Author Topic: how do they know Plaquenil slows the progression of sjogrens??  (Read 22490 times)

jasonsmith

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Re: how do they know Plaquenil slows the progression of sjogrens??
« Reply #45 on: October 25, 2011, 08:52:35 AM »
Jason,
The more nervous you are about the situation, the dryer your mouth will be.  It's part of the parasympathetic autonomic nervous system "fight or flight" response.  As soon as I calmed down about my diagnosis, the better my dry mouth became.  It's not totally moist but it's not near as dry and if I relax when I go to bed I don't wake up with as much of a sore throat and mouth.  Perhaps your docs can give you something to take the edge off.

I've had anxiety for 15 years. So, I doubt it all of a sudden became a problem with the dryness. I've had to deal with going to school and work with a chronic diarrhea/gas problem that I had to worry about all day long having an accident and embarrassing myself. I don't work anymore. So, some of that anxiety is lessened with regards to the diarrhea.

Some mention I analyze too much. I don't think I do it enough. I had sinus surgery years ago where they cut out some air pockets in the bone in my sinuses and cut out some turbinates. Later on a different ENT mentioned how dry my sinuses are and didn't recommend anymore surgery based on what has already been done. I later learned when you have turbinates cut out, you run the risk of developing empty nose syndrome. Which is NOT good. Guess what, the doc that did the surgey didn't tell me anything about any long term risks from the surgery like with empty nose syndrome. These are kinds of problems people run into because they don't fully understand the risks or what all is involved. Since the doctors aren't going to tell me, I have to find out for myself.

I saw a Rhmy who gave me some Prednisone to try. He gave it to me like candy. Didn't tell me anything about it other than that is what he usually gives to people with Lupus like stuff. I didn't notice anything so he gave up. But if it worked, I guess he would have kept giving me refills even though he didn't tell me any risks. I had to figure out the risks on my own.

So, yes for my health and benefit, I have to look into stuff myself as no one else will. Example, how many people out there are blind because their docs didn't tell them the risks of Plaquenil toxicity? There are tons.

The biggest side effect of Anxiety meds is dry mouth. So, I don't see the benefit of taking anxiety meds to help reduce anxiety on the theory that the anxiety could be adding to the dryness when the treatment itself probably will cause dryness.

irish

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Re: how do they know Plaquenil slows the progression of sjogrens??
« Reply #46 on: October 25, 2011, 09:52:07 PM »
Jason, I said it before and I will say it again, you sit and agonize over everything you read. If you had empty nose syndrome you would know it. You don't have it and the surgery is long past so why even talk about it.

Please quit doing this to yourself and relax. You almost sound like you are crusing the internet trying to find out more bad things to worry about. Life is what you make it. Agonizing over the past, present and future is totally an exercise in futility. There are some things that we just have to put in the hands of a higher power and go on with our lives.

As was said earlier, it seems that you get stuck on a subject and can't give it up. Many of these things don't have a final or perfect answer and talking about them day in and day out won't change things. Irish

jasonsmith

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Re: how do they know Plaquenil slows the progression of sjogrens??
« Reply #47 on: October 26, 2011, 06:03:42 AM »
Jason, I said it before and I will say it again, you sit and agonize over everything you read. If you had empty nose syndrome you would know it. You don't have it and the surgery is long past so why even talk about it.

Please quit doing this to yourself and relax. You almost sound like you are crusing the internet trying to find out more bad things to worry about. Life is what you make it. Agonizing over the past, present and future is totally an exercise in futility. There are some things that we just have to put in the hands of a higher power and go on with our lives.

As was said earlier, it seems that you get stuck on a subject and can't give it up. Many of these things don't have a final or perfect answer and talking about them day in and day out won't change things. Irish

I've been seeing doctors for over 10 years now. Everytime it's like hitting a brick wall as the doctors don't want to do anything. So, my appointments are usually always a first or second time appointment as the doctors give up after the first visit. My problems progressivly get worse every year. They started 15 years ago, so it is pretty advanced. I was pretty much disabled before I even started working. So, I haven't been able to have a career or family because of it. So, obviously I'd like to get better. Since the docs don't do anything, I've had to take an active approach. I decided years ago I didn't like to just sit around getting worse every year waiting on a doc to finally do something. I'm still fairly young, and I'd like to be able to take care of myself and not go into a nursing home. That's the reality.

Empty nose doesn't happen over night. It can develop years or decades later after the surgery. Especially when you get older. So, yes it's still a possibility. My ENT had already talked about years ago how dry my sinuses are. Dry sinuses is a symptom of empty nose. Not saying I have empty nose, but it is a possibility that it could have been starting years ago as my ENT documented real dry sinuses. So, it's something I've been dealing with. I know what surgery I've had and what was cut out. I've looked at my CT scans of my sinuses. When you have turbinates cut out, you run the risk of developing empty nose. The articles I've read on ENS states that it is best to avoid any turbinate cuting unless something extreme like tumors or polyps. There was enough cutting that my ENT recommended no more surgery. I actually had two surgerys of my sinuses.

With all due respect, how can you say I don't have something when you don't know any of facts? It's like me saying you don't have Sjogren's syndrome. It reminds me of years ago a couple of doctors telling me I'm too young to have the symptoms I have.

Narablueeyes

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Re: how do they know Plaquenil slows the progression of sjogrens??
« Reply #48 on: October 26, 2011, 06:32:33 AM »
Jason, I said it before and I will say it again, you sit and agonize over everything you read. If you had empty nose syndrome you would know it. You don't have it and the surgery is long past so why even talk about it.

Please quit doing this to yourself and relax. You almost sound like you are crusing the internet trying to find out more bad things to worry about. Life is what you make it. Agonizing over the past, present and future is totally an exercise in futility. There are some things that we just have to put in the hands of a higher power and go on with our lives.

As was said earlier, it seems that you get stuck on a subject and can't give it up. Many of these things don't have a final or perfect answer and talking about them day in and day out won't change things. Irish

I've been seeing doctors for over 10 years now. Everytime it's like hitting a brick wall as the doctors don't want to do anything. So, my appointments are usually always a first or second time appointment as the doctors give up after the first visit. My problems progressivly get worse every year. They started 15 years ago, so it is pretty advanced. I was pretty much disabled before I even started working. So, I haven't been able to have a career or family because of it. So, obviously I'd like to get better. Since the docs don't do anything, I've had to take an active approach. I decided years ago I didn't like to just sit around getting worse every year waiting on a doc to finally do something. I'm still fairly young, and I'd like to be able to take care of myself and not go into a nursing home. That's the reality.

Empty nose doesn't happen over night. It can develop years or decades later after the surgery. Especially when you get older. So, yes it's still a possibility. My ENT had already talked about years ago how dry my sinuses are. Dry sinuses is a symptom of empty nose. Not saying I have empty nose, but it is a possibility that it could have been starting years ago as my ENT documented real dry sinuses. So, it's something I've been dealing with. I know what surgery I've had and what was cut out. I've looked at my CT scans of my sinuses. When you have turbinates cut out, you run the risk of developing empty nose. The articles I've read on ENS states that it is best to avoid any turbinate cuting unless something extreme like tumors or polyps. There was enough cutting that my ENT recommended no more surgery. I actually had two surgerys of my sinuses.

With all due respect, how can you say I don't have something when you don't know any of facts? It's like me saying you don't have Sjogren's syndrome. It reminds me of years ago a couple of doctors telling me I'm too young to have the symptoms I have.

I wasn't going to get into this conversation, just trying to see if I could find anything of value that I could use for myself.  But I just want to ask you Jason, WHAT is it you're trying to get out of this conversation?  I can understand your frustration; I've been looking for answers for years and don't like most of the attitudes of indifference and idiotic hype I've rec'd from various drs and nurses. 

Im just not sure what you're after here.  A fight?  Help?  An ear to hear you?  You'll gladly get help, suggestions, and plenty of shoulders to lean on, but if you're looking for a fight, you're fighting with the wrong people.  And I only say "fight" because...well, it seems that no one can satisfy your posts and you argue with everything. 

I've seen posts of people who had plaquenil toxicity and suffered greatly for it, but there are more people out there who have benefitted from it.  And most of those posts I read said that the drs hadn't told the patient about receiving consistent eye care from their optha dr.  Seemed like the doctors didn't even know about plaq toxicity until it was too late.

I'm new to all this Sjogren's and lupus and IBS-A, that's why I joined these forums: to learn.  I want to help, I really do, but I'm just not sure what you want.  I don't think anyone on here does.  I'm sorry if I've over stepped my boundaries but I felt compelled to say something.

gold55

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Re: how do they know Plaquenil slows the progression of sjogrens??
« Reply #49 on: October 26, 2011, 07:24:13 AM »
The biggest side effect of Anxiety meds is dry mouth. So, I don't see the benefit of taking anxiety meds to help reduce anxiety on the theory that the anxiety could be adding to the dryness when the treatment itself probably will cause dryness.
(sorry Nara, I didn't put your words in a quote)!!


Anxiety (only) meds such as Lorazepam "do not cause any dryness" Nara....it's the meds for depression which they sell as being "depression and anxiety" drugs....these are the ones with mouth drying side effects such as Zoloft, Paxil, Prozac, Lexapro, etc.  It's the anticholinergic effects of those drugs.  There is not the same effect in "anxiety only" drugs like Lorazepam.
This is what I've been told by MD's and I think you can look it up on the internet to verify. :)   
« Last Edit: October 26, 2011, 07:27:21 AM by gold55 »
Dx#1:  dx changed to Sicca Syndrome + UCTD (how wonderful)
Dx#2:  Osteoarthritis and high cholesterol
Meds:  my golden retrievers, my doodle, otc tylenol, ibuprofen, mobic, vitamins, omegas, oral pilocarpine, liguid chondroiten/glucosamine with

Narablueeyes

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Re: how do they know Plaquenil slows the progression of sjogrens??
« Reply #50 on: October 26, 2011, 07:28:29 AM »
The biggest side effect of Anxiety meds is dry mouth. So, I don't see the benefit of taking anxiety meds to help reduce anxiety on the theory that the anxiety could be adding to the dryness when the treatment itself probably will cause dryness.

Anxiety (only) meds such as Lorazepam "do not cause any dryness" Nara....it's the meds for depression which they sell as being "depression and anxiety" drugs....these are the ones with mouth drying side effects such as Zoloft, Paxil, Prozac, Lexapro, etc.  It's the anticholinergic effects of those drugs.  There is not the same effect in "anxiety only" drugs like Lorazepam.
This is what I've been told by MD's and I think you can look it up on the internet to verify. :)

Um, that wasn't me.   :)

valene2009

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Re: how do they know Plaquenil slows the progression of sjogrens??
« Reply #51 on: October 26, 2011, 08:30:17 AM »
just my 2 cents.. i take xanax and it helps me greatly-not only with my anxiety but with the dryness of my eyes... i get so stressed when they are dry and if i take a little xanax i calm down and the dryness gets way better... i havent noticed my mouth getting any drier from taking xanax.. actually the opposite.. again i have extreme anxiety with this disease and the xanax does help

Meld256

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Re: how do they know Plaquenil slows the progression of sjogrens??
« Reply #52 on: October 26, 2011, 09:38:59 AM »
valene,

Glad to hear xanax has helped you in several ways.  ;)  This disease can certainly cause some anxiety in many of us.
Take care,
Melinda

Meld256

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Re: how do they know Plaquenil slows the progression of sjogrens??
« Reply #53 on: October 26, 2011, 09:47:12 AM »
Gold,

Sometimes these "quotes boxes" get confusing, or maybe it's just me.  ;)  I think the response was Jason's to you on reply #45 about anxiety meds causing more dry mouth.

You might have already seen that, so I'll step back out of the discussion.
Have a good day,
Melinda

Narablueeyes

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Re: how do they know Plaquenil slows the progression of sjogrens??
« Reply #54 on: October 26, 2011, 09:48:33 AM »
just my 2 cents.. i take xanax and it helps me greatly-not only with my anxiety but with the dryness of my eyes... i get so stressed when they are dry and if i take a little xanax i calm down and the dryness gets way better... i havent noticed my mouth getting any drier from taking xanax.. actually the opposite.. again i have extreme anxiety with this disease and the xanax does help

I take Ativan when I get stressed but I've never really given much thought or noticed any dryness issue when taking it.

gurs

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Re: how do they know Plaquenil slows the progression of sjogrens??
« Reply #55 on: October 26, 2011, 10:40:35 AM »
I just read where extreme stress and anxiety and cause even more dryness....that makes sense!!
Our bodies just tense up so much more...wowie....

Gursie
52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements

Dry1000

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Re: how do they know Plaquenil slows the progression of sjogrens??
« Reply #56 on: October 26, 2011, 07:22:06 PM »
Hey everybody

           My bloodwork and lip biopsy comes up normal,however I had HORRIBLE DRY MOUTH and EYES, I was super tired and just felt horrible. I have been on Plaquinel for a little over a year now and I feel soooo much better. I believe Plaquinel does slow down the progression or even has stopped it for me. Plaquinel has given me my life back and I am so thankful for it.

gold55

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Re: how do they know Plaquenil slows the progression of sjogrens??
« Reply #57 on: October 26, 2011, 08:09:13 PM »
Dry, That's a great review on Plaquenil that Jason should read.  I agree that anxiety causes more dryness in eyes and mouth.  Most people I've noticed are on anti depressants and they do have some drying effects compared to a straight anxiety med like xanax, lorazepam.  The point I was trying to make is that many drs prescribe the antidepressants for people with anxiety over SJS and I don't know why they just don't give them the non-drying anxiety meds except for the fact that they can be addictive.
Dx#1:  dx changed to Sicca Syndrome + UCTD (how wonderful)
Dx#2:  Osteoarthritis and high cholesterol
Meds:  my golden retrievers, my doodle, otc tylenol, ibuprofen, mobic, vitamins, omegas, oral pilocarpine, liguid chondroiten/glucosamine with

irish

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Re: how do they know Plaquenil slows the progression of sjogrens??
« Reply #58 on: October 26, 2011, 08:16:33 PM »
The xanax, etc. and other anti-anxiety drugs are also drying. These drugs that affect the central nervous system pretty well all cause some dryness---the amount of dryness is a very individual reaction. Wish that none of the drugs caused dryness----or nausea.  ::)Irish ;D

irish

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Re: how do they know Plaquenil slows the progression of sjogrens??
« Reply #59 on: October 26, 2011, 09:30:09 PM »
In reference to the turbinotomy---I had a very aggressive one done about 10 years ago. It was actually the worst surgery I have every had and I have had a fair amount of them. I know all about the dry nose syndrome and I have to add that I have not sat around thinking that I should worry about getting it. My nose and sinuses give me fits and I have been doctoring since 1996 with them. You did not indicate that you do have the dry nose syndrome the way I read it.

There is so much that we go through and to sit and agonize over all of it and relive it seems to be an exercise in futility as they say. We all do the best we can---we research some, ask our doctors questions, fire a doc and get a new one if needed and we go on.

Researching all our ailments and trying to keep ahead of the game can become an obscession that will never be satisfied. As a medical professional I have long ago learned that the more I read about a disease process or symptoms the less I know. Literally!!! Our brain goes on overload and we start to read things into what we are reading and make faulty opinions out of the internets faulty opinions---especially when we are dealing with our own illnesses.

Jason, I don't expect you to answer this, but I also wonder what you are trying to accomplish or get out of this site. None of us seem to be able to answer your questions and you say the same things over and over.  I am not trying to be rude but I am wondering just where you are coming from or where you are going with this. Please know that I do care about your condition and hope that you are getting the care that you need.

I also wonder if you have any hobbies or anything that you can do as a diversion to get your mind off your illness and also to socialize. We all need to do something besides think about our illnesses.  Good luck. Irish ;D
« Last Edit: October 26, 2011, 09:35:29 PM by irish »