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Allergic to ALL TNF-I’s??? #280169
04/04/18 06:00 PM
04/04/18 06:00 PM
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Seattle
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JanetM Offline OP
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Hi everyone, this my first post and I’m not a forum user so please bear with me.

I was diagnosed with Lupus 1994, RA 2014 and USpd about 2 months ago. Methotrexate managed to put the RA into remission for a few blessed months and then I had a Prolia injection for Osteoporosis and flared immediately and was reported as being allergic to Prolia, which as you probably know is a biologic.
I was eventually put on Enbrel for the RA and had what my Rheumy calls a third stage allergic reaction so I discontinued the Enbrel. We then tried Humira with the same exact allergic results.
I am now being referred to the top allergist/immunologist in my area at the University of Washington to determine if I am allergic to all TNFI’s. I don’t completely understand this as biologics are all different I thought and I had a rection to a non TNFI as well.
My greatest concern is what will happen if it does turn out I cannot take any biologic at all. Between the Osteoporosis, OA, and extensive degenerative disc disease I am already being told I am at severe risk of spinal fractures at the age of 57. I use exercise as my main pain management tool as I can’t take NSAIDS and opiates just cause a pain bounce back that is always worse than the original pain.
Anyone else unable to take biologics, and if so how do you cope?

Re: Allergic to ALL TNF-I’s??? [Re: JanetM] #280171
04/04/18 11:30 PM
04/04/18 11:30 PM
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Northern CA
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Beth Online
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Hi Janet! What type of allergic reaction did you have? I am unable to take any of the TNF's due to my reaction, but I am still able to take drugs in the other families. I am currently on Stellara, have been on Orencia and if the Stellara ever quits next for me will be Cosentyx. So there are other drugs besides the TNF's that can help, but it depends on what the allergic reaction was I think...


Beth
Re: Allergic to ALL TNF-I’s??? [Re: JanetM] #280176
04/06/18 11:08 AM
04/06/18 11:08 AM
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New York
Banana Offline
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What is your reaction? Is it the same for each? You still have many many options. I would see a top rhuematologist too. At one time, when we did not have so many different treatments, a doctor told me there was nothing else to do. I went to NYC and Hospital for Special Surgery and the doctors there found many new optons for me. Do not give up.

Sorry/ Anna


Actema IV once a month (with pre loading for allergic reaction), Cymbalta x1 daily, Arava 20mg daily. Diagnosed with AS in 2004, suffered undiagnosed since 1982.
Re: Allergic to ALL TNF-I’s??? [Re: Banana] #280177
04/06/18 04:18 PM
04/06/18 04:18 PM
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Seattle
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JanetM Offline OP
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My symptoms with the TNFI’s were exactly the same...injection site rash, horrible facial rash around my mouth, chin and nose and a major Lupus
flare. I looked up side effects on them and all those things are listed as side effects so I’m not quite sure why they are being labeled as allergies. I’m hugely relieved to hear that there are other options out there, I’m willing to go through whatever reactions I have to to find one of the drugs that will stop the progression.
Thanks so much for you comments I appreciate not feeling so alone and “out of the box” on this weirdness!

Re: Allergic to ALL TNF-I’s??? [Re: JanetM] #280178
04/06/18 04:44 PM
04/06/18 04:44 PM
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SouthernMoss Offline
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Welcome Janet. I'm sorry you are having such a hard time with the biologics. I wonder if the reaction could be to some of the other ingredients in the injections as opposed to the TNFi agent itself.

Almost all the injectible TNFi's have latex in the syringes or pens, which causes allergic reactions in people with latex allergies. Most of the latex reactions I have heard about are more asthma-like, but it might be worth asking your doctors about. If you do have a latex allergy, you could try infusions like Remicade. I think some of the manufacturers may offer latex-free syringes or pens, but not sure about that.

Let us know what you find out from the allergist/immunologist.


Ginny - 57 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacements: right-June 2014, left-Aug 2018
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Culturelle probiotic, Melatonin (as needed)
Re: Allergic to ALL TNF-I’s??? [Re: SouthernMoss] #280179
04/06/18 05:01 PM
04/06/18 05:01 PM
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Seattle
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JanetM Offline OP
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Southernmoss I’m hoping your right about this, it’s logical and makes more sense to me.

I’ll sure let you all know when I finally get some sort of answer....we all know about waiting for those!

Re: Allergic to ALL TNF-I’s??? [Re: JanetM] #280184
04/07/18 04:53 PM
04/07/18 04:53 PM
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NJ, USA
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CBMom Offline
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Cosentyx is an Il-17 inhibitor and has worked well for me! There are other options (though only a couple) if you can't take anti-TNFs - Stelara, Xeljanz, Taltz.

Re: Allergic to ALL TNF-I’s??? [Re: JanetM] #280185
04/08/18 03:32 PM
04/08/18 03:32 PM
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Posts: 6,587
New York
Banana Offline
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Actemra too.

Anna


Actema IV once a month (with pre loading for allergic reaction), Cymbalta x1 daily, Arava 20mg daily. Diagnosed with AS in 2004, suffered undiagnosed since 1982.

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