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

Registered: 12/01/10
Posts: 450
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 -Prednisone, Stelara

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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: 18059
Loc: UK
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

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
Major_AS_Kicker

Registered: 01/25/10
Posts: 2105
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: 21331
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
Veteran_AS_Kicker

Registered: 08/30/11
Posts: 501
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: 4496
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. Cimzia-restarted after 2 yrs away.
Epidural Steroid Injections x8; Lumbar Radiofreq Ablation x2
SIJ Steroid Injection x3; Bilateral Radiofreq Ablation SIJ x9

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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: 6922
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: 21331
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
#472825 - 07/06/12 07:31 PM Re: Serum sickness :( [Re: Winter]
mig Offline


Registered: 04/27/02
Posts: 12461
Loc: ON, Canada
Hi Shari,

I am really sorry to hear you are feeling so horrid. Serum sickness is a known possible adverse reaction to Remicade. It is listed on the product prescribing information.

Quote:
5.7 Hypersensitivity
REMICADE has been associated with hypersensitivity reactions that vary in their time of onset
and required hospitalization in some cases. Most hypersensitivity reactions, which include
urticaria, dyspnea, and/or hypotension, have occurred during or within 2 hours of REMICADE
infusion.
However, in some cases, serum sickness-like reactions have been observed in patients after
initial REMICADE therapy (i.e., as early as after the second dose), and when REMICADE
therapy was reinstituted following an extended period without REMICADE treatment.
Symptoms associated with these reactions include fever, rash, headache, sore throat, myalgias,
polyarthralgias, hand and facial edema and/or dysphagia. These reactions were associated with a
marked increase in antibodies to infliximab, loss of detectable serum concentrations of
infliximab, and possible loss of drug efficacy.
REMICADE should be discontinued for severe hypersensitivity reactions. Medications for the
treatment of hypersensitivity reactions (e.g., acetaminophen, antihistamines, corticosteroids
and/or epinephrine) should be available for immediate use in the event of a reaction [see Adverse
Reactions (6.1)].

Reference: remicade.com Click to download PDF file - Highlights of Prescribing Information

While an antibiotic may be suspect as well, even a delayed reaction a week after your infusion wouldn't rule out Remicade. That your rheumatologist hasn't heard of this possibility in relation to Remicade would not inspire my confidence. You should tell the prescribing doctor to report this as a suspected adverse reaction. The report will include the combination of medications, which may help others in future.

I think there is a good chance you won't continue to feel this poorly for the 12 weeks. The medication will fade and the steroid should start to help soon! Has any doctor suggested that you try an over the counter antihistamine? If you are still feeling terrible, I would ask your doctor if that might be a good idea.

Really really hoping you will be feeling better soon, Shari.
mig

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#472828 - 07/06/12 10:05 PM Re: Serum sickness :( [Re: mig]
Winter Offline
Warrior_AS_Kicker

Registered: 12/01/10
Posts: 450
I really appreciate all the support here.

Hope too, by sharing my story, others can learn what to look out for. I am doing better today on the 60 mg of Prednisone. Jaw and hand symptoms are gone but the utrica is still all over but way down. I am shocked, when this all started, I went to the ER- could barely move my mouth, couldn't chew, it was swollen, excruciating painful (could tell it was nerve pain), could barely move my hands and my right hand was not functional at all. They were going to discharge me with nothing and I spoke up and said "you guys have to do something, I can't function and I'm in a lot of pain. I have a kid to take care of". So the ER doc asked what do you want and I asked "will steroids help?" He then prescribed Methylprednisone. I still got the rash like a vengeance 4 days later after starting the steroids. Who knows how much worse I would have been with no steroids if I wouldn't have spoken up. They must judge me as a drug addict because I take drugs to help my quality of life. To be honest, I am not a pill popper and hate taking drugs. Just need what I need to get by.

The day of infusion, I did take the Benadryl and a Tramadol. I had a headache I could not get rid of it for 5 days after the infusion but didn't call the doc because it was more of an irritating headache and not migraine.

It sucks that I know I am hypersensitive to Remicade and it will be in me for 12 weeks. I was on Remicade years ago (just a few infusions) and just didn't feel it was doing much and I was feeling ill so I stopped. My Rheumy says he doesn't think it is from the Remicade but he has not seen all the notes yet fom the other doctors or heard all the details. From what I read, I am textbook serum sickness - hypersensitive to Remicade.The dermatologist said I am not in the clear yet of it stopping my breathing so I have to continue the steroids. The ER doc should have caught all this. He said the Remicade and antibiotics are poison but that was it. Hope I taught the doctors what to do with the next patient.

Feeling a little depressed, anxious and mad I am pumping more drugs into me now. My goal for being on Remicade was to decrease other drugs (cut out daily low dose steroids) and improve my quality of life. I am thankful though I am still living. My Mom told me not to go on the Remicade and I should have listened. It will be a story I can tell my daughter when she is older to help her learn that Mother's just know.

Shari
_________________________
Meds -Prednisone, Stelara

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#472829 - 07/06/12 11:25 PM Re: Serum sickness :( [Re: Winter]
drizzit Offline
Silver_AS_Kicker

Registered: 02/25/06
Posts: 1483
Loc: Montana
remember Shari a sensitivity to Remicade does not rule out the other TNF drugs that may also help you achieve that goal of drug reduction

There is still Simponi, enbrel, and Humira

Simponi in particular had a very low allergy or drug reaction percentage in the trials.

best of luck
_________________________
No families take so little medicine as those of doctors, except those of apothecaries.

Oliver Wendell Holmes

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#472839 - 07/07/12 08:12 AM Re: Serum sickness :( [Re: drizzit]
Winter Offline
Warrior_AS_Kicker

Registered: 12/01/10
Posts: 450
I don't know if I can risk it again but won't rule it out for good. My Rheumy did warn me before going on another biologic, that my body can't handle them. I was begging him to try a biologic again, due to the fact high steroids were not kicking out my AS flares. I was having a hard time just walking and getting comfortable in bed. Maybe, I should have asked for higher steroids or should have done the steroid injections in the SI. I have osteopenia so I know these steroids are putting me even more at risk for osteporosis. Lord knows what my bones will be like now from the high steroids before starting the biologics and now having to take them for the serum sickness. Should I be taking a medication to strengthen my bones besides calcium? I heard the bone drugs have a ton of side-effects and are not well tolerated.

Should I see a Neurologist? I am a little suspicious I could have some neurological issues due to years of migraines but know this could very well be AS related too from inflammation.

I have learned through this all to trust my Rheumy.

Shari
_________________________
Meds -Prednisone, Stelara

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#472840 - 07/07/12 08:32 AM Re: Serum sickness :( [Re: Winter]
Possi Offline
Addicted_to_AS_Kickin

Registered: 11/13/02
Posts: 6922
Loc: Oklahoma where the wind comes...
((Shari)) I am one of those who can't take the other meds. My rheumatologist told me that he thinks he about killed me trying to help me and that he won't give me any more. I also can't take any more steroids because my intestines have gotten so thin from them. I also have healing problems from a lifetime of steroids. My sternum didn't heal from heart surgery. I have both feet with fractures and one wrist.

Bottom line is that we have to do what we have to do to stay alive. I know the steroids saved my life at times. I have such a love/hate relationship with them.

It is a little un-nerving to know I can't take any of the meds any more especially right now when I am in such a Lupus flare. They kept me going for a lot of years though.

I am thinking of you. I know how it feels to be in your shoes and they cramp your style don't they?

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."


Top
#472847 - 07/07/12 10:37 AM Re: Serum sickness :( [Re: Winter]
ValsMum Offline
Steel_AS_Kicker

Registered: 07/05/10
Posts: 1183
Oh Shari, what a difficult time you must be having, wish I could give you a hug. I am wondering what another rheumatologist would say about your situation. The last thing you would want is to go to another appt at this point, but maybe in the future consider trying a new rheumy. I hope you feel better and get over this serum sickness real soon, I will say a pray for you, take care.
_________________________
Diet change has improved my RA. I feel best eating raw veggies and some fruits and avoiding grains, sugars, nightshades, beans and dairy. Sed rate dropped from 65 to 19, but it took over a year.
www.fatsickandnearlydead.com

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#472861 - 07/07/12 01:28 PM Re: Serum sickness :( [Re: Winter]
avonldy Offline
Major_AS_Kicker

Registered: 02/26/10
Posts: 2190
Loc: N. Sacramento Valley
Shari, I am praying that you get better soon. I hate taking steroids,but sometimes we just don't have a choice.
_________________________
Donna
Cherish your yesterdays,
Dream your tomorrows,
But live your todays.
Do the very best you can
leave the rest to God.
God Bless,

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#472866 - 07/07/12 05:08 PM Re: Serum sickness :( [Re: mig]
rumble Offline
Supreme_AS_Kicker

Registered: 01/31/09
Posts: 4496
Loc: NE Oklahoma
Originally Posted By: mig
You should tell the prescribing doctor to report this as a suspected adverse reaction. The report will include the combination of medications, which may help others in future.

Really really hoping you will be feeling better soon, Shari.
mig

The patient can report to FDA themselves. I did that on behalf of my husband, who suffered a bad reaction to the antidepressant Viibryd.
_________________________
DX: Psoriatic Arthritis, Osteoporosis, Psoriasis
Meds: MTX since Oct 2009, 15mg/week. Cimzia-restarted after 2 yrs away.
Epidural Steroid Injections x8; Lumbar Radiofreq Ablation x2
SIJ Steroid Injection x3; Bilateral Radiofreq Ablation SIJ x9

Top
#472869 - 07/07/12 05:14 PM Re: Serum sickness :( [Re: Winter]
SJLC Offline
Iron_AS_Kicker

Registered: 02/16/10
Posts: 1046
Loc: CA, USA
Originally Posted By: Winter
Should I be taking a medication to strengthen my bones besides calcium? I heard the bone drugs have a ton of side-effects and are not well tolerated.


Remember not to take calcium alone; need to take D3 and especially magnesium to utilize it properly. However it is best to take calcium and magnesium as separate supplements at different times of day, so they can each be better absorbed. If you add strontium[2] into the mix, that also needs to be taken separately. Timing doesn't matter for the D3.

My mom is thankfully off the bone drugs because they stopped even appearing to work after 4 years (meaning, it is questionable that they prevent fractures because the extra density is accompanied by extra brittleness). For the last year she has added prunes[1] and strontium[2] supplements to the calcium/magnesium/D3 regimen and the last bone scan showed improvement!

[1] http://www.whfoods.com/genpage.php?tname=news&dbid=31
[2] http://www.innvista.com/health/nutrition/minerals/stronti.htm

Also search for posts here by mollyc1 on strontium -- it was thanks to Molly's posts that I advised my mom to try these alternate methods

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#472928 - 07/08/12 01:30 PM Re: Serum sickness :( [Re: Winter]
mig Offline


Registered: 04/27/02
Posts: 12461
Loc: ON, Canada
Hi Shari,

I'm relieved to hear that the Prednisone is showing such clear signs of helping and that you are beginning to feel better finally. I am shocked too that the ER was going to discharge you without any form of treatment! That is scary. You should be very proud of yourself for self-advocating as strongly as you did. That is hard to do when right in the middle of feeling so brutal.

I'm not sure which antibiotic you were given but have read that the most common cause of serum sickness is penicillin. Given that you had taken Remicade in the past and were "re-instituting remicade therapy following and extended period without"... I think I'd proceed under the assumption that you may be highly allergic to either or both, unless they can determine which is the danger to you through a blood test.

Can appreciate why you'd be feeling depressed, anxious and mad. Remicade has allowed me to cut out and reduce my other meds and I always wish this for others. I hope you and your doc will be able to find a safe and effective solution or combination that works to manage and control your AS. Sharing your story here may very well help someone else to seek treatment early by identifying signs of trouble.

Really hope you continue to improve quickly, Shari!
mig

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#472930 - 07/08/12 01:43 PM Re: Serum sickness :( [Re: rumble]
mig Offline


Registered: 04/27/02
Posts: 12461
Loc: ON, Canada
That is a good point about reporting it yourself, Rumble!

Perhaps a dumb thought, but I wonder if it would leave more of a lasting impression on the prescribing doctor if they fill out the report, write out the patient's reactions, co-medications, and follow-up care. I'd want to read it and sign it too though.

Doing it yourself has the advantage of knowing it gets done and will be in the database and stats.

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#472968 - 07/09/12 07:20 AM Re: Serum sickness :( [Re: Possi]
Winter Offline
Warrior_AS_Kicker

Registered: 12/01/10
Posts: 450
Possi: I think our bodies are very similar with the drug sensitivities. I think I almost died too. The doctor told me on Thursday, my systems were shutting down. The steroids kept me alive this time and for years, a very low dose of steroids were keeping my AS with low inflammation. Hoping, once I recover from the serum sickness, my body will be able to go back to low level inflammation.

The Remicade did work for one week before my body rejected it. It kicked out the SI pain and my appetite returned. After that, things went downhill and inflammation skyrocketed to all over my body. Still have flare up of rash with heat, headache, all over joint pain and lots of fatigue- still on the 60 mg of Prednisone a day.

Possi, I am sorry you have the drug sensitivities too and now a Lupus flare. How did you get the inflammation down with no drugs to bring down the inflammation? Can you still do steroid shots? Have you had food sensitivity testing done? I just read online if you have type III hypersensitivity, as I have, I may have many food allergies too. I have never been tested for food allergies. It gives me some hope for a better future. Curious to know if you have explored food sensitivities/allergies.

I am stuck indoors now, as being out in the sun brings on a rash on my body, followed by a flu like feeling, fatigue and more joint pain. Hoping this goes away once my body gets rid of the medicine. Had this Lupus like reaction from biologics in the past and it went away eventually after going off biologics. Everyone around me is outdoors, living life and I am still stuck in the house and in bed most of the day, fearful of the sun. Do you live like this all the time with your Lupus?

Thinking of you too and hoping your Lupus flare calms down soon!

Shari
_________________________
Meds -Prednisone, Stelara

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#473006 - 07/09/12 05:07 PM Re: Serum sickness :( [Re: mig]
Winter Offline
Warrior_AS_Kicker

Registered: 12/01/10
Posts: 450
Hi Mig: Thanks for the support. The Prednisone is definitely helping but my body still has a lot of stiffness in my back and neck, stuffy nose, headache and have a malaise feeling.

When this all happened, I also started on an antibiotic, Cefuroxime (for sinus infection)- a week after Remicade. It could have been the Remicade, the antibiotic or both since the reaction happened after the start of Remicade and antibiotic. I spoke to my Rheumy today. He said I can retry the Remicade again to see if I get this again, then, I will know for sure. Otherwise, he said Simponi has less of a chance of allergic reactions and can switch to that one. He did say the reaction is extremely rare and he is leaning on the antibiotic that triggered the sickness but he is not 100 percent certain. The dermatologist said the antibiotic most likely triggered it too but possible the Remicade was the culprit. I think I will assume I am allergic to both at this point and never try either one again unless a blood test can lead me to prove I am safe retrying Remicade. I don't even know at this point, since I'm still suffering with severe joint pain even with high dose steroids, a headache, stuffy nose, rash that is popping out still from heat and malaise that I will have the courage any day soon to retry or start a new drug. Just popping the steroids and Tramadol for now for some relief.

Mig, I am glad the Remicade is working well in your body and you were able to cut back on other meds. You are giving me hope not to give up the fight smile.

Shari
_________________________
Meds -Prednisone, Stelara

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#473074 - 07/11/12 01:18 AM Re: Serum sickness :( [Re: Winter]
mig Offline


Registered: 04/27/02
Posts: 12461
Loc: ON, Canada
Hi Shari,

Really sorry that you are still feeling so much miserable pain. It is really interesting to hear your 2 specialist's thoughts and perspectives. I think there is a test for antibodies to infliximab that is used in clinical research but doubt this would be available (yet?) for patients, or whether the timing of the test would be a factor. Considering the nightmare experience you've been through, I'm not sure I'd be willing to be re-challenged with the med again either. Not without some serious reassurance in the form of some useful pre-screening. Courage on that front can wait. For now it sounds like your focus is where it needs to be - on getting past this and hopefully having these rotten symptoms quiet for you soon!

Hang in there!

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#473082 - 07/11/12 08:11 AM Re: Serum sickness :( [Re: mig]
Winter Offline
Warrior_AS_Kicker

Registered: 12/01/10
Posts: 450
I am doing better with the serum sickness. Joint pain is way down, just some stiffness that comes and goes in my back, and fatigue and headache on and off. Had my sinus scan yesterday. No sinus infection smile. Also, I get to start cutting back the steroid today by 10 mg each day now. My stomach is not liking the extra steroids but as was expected with all my stomach damage.

Now, what would others do in my shoes? My Rheumy said I should retry the Remicade since the reaction could have been from the antibiotic or try Simponi. He said I don't have many options left since I have already been through Enbrel and Humira.

In the past, Humira didn't work. Enbrel helped to decrease pain but I was sick a lot with upper respiratory infections, constant dry throat and skin issues (hives on and off). Right now, I'm down to 95 pounds and may have lost from the serum sickness. I am not gaining weight, even on the steroids. Not sure why I can't gain weight. I looked healthy years ago on Enbrel, which I assume is because the inflammation was down.

So now, what to do- try Simponi, retry the Remicade or stay on low dose Prednisone with no biologics???

Shari
_________________________
Meds -Prednisone, Stelara

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#473106 - 07/11/12 01:26 PM Re: Serum sickness :( [Re: Winter]
mig Offline


Registered: 04/27/02
Posts: 12461
Loc: ON, Canada
Hey - Happy Birthday Shari!!

So glad to hear the serum sickness is way down and you are doing better - whew. That must be a relief. No sinus infection is terrific too!

Gosh, I don't know what I'd do in your shoes. I think I'd be inclined to try Simponi since it is a human monoclonal antibody rather than a chimeric like remicade. Mind you, Enbrel is humanized but different somehow, not a monoclonal antibody but dimeric fusion protein. Since you will probably want a good period to clear what is in your system and fully recover, I guess that will give you time to do some reading. I wonder if it would be possible for an allergist to do a skin test to check if the antibiotic was the culprit, before making a decision? I have no idea but may be worth asking.

What about other options? I imagine you may have tried mtx or sulfasalazine?

Wishing you luck in your decision-making on what you may be comfortable in trying next. Not an easy choice at all after the reactions you've had.

Take care!
mig


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