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Re: Remicade question
WhiteCell #253398 06/06/13 01:59 PM
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Originally Posted By: WhiteCell
Some infusions work better which means the drug acts more potently so by week 7 I still feel at about a "3". Some treatments (like the one now) last about four weeks before I am at a "3-4" and must use aleve, heat or massage. Not all treatments are created equally. Since the infusion is always identical it must be


WhiteCell- this is very interesting. I have also had the experience where some infusions work very well, and some do not. For instance, I flared three days after my last infusion, and I am still in a flare two weeks later. It's almost as if there were no Remicade in the bag. In my mind, I have this theory that the nurse forgot to add the Remicade to the IV. Is that possible? What could account for some infusions working better than others?


41 y/o female, diagnosed RA 2009, sacroiliitis, peripheral arthritis, most major joints involved, HLA-B27- but suspect AS or spondylitis, Raynaud's, GERD, currently taking Orencia sub-Q, Mtx via injection, citalopram, omeprazole, tramadol, Cyclobenzaprine.


2012 - diagnosed with colitis and iritis and seronegative arthritis.

Failed - Enbrel (stopped working after 10 months), Humira (no effect) and Remicade (failed after two years).
Re: Remicade question
Zeus #253399 06/06/13 02:47 PM
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This is interesting to read since I get my first Remicade infusion TODAY!! Humira was failing more and more, so I'm trusting my rheumy in believing this is a good move. I'm very nervous but hopeful.


Amy

27 years old
AS diagnosis 2013; neck pain for seven or eight years, and spreading multiple-joint pain for about two years
Also: Fibromyalgia, Hashimoto's, hypoglycemia, Raynaud's phenomenon
Meds: Remicade, Norco (10-325 mg), Gabapentin, allergy shots, Prozac, Synthroid (25-50 mcg)
Re: Remicade question
ssherman #253403 06/06/13 03:40 PM
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I was just getting ready to post a question about Remicade. I just finished my third infusion and I am always tired the day after. I noticed your post. Thanks.

Last edited by StLouis; 06/06/13 03:44 PM.
Re: Remicade question
Amers #253404 06/06/13 03:43 PM
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Take a good book to read. I just finished my third initial infusion. I too was on Humira, but it stopped working. Good luck. Follow your doctor's advice, but also keep good notes on how you feel, so you can let them know. Communication is very important.

Re: Remicade question
Zeus #253419 06/06/13 08:44 PM
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I'm on today looking for answers. I just had my 4th infusion, at an increased dose. That was Tuesday. I hurt so bad with shoulder pain that night I was up all night. Yesterday I crashed at about 4 pm and am still down today. I wake up and within an hour, I'm right back to sleep.

SO hoping this is just an adjustment as my options are getting fewer and Fewer and the uveitis keeps banging on my door.


AS,Uveitis, Osteoporosis,Central serous retinopathy, Seizure Disorder to name the majors but I'm a blessed wife, a mom to 5 awesome kids and 4 AMAZING grandkids so its all good! God is good!

Enbrel, MTX, Cymbalta, Folic Acid, D, Calcium, Atelvia, Keppra. Can't tolerate NSAIDS. Steroids flare retinopathy.
Re: Remicade question
Zeus #253436 06/07/13 05:24 AM
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I too had my first Remicade infusion today. It went smoothly and I am trying really hard not to get too excited about the effectiveness. It would be AMAZING to feel good again.


Marjorie,happy wife and mother of a 8 year old. PSA/AS diagnosed 5/10.
Re: Remicade question
Zeus #253450 06/07/13 03:12 PM
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I know what you mean. I so badly want this to work! Mine went smoothly as well. It took 2-1/2 hours since it was my first time, but my nurse will speed up the drip next time. I chose no pre-meds. I brought a bag of snacks and books.

I know a lot of people feel tired the next day, but so far I feel the same. My knee swelling has gone down, but I don't know if that was already happening on its own.


Amy

27 years old
AS diagnosis 2013; neck pain for seven or eight years, and spreading multiple-joint pain for about two years
Also: Fibromyalgia, Hashimoto's, hypoglycemia, Raynaud's phenomenon
Meds: Remicade, Norco (10-325 mg), Gabapentin, allergy shots, Prozac, Synthroid (25-50 mcg)
Re: Remicade question
tropicalisland #253453 06/07/13 03:36 PM
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Originally Posted By: tropicalisland
Originally Posted By: WhiteCell
Some infusions work better which means the drug acts more potently so by week 7 I still feel at about a "3". Some treatments (like the one now) last about four weeks before I am at a "3-4" and must use aleve, heat or massage. Not all treatments are created equally. Since the infusion is always identical it must be


WhiteCell- this is very interesting. I have also had the experience where some infusions work very well, and some do not. For instance, I flared three days after my last infusion, and I am still in a flare two weeks later. It's almost as if there were no Remicade in the bag. In my mind, I have this theory that the nurse forgot to add the Remicade to the IV. Is that possible? What could account for some infusions working better than others?


I have had many infusions which easily last 7 to 9 weeks and a few others (like the current) which at 4 weeks are problematic. I guess it is "possible" that the RN would forget to add the drug but highly unlikely. I would check what steps they take to double check if any (empty vials) would be the hallmark.

My original Rheum Ken Wiesner MD is Sactown told me that some treatments would be stronger than others. Our metabolism is continually changing so to our cells. I think that identifying those activities or diet at the time. Here in San Diego I have been in the sun a lot more this month so that might for some odd reason affect me.

What I do (and did last night) is use Aspercreme on my neck and wrap it to hold heat in overnight. That brings me from a "6" to a "4" in discomfort. It typically gets better if I use the tried and true techniques of stretching and keeping the area warm.


Diagnosed 2001 after years of joint pain. Remicade started 2002 - 5mg/kg every 7 weeks.
Right Eye Iritis.Trabeculectomy/lens replacement 2006 > DSEK Cornea Transplant 2009.
>Ahmed Shunt 2016 >DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. Radio Frequency Ablation 2008.
Angina and stent placement 9/2020

ICU RN - Seattle, WA
~Grasp The Challenge and Succeed~
Re: Remicade question
Zeus #253455 06/07/13 03:51 PM
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Thanks for the info WhiteCell!


41 y/o female, diagnosed RA 2009, sacroiliitis, peripheral arthritis, most major joints involved, HLA-B27- but suspect AS or spondylitis, Raynaud's, GERD, currently taking Orencia sub-Q, Mtx via injection, citalopram, omeprazole, tramadol, Cyclobenzaprine.


2012 - diagnosed with colitis and iritis and seronegative arthritis.

Failed - Enbrel (stopped working after 10 months), Humira (no effect) and Remicade (failed after two years).
Re: Remicade question
Zeus #253459 06/07/13 04:59 PM
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I have had 3 infusions and so far, I am so amazed at how well it is working. When I started, I was using a cane or walker, I gave those up after a week. I am just hoping that it continues to work.


Donna
Suffering since a teenager.Dx with AS Dec 2009. Dx with ulcerative colitis 1998, both knees replaced 2006. GP said I had "some kind of inflammatory arthritis" 25 years ago. It has taken 50 years to get a Dx.

Mobic, Nexium, Naproxin, Lipitor, 6-MP, Nexium, Miacalcam, MSContin and 2 Norco for break through pain
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