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Remicade hangover, appt. recap
#255209 07/16/13 06:45 PM
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I got my third Remicade infusion yesterday, and I feel like hell today. I have what I've heard called the Remicade hangover. I'm exhausted, queasy, a little dizzy, and I have a headache, and my joints hurt even worse.

If anyone else has had this, did it ever go away after X number of infusions? I didn't feel this bad after the first one. My nurse even slowed my drip this time because she knew how I felt after the last one. So far, I don't think it's doing much. I felt a little relief after the first infusion, but not much since then. My rheumy said yesterday it's still a little early, but if this doesn't do more, we'll have to stop.

Physical therapy didn't work, so I'm going to try aquatic therapy next and acupuncture again. I'm also going to see a pain-management doctor next week. It's come to that, I'm afraid. I'm going to ask for a pain patch or some kind of extended-relief pill. The ups and downs of Vicodin are really getting to me now. Any med suggestions? I've heard of Fentanyl but don't know if that's stronger than what I can expect to get.

I'm so frustrated. frown


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 hangover, appt. recap
Amers #255211 07/16/13 07:05 PM
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sequoia
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amy, i don't take the anti-tnfs, but i am sorry it hurts so bad.

i just wanted to tell you i got so much relief from WATSU, a specialized water therapy designed for like stroke victims, us with our AS, and folks with spinal surgery. etc. not just regular water therapy. i will go out an get the official site. and perhaps you can find a practioner near you. i am thinking it might be covered by insurance, as my lady had many patients who were on doc's orders.

i also vote for the extended relief meds. one of our members whom i keep up with has bad cancer and the AS, and the ER version of oxy is her lifeline. she tells me it would be difficult to stand it without that particular med. ask the doc.

also, tho i am apparently the only one, acupuncture worked like a dream when the practitioner hit what ever meridian works on the inflammation in my si joints, piriformis muscle and knees.

good luck, and i am sorry for the pain and suffering.

s.

this site says watsu z, new zealand? anyway, it explains it and should give a list of practitioners. if not look for a USA version.

http://www.watsu.org.nz/

Last edited by sequoia; 07/16/13 07:07 PM.
Re: Remicade hangover, appt. recap
Amers #255223 07/16/13 10:51 PM
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I have not had this effect at any time. Sorry to hear you are having troubles.


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 hangover, appt. recap
Amers #255225 07/16/13 11:28 PM
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Just 3 infusions is much too soon to expect results from Remicade. Some people respond quickly, but the norm is to see results over time - 3 to 6 months of treatment.

I would be more concerned about the symptoms you are noticing after your Remicade infusion. Like WhiteCell, I have been on Remicade a long time and I have never had these types of symptoms. Neither have my kids - all three of whom are on Remicade.

How long have you been ANA positive?


Not Me Too!
Re: Remicade hangover, appt. recap
Amers #255230 07/17/13 12:09 AM
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Hi Amers, I am on the Remicade as well, along with many other drugs. My first infusion was July of 2012. I have had the Remicade hangover many times but have had many times where I didn't feel ill afterward. I had my last infusion this past weekend and didn't feel well for two days. here is what I have noticed. If I have had a virus or infection one to two weeks prior to my infusion, I get a hangover effect. If
I have been fairly well the six weeks prior to IV then I am absolutely fine afterward and can power through the day. Another thing I have noticed is that since I am on Singulair & Allegra daily & year round there is no need for me to take the Zyrtec or Claritin before my IV. If I do take the Zyrtec I have a very difficult time recovering from the dizziness and grogginess. It seems to intensify the side effects. Also very important to stay extra hydrated the whole week and especially the night before. If you are not well hydrated you will feel ill afterward. I hope this helps. Remicade has helped me a lot but am still not in remission. Am considering Enbrel.


BarbAW
Re: Remicade hangover, appt. recap
Amers #255236 07/17/13 12:27 PM
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I have had 8 infusions so far. I am done by 4 pm and sleeping on the couch by 6:30. Really tired the next day, but not enough to keep me from going to work. I usually have a joint pain flare for a couple of days about a week after the infusion, but after that passes I'm good until the next one. I think it's just part of the strange adventure we are on.


55yo,PsA, USpA, Osteoarthritis, DDD, MGUS, IBD, Pityraisis Lichenoides Chronica, currently taking Meloxicam, Folic Acid, and Remicade.
Re: Remicade hangover, appt. recap
Amers #255239 07/17/13 12:45 PM
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I have had 6 infusions, no remicade hangovers, felt better after 1st infusion. No tiredness day of or after infusion.


Carrie
Small business owner, 50 / mother of 5, Fort Worth, Texas
Remicade, Seroquel, Folic Acid, MTX, gabapentin
Undifferented spondylopathy HLA-B27+ (onset 2007- DXed 2008) with associated uveitis, psoriasis
EPI and IBS - gastritis due to NSAIDs
Right Hip replacement 2017 with subsequent 4" heterotopic ossification (removed 2019)
Re: Remicade hangover, appt. recap
Amers #255240 07/17/13 01:31 PM
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NotMeToo, I got my ANAs tested in late 2011, and they've always been positive since then. I don't know how long before that they were positive. Do you know if that relates to something here?

Strange how people can have such varying reactions. I know I wasn't as hydrated as I should have been. My bad. My nurse said my side effects are common, but my rheumy is still somewhat concerned. I'm hoping today will be better than yesterday.


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 hangover, appt. recap
Amers #255258 07/17/13 07:56 PM
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I only ever had three infusions before I developed a rare reaction and had to discontinue Remicade. I remember feeling "off" after the first infusion, but no problem with the second or third. Unfortunately everyone reacts differently. Make sure to mention it to your rheumy. Hopefully it is just a fluke and will eventually subside.


Kim - age 33, married with 3 children
DX: Psoriatic Arthritis, HLA B27+
Meds: Otezla, Naproxen PRN, Prednisone PRN
Re: Remicade hangover, appt. recap
Amers #255282 07/18/13 03:39 AM
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I too have had the same effects. The night of the infusion as well as the next day. My doctor indicated that some will have effects that will last for a few days. Hang in there and keep good notes.


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