with me on insurance companies!
 
Mr chicken

Mr chicken

I know our Gi requires the Ped to read the skin test
We are not permitted to interpret the results :roll eyes:

Has to less than a year before the last test
Granted I give humira injections at home
But no new script will be written
 
Farmwife

Farmwife

crohnsinct said:
So was her infusion today? Why couldn't the infusion center call the GP and request they fax the results? Or, better yet, the GP should have had the GI or whoever the doc is that has the infusion center cc'd on the results or better yet, that doc should have ordered the test so results would be sent directly.

Obviously an impatient city girl here. And don't start with me on insurance companies!
Click to expand...
Tomorrow is the day for Remicade . :ack:
She's ( nurse from rheumatologist) called around three and said she would call the GP office to get the fax sent to her and try to put an urgent request into the insurance company to get approval for the higher dose.
It will be interesting, they fought upping it to 200 and now the rheumatologist wants to up it to 300.

I guess the nurse should have been on this yesterday.
Stupid me for thinking they could handle this all on their own.
And they wonder why the mother's of these kids have control" issues". :wink:
 
C

crohnsinct

Well-known member
But insurance approved the increase already right? That is independent of Tb test right? Tb test is just required before they actually do infusion right?

Ok either way how about this. Tell infusion nurse or whoever is handling this that they are to fast track all the faxing etc so infusion can happen. If that can't get done tomorrow then move you to next day. I get that she is suffering and an extra day will really stink but what is the point of infusing at the lesser level and having her suffer for weeks on the tail end?

Since it was their office who dropped the ball by not following up on missing results they should work with you on this. Get your city girl attitude on!
 
Farmwife

Farmwife

crohnsinct said:
But insurance approved the increase already right? That is independent of Tb test right? Tb test is just required before they actually do infusion right?

Ok either way how about this. Tell infusion nurse or whoever is handling this that they are to fast track all the faxing etc so infusion can happen. If that can't get done tomorrow then move you to next day. I get that she is suffering and an extra day will really stink but what is the point of infusing at the lesser level and having her suffer for weeks on the tail end?

Since it was their office who dropped the ball by not following up on missing results they should work with you on this. Get your city girl attitude on!
Click to expand...
The insurance battle was over increasing the timing (8 to 4 weeks), not the amount.
She needed the TB test for the insurance to approve it... period. Stupid, I know.

That's a good thought. Delay Remicade until it's settled. I'll be calling tomorrow.
Thanks CIC
 
C

crohnsinct

Well-known member
Right I remember the battle over shortening schedule and that got approved back in April/may. But now you are saying they need approval to increase dose? That is so weird as our doc increases on the fly. Sometimes we go in and based on what o says to them and how she looks nurses will call doc and discuss and they increase dose right then and there. Has she gained weight since her last dose adjustment? Remi is dosed as mg/kg. just a weight gain alone would justify and increase in total amount of remi to keep the mg/kg the same ratio.

What ever happened with her levels? I think I remember her antibodies came back as none but the doc never reported back levels. If liw that is an automatic on dose increase.

Good luck today!
 
Farmwife

Farmwife

What a morning.:voodoo:
We finally found out that the GP ordered the TB test ( at the request of the rheumatologist) but the GP never said to send a copy to the rheumatologist. Grrrrrr
Then the rheumatologist said it had nothing to do with the TB test but the pre-approval from the insurance that was the hold up. Grrrrrrr
At the last minute everything came thru.
So here we sit waiting for Remicade!:)
 
Farmwife

Farmwife

Wow, wow, wow!

She got Remicade in the morning and this evening she hasn't even mentioned her pain.
First time in weeks!

Awesome!!!!:dance:




Now to pray the Erythema Nodosum stays away!!!!!
 
Farmwife

Farmwife

Update:
Things have been going well with the increase Remicade doses ever 4 weeks.
Occasionally her knees hurt but we know they have damage.
Hopefully in time that well go away ( If it can).
Her GI put her on a drug to simulate her appetite and boy has it worked.
She's gone almost 6 weeks without needing formula ( or at least more than one carton a day). It's been such a nice break. She's been on formula for almost 3 years I think.
She will go back on partial EEN at the start off school.
Her labs show that she's dropping low in her total protein, Calcium and other levels in that category. So it maybe she's not absorbing enough from the food.
Still it's been a nice break.:smile:

School is all set to start in a couple weeks.
Uniforms and supplies bought!
Still the same agreement as last year for her 504 plan
( it's private school so 504s don't apply but this is what I call it).
:yfaint:Grace will be in first grade. Where does the time go?:confused2:
My baby is going five full days of school.

:dance::dance:What, oh what, will I do with my time?:dance::dance:
 
pdx

pdx

Glad that the increased dose is helping. First grade is a big deal--hope she has a great year!
 
Maya142

Maya142

Moderator
Staff member
Hope the increased Remicade continues to work like magic!! And first grade -- that's a big deal, hope she has a wonderful year!!
 
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