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Re: Remission and Biologics [Re: DadCue] #281764
10/12/18 01:11 PM
10/12/18 01:11 PM
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MichaelSean Offline OP
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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
10/12/18 01:18 PM
10/12/18 01:18 PM
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Winston Offline
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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
10/12/18 01:23 PM
10/12/18 01:23 PM
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MichaelSean Offline OP
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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
10/12/18 02:11 PM
10/12/18 02:11 PM
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DadCue Offline
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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.



Re: Remission and Biologics [Re: DadCue] #281768
10/12/18 02:59 PM
10/12/18 02:59 PM
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MichaelSean Offline OP
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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
10/12/18 03:32 PM
10/12/18 03:32 PM
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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
10/12/18 03:47 PM
10/12/18 03:47 PM
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MichaelSean Offline OP
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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
10/12/18 04:21 PM
10/12/18 04:21 PM
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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.



Re: Remission and Biologics [Re: MichaelSean] #281772
10/12/18 04:29 PM
10/12/18 04:29 PM
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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 - 58 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
10/12/18 05:35 PM
10/12/18 05:35 PM
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MichaelSean Offline OP
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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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