Author Topic: Hello everyone!  (Read 584 times)

Robi5

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Hello everyone!
« on: June 08, 2020, 05:37:53 PM »
I think this is the best forums for those with our illness.  I’m a male in my early 40s and was diagnosed last year after having fevers that would last a week at a time and came back three times, once every month.  All tests showed Sjogrens definatively, including blood markers.  I also seem to have a slight overlap into Lupus, but I don’t have it fully, and it still doesn’t make total sense to me but thats what I was told.  I’ve been so thankful that I’ve got a great Rheumy who genuinely cares and sets me up with other specialists when this disease inevitably causes further complications.

My wife and first love has also been a rock and stabilizing influence for me and our family.

I finally started Plaquinil a month ago, and it actually really seemed to work.  I’ve had awful chronic fatigue and joint/muscle pain for the last 2-3 years, and after a couple weeks, it really seemed to make me feel a little normal again. 

But here was why I really wanted to post this...I was having issues with choking while I would eat food for the past few months.  It would go down the wrong tube so I would have to cough it out.  It almost became normal to me after a while.  Once at my moms eating dinner, she saw me go through it, and I was so used to it I didn?t even think anything of it.  She made me tell my Rheumy at my next appointment she was so concerned.

Fast forward, I get referred to a Gastroenterologist, who after doing some test finds I have a throat infection (fungal), that requires two weeks treatment with medicine.  I also got prescribed an acid reducing medicine but thats a bit besides the point.  So if you have any issues with choking while eathing, please get tested or referred to have this checked out.  I’m more than half way through the treatment and don’t hardly choke on food anymore.  I’ll update if this changes.  The Gastro Dr also said that he has treated many Sjogrens patients with this same infection.  I won’t bore you with the details as you can google them about this infection.  I think its called oral thrush.

Unfortunately the medicine for this required me to stop Plaquinil for its duration as it binds with it.  After one week I was doing ok, and then bam, yesterday I had one of the worst chronic fatigue episodes, where I could barely get up, or keep my eyes open, even stopped hearing in my one ear for the last few hours (no fever though).  I was such a skeptic about PQ, that I didn’t take it for more than a year after being diagnosed, but now I can see that it actually really works (for me). 

Sorry for the novel, just excited to post for the first time here after just reading for a long time.  I’ve been blessed with some amazing doctors so I just wanted to share what I’ve learned.

Have a good day everyone!
« Last Edit: June 08, 2020, 05:42:24 PM by Robi5 »

Joe S.

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Re: Hello everyone!
« Reply #1 on: June 09, 2020, 09:20:23 PM »
Welcome to this forum.
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Linda196

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Re: Hello everyone!
« Reply #2 on: June 10, 2020, 04:28:22 AM »
Welcome to the forum, and thank you for your kind words about it.
I won't say welcome to Sjogren's because it seems you've already had quite an initiation, and it's not a club anyone wants to belong to anyway!

The fungal infection you have is indeed, common to Sjogren's patients, and there have been a lot of posts about it here, so a forum search (upper right corner) will find many entries about management. It is unfortunate about having to abstain from your Plaquenil, but treating hte acute takes preference over the chronic in this case, and you will be able to get back on it soon enough. The sudden increase in symptoms is possibly only partially to ti its absence, since infections and the stress of additional illness can often cause flares, which we all face from time to time. The trick, if there is one, is to learn to pace yourself during them, and hopefully not become frustrated which leads to more stress.

The crossover of symptoms in autoimmune disease is confusing to say the least, and many of them have very similar symptoms anyway. My rheumy gave me the most insight when he told me he refers to autoimmune as a spectrum disorder, and my antibodies symptoms fall mainly in the Sjogren's arc, but with minor swings into MS and Lupus areas (neither of which have been diagnosed).

It sounds like you have a pretty good handle on your condition, as well as some wonderful family support. Please keep us updated, and enjoy your time here (your lovely wife is welcome, too)
Please check out our home page at http://www.sjogrensworld.org/index.html {{INCLUDES A LINK TO AMAZON SHOPPING!!}}
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jazzlover

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Re: Hello everyone!
« Reply #3 on: June 10, 2020, 02:58:52 PM »
Welcome, Robi!

Did your doctor also suggest a change in diet so that the thrush will not come back? It usually goes hand in hand with candida in the gut, so a diet change will be helpful too.

Hope you can get back on the Plaquenil soon!!
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, recovered from Lyme disease

Robi5

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Re: Hello everyone!
« Reply #4 on: June 12, 2020, 09:39:30 AM »
Welcome to this forum.
Thank you  :D

Robi5

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Re: Hello everyone!
« Reply #5 on: June 12, 2020, 09:44:11 AM »
Welcome to the forum, and thank you for your kind words about it.
I won't say welcome to Sjogren's because it seems you've already had quite an initiation, and it's not a club anyone wants to belong to anyway!

The fungal infection you have is indeed, common to Sjogren's patients, and there have been a lot of posts about it here, so a forum search (upper right corner) will find many entries about management. It is unfortunate about having to abstain from your Plaquenil, but treating hte acute takes preference over the chronic in this case, and you will be able to get back on it soon enough. The sudden increase in symptoms is possibly only partially to ti its absence, since infections and the stress of additional illness can often cause flares, which we all face from time to time. The trick, if there is one, is to learn to pace yourself during them, and hopefully not become frustrated which leads to more stress.

The crossover of symptoms in autoimmune disease is confusing to say the least, and many of them have very similar symptoms anyway. My rheumy gave me the most insight when he told me he refers to autoimmune as a spectrum disorder, and my antibodies symptoms fall mainly in the Sjogren's arc, but with minor swings into MS and Lupus areas (neither of which have been diagnosed).

It sounds like you have a pretty good handle on your condition, as well as some wonderful family support. Please keep us updated, and enjoy your time here (your lovely wife is welcome, too)

Thank you for reminding about search feature.  Makes sense as this website has years of posts well before I discovered it.  Will browse through for helpful points.

Really appreciate you sharing what your rheaumy said, that makes it easier to understand.  Mine I think tried explaining it like that too, but I like the term “spectrum disorder”, it computes well in my brain  ;D

Robi5

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Re: Hello everyone!
« Reply #6 on: June 12, 2020, 09:49:16 AM »
Welcome, Robi!

Did your doctor also suggest a change in diet so that the thrush will not come back? It usually goes hand in hand with candida in the gut, so a diet change will be helpful too.

Hope you can get back on the Plaquenil soon!!

No he didn’t, but thanks for mentioning that.  I guess I’ll have to ask my Rheumy as the Gastroenterologist is sort of done.  I already had my follow up with him.  I even asked him when he phoned for it what I can do to prevent, and it was literally crickets chirping he was so quiet.  Maybe its not his job, but a little input would’ve been nice other than prescribing medicine.  Ah well, I think I’m spoiled by my Rheumy and family doctor who are so forthcoming with helful advice.

I start back on Plaquenil today, hopefully I can adjust to it as well as first time!
« Last Edit: June 12, 2020, 09:51:33 AM by Robi5 »