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Remission and Biologics #281670
10/08/18 01:08 PM
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MichaelSean Online OP
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I ran across a post from a Rhuematoid Arthritis group on Facebook yesterday about remission. I know that's not AS or PsA like I have, but I think most people with AS have an underlying autoimmune cause. (Maybe I'm wrong about that ... I've not researched it thoroughly.)

But the RA article stated that if you've had no pain for many months, your condition MAY have gone into remission. And you should have a conversation with your rheumatologist about decreasing your dosage or stopping the medication altogether. Fortunately, I am one of those people for whom Humira has worked like gangbusters. Am I in "remission?" I don't know. But I've had no pain for 10 straight months. My rheumatologist IS recommending I move to an every three weeks versus an every two weeks injection schedule. Which is nice. But that's not my question.

I've heard both sides about stopping Humira. One that you CAN stop and restart it at a later date if your symptoms come back (my rhuemy tells me this). The other is that if I stop taking it, my body will build up antibodies to the mediation, and if I start taking it again later it will no longer be effective (my gastro tells me this.) I don't know what to believe.

Does anyone know the latest science regarding whether or not biologics can be halted in people who may have gone into remission and then resumed should the symptoms return?

Last edited by MichaelSean; 10/08/18 01:20 PM.
Re: Remission and Biologics [Re: MichaelSean] #281671
10/08/18 02:01 PM
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You’re taking this medication to stop hurting, and now that it works you want to stop it because you’re not hurting anymore? That’s the Humira doing its job buddy.

You should consider yourself lucky that the medication works that well and move on. No need taking the risk the sabotage that by stopping it. AS never goes away. What you have is clinical remission and if you stop your treatment you’ll be back in the land of pain maybe faster than you think.

I don’t want to sound harsh but I suggest you enjoy your treatment working so well and move on with your life. Enjoy the relief while it lasts and don’t do anything foolish.

Re: Remission and Biologics [Re: MichaelSean] #281672
10/08/18 02:05 PM
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To my knowledge there is no definitive answer to your question about restarting Humira. That's why you are getting different answers from your doctors and from people on the forums. It's also very possible that the definitive answer is "it depends." Everyone is different and reacts to medications differently.

The thing you have to watch for with AS is that you can have periods of relative quiet, followed by periods of high disease activity. It's the nature of the disease that it ebbs and flows. You can seem to be in remission for a while, then a giant flare will come roaring in and knock you off your feet.

Have you watched the two videos by Zach Kornfeld from the Try Guys? In the first one he is very upbeat. He's feeling good, the Humira is kicking AS's tail, life is great. In the second one several months later, he says "it's getting worse". Symptoms have returned and he hurts. You can see it in his eyes even when he tries to be upbeat.

Am I correct that you've been on Humira less than a year? My uneducated guess is that if you stopped Humira completely, your symptoms would come back. I would call your state "medicated remission" meaning that your remission is dependent on continuing the medication. But I'm not a doctor, so you should discuss this question with your doctor.

I think the 3-week schedule is a good move. If pain starts to return, you can move back to the 2-week schedule. If you continue to be pain free, you and your rheumy can discuss what your next step should be.


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: seymour] #281673
10/08/18 02:44 PM
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Originally Posted by seymour
You’re taking this medication to stop hurting, and now that it works you want to stop it because you’re not hurting anymore? That’s the Humira doing its job buddy.

You should consider yourself lucky that the medication works that well and move on. No need taking the risk the sabotage that by stopping it. AS never goes away. What you have is clinical remission and if you stop your treatment you’ll be back in the land of pain maybe faster than you think.

I don’t want to sound harsh but I suggest you enjoy your treatment working so well and move on with your life. Enjoy the relief while it lasts and don’t do anything foolish.


I don't mean to come across as ungrateful that the Humrira is working. But it's not come without a cost. I've been sick for what feels like ... well, most of the summer. First with a stomach issue. And lately with a sinus issue. Fortunately, I seem to be past both now, having FINALLY licked the sinus problem this week with daily sinus rinses and Allerga D. But pre Humira I almost never got sick. So this has been unusual for me. And I'll admit to being curious about whether or not I could have my cake and eat it, too. Could I go off the Humira AND have my pain not return? My mother, who has RA, did. She was on Remecaid for a while but stopped taking it because she kept getting UTIs. She had many years before her RA symptoms returned.

For now, however, I plan to stick with the tri weekly injection schedule and see how that goes. So far it's been going well.

Last edited by MichaelSean; 10/08/18 03:25 PM.
Re: Remission and Biologics [Re: MichaelSean] #281674
10/08/18 04:46 PM
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I understand that having more illnesses can be annoying.

The thing is, you could stop Humira, be painless for a few months, and then see your pain come back with a vengeance and Humira not working again.

Unless you're getting really sick all the time, I suggest you try the tri-weekly injections and leave it at that. Or maybe switch to Enbrel?

Re: Remission and Biologics [Re: MichaelSean] #281681
10/09/18 09:13 AM
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Michaelsean, I would agree with Seymour Moss, extending out to 3 weeks certainly seems sensible then observing and responding to your symptoms. Hopefully you'll find that you can go another year without pain and then be discussing 4 weekly injections etc. I assume you have other biologic options beyond humira anyway that you may have not used?

Re: Remission and Biologics [Re: MichaelSean] #281683
10/09/18 12:48 PM
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Seymour Moss? 😛

Re: Remission and Biologics [Re: pdiddy] #281684
10/09/18 12:52 PM
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Originally Posted by pdiddy
Michaelsean, I would agree with Seymour Moss, extending out to 3 weeks certainly seems sensible then observing and responding to your symptoms. Hopefully you'll find that you can go another year without pain and then be discussing 4 weekly injections etc. I assume you have other biologic options beyond humira anyway that you may have not used?


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.

Re: Remission and Biologics [Re: seymour] #281686
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Originally Posted by seymour
Seymour Moss? 😛


Uh oh, Seymour, our secret is out. Yes everyone, Seymour is my long lost son! 😛


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] #281690
10/09/18 05:41 PM
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I could be though, my mother is your age! smile

And come to think of it, you seem to have similar personalities...

...

... Mom? laugh

Re: Remission and Biologics [Re: MichaelSean] #281695
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
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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
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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
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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
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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
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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
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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
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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
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It depends on the systems affected. If multiple systems are affected, I'd want to see an infectious disease specialist.

Re: Remission and Biologics [Re: MichaelSean] #281747
10/11/18 04:48 PM
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I just noticed two small red bumps inside my mouth. With the dry mouth and the loss of taste I'm now wondering if I have a candida infection? I know those on Humira are more prone to infections like that.

I've not been feeling right ALL SUMMER ... I'm beginning to wonder if it's all related and if I have some kind of a fungal/yeast infection that's affecting multiple systems?

Last edited by MichaelSean; 10/11/18 04:49 PM.
Re: Remission and Biologics [Re: MichaelSean] #281749
10/11/18 06:07 PM
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It's always possible. Why don't you ask your primary about it and whether he/she thinks a referral to an infectious disease specialist is warranted.


It might also be good to ask your neighbors in the apartment complex if they have been having any of the same issues that you are experiencing.

Last edited by SouthernMoss; 10/11/18 06:09 PM. Reason: additional thought

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] #281750
10/11/18 08:09 PM
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Just got back from my PCP. He thinks it MIGHT be a candida infection in my mouth rather than a bacterial infection of my sinuses. I THINK that may be right? I've had sinus infections plenty of times in my life and this doesn't feel like that. This seems MUCH more mouth based than sinus based.

He prescribed me oral Nystatin and told me to cease taking the antibiotic. He also took a couple of swabs of my mouth to send off to the lab.

It sucks not knowing FOR SURE what this is because if it's bacterial you treat it one way and if it's fungal you treat it another way. Someone on this forum who I believe was a nurse told me once, "Doctor are really just guessing. Educated guesses but guessing all the same." Which isn't super reassuring. But that sure feels true right now as I try to get to the bottom of what the hell is going on with me.

Re: Remission and Biologics [Re: MichaelSean] #281751
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I'm glad you let your primary look at it.

I wouldn't call it guessing as much as playing detective. They have to solve the mystery based on the clues we provide. Sometimes the solution is easy (a bone sticking through your skin is pretty easy to diagnose), but sometimes it can be tough as they try to piece together the evidence.

Hopefully the swab will put you closer to a definite diagnosis. Let us know how it turns out.


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] #281752
10/11/18 09:06 PM
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Just for context:

This is intended to be humorous but I want to share my inside perspective of the healthcare industry since I'm a retired RN. I will say "we" to include myself and everyone working in healthcare. We are expected to "know" stuff but we really don't. Most of it is a guess. Hopefully an educated guess but still a guess.

And later on:

It is difficult and complicated but you need to remember when it started, what changed when it started, what relieves it, time of day when it happens, where it happens, what your BP is when it happens, what you are doing when it happens and on and on. Write it down. Think of it as a mystery and you are looking for clues. The more clues the better the guess.


Dx. reactive arthritis with recurrent uveitis, HLA-B27+ (1993), polymyalgia rheumatica (PMR) added in 2008, trigeminal neuralgia added in 2009

Hx. cataracts (2009), tendon rupture-wrist (2010), HTN with LVH (2011), pulmonary embolism-multiple, extensive and bilateral (2012), total bilateral knee replacements (2015), craniotomy for microvascular decompression of trigeminal nerve (2016), surgery pending for L4-L5 disc bulge, stenosis and severe "degenerative" spinal arthritis (2016)
Re: Remission and Biologics [Re: MichaelSean] #281753
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I have been dealing with my own problems for 25 years and I still don't feel like I have any definitive answers to why it happens and what to do about it. I had brain surgery and when the surgeon got in there it wasn't what the MRI showed. After surgery I asked what caused the problem -- the surgeon replied, "ask God".


Dx. reactive arthritis with recurrent uveitis, HLA-B27+ (1993), polymyalgia rheumatica (PMR) added in 2008, trigeminal neuralgia added in 2009

Hx. cataracts (2009), tendon rupture-wrist (2010), HTN with LVH (2011), pulmonary embolism-multiple, extensive and bilateral (2012), total bilateral knee replacements (2015), craniotomy for microvascular decompression of trigeminal nerve (2016), surgery pending for L4-L5 disc bulge, stenosis and severe "degenerative" spinal arthritis (2016)
Re: Remission and Biologics [Re: MichaelSean] #281754
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There's ONE other possibility, I guess. And I see a dentist on Monday. But about the time this all started I lost a filling. And I suppose this could all stem from that.

The thing is there's no pain where I lost the feeling. It doesn't FEEL like an infected tooth. But then maybe the Humira is tamping down the inflammation.

All I know is the dry mouth and foul taste in my mouth are getting worse by the day. And each day it gets worse I grow increasingly worried.

Re: Remission and Biologics [Re: MichaelSean] #281755
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Here's a prior thread on oral thrush that may help: http://forums.spondylitis.org/ubbthreads.php?ubb=showflat&Number=227780

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Originally Posted by Winston
Here's a prior thread on oral thrush that may help: http://forums.spondylitis.org/ubbthreads.php?ubb=showflat&Number=227780


That thread is interesting.

I visited my physician four weeks ago and we I had a sinus infection. So he gave me an antibiotic AND prednisone. I wonder if, in combination with my Humira, this led to oral thrush?

I don't know ... I feel like I'm just throwing darts at a dart board full of possible causes at this point.

Re: Remission and Biologics [Re: MichaelSean] #281757
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Originally Posted by MichaelSean
I visited my physician four weeks ago and we I had a sinus infection. So he gave me an antibiotic AND prednisone. I wonder if, in combination with my Humira, this led to oral thrush?


If it is thrush then nystatin will treat it. Thrush is obvious once you have seen it and two small red bumps inside your mouth doesn't sound like thrush. Antibiotics are more likely to cause thrush so it is good to stop that. I would wait for the swab results before you start to worry what caused it because it is a waste to worry about it until you know the results. Are you still taking prednisone? Drugs such as prednisone, inhaled corticosteroids, or antibiotics that disturb the natural balance of microorganisms in your body can increase your risk of oral thrush.


Dx. reactive arthritis with recurrent uveitis, HLA-B27+ (1993), polymyalgia rheumatica (PMR) added in 2008, trigeminal neuralgia added in 2009

Hx. cataracts (2009), tendon rupture-wrist (2010), HTN with LVH (2011), pulmonary embolism-multiple, extensive and bilateral (2012), total bilateral knee replacements (2015), craniotomy for microvascular decompression of trigeminal nerve (2016), surgery pending for L4-L5 disc bulge, stenosis and severe "degenerative" spinal arthritis (2016)
Re: Remission and Biologics [Re: DadCue] #281764
10/12/18 01:11 PM
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Originally Posted by DadCue
Originally Posted by MichaelSean
I visited my physician four weeks ago and we I had a sinus infection. So he gave me an antibiotic AND prednisone. I wonder if, in combination with my Humira, this led to oral thrush?


If it is thrush then nystatin will treat it. Thrush is obvious once you have seen it and two small red bumps inside your mouth doesn't sound like thrush. Antibiotics are more likely to cause thrush so it is good to stop that. I would wait for the swab results before you start to worry what caused it because it is a waste to worry about it until you know the results. Are you still taking prednisone? Drugs such as prednisone, inhaled corticosteroids, or antibiotics that disturb the natural balance of microorganisms in your body can increase your risk of oral thrush.


Yeah. I was doubtful about thrush myself since, from what I've read, you'll have creamy white patches on your tongue that, when scrapped off, will bleed. I don't have that. My tongue does have a mild white coating on it but, to be honest, I'm not sure if that's any different from normal and I'm just now noticing it because I'm looking for it. Mostly it's a really dry mouth and THE worst taste I've ever tasted in my mouth. Just the foulest thing imaginable. (I miss being able to kiss my wife.) And the insides of my cheeks seem ... inflamed. I sleep on my sides and I've noticed when I wake up there will be raised bumps on each side of my cheeks where my teeth press against the cheek. That's unusual for me.

It's PROBABLY a bacterial infection of some sort. Either my sinuses or from the tooth where my filling fell out three weeks ago. I THINK the Humira makes these things more difficult to diagnose. As I mentioned before, the Humira works REALLY well in me. I had pain relief the next day after my first injection. And I've gone month between injections with no pain returning. So I've wondered if, when I get sick or get an infection, it's more difficult for me to tell now than it would have been prior to my going on Humira because I don't really get inflamed anymore.

I believe I read a post on here about two guys in Scotland getting Legionaire's disease but it was difficult to diagnose in the man who was on the biologic because it was tamping down most of the obvious symptoms.

Last edited by MichaelSean; 10/12/18 01:14 PM.
Re: Remission and Biologics [Re: MichaelSean] #281765
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Originally Posted by MichaelSean

I believe I read a post on here about two guys in Scotland getting Legionaire's disease but it was difficult to diagnose in the man who was on the biologic because it was tamping down most of the obvious symptoms.


That was a New York Times article that I linked a few weeks ago. It was listeriosis, not Legionaires, that resulted from eating spoiled salmon on a trip to Scotland. The man's colleague who also ate the salmon developed the usual signs of food poisoning, e.g., vomiting, diarrhea, and was better within a few days. The man on the biologic (Enbrel) did not develop the usual symptoms. Instead, he developed a systemic infection.

Re: Remission and Biologics [Re: Winston] #281766
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Originally Posted by Winston
Originally Posted by MichaelSean

I believe I read a post on here about two guys in Scotland getting Legionaire's disease but it was difficult to diagnose in the man who was on the biologic because it was tamping down most of the obvious symptoms.


That was a New York Times article that I linked a few weeks ago. It was listeriosis, not Legionaires, that resulted from eating spoiled salmon on a trip to Scotland. The man's colleague who also ate the salmon developed the usual signs of food poisoning, e.g., vomiting, diarrhea, and was better within a few days. The man on the biologic (Enbrel) did not develop the usual symptoms. Instead, he developed a systemic infection.


I'm trying not to worry myself any more than necessary but I've been concerned about a systemic infection. I've not felt right for several months now. Stomach pains when I eat. Terrible insomnia when I've never had it before in my life. Now this thing with my mouth. And ... this is hard to describe ... almost a mild icy-hot feeling when I wake up in the morning. Like my insides are cold and hot at the same time. It's really hard to describe.

A systemic infection seems pretty unlikely, though. As my my likes to remind me, I'm not, "that special." I tend to twist the notion of special in that I think every horrible thing is going to happen to ME.

Last edited by MichaelSean; 10/12/18 01:27 PM.
Re: Remission and Biologics [Re: MichaelSean] #281767
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Originally Posted by MichaelSean
I'm trying not to worry myself any more than necessary but I've been concerned about a systemic infection.

A systemic infection seems pretty unlikely, though.


And then you say:

"I've not felt right for several months now. Stomach pains when I eat. Terrible insomnia when I've never had it before in my life. Now this thing with my mouth. And ... this is hard to describe ... almost a mild icy-hot feeling when I wake up in the morning. Like my insides are cold and hot at the same time. It's really hard to describe. "

There may be a connection. It is possible to worry yourself sick.


Dx. reactive arthritis with recurrent uveitis, HLA-B27+ (1993), polymyalgia rheumatica (PMR) added in 2008, trigeminal neuralgia added in 2009

Hx. cataracts (2009), tendon rupture-wrist (2010), HTN with LVH (2011), pulmonary embolism-multiple, extensive and bilateral (2012), total bilateral knee replacements (2015), craniotomy for microvascular decompression of trigeminal nerve (2016), surgery pending for L4-L5 disc bulge, stenosis and severe "degenerative" spinal arthritis (2016)
Re: Remission and Biologics [Re: DadCue] #281768
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Originally Posted by DadCue
Originally Posted by MichaelSean
I'm trying not to worry myself any more than necessary but I've been concerned about a systemic infection.

A systemic infection seems pretty unlikely, though.


And then you say:

"I've not felt right for several months now. Stomach pains when I eat. Terrible insomnia when I've never had it before in my life. Now this thing with my mouth. And ... this is hard to describe ... almost a mild icy-hot feeling when I wake up in the morning. Like my insides are cold and hot at the same time. It's really hard to describe. "

There may be a connection. It is possible to worry yourself sick.


That's my wife's theory. I have read that anxiety can cause dry mouth. And a queasy stomach. And maybe that weird feeling inside of me, too. The insomnia, also. Maybe my body is pumping out stress hormones all the time.

I may have made myself sick from my stress and anxiety. I'll admit that's a possibility. I've become a bundle of anxiety and nerves this year for reasons I can't explain. We took a trip to Colorado during the summer and I felt well and slept well, while on the trip. My wife said that's because I was too busy doing things and interacting with family to stress out and worry all the time.

God ... if I've done this to myself ... that would just suck.

Except that the dry mouth came at a time that I was feeling GOOD. I thought I had things pretty under control. I was even sleeping a bit better.

But if this is stress and anxiety induced ... how would I break the cycle and get back to normal?

Last edited by MichaelSean; 10/12/18 03:03 PM.
Re: Remission and Biologics [Re: MichaelSean] #281769
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I think Lyrica is a great drug for anxiety. It also helps you sleep and reduces random aches and pains. It's actually approved to treat anxiety in Europe. In the US, it's approved to treat epilepsy and fibromyalgia, but many rheumies prescribe it off label for AS pain and anxiety. Once your doctor has done what he/she needs to do to eliminate fungus or bacteria as the source of your troubles, ask about Lyrica or some other treatment for your anxiety. I took a low-dose of Lyrica for a while, during a time I was particularly anxious, and it helped me a lot.

Re: Remission and Biologics [Re: Winston] #281770
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Originally Posted by Winston
I think Lyrica is a great drug for anxiety. It also helps you sleep and reduces random aches and pains. It's actually approved to treat anxiety in Europe. In the US, it's approved to treat epilepsy and fibromyalgia, but many rheumies prescribe it off label for AS pain and anxiety. Once your doctor has done what he/she needs to do to eliminate fungus or bacteria as the source of your troubles, ask about Lyrica or some other treatment for your anxiety. I took a low-dose of Lyrica for a while, during a time I was particularly anxious, and it helped me a lot.


My gastro prescribed me a low dose of amitriptyline (25mg) for my neutopathic pain. I know it's prescribed at low doses like that to treat anxiety. And for a while it was helping me sleep better, too. When I mentioned above that I was feeling GOOD, that's when the dry mouth and foul taste started. I THOUGHT it might be due to the Amitriptyline because I know dry mouth is a common symptom, but I'd been on 10mg of it earlier in the year and never had that problem. In fact, I've NEVER had a dry mouth problem in my life until the last three weeks. But I stopped taking the amitriptilyne a few days ago and the dry mouth and foul taste persist.

Maybe Lyrica would be better. It's something to consider.

By the way ... thank you ALL for your kindness in this thread. It's not easy to just lay it all bare like this as I have in this thread. And your kind words and thoughful responses mean a lot. I'm glad I found a forum as supportive as this one.

Last edited by MichaelSean; 10/12/18 03:49 PM.
Re: Remission and Biologics [Re: MichaelSean] #281771
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Originally Posted by MichaelSean
But if this is stress and anxiety induced ... how would I break the cycle and get back to normal?


That would be a good forum question.

I can only suggest what works for me ... it might not work for you. I would be receptive to all suggestions.

I believe there are other recent topics on this forum that are related to this --- "Am I stuck this way" comes to mind.

You can't let any disease make you "stuck". I used to rehash things over and over in my mind trying to understand the "why". That's fine for awhile but it doesn't change anything. Eventually I learned the "one day at a time" approach. Finally my focus became more oriented to the future. It is a process. It seems to me the keys to the process are having a positive outlook and having a forward / outward looking focus. It may be necessary to accept a new normal but, that's life.


Dx. reactive arthritis with recurrent uveitis, HLA-B27+ (1993), polymyalgia rheumatica (PMR) added in 2008, trigeminal neuralgia added in 2009

Hx. cataracts (2009), tendon rupture-wrist (2010), HTN with LVH (2011), pulmonary embolism-multiple, extensive and bilateral (2012), total bilateral knee replacements (2015), craniotomy for microvascular decompression of trigeminal nerve (2016), surgery pending for L4-L5 disc bulge, stenosis and severe "degenerative" spinal arthritis (2016)
Re: Remission and Biologics [Re: MichaelSean] #281772
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It's not uncommon for people with AS to have dry mouth. And when your mouth is dry, you will have bad breath and sometimes a foul taste because you have less saliva to wash away food particles, plaque, etc.that collect in your mouth. I'm not clear on whether you have had the filling replaced yet, but if you haven't, the hole where the filling was can collect material. Coffee breath is worse with dry mouth too.

Post nasal drip can give you bad breath too. If your sinus issues are causing post nasal drip that could be contributing to the odor and taste.

It's obvious you are letting your fears run rampant. You need to pull back and focus on one issue at a time. Right now those should be to get the tooth repaired (if you haven't already) and wait for the results of the throat swab. Don't let your mind go beyond that.

In the meantime, restart the amitriptyline. Drink lots of water. There's a mouth rinse called Biotene that helps with dry mouth. Find something to do to distract you from your worries. Take things one day at a time, as DadCue advises.

You might also consider talking to a counselor or therapist. They can help you develop techniques to cope with the stress you are dealing with.


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] #281773
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I take your point about people with AS having dry mouth issues. But this came on rather suddenly. Like just two weeks ago. So I don't think that's the case with me. I've NEVER had dry mouth issues in my life. I know things change, though, as we get older.

I may just be hoping against hope but, more and more, I really wonder if this is a dental issue. Which wouldn't have occurred to me. But some quick research (I was looking up why the foul taste seemed to be worse after exercising) led to the possibility that tooth decay or infection COULD be the source of my issues. As you swallow the bacteria from the infected tooth it can cause stomach inflammation. And the dry mouth and foul taste began AFTER a filling fell out. A filling in an area where there's a gap in my teeth that I'm always getting food stuck in. I brush twice a day and floss every night, but food has been getting caught in that gap for ... well, for a really long time now.

There's some pain in that area when I floss but I wonder if I've not felt more pain there because the Humira is tamping down the inflammation in my body? I've had issues on the left side of my head, and pain specifically right above where that tooth is, going back to last year. I actually went to a dentist about it. He didn't do an x-ray, just pressed on the area with a dental instrument, and declared that it wasn't a dental issue. But now I wonder. I stopped having the pain on the left side of my face when I started taking the Humira.

I have a BAD habit of putting two and two together and getting five ... and this is probably just the latest example of that. And what makes me doubt this possibility is that I just think there would be more pain there if I had an infected tooth. But I'll find out Monday. I have a dentist appointment to get the tooth where the filling fell out fixed.

And SouthernMoss ... I did make an appointment to see a counselor about my anxiety issues. I obviously need that. Although a solid answer as to what the hell is going on would probably do me more good than counseling.

Last edited by MichaelSean; 10/12/18 06:21 PM.
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