Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Serum sickness :(

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

Hi Shari, thanks for the update. I have never heard of this, but it sounds awful.

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,

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".

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.

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.

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.

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

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.

Oh Shari, I am so sorry and I am so understanding of how sick you are. 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

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.