Author Topic: Men with Sjogren's  (Read 4784 times)

jcbritguy

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Men with Sjogren's
« on: March 08, 2011, 07:15:43 PM »
I am curious to know if there are any men out there besides myself who have Sjogren's Syndrome?  If so, has their time with Sjogren's disabled them as I have become?

Joe S.

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Re: Men with Sjogren's
« Reply #1 on: March 08, 2011, 08:05:58 PM »
Welcome to the forum. Yes, there are men with this disease. Yes, we do get disabled. Yes, we can learn to cope. What you can not fix, manage.
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, Goldenseal, D3, ALA, ALC, Aleve
Reiki, reflexology, meditation, electro-herbalism

Billydude

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Re: Men with Sjogren's
« Reply #2 on: March 09, 2011, 12:42:36 AM »
Another guy here  to chime in .   We do have our ups and downs.  There have been times when I've felt incredibly disabled and other times nearly normal.   I also am on permament disablity and also have celiac disease like you.
« Last Edit: March 09, 2011, 12:44:18 AM by Billydude »

cremer

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Re: Men with Sjogren's
« Reply #3 on: March 09, 2011, 04:02:14 AM »
Another male here with this nasty syndrome. I have up's and downs, but mainly due to Plaquinel I feel pretty good now.

I've also had a lot of heart issues leading to a triple heart bypass about a month ago.
Male 47 yrs old
PSjS (Positive SSa & SSb ANA 1:2560, Possible Fibromyalgia and CFS, Triple heart bypass Feb 2011, IBS, brain fog, joint pain, mouth and nose ulcers, paronychia, headaches, and fatigue, Very low WBC count.
Medications : Aspirin, Plaquenil, Bisoprolol, Simvastatin, Vit D, Iron.

selavy59

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Re: Men with Sjogren's
« Reply #4 on: March 14, 2011, 05:12:23 PM »
It certainly has disabled me. My parotids become infected every 4 to 6 weeks leaving me in so much pain. I tire very quickley, I have not had a nights sleep for 3 years because of dry mouth. I have muscle pain and joint pain.

I have recently been awarded disability. At least I have no more money worries!

c991

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Re: Men with Sjogren's
« Reply #5 on: March 20, 2011, 01:16:47 AM »
Yeah, I'm officially disabled by sjogrens and several related illnesses. On the bright side I've learned how to manage my life to the extent I'm mostly happy or at least have an absence of misery. Good thing is my dw has figured out that it's better just to let me decide what activities I do and when. Well, sort of. She demanded I rest a week after my open long biopsy two weeks ago and I'm glad I did.

Dry1000

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Re: Men with Sjogren's
« Reply #6 on: March 20, 2011, 10:26:00 PM »
Hey

        I was feeling pretty bad and seriously thinking about disability until the plaquinel; after 5 months of plaquinel I got my life back again. Don't get me wrong sometimes I do feel like crap, but I can honestly say the sjogrens doesn't stop me from living my life anymore. I am able to work full time and I have been feeling so much better due to the plaquinel I'm thinking about getting a second job.

cremer

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Re: Men with Sjogren's
« Reply #7 on: March 21, 2011, 04:16:44 AM »
Hey

        I was feeling pretty bad and seriously thinking about disability until the plaquinel; after 5 months of plaquinel I got my life back again. Don't get me wrong sometimes I do feel like crap, but I can honestly say the sjogrens doesn't stop me from living my life anymore. I am able to work full time and I have been feeling so much better due to the plaquinel I'm thinking about getting a second job.

Couldn't agree more, I've been on Plaquinel for about 9 months now and almost all my joint pain has dissappeared.
Male 47 yrs old
PSjS (Positive SSa & SSb ANA 1:2560, Possible Fibromyalgia and CFS, Triple heart bypass Feb 2011, IBS, brain fog, joint pain, mouth and nose ulcers, paronychia, headaches, and fatigue, Very low WBC count.
Medications : Aspirin, Plaquenil, Bisoprolol, Simvastatin, Vit D, Iron.

jcbritguy

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Re: Men with Sjogren's
« Reply #8 on: March 21, 2011, 05:06:47 AM »
You chaps who took Plaquenil and were relieved of some of your symptoms are quite lucky.  After 4.5 weeks of taking Plaquenil I had so many side effects that I had to come off Plaquenil.  Due to all other drugs treating SJS & Fibro being NSAID based (which I cannot take due to my cardiac issues) I have no other avenues at this time & I find myself quite challenged getting through the day.

Joe S.

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Re: Men with Sjogren's
« Reply #9 on: March 21, 2011, 09:07:48 AM »
jcbritguy, you may find that the toneations can help with most of the diseases on your list.

I understand your frustration with the medical community and I have no suggestions to help you with that. If you figure it out let me know.

I have trouble with side effects from a lot of the typical meds. You may want to research some the the things that I do.
Alpha Lipoic Acid, Acetyl L Carnitine, Inositol, and 6-8 oz Carrot Juice, may help you.

Check out each item in your list of dis-eases at www.chakraforce.com

The tones do not cost anything to you to use and I have had reports of them working wonders in others. listen to each tone for 3-5 minutes (they are 30 sec duration) in sequence. You can do other things while listening to the tones. Not listed is the tones for DNA and RNA. A friend used them for hours on end. His hair color went from white to his original black. It was amazing to watch as it was from the roots out. Hair first then beard.
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, Goldenseal, D3, ALA, ALC, Aleve
Reiki, reflexology, meditation, electro-herbalism

CAT1962

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Re: Men with Sjogren's
« Reply #10 on: March 21, 2011, 12:46:12 PM »
I think the women and men suffer the same. (From what I have read, seen, discussed in forums.) Now, the MEN I have seen with it seem to have more heart-related issues...and don't more men have heart problems compared to women anyway?

Nice to "meet" you, JC....even if it is here. (((JC)))... :-\


CAT
Primary SjS, hair loss, achy joints/muscles, dry skin/eyes/nose/mouth/EHEM, Low Vit D, low potass., high CRP, Asthma (Albuterol), CFS, Fibro, RA, thyroid nodules,PN..MED: singulair, cal-mag-zinc, Ibuprohen, NO steroids, NO Plaquenil.

Carebear

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Re: Men with Sjogren's
« Reply #11 on: March 21, 2011, 08:46:11 PM »
Hi Cat,

Unfortunately, we gals have reached equality with our male counterparts when it comes to heart disease.   Since 1984, more women than men have died each year from heart disease and the gap between men and women's survival continues to widen.  :( :(  
« Last Edit: March 21, 2011, 08:49:41 PM by Carebear »
Sjogren's syndrome, RA,  Raynaud's phenomenon, Celiac Disease, Hashimoto's Thyroiditis, Grave's Disease, Fibromyalgia, Seizures, Cervical Stenosis.

Plaquenil, Synthroid, Restasis, Methotrexate injections, Keppra.

sage

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Re: Men with Sjogren's
« Reply #12 on: March 21, 2011, 09:45:22 PM »
You chaps who took Plaquenil and were relieved of some of your symptoms are quite lucky.  After 4.5 weeks of taking Plaquenil I had so many side effects that I had to come off Plaquenil.  Due to all other drugs treating SJS & Fibro being NSAID based (which I cannot take due to my cardiac issues) I have no other avenues at this time & I find myself quite challenged getting through the day.

Hi jcbritguy: am not a guy but thought I might just pitch in with a possible suggestion.  You have several complicated issues and no doubt the heart issues cause you to have to take more than one  med  besides the sj, celiac etc.

I have heart, sjogren's and other issues.  Some of the initial heart meds created lupus type rashes - what a mess.  But I did have great help from a doctor who devotes his time to assisting patients (at the cardiac clinic) with advice on all the meds they are taking whether heart related or not.  Nutrition was also something advised.  I think if you have sjogren's that we have some special needs in terms of med evaluations in more depth than most.  Do you have access to anything like that where they make careful notes about how each med is affecting you and work up to the exact level desired.  It took several months for me to get straightened away after I had open heart surgery, most especially as it related to diuretics, sjogren's and adverse reactions.  At this point some of the heart meds I am taking seem to help the sjogren's - keep pushing for help to get more relief!   Edith

bob212

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Re: Men with Sjogren's
« Reply #13 on: March 22, 2011, 06:52:11 AM »
I was dx'd in 2008 but looking back probably had symptoms for several years.
So far biggest issue is fatigue and mild dry mouth and eye issues that
just began recently.  Interesting comments about the heart.  My primary suggested
seeing a cardiologist (I do have mitral valve prolapse) because "SJS can affect the heart".
I did and wore the monitors but all's well so far.  Not bad bad idea to get checked out if
you have the insurance to cover it.
sjs; antibody A pos/B neg; plaquenil;  cal/mag with D; omega 3; cod liver oil; CoQ10; acetyl-L carnitene; lipoic acid; yoga, meditation and rest when needed

sage

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Re: Men with Sjogren's
« Reply #14 on: March 22, 2011, 09:51:41 AM »
Heart disease being the number 1 killer of men and women in America today, it is important to get checked out.

The BNP Test - Having said this, there is a test often done re heart - which I had which high results can show signs of congestive heart failure and I would be very interested in hearing from anyone with a diagnosis of sjogren's syndrome as to whether they have ever  this test.  It is an inexpensive easy test to have done from a blood sample but not usually associated with any sjogren's testing.

The reason I ask is that I have had very high test results for BNP but do not show obvious signs of heart failure at this point (fluid congestion etc) and wonder if it might relate to sjogren's syndrome - a test usually only done as it relates to the heart.

bob212/all -  you may have an interest in this study as it relates to the heart and whether the BNP test might have any relationship with the sjogren's syndrome symptoms:

B-Type Natriuretic Peptide in Organic Mitral Regurgitation Delphine Detaint, MD et al Mayo Clinic 2005
http://circ.ahajournals.org/cgi/content/full/111/18/2391

Natriuretic peptides - blood tests for heart disease:

Brain natriuretic peptide, also called B-type natriuretic peptide (BNP), is a protein that your heart and blood vessels produce. BNP helps your body eliminate fluids, relaxes blood vessels and funnels sodium into your urine...

http://www.mayoclinic.com/health/heart-disease/hb00016