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#472778 - 07/06/12 06:55 AM Serum sickness :(
Winter Offline
Black_Belt_AS_Kicker

Registered: 12/01/10
Posts: 410
Just wanted everyone to know I have serum sickness and feel like I want to die. I had severe jaw pain, headache that won't go away, vision changes, neuropathy of my extremities and now hives all over my body with severe itching. I started Remicade last month but was also on an antibiotic a week after starting the Remicade for sinusitis so they don't know which medication triggered the serum sickness or if it is an infection triggering all of this.

I have been on heavy steroids the past week and was told I have to continue the heavy steroids until this all passes. Was told Remicade will last in my body for 12 weeks. Is this true? I am not too surprised this happened. I used to get hives all the time from Enbrel. It makes me wonder if I am allergic to both Enbrel and Remicade. My Rheumy says he doubts it is from the Remicade.

I worry about being on the heavy steroids too for this long. My antibiotic was stopped after 6 days and was told not to retry a new antibiotic until I am done with the heavy steroids in a few weeks. This is all too frustrating no doctor can figure out what is going on. I have been to the ER, dermatologist, ENT and rheumatologist.

Shari
_________________________
Meds: Simponi, LDN 6MG, Prednisone 1 mg daily, Armour thyroid, Metaxalone, Methylprednisolone dose packs for flare ups, Amitriptylline for migraines

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#472790 - 07/06/12 12:42 PM Re: Serum sickness :( [Re: Winter]
Inanna Offline
Very_Addicted_to_AS_Kickin

Registered: 11/15/01
Posts: 17824
Loc: Toronto, Ontario
Hi Shari, thanks for the update. I have never heard of this, but it sounds awful. hugss

It is true that Remicade will take at least 12 weeks to leave your system. When I came off Remicade and switched to Enbrel, I had to wait a full three months after my last infusion before I could take my first Enbrel shot. Somehow, I doubt that will ease your mind.

I hope you feel better really soon!

Warm hugs,
_________________________
Kat



"Frost Moon" by Nene Thomas

A life lived in fear is a life half lived.
"Strictly Ballroom"


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#472791 - 07/06/12 12:55 PM Re: Serum sickness :( [Re: Winter]
SJLC Offline
Iron_AS_Kicker

Registered: 02/16/10
Posts: 1046
Loc: CA, USA
In a way it seems strange that your doc doubts the remicade is causing your reaction after you already had hives from Enbrel, it does seem the most likely culprit. But on the other hand, docs are people too -- would rather not believe the stuff they prescribed to help, ends up hurting someone instead. That has happened to my sister a number of times though; now she needs to put her foot down and say "NO I am NOT taking medicine X, it has potential side-effects of a type to which I am prone".

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#472792 - 07/06/12 01:13 PM Re: Serum sickness :( [Re: Winter]
cemc Offline
Captain_AS_Kicker

Registered: 01/25/10
Posts: 1997
Loc: UK
Sorry you are going through this. I've never heard of serum sickness either. Do they mean some kind of septicaemia, or a major allergic reaction? Surely there is something they can do to treat, though it wouldn't be a rheumatologist that would know.

Just remember that if you get worse in any way, and particularly if you start having problems with breathing (with the allergic type reaction) then get yourself to ER immediately.

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#472794 - 07/06/12 01:26 PM Re: Serum sickness :( [Re: Winter]
Jaybird Offline
Silver_AS_Kicker

Registered: 03/23/07
Posts: 1461
Loc: The Matrix
Serum sickness? Are you serious? So, your blood is sick? Don't doubt your pain, just that I find it unbelievable that this is what you are being told. Sounds to me like you have some sort of blood infection. It can be quite serious. I had a whopper that took IV antibiotics for a month. Really think I should have been on orals for some time afterward. I am guessing that AS might be part of that price for not having been. I perceive that you should be on antibiotics of some sort (unless it causes an allergic reaction) to fight infection. Personally, I'd find another doctor, one who entertains infectious causes, and get another opinion.
_________________________
Kind Regards,
Jay

Almost all of us long for peace and freedom; but very few of us have much enthusiasm for the thoughts, feelings, and actions that make for peace and freedom. - Aldous Huxley

Was the government to prescribe to us our medicine and diet, our bodies would be in such keeping as our souls are now. - Thomas Jefferson

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#472795 - 07/06/12 01:40 PM Re: Serum sickness :( [Re: Winter]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 20633
Loc: Upstate NY
i guess i don't completely understand what you mean by serum sickness, but sounds like others are addressing that.

i wanted to speak to the biologics though. i haven't been on one (yet) but since it could be in my future, i pay attention here, and my rheumy and i have had a few conversations about them.

i know some people are given benadryl (or something like that?) when they take remicade to help prevent allergic responses to the remicade.

my rheumy and i discussed remicade, enbrel, and humira. he was less familiar with simponi. i told him i'd prefer the one least likely to cause "side effects", meaning the one i'd be least likely to be "allergic" too. since i have been known to be allergic to things. because of the source / how they are produced, he said humira would be least likely to cause this sort of problem. thus if or when i need a biologic, we've agreed to start with humira.

so sorry you are so sick. i do agree that another pair of doctor eyes might be in order, if you feel you need more help than you are getting.
_________________________


sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)

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#472796 - 07/06/12 01:47 PM Re: Serum sickness :( [Re: Winter]
Gerri54 Offline
Warrior_AS_Kicker

Registered: 08/30/11
Posts: 498
Loc: Ontario, Canada
Hoping your feeling better soon.

I am unable to take any biologics because they have a sulfite (which I am severely allergic to) component in them. Sulfite is a preservative. There is no Sulfa drug in them.

Hugs
Gerri & Makaylah
_________________________
KickAS member since 04/22/06
Psoriasis(72), AS(2006), PsA with Spondylitis(2011),Vitiligo (69), sleep apnea (2004), Bronchial Asthma, many allergies, anaphylaxis allergy to sulfites, diabetic, Vitamin D deficient - Celiac/fructose intolerance/malabsorption - many co-morbidities

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#472797 - 07/06/12 02:03 PM Re: Serum sickness :( [Re: Winter]
rumble Offline
Supreme_AS_Kicker

Registered: 01/31/09
Posts: 4251
Loc: NE Oklahoma
serum sickness

Sounds dreadful. Hope you are getting better, slowly. An immunologist might be a good one to consult, if one is available in your area. Allergist might be a second choice if everyone is still stumped. It would be good to know the source, if possible, so you can tell if it's the biologic, in general or specifically.

I added a short synopsis of what this is. Not a blood infection (sepsis or septic), but a type of reaction of the immune system.
_________________________
DX: psoriatic arthritis, osteoporosis, psoriasis
Meds: MTX since Oct 2009, 15mg/week. Started Cimzia 12/31/13
Epidural steroid injections x6; Lumbar radiofreq ablation x2
SIJ steroid injection x2 and bilateral radiofreq ablation x5

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#472814 - 07/06/12 05:47 PM Re: Serum sickness :( [Re: Winter]
Possi Offline
Addicted_to_AS_Kickin

Registered: 11/13/02
Posts: 6760
Loc: Oklahoma where the wind comes...
Oh Shari, I am so sorry and I am so understanding of how sick you are. hugss I took Benydryl and IV steroids before my infusions. I really got sick from the Remicade. Never again according to my dr. I don't do well with any of the big gun meds.

I am thinking of you. Hope this is past for you soon.

Hugs and Blessings.
Possi
_________________________


Possi
*********************************************************

RUN WHEN YOU CAN,
WALK IF YOU HAVE TO,
CRAWL IF YOU MUST,
JUST NEVER EVER GIVE UP!



"A FRIEND HEARS THE SONG IN YOUR HEART AND SINGS IT TO YOU WHEN YOU CAN'T REMEMBER THE WORDS."

"A FRIEND LOOKS THROUGH YOUR BROKEN FENCE TO ADMIRE YOUR FLOWERS."


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#472822 - 07/06/12 07:15 PM Re: Serum sickness :( [Re: rumble]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 20633
Loc: Upstate NY
thank you for that rumble.

hadn't realized how serious this was.

do hope you improve quickly. hoping you are in good hands.

and yes, after reading this, could very well be from the remicade. not saying it is, but am saying that in my opinion, it definitely can't just be ruled out.
_________________________


sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)

Top
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