Increased Pilocarpine to 4xdaily 5 mg.

[Carolina]

So dearest Sjogren's Angels,

I saw the NP in Rheumatology yesterday.  She offered to increase my Pilocarpine to 4 x day (5 mg tablets).

I will take two at night, and that should help my dryness and probably address my Thrush.  I showed her my tongue and she said "That's not so bad". 

So there is a level of Thrush that is acceptable?  I wanted to stab her when she said, that's not so bad.  Yes, she's see worse, but really do I have to put up with ANY Thrush.  GRRRRR  No offer of an RX or solution.  Just ' that's not so bad'.

It's like when I was in the reception area and noticed a 3'x5' sign on the wall behind reception which had a major misspelling:  RECEPTION was spelled RECEPTON.  I pointed it out to the person signing me in, she turned and looked and said "The sign has been up since April."

Does that mean it's NOT misspelled because it's been up 4 months?  She turned to look and I KNOW she didn't really 'see' the misspelling.  GRR.   

ALSO:  She is poorly trained or doesn't understand her training:  When a client points out a problem you say "Thank you, I'll let someone know about this."  You don't have to DO anything, but you offer to let someone know.  You do not say" It's been up since April."

I know this is a losing battle, and is one of the sore points in all of my relationships.....

Anyway, I got the increase in Pilocarpine, which is key.

I don't even want to go into the calls to the company that manages my Medical Alert device.  GRR

Regards, Elaine

[Kathy57]

Elaine,

I'm sorry that your problems with thrush were just "blown off" by the NP.  There is a simple test which involves a little scrape of the tongue that can be done in a doctor's office to test for thrush, but I've only had one knowledgeable doctor use it. 

Even my GI doctor says, we don't do that here.  Because our thrush can become chronic, it may look different.  Really they should be testing for it because then there would be no excuse not to treat!

Doctor's have to test for strep so why not thrush?  Makes me so mad!  What?  Do they think their eyes have microscopic capabilities?  I had been refused thrush treatment by my local docs because they said they had treated me too many times for it, and that I couldn't possibly still have it!
Soooooooooo.  I went to an Oral specialist at the University of Iowa who tested me for it in the office!  Got the results back right away, and guess what???  I was right.  This was before I was diagnosed and all of my doctor's were totally clueless😡

So I asked this doctor to send a letter to each of my doctor's with his findings and recommendations! He did and I let them all know how wrong they were.  Sadly, I don't think it meant that much to them but it sure meant a lot to me👌😉

Your NP should have given you a Rx.  Hopefully the extra pilocarpine will help.  I think it would be poetic justice if some of these docs could have our symptoms just for a week or so.  It would be good for them😂

Kathy

[cccourt1942]

Pilo, intertrigo, (fungus), patience, and the English language:

I take 10mg pilo in the a.m., 7.5mg about 2:00pm, then 7.5mg about 8:00pm.  I have tried reverse of first/last and doesn't work for me.  I am at my limit of the drug per day.  My dryness varies day to day.  I use biotene gel at night w' a sip of water at night.  Helps me.  I don't know how Sjoggies who cannot or don't choose to take one of the meds can function.  If you just went up from 15 to 20mg per day, you should be comfortable now.

Intertrigo--never heard that fancy word:  only fungus.  Mine started in my crotch.  Ick. I wish I'd had access to Irish then.  I went to the derm as it burned badly.  Ketaconazol. (sp?)  Miraculous.  Here's the trick he gave me...not as cool as specific shaving creams....but works: Hair dryer.  Separate folds and blow dry affected areas.  Use the fungus cream followed w' fabrics as outlined by Irish.  It's gone in a couple or three days.  At the time mine was dxed, I thought it was from using a laptop computer.  I.e, the heat from the computer.  The derm said it could be.  None the less--at the same time I was having cottage cheese mouth (palate) which I "washed" with clean, white washcloth.  Yes.  Then I would go to work.  The next a.m, the same thing. I couldn't believe it was thrush.  It came and went for about 2 years..as did the crotch fungus. Now I realize it must be a combination of one's SjS and one's body.  But the condition is successfully treated (to me) by using a hair dryer every time you bathe or shower. 

I lived on the equator for five years, and the after bath routine was using cornstarch on your body.  We would take a minimum of 2 baths a day...usually 3.  The cornstarch made the outdoors bearable.  I can't use stuff like golds body powder (nothing medicinal that is) but on days I have no lesions, I use plain old baby powder.  This works to retard any body moisture which feeds a fungus. 

There's patience, then there's just acceptance.  To me, acceptance of my age and aggravating conditions go hand in hand.  I do the best I can, and I find that acceptable to my life and where I am.  All my life I heard "age is relative".  And now?  Age is relative to Sjogren's and life!  I can live with it...but I live quietly and low key.  I can still travel but I find myself driving less and less. 

And then: there's the grammar/spelling thing.  We learned all those rules starting in elementary school--& we were graded on those skills.  I couldn't get those long ago memorized rules out of my head if I had a lobotomy.  The difference now?  Not only do kids not learn, nor does curriculum teach, the teachers didn't learn during their time.  Incorrect grammar by politicians, news programs, in movies/TV shows drives me crazy.  Maybe to distraction!  Why?  Once again--we were told we must PLUS we were corrected over and over.  It's a curse.  My grandson graduated from college a month before his 21st b'day in comp science & statistics.. his starting salary was more than I made when I retired.  He scoffed at SAT verbal portion.  And what happened with that?  Two years later SAT has decided to abandon the verbal portion. The times they are a' changin'.  Kids like the receptionist you encountered can't think beyond spell check.  If the computer "took it" (RECEPTON) then it must mean something AND there must be something wrong with you old lady for not realizing that..and (she thinks further) "what's wrong with YOU when NO ONE else has said a word in months!!".  We are cursed by spelling and grammar  knowledge rules in our heads.  I, for one, would rather be able to find my favorite grey t-shirt which I know I placed in my second drawer on the left side...but alas--not there.   All I can remember is how to spell RECEPTION and how to use my pronouns correctly.

[Linda196]

I'm with you, ccc! Especially on the grammar thing...my particular irritation is dangling participles, but not in the way you may think. Common usage has normalized them to the extent that I now feel ridiculous when I frame a sentence in such a way that they are avoided, and I have actually been asked if if English is my second language when I do. I must admit it was disheartening to teach my children to speak properly, only to have them bullied, often by a teacher, for being "high and mighty".

Luckily, I've always been blessed with patience, from early childhood I was always willing to wait until others needs were met, (possibly selfishly because there was always a nagging suspicion that if I didn't, it would fall to me to make sure they were LOL) As I get older, that patience tends to wear a bit thin at times, but can usually be fortified by a deep breath and some meditation (so far)

As a retired nurse, intertrigo is a concept with which I am far too familiar LOL. It is basically just fungus, it's the location, in the body folds, which limits its definition. In addition to the shaving cream trick, mouthwash (specifically alcohol free Listerine) is a good preventative and treatment. We originally used the regular Listerine, but as you can imagine, the high alcohol content could STING.

When I first had to start taking medications, in my twenties , Thyroid supplements after a thyroidectomy, I had the devil's own time remembering them, but now, the dozen or so pills and one injection are routine, as are the drops an lotions, unfortunately to the point that if I do miss something, I'm not necessarily aware of it until either the next dose is due , or symptoms ramp up.

I think we all do remarkably well dealing with our various symptoms and conditions; and if dealing sometimes means venting, stepping away for a bit, or even a meltdown, we've earned all of those outlets and more, and we always seem to step back up to the plate, and carry on.

[irish]

I have been dealing with "stuff" that hasn't really been identified as far as I am concerned.....my throat and oral cavity.....and when I feel like I can chew it I get really ugly. Or at least I would like to get ugly with someone. Yes, I get you. I have the Nystatin that I take fairly routinely and always at night. I feel like it keeps a lid on the yeast. I seldom have yeast that is identifiable as shown in pictures in my nursing books.

We are those autoimmune people with immune suppression that have the chronic yeast. I also have been known to get an overgrowth of normal bacteria that shows up when cultured but most doctors didn't treat because it was normal bacteria. My immunologist says "I don't care if it is normal, there is way to much of it and it can get you in trouble. You need antibiotic". So I would tell the doctors this and get some really weird looks. I swear that I grow bacteria that no one has ever seen!!!!

So, I hope that you can get some help with your yeast. And, they don't teach spelling as much anymore and have pretty much forgotten about phonics for some years though I think they have decided to bring it back cause it works. And, I am similar to Linda. I am older and don't care as much, but I was a punctuation freak and I hated ending sentences with a preposition. I don't know if my 3 boys were ever taught about prepositions!!!!!!!! One thing about some of the old education, it taught a little self discipline. I could go on, and on, but I won't. lol Irish

[quietdynamics]

Salivary Gland Scintigraphy was positive for damage to glands.
Dr. upped pilocarpine from 5mg to 7.5mg.  The very first higher dose I had a clearly bad reaction, palpitations, etc. My body vomited it.
So we went to 5mg x's 5.  Was taking at bedtime, but the sweating, then chills for me is too much.

Pharmacokinetics:
In a multiple-dose pharmacokinetic study in male volunteers following 2 days of 5 or 10 mg of oral Pilocarpine hydrochloride tablets given at 8 a.m., noontime, and 6 p.m., the mean elimination half-life was 0.76 hours for the 5 mg dose and 1.35 hours for the 10 mg dose. Tmax values were 1.25 hours and 0.85 hours. Cmax values were 15 ng/mL and 41 ng/mL. The AUC trapezoidal values were 33 h(ng/mL) and 108 h(ng/mL), respectively, for the 5 and 10 mg doses following the last 6 hour dose.

Pharmacokinetics in elderly male volunteers (n = 11) were comparable to those in younger men. In five healthy elderly female volunteers, the mean Cmax and AUC were approximately twice that of elderly males and young normal male volunteers. https://www.drugs.com/pro/pilocarpine.html

So if you can tolerate the nighttime dose of 10mg it may be of benefit. If you cannot tolerate just posting so you know it happens.

NP comment re: your condition "That's not so bad".  Could have meant she has seen a lot worse. Ophtamologist once remarked he did not "see signs of Sjogrens". Huh? Think he may have meant damage, while I sat there tearing from eyes aggravated from rawness and the bright office lights.  Just hindsight.