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Oh this SUCKS!!!!!

Lisa

Adminstrator
Staff member
Location
New York, USA
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!!!
 

Lisa

Adminstrator
Staff member
Location
New York, USA
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.
 
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!
 

DustyKat

Super Moderator
Hey Paso,

Wow! That is scary! :eek2:

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

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

Dusty. x:heart:x:heart:x
 

Lisa

Adminstrator
Staff member
Location
New York, USA
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!!!
 
Take care. That is scary! And as much as you might not want to upset your boss, you need to take care of yourself.
 

Lisa

Adminstrator
Staff member
Location
New York, USA
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.....
 
So glad to hear that BP has started to come down :thumleft: 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.
 

Terriernut

Moderator
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!
:heart:
 

Lisa

Adminstrator
Staff member
Location
New York, USA
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....
 
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