Author Topic: Interested in talking to males with sjogren's syndrome.  (Read 17713 times)

lynnmarie219

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Re: Interested in talking to males with sjogren's syndrome.
« Reply #15 on: January 15, 2010, 06:06:38 PM »
Hi Sad and welcome to Sjogrens World!

I hope you find this site useful and come back here often to learn and share as much information as you want or need to!

malew/sjogrens

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Re: Interested in talking to males with sjogren's syndrome.
« Reply #16 on: January 15, 2010, 07:00:43 PM »
Amen to that Sad.

I have been on Plaquenil since November 6th. Diagnosed in October 2009. I had a positive lip biopsy and Rose Bengal test. I saw my Rheumy today. He thinks that the Plaquenil is finally taking effect.

Drugs like Sogren's affect each person differently. I have had no side effects.You just need to make sure you regularly see your eye Dr. as in rare cases it can cause eye problems like blindness. My eye Dr, said he has seen many patients on Plaquenil and only two of them had eye complications.

Recently I have been experiencing chest pain and right sided rib pain. He was concerned that it may have gone systemic (causing organ damage) so I had an electrocardiogram on Tuesday and that was negative. My heart is fine. No periocarditis. I had a CAT scan on my lungs today to see if any pleurisy or other problems. I did not get the results back yet but he thinks it will be negative.

He said that a lot of people with Sjogren's have Costochondritis, which is what he thinks I have. I had a full body bone scan done on 12/30/09 to see if I had any damage to my joints and the scan caught dark area around my 6th anterior right rib. This is where my pain and soreness is. Costochondritis is an inflammation of a rib or the cartilage connecting a rib. It can cause chest pain, pain when breathing and shortness of breath. This would explain my symptoms. He said that if my CAT scan comes back with inflammation of the lungs that I would need to go on Methotrexate. I am hoping it will be negative. I am sure it will be.

I asked my rheumy if Sjogren's ever goes into remission. He said no and that this is a life long disease. He said that the dryness and inflammation will always be there but may dissipate to a point where it may feel like it has gone away but then can come back in flares. I was on Prednisone for one week and have been off it for one week now. It seemed to help with my major joint pain in fingers, knees and elbows. But he also thinks that the Plaquenil is starting to work since have been off steroids and joint pain not as bad.

My eyes have been very dry, burning and sore and I get real tired in afternoon. These two things have been constant with me. I told my Rheumy that when ever I get some type of pain I start wondering if it is due to Sjogren's and start worrying. He told me to stop worrying and to let the Plaquenil do its job. He said it can take up to 5-6 months to get the full effects of the drug.  He is a good Rheumy. I think it helps to have a good Dr.



http://arthritis-symptom.com/a-c/costochondritis.htm

Patze

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Re: Interested in talking to males with sjogren's syndrome.
« Reply #17 on: January 15, 2010, 07:52:25 PM »
Hi Sad,

Let me also welcome you to the SJS World and family!  Please do look around as there are a lot of topics that you might find interesting.

I've been on Plaquenil for four years now and it's helped with the sheer exhaustion, and the pain (I take it with food as it irritates my stomach otherwise).

Again, welcome and I too hope that you find this board very useful!

Take care -

Patze
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sad

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Re: Interested in talking to males with sjogren's syndrome.
« Reply #18 on: January 20, 2010, 07:21:34 PM »
Does anyone think that sjs effects men more severely then women. I have read this info on a few other sites and wonder if it is true. My dad also had sjs so it looks like it runs in my family. I do worry about my kids getting it.

Epson

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Re: Interested in talking to males with sjogren's syndrome.
« Reply #19 on: January 21, 2010, 08:50:37 PM »
Men with SS are more prone to arthritis, vasculitis and lymphadenopathy, while women experience more auto immune thyroiditis and Raynaud's.  Women appear to be the only ones suffering from dry vaginas, I've never been a women, so it is hard for me to gauge who has a worse time with SS.

When it could to dishing out pain I don't think Sjogren's is sexist, it's an equal opportunity AI disorder.

inga

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Re: Interested in talking to males with sjogren's syndrome.
« Reply #20 on: January 22, 2010, 05:28:17 AM »
I feel like a voyeur in here.

Here goes.  Women probably DO get diagnosed more than men...our dry personal parts affect men too!  A disgruntled hubby will get the lady to the doctor.

Men have a higher incidence of Reiter's Syndrome.

Women may have autoimmune disease at a higher rate due to microchimerism, but I do think men are underdiagnosed.

I have SjS with peripheral neuropathy and vasculitis....no Raynauds, no thyroid...not yet.

Oh, and I own the POWER TOOLS in my house....just got a new Paslode Nail Gun....sweet. 

Off to get some KY.  It is Friday nite afterall.

Rostradamus

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Re: Interested in talking to males with sjogren's syndrome.
« Reply #21 on: January 22, 2010, 12:38:23 PM »
Well at this site I'm Rostradamus, the only place I have an ailias. I have severe Sjogren's with a clear onset of symptoms after Shingles attacked my right eye and E.R. gave me the wrong treatment. Viral triggering of an auto-imune disease...  I believe and have a good working chemical modle down to the covelent bonding of the viral caspid to human cell membranes. Sure doesn't stop it. I had over 70% off all symptoms before diagnosis, too many to list, over 40. That's right, I checked against a list of 63 symptoms.                          My computer will not paragraph!  Sorry.    So what do you want to know?        And if it was a group confrence, I wouldn't mind the odds of ten women per man. It didn't bother me in gymnastics or modern dance.  Frankly I think part of the auto-imune responce could be linked to testosterone; lack of. Note that auto-imune in men is often at a later age when the hormone is dropping off.   So let's not be rude to the girls. If it wasn't for their curiousity about our differences,  where would mankind be today?

Billydude

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Re: Interested in talking to males with sjogren's syndrome.
« Reply #22 on: January 23, 2010, 10:22:14 PM »
A guy here!   Dryness is not too big of an issue for me.  However,  my doctor told me he had about 6 people with Sjogrens and I was the worse.  Its effects my CNS the most with autonomic neuropathy.   I don't really have any pain at all but fatique,  uncontrolable sweating when its warm and a weird kind of narcalepsy so I can't drive any distance any longer.  Some neuropathies as well.     I think you may  not see men on here as much because by nature men aren't ones to share and talk about their issues as much as women.   
P.S.  My personal opinion that it effects men in that certain area as well. 

Katybarstool

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Re: Interested in talking to males with sjogren's syndrome.
« Reply #23 on: January 24, 2010, 02:14:49 AM »
Hi Billydude

It's good to see you. I've been wondering how you were doing.

Kathyx

inga

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Re: Interested in talking to males with sjogren's syndrome.
« Reply #24 on: January 24, 2010, 04:18:01 AM »
Autonomic Neuropathy is usually small fiber neuropathy.  One can get a skin biopsy to see the degree of loss of nerves.  Of course, ultimately it does all connect to the brain, (CNS).

I have autonomic neuropathy and in the thermoregulatory sweat test, I did not sweat one iota to heat.  I went into the box orange and came out orange.  I flunked the tilt table test too.  If you have not been seen at an autonomic center, I recommend you go.  I had no idea that I did not sense heat.

I am female and have little in common with many posters.  I have severe systemic issues.  Dryness is a side show.  I do also have inflammatory blood markers.  Low C4 is associated with greater morbidity and mortality in Sjogren's, especially vasculitits, peripheral neuropathy.  Ganglioneuronopathy occurs in some people, this is dorsal nerve root deterioration with small fiber neuropathy, and this generally causes more severe symptoms.  I have had a diagnosis for over 10 years, and was sick a good decade before that.

When your autonomic nervous system dumps on you, all kinds of systemic issues will arise.  In addition, I have all the inflammatory pain stuff, joints are hideous.  But joints are not as serious as lung, cardiac, GI etc.

I would be really curious to know what the guys blood work shows, and what kind of tests you guys have had.  My neuro feels that a lot of what is diagnosed as Sjogren's is actually a small fiber neuropathy.  It is the chicken and the egg situation.  I would love to read about your experiences, if I may.

Joe S.

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Re: Interested in talking to males with sjogren's syndrome.
« Reply #25 on: January 24, 2010, 05:20:23 AM »
Sorry it took so long for me to find your post. Just another male with Sjs.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, D3, ALA, ALC, Aleve, cistanche
Reiki, reflexology, meditation, electro-herbalism

Patze

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Re: Interested in talking to males with sjogren's syndrome.
« Reply #26 on: January 24, 2010, 06:23:05 AM »
Hi Billydude,

Haven't seen you in ages, how have you been? 


Patze
Our home page  http://www.sjogrensworld.org/index.html
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Everything has beauty, but not everyone sees it - Confucius

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Billydude

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Re: Interested in talking to males with sjogren's syndrome.
« Reply #27 on: January 24, 2010, 05:05:54 PM »
Hi Kathy and Patze.  Guess I haven't been on much lately.  Think of it as a good sign.  I suppose I haven't needed as much support these days and don't really have as many questions.   I've started to learn to intregrate Sjogrens into my world and I don't need to reach out quite as much.   I'll check in from now and again.
Steve

navydad

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Re: Interested in talking to males with sjogren's syndrome.
« Reply #28 on: January 25, 2010, 09:28:52 AM »
Male with sereoneative SS,, the onset was quick,woke up one dy with dryness andit was downhill from there,, The Small fiber neuropathy was DX;ed last year with a punch biopsy on the right leg,, the neuros have told me that they felt that it was also in the upper arms and hands due to symptoms,,positive its affected my GI track,, constipation,, diarehha,, and  family that dont get it,, saw doctor this morning,, for peeling feel,, just gave me some stuff to put onit,, this was a good dermaolgist who said he had no clue what it was,, a thusand  red dots that faded then peeled,, Inga,, I dontkow how you stay so upbeat, I;m ready to take the bridge on this stuff,, have to see my GP this afternoon,, My worrys are it will continue to deteriote and I;lll end up either dead or in a wheelchair,, I;m just so tired of fighting,, and have no where else to turn,,, every neuro I have seen has said there is nothing we can do,, we have tried pulse steroids,, week of IVIG,, and the latest slap in the face was being told its fibro,, fighting to get Social securiity disibility,, I think right now I am looking for suggestions to try next,,,where to go,, who to call,, who to beg for answers,, tired of getting bloodwork that says nothing is wrong with you,,

inga

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Re: Interested in talking to males with sjogren's syndrome.
« Reply #29 on: January 25, 2010, 10:19:18 AM »
Upbeat???  Me, upbeat???  LOL....I am laughing at my predicament is so darn sad it's funny.  In my former profession, before couch potato became my vocation, we called this dark humor.  When something is so darn sad, there is no option but to make fun of it. 

Red spots....tell me of these red spots.  Who, what , when , where, etc.

Also, plain old small fiber neuropathy causes dry eyes and dry mouth, and painful joints and it is misery, without a Sjogren's diagnosis.  Have you googled or binged, ganlioneuronopathy??  I post this stuff on the outside chance people will pursue them.  LOL, guess not.  Once one has small fiber neuropathy there is usually a massive search depending on your doctor, to find out what is causing this blasted condition.  During the search for my SFN my ANA went thru the roof...up til then it was  autoimmune, then idiopathic, then hereditary....then finally autoimmune again.

I see many posters have flares.  A flare implies that you are functional at some point.  I have no concept what a flare is....I am drop dead sick every day....getting my sorry behind out of bed and working on some minor thing like dishes, and letting my dogs out to do their duty is like a doing the ironman.  From the day I got this disease, I have slowly progressed downhill.  I am scared to drive my car, because I have a stick and am worried I wont feel the pedals....hmmm.  What a thrill. 

My hands don't work real well....and well, I put a lot of my garbage I have in my signature.  They are not diagnoses, they are part of this inflammatory neuropathy thing, which could be vasculitic, or ganglionopathy.
 
 Either way, it isn't pretty.

 For many years before my ANA thankfully went sky high, as a representation of what my inards were up to for all those years,  I felt lousy....now they know I feel lousy.  I dobut you have fibro any more than I have fibro.

I happen to be eating myself a live like some contorted Venus flytrap....nice analogy.  At the root of all this, is the damge done to my neurological system, which accounts for  a lot of pain, and dysfunction.

I'm a girl, I don't know if the boys will let me join the club, despite the fact that I own a Paslode Cordless nail gun and I used to own and operate  bicycle store in my spare time.