Author Topic: Before Sjogren's testing were you told to stop using Cevimeline, Pilocarpine?  (Read 218 times)

swf994

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My ENT prescribed and suggested I do a few things, as well as referring me to a rheumatologist to formally get tested.

It occurs to me that some direct, observational tests like Schirmer and salivary flow would probably be affected by any use of Cevimeline and Pilocarpine.

Also, they specify that their full effect may not be felt for months - suggesting to me that I should be off them for a fair amount of time before such testing.

What have you been told?

happylife

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Yes that is correct.

Infact they tell the patient to stop restasis eye drops for a month before they test schirmer and inflammadry tests.

cccourt1942

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I had never been offered, nor heard of the drugs FOR SjS.  Heck, I'd only heard of SjS when I made an appt for dx purposes.  BUT----I was on a Medrol pack starting about 2 weeks prior to my initial appt.  The day before my appt, I called to see if I should cancel it since I still had prednisone in my body ---albeit, after life diminishing daily.  I was told no prob. 

The day arrived, the questions were asked---oh...I was seeing a rheumatologist, not an ophthal nor ENT.  Having had horrid (apparent Sjogren's conditions/symptoms for which I was treated by an ophthal AND an ENT---for nearly 5 years---I had NEVER been offered much less knew about the tests you are asking about.  Neither of those tests was necessary to my dx.)  It was straight blood tests which resulted  as  positive across the panel.  (HIGH POSITIVE).  I'm saying this because even the day, I once again asked the physician about the Medrol.  He pshawed the possibility of drug interference.    Between the time I'd been told I needed to find a rheumy and be tested and the actual date, I had read up and knew more than a thimbleful about SjS.   Not much more.  An aside:  the doctor "agreed" to do the extensive blood work as he told me he doubted I had SjS, that instead he believed I had sicca.  An OLD Latin student, I knew what sicca was.  Did not upset me as I knew there was medicine for either end of the continuum.

Of all the entries I've made on this board, I've NEVER told this story---and I believe it's why the rheumy believed i'd be positive.  When questioning me re: symptoms, aggravations, etc, he asked if I had any trouble talking.  Well...I'm a speech/Language therapist.  In that field you understand the difference between articulation and language from the get go.  My mind immediately went to Wernicke's area and Broca's area:  the two areas which are command centers for the articulation and the other which is language.  I thought he was asking about THAT.  I answered no.  Not a bit of a problem.  However, as you all know, I could hardly string 8 words together without sipping or slurping water.  On the way home, it dawned on me what he was asking me.  It had been my first visit--I couldn't call back and tell him OH>>>NOW I know what you were asking.  He may have sent me straight to custodial care.

I had been misdiagnosed by ENT as sialadenits with no etiology beyond "it is a common problem."  I would have continuous days of blocked parotids...well and sub linguals.  This was anywhere from days to weeks for over 3 years.  The eye deal was diagnosed as allergic conjunctivitis.  I was given steroid drops....which would take days to calm the condition which honestly looked as if both eyes were bleeding. They weren't.  They were that red--and covered the entire eye.  Though I was told it was NOT contagious, I would not work, nor would I go anywhere until they calmed.  This would occur 2 to 4 times a year for nearly 5 years.  Of course you all know, I had no coverings on my eyes.  And did they hurt?  Yes.  I used individual vials/OTC eyedrops frequently.  To this day I haven't a clue why either of those doctors didn't realize what was happening.  Could have been due to my age....that's what the rheumy told me.  He said he'd never had a 71 year old walk thru the door for this condition.  I always knew I had a high pain tolerance threshold.  That was when I realized it was thru the roof.  btw:  the eyes?  I haven't shed a tear in nearly 30 years.  My lacrimal glands were apparently atrophied that long ago. 

I didn't need the lip biopsy, but would have had it had it been suggested. That's because I didn't really know anything about it: good or bad.

Best of luck to you,
Courtenay
Sjogren's, Psoriasis, Hashimoto's, Osteoporosis, Osteoarthritis, Cold hands/feet,  fatigue,  pilocarpine-25 mg , Restasis, Plaquenil, Low dose Prednisone (2-3 mg daily) Xylimelt, Citrucel, Alcon-Naturale, Tears,Omega 3, Vit.D, Caltrate+D3, Fosamax, CoQ10, Zinc, Oxtellar. Levothyroxene

swf994

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How do you manage to be a speech therapist, of all things, with this condition? Did you enter this field before having symptoms?

I would say this is my biggest problem. That, and a fatigue-inducing sleep disorder (SpO2 looks normal all through the night, oddly enough) which I'm not yet convinced is related to this, since I seem to have sicca only, which I'm also not yet convinced is due to Sjogren's, since I appear to have been born this way, 50+ years ago, am male, and have remained stable. (I think the sleep problems started in my 20s, though.)

Also, what does "having sicca" mean? I understand it as a description of symptoms, but this does not explain what causes them. I mean, you don't go to a doctor complaining of dryness and pay them for simply repeating it back to you in Latin.

I keep referring back to Clements' talk:
https://www.youtube.com/watch?v=z3pjlQEw3Tw

At 14:13-16:23 he shows you two charts of causes for dry mouth and dry eyes (1. drug side effects and 2. other conditions, none of which seem to really fit me, and definitely not from birth.)

And also, while my eyes and mouth do produce tears and saliva, albeit maybe less than they should, it's my nose that is by far the worst problem.

It has always felt like a dry, open blister inside, which is tolerable until the slightest impurity hits its mucous membranes (unlike with the eyes and mouth, there's no gland which produces mucus, as I understand it. It's supposed to seep out from the membranes, right?) Then it stings like heck, the mucus finally comes, and I'm a mess for hours afterwards.

Having horrible allergies at the same time doesn't help the situation.

So yeah, for various reasons I also have trouble speaking unless I constantly flush out the system with saline, which dries up 30 minutes later. I sometimes carry a hygrometer with me, to help me gauge how quickly I can expect to be screwed up in this way.

Inside public buildings it's too dry, outside I'm facing allergens. Wearing an allergy mask (from breathehealthy) helps both the dryness and the allergies, but then I have to explain that no, I'm not contagious, to everyone around me. What an existence.

Even if I may not have Sjogren's, I'm grateful to be among fellow lepers here, who at least get what I'm talking about.

****
Curse word test: I just noticed an interesting, automatic "edit."  Let me see how the site displays this: stings like heck, heaven and heck...   Yup, that's what happens. Maybe I should see what happens with some other four-letter words? Maybe a visit from a friendly moderator? ;-)
« Last Edit: May 17, 2018, 12:16:10 PM by swf994 »

Linda196

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Nothing wrong with your observation skills, SWF! Yes, we do have an autoedit program for some common "inappropriate" words and phrases, not because we anticipate their frequent usage, but because, as a world wide resource, we welcome people from any language and culture, and some words frowned upon in some areas, are common slang in others, and that presents the possibility of inadvertent offence from an innocent language-use difference.

Some words for which we haven't found a viable substitute will show as ***, while others will be substituted automatically, hopefully without damaging the impact of the posters underlying message.
Please check out our home page at http://www.sjogrensworld.org/index.html {{INCLUDES A LINK TO AMAZON SHOPPING!!}}
; and live chat at https://kiwiirc.com/client/irc.dal.net/#SjogrensWorld

cccourt1942

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swf:  I read this early a.m. today...in bed...on my phone.  I laughed myself silly.  Your incredulity is sort of how I felt about the whole disease.  Excuse me, the area of "auto immune" diseases.  One WOULD think I could have figured this out.  Our anatomy classes were from the waist up...and an extra on brain/oral.  Audiology was separate...but more anatomy.  But no.  It had either been so long since I had thought anatomically, I just kept drinking water.  Thirst = need for water.

And YES...for God's sake YES I chose the field of study decades before SjS.  I am going to send you a private message so as not to bore others...but I did want you to know there are numerous reasons I never tht of a disease. And the first is I hadn't a clue as to exactly what an auto immune disease was.  I'd actually lived in a place quite near the "Bubble Boy".  So when I thought of "immunodeficiency", my mind went to something serious.  Being thirsty and absence of tears was not serious.  Uncomfortable, but NOT a disease.  I googled excessive dry mouth so many times---and always had same results: Diabetes or SjS.  One I knew I didn't have (yearly blood work) and the other?  An Auto Immune DISEASE?  I couldn't have THAT.

Back to your basic curiosity and SjS and performing therapy: "In the beginning" "we" (speech therapists) carried water in a thermos. Then the little jug type thermos came along...and we carried those.  THEN.. the main hand out from vendors at conventions were those tall plastic water bottles with the thick, corrugated straws.  In short: I never met, observed, saw a speech therapist who didn't have water with them.  Never.  So--it was so routine, when it got as bad...in my 60s...I convinced myself I just had "old age" dry mouth.  Biotene gel wasn't on the shelves.  I tried the toothpaste, which did nothing.  But bottom line:  this was my job and old age.  I recall drinking a liter bottle of water prior to a session more than once.  It was a race to get thru a session and then the bathroom...then would start all over again.  By this time I was retired and doing contract work.  I worked partial days 3 to 4 days a week, 4 to 6 hours a day,  depending on the assignment.  On the days I worked, I went home---and barely recall sitting down before I fell asleep.  On days off, many days I didn't get dressed.  I had the burning tongue and could barely eat anything.  Sialadenitis was so frequent, the only substance i could swallow was water...or my body would attempt to create saliva and pass thru the duct....which it couldn't! Painful. You can see why the doctor practically  waved me off.  btw: I did NOT tell him what I'm telling you.  I thought it was "old age."  Why tell the rheumatologist that when he could see i was 71.

As to what does sicca mean to the great scheme of things:  I understood it meant dry.  And I was dry.  Period.  So when the doc said it, I had to agree with him. 

I'll send more about the decades of living with "something" later.  There were years of dramatically bad times...followed by years of no more than a sinus infection here and there.  Because of that, I know this disease waxes and wanes.  To those who figure it out in their 30s, I just thank God I was unaware.  I recall my first SEVERE attack...and it was primarily abdominal.  I lived on the equator at the time.  There was nothing to do but wait until i died or got better.  Drs eventually dxed me with dengue fever.  I didn't think that then, and still don't. But I did live!!  I was 35.
'
One more thing about drinking water.  In the early 70s, Dr. Atkins published his diet.  This diet (these #s might not be correct) required you drink 8 glasses @ 8 ounces water per day.  I did this ..and my mother in law commented:  Courtenay, how can you possibly drink MORE water?  I asked what she meant---where upon she told me she had never seen anyone consume water like I did.  I hadn't ever thought about it.  But---she was right. 
ccc
Sjogren's, Psoriasis, Hashimoto's, Osteoporosis, Osteoarthritis, Cold hands/feet,  fatigue,  pilocarpine-25 mg , Restasis, Plaquenil, Low dose Prednisone (2-3 mg daily) Xylimelt, Citrucel, Alcon-Naturale, Tears,Omega 3, Vit.D, Caltrate+D3, Fosamax, CoQ10, Zinc, Oxtellar. Levothyroxene

swf994

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So what do you and others understand by the term "Non-Sjogren's Sicca?"

Obviously you already knew you had a dryness to begin with.

I still don't get why your or any doctor would say this, as if they're willing to just leave it at "yes, you have a dryness," when it seems it would be of use to try and narrow such a "diagnosis" down to a cause.

Earlier in his talk, Clements suggests that Non-Sjogren's Sicca may have to do with the appropriate nerves not being stimulated enough to somehow trigger the various glands and membranes into producing the needed secretions as they should (which is different from them being destroyed by the immune system) - but he doesn't name any conditions that may be behind this.

If I had the rest of your and others' symptoms on top of mine, I'd be finished, but I may have something a little different. I'd be fine if only my nose would not dry out, but every time it does, it's pretty much incapacitating. When I think of all the blown opportunities this has cost me over a lifetime...
« Last Edit: May 21, 2018, 07:44:05 AM by swf994 »