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Re: Remission and Biologics [Re: MichaelSean] #281695
10/09/18 06:47 PM
10/09/18 06:47 PM
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Originally Posted by MichaelSean

I do, yes. Humira was actually the first one I tried. My rhuematologist prescribed it because according to her it's the optimal biologic for people with AS.


I wish all doctors were on the same page and research would show us the best options. I think my Simponi has hit a wall and I will be looking for a new biologic in the near future. It looks like Humira is a good one, but it seems everyone always have long success with Enbrel.

Re: Remission and Biologics [Re: MichaelSean] #281696
10/09/18 06:54 PM
10/09/18 06:54 PM
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I guess the reason I've been asking about remission and whether or not I could go off Humira is that ... I've not felt like the same person since I've been on it.

The first three months were great. But since April or so I've felt constantly sick. I itch all over. I get hives that come and go on my neck all the time. And I'm having insomnia for the first time in my life.

I get that to some people on this forum I probably come off as some kind of a malcontent because the Humira DOES work at controlling my pain and inflammation. But I'd almost rather have the pain and not be sick, itchy and sleepless all the time. The pain I could deal with. This is making me feel like I'm going crazy.

And I don't even KNOW that it's the Humira. My working theory, because it started in the Spring, is that my allergies are all ramped up while on Humira. I've read Humira can make allergies worse and my eosinophilic score on my blood work (an indicator of an allergic reaction) shot up after starting Humira. But I don't know if that's true or not. Could it be the Humira itself I'm allergic to? (I know hives and itching are listed as common symptoms.) Is it ramping up my tree mold allergy? Could it be mold in our apartment? (We discovered some pretty bad mold in our garage.) Or am I barking up the wrong tree entirely?

I've tried talking it over with my rheumatologist and she has two stock answers: 1) You're fine, take your shot. 2) That's an issue for your primary care physician.

What I WANT to do is stop taking Humira and see if my issues resolve. But I know that if I do that I risk never being able to go back on it again due to my body building up antibodies to the drug. So I feel like I'm trapped. And although this probably makes no medical sense, it almost feels like the Humira has worked TOO well. My pain and inflammation are gone but it feels like my immune system has been nuked.

Last edited by MichaelSean; 10/09/18 07:14 PM.
Re: Remission and Biologics [Re: MichaelSean] #281699
10/09/18 07:16 PM
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So have you talked to your primary? What does he/she say?

Do you have an allergist? If not, have you considered talking to one? They might be able to give you some insight into what's happening.

If you have mold in your garage, you should have your home inspected. Mold is nothing to mess around with, even when you don't have allergies.


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: Remission and Biologics [Re: MichaelSean] #281700
10/09/18 07:16 PM
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Seymour, your mother and I need to talk... wink


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: Remission and Biologics [Re: MichaelSean] #281740
10/11/18 02:19 PM
10/11/18 02:19 PM
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MichaelSean, I don't mean to be a nuisance, but your comment about mold in your garage concerns me. There are several types of mold that release toxins (black mold is one you hear about in the news). And even if the mold is not one that releases toxins, molds can still make you sick.

I did a quick look around and you have many of the symptoms of mold illness, including sinus issues, vertigo, metallic taste, itchy rashes, even joint pain.

I also read about a study by Mayo that found that many cases of chronic sinusitis are incorrectly treated as bacterial when they are actually fungal, from molds and other fungi. https://www.ncbi.nlm.nih.gov/pubmed/10488788


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: Remission and Biologics [Re: SouthernMoss] #281741
10/11/18 02:53 PM
10/11/18 02:53 PM
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Originally Posted by SouthernMoss
MichaelSean, I don't mean to be a nuisance, but your comment about mold in your garage concerns me. There are several types of mold that release toxins (black mold is one you hear about in the news). And even if the mold is not one that releases toxins, molds can still make you sick.

I did a quick look around and you have many of the symptoms of mold illness, including sinus issues, vertigo, metallic taste, itchy rashes, even joint pain.

I also read about a study by Mayo that found that many cases of chronic sinusitis are incorrectly treated as bacterial when they are actually fungal, from molds and other fungi. https://www.ncbi.nlm.nih.gov/pubmed/10488788



I was concerned about that as well. But the folks who manage our apartment had a guy come in and do some testing and swore to us that the mold is confined to the garage. I'm trying to decide if I trust them or not.

All this DID come on after I (STUPIDLY WITHOUT A MASK) moved a bunch of things out of the garage so that the mold could be cleaned up by the apartment management.

FYI, you're not being a nuisance at all. I thank you for your concern and for finding that study. I sent it to my GP via MyChart.

Last edited by MichaelSean; 10/11/18 03:04 PM.
Re: Remission and Biologics [Re: MichaelSean] #281742
10/11/18 03:18 PM
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Originally Posted by MichaelSean
moved a bunch of things out of the garage so that the mold could be cleaned up by the apartment management.


You didn't bring them into your apartment, did you?


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: Remission and Biologics [Re: MichaelSean] #281743
10/11/18 03:27 PM
10/11/18 03:27 PM
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There may indeed be something to SouthernMoss's mold theory, as biologics do make you more susceptible to fungal infections. I wear gloves and a mask when gardening for that reason.

Re: Remission and Biologics [Re: SouthernMoss] #281745
10/11/18 04:03 PM
10/11/18 04:03 PM
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Originally Posted by SouthernMoss
Originally Posted by MichaelSean
moved a bunch of things out of the garage so that the mold could be cleaned up by the apartment management.


You didn't bring them into your apartment, did you?


No. I was dumb but not THAT dumb.

I am wondering now more about this being fungal instead of bacterial. I spoke with my doctor yesterday about this possibly being fungal and he seemed to indicate that the testing for that was fairly invasive. So he wanted to treat it as bacterial first.

What type of doctor do you see about a potential fungal infection?

Last edited by MichaelSean; 10/11/18 04:06 PM.
Re: Remission and Biologics [Re: MichaelSean] #281746
10/11/18 04:12 PM
10/11/18 04:12 PM
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It depends on the systems affected. If multiple systems are affected, I'd want to see an infectious disease specialist.

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