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04-24-2012, 10:58 AM   #1
Lisa
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oh this SUCKS!!!!!

Had my remicade yesterday, all went well with that....

Was fine this morning when I got up for work etc.....was sitting at my desk and all of a sudden my face felt flushed and I didn't feel 'right'.....

Went to the nurses' office to have my blood pressure taken and it was THROUGH THE ROOF!.....yesterday during my infusion it was in the 136/80 range.....

This morning it was 198/108!!! WTF????? I called the infusion clinic to let them know - of course they told me to call my primary.....

I have an appointment with them at 1pm - just over an hour from now.....now also have a headace and not sure about anything else.....I HATE going to the doctor - and even more so the ER.....aarrrggghhhhhhhhhhh

and of course I have a TON of work to do before tomorrow!!!
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30 plus years and counting with UC/Crohn's!
on remicade since 11/05

While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
04-24-2012, 11:24 AM   #2
David
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I'm so sorry pasobuff. I hope everything is ok.

*hugs*
04-24-2012, 11:26 AM   #3
Rebecca85
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Good luck with your appointment, I hope everything's all right!
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04-24-2012, 12:45 PM   #4
Lisa
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Sitting in the doctors office exam rm right now- pressure still up over 190- they are calling the infusion clinic right now.....

One good thing- my primary doctor specializes in rheumatology - so he is quite familar with remicade!

Still don't know if this related to that- as it isn't listed as a side effect- and I haven't had this happen right after an infusion.

Btw- if my spelling is off- I'm on my phone with an itty. Itty screen and tiny keyboard lol.
04-24-2012, 03:48 PM   #5
izzi'smom
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Oh my I hope they get you settled quickly. I may have even gone to the ER for that (and I HATE the ER) that pressure was pretty high! Good luck!
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04-24-2012, 06:22 PM   #6
izzi'smom
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Hoping you are OK!!
04-24-2012, 09:41 PM   #7
DustyKat
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Hey Paso,

Wow! That is scary!

How are you now hun?? Have things settled any??

Thinking of you mate and sending load of love and well wishes...

Dusty. xxx
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04-25-2012, 01:06 AM   #8
Aura
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Hope you are ok - and that the BP is coming down a bit - keep us posted
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DX 1998
Meds: 2.5mg Plendil ER. Azathioprine 100mg; Inhibace+ 12.5mg; gastrosoothe 60mg; Simvastatin 40mg; Loratadine 20mg; Fluoxetine 40mg; Provera 10mg; Metformin 2.55g; Cal d forte; 1.25mg, Humira; Panadol 4g; Pred 3mg
04-25-2012, 01:48 AM   #9
izzi'smom
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Don't *make* me drive out there...
04-25-2012, 05:04 AM   #10
Lisa
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I'm ok- went to bed early. Have waaaay too much to do today at work. Dr says it should go down by itself but I could take time off if I didn't feel up to work. Told boss I may have to leave early depending on how I feel and he gave me a hard time.......but I'm not going to stress over it!!!
04-25-2012, 10:13 AM   #11
LindaS
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Take care. That is scary! And as much as you might not want to upset your boss, you need to take care of yourself.
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04-26-2012, 05:15 AM   #12
Lisa
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Well I made kit through yesterday - bp was down to 150/? (Have it written down) and I will get it checked again today etc.

Need to figure out what to do by my next infusion in 8 weeks.....
04-26-2012, 07:55 AM   #13
IAmTheWalrus
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Hey, Paso, have you been on Remi for 7 years?
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28 y/o male from Dublin, Ireland, Dx with Crohn's Colitis in January 09.

Current Meds: Remicade, Imuran.

Risk/Benefits of treating Crohn's. Link below

http://www.ccfa.org/assets/pdfs/risk...transcript.pdf
04-26-2012, 10:04 AM   #14
Lisa
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Hey, Paso, have you been on Remi for 7 years?
Yes - since the fall of 2005......
04-26-2012, 11:49 AM   #15
Aura
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So glad to hear that BP has started to come down are you on any BP pills? I take two a day plendil and inhabce + to control my BP as it tends to be high - on these tabs it is finally managed. The inhibace has a diuretic so I pee a bit in the mornings - but at least no fluid retention.

Be interested to know the advice your medical team give you with regards to the high BP and management/preparation for the next infusion, good luck and keep asking them the questions and dont stop till you get an answer.
04-26-2012, 01:24 PM   #16
Terriernut
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Paso!!! Wow, I am sure glad it came down. That sounds like a heck of a reaction. I'm glad you are still with us!
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DX Crohns Feb 2011, symtoms 1997, 2009 and then WHAM! Emergency surgery for perforated sigmoid, fistula through fallopian tube, septic and near dead: Colostomy-Stan was born 22/12/10. Another parastomal hernia, his name is Ollie and he is MONSTER size!
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04-26-2012, 03:38 PM   #17
Lisa
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ok - here's an update (haha)....

I had the chance to swing by the infusion clinic today, and did so to make sure the nurses had a note to let the doctor know before my next infusion what happened.....(and to tell them they forgot my B12 shot!)...

Anyway, the doctor happened to be in the clinic, so I got to talk to him too!.....He hadn't heard of anyone having high bp after the infusion - sometimes during or een low bp and/or tachacardia.....I did tell him I looked it up and the delayed high bp is on the reaction list.....

Anyway - he advised me to talk to my GP and see about getting something fast-acting (he gave me some names too) to take in case this happens again after the infusion.

As for my 'regular' bp - it was been right around the 130-134 mark forever now - actually since I put on weight after being on the Remicade.....I am working on losing some to see if my regular bp comes down - this Tuesday morning was DEFINITELY an anomoly!

Hoping it comes down more and more this week.....will be checking back with my GP one day next week....
04-29-2012, 08:43 PM   #18
DougUte
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That is really scary. Wow.
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Due to the insurance company, Humira ended on January 31, 2017.
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