Interested in talking to males with sjogren's syndrome.

[rdel123]

Hi,

I am a male who has been diagnosed with sjogren's two years ago.  I am taking prednisone and plaquenil.  My doctor was talking about methotrexate instead of the plaquenil.  Has anybody else tried this?

Ray

[rdel123]

Anybody take methotrexate for this condition?

Ray

[Joe S.]

Ray, I react poorly to most meds. Methotrexate is no different. It made my poop white and sent me to the ER several times before they took me off of it.

I know that you are in a lot of pain currently, I have no quick fixes.

I take a number of supplements that took time to start working. Each, and more were tried in succession until I came up with what works for me. Now I am finding that peppermint tea helps with the trigemenal neuralgia. Currently it is 5 cups per day.

A number of the items that I take are for Diabetes.

Meditation, reflexology, and Reiki are for pain and healing. Inositol to take the weather out of the pain cycle. D3 for immune system support. Carrot Juice for endorphin creation.

[navydad]

Took me from Dec of 06 till May of 08 to get a (dx)? of SS, in between I had every test,, MRI;s, CT;s Blood work, just about everything until it was mentioned to me after another stay in the hospital that everything is normal, that I mnight benefit from a stay on the 2nd floor,, (psych),
  After another year of looking we finnaly got out of teh valley and got a Dx from a Rheummy in Pittsburgh,, although sereo negative,, and after a lip biopsy that only showed fibrosis, I was told,, Look I say you have it (SS),, and thats that,, then the neuro issues started,, annother search for answers, I begged for help,, and finnaly after so many EMG;s that cmae back normal, a GOOD neuro  did the biopsy,, yep,, Small fiber neuropathy,, after many drugs,, IVIG,,, anything to try and stop the progress,, nothing has worked, not a thing,, andnow its inmy arms, hands,, upper torso in addition to my stomach,, and legs,, I guesss you can say its body wide,,
 The gastro called today,, said my Sed rate is sky high,, but the good news is that I dont have celiac,,, I guess not having that is good,, but its not helping me to feel things any better,, or walk any better,, I saw my GP today,, after talking to him about how bad things are getting,, he told me and I am not kidding,, to take up paint by numbers,, and to start lifting weights,, I am not kidding about this,,, and he did seem s abit concerned that I have lost another 5 lb since my last visit 4 weeks ago,, so now I weigh a soaking wet 138lb,,, this from 165 two years ago,,, and he threw out lymphoma,, but decided that paint by numbers was prob better then a  workup for Lymphoma,, even after I told him that i was having night sweats,, running off and on fevers,, Upper respitory infections that I cant shake,, and a CT scan that showed imflammed lymph nodes in the chest,
  Anyone here want to write a book about all this,, ?    I asked him about teh Vagus nerve,, he seemed to think it only affected the breathing muscles,, not from what I read,, its almost to late to switch doctors,, I;m not about to go back down the road for more of the same testing,,

[selavy59]

I'm male 50 years old but look more like 49.

Diagnosed 18 months ago but have had symptoms (I hate that word) for 19 years. I am now a train wreck.

Usual probs

Fatigue
Cognitive impairment
Swollen parotids (when inflammation runs riot my face looks like a footbal - or should I say soccerball?)
Deafness
Tinnitus
Itchy skin
Impaired vision
Dry mouth
Dry eyes
Depression
Painful hips
Back problem
Lung involvement (CT scan soon)
GERD
Problems swallowing
Sore tongue
Sleep deprivation - cos of dry mouth

Did I miss anything?

[Bernice]

"I'm male 50 years old but look more like 49."

Selavy, how vain of you! LOL!

WELCOME!

[Billydude]

Selavy...you gave me a much needed laugh.    I'm 52 and look 59

[Joe S.]

I am 57, look 45, feel 85. I went from feeling like a teen to 80 in just one year.

[mac]

Thanks for the laugh guys...it's nice to know all the vanity isn't just with women!

I'm 64 and depending on the days 'mentally feel like 25', body feels like 100, and we won't go into looks...beauty is in the eye of the beholder!

I'm guessing this Sjs is harder on all of you than the female gender as I have always been under the impression we are used to more pain in our life...motherhood, et al.   Know it really isn't the truth.

[Justdave]

You know it reminds me of being a diabetic..


Some people need to watch what they eat, but need no meds

Some people need to take a pill, watch what they eat, minor discomfort

Some people need injections, watch sugar daily, Possible serious side effects

Some people no matter what they do, thier feet fall off.


Yet they are all diabetics...

If you asked the first person or his family how serious the disease is, they would say, Nah, not that big of a deal, it's a pain watching what I eat, but hey, life is life.


If you asked the last person, they would have a tale of woe to curl your toes and thank the stars you are not them. They would say it's the most horrible thing a person can go thorugh.


If you asked the first person on the top who had light SJS, ahhh... no problem... I put in eye drops, chew  some gum, all set.

Meanwhile us on the bottom are saying.. don't we wish.  Now where did I put my feet, oh there they are, I couldn't feel them....

[Rostradamus]

Male with severe Sjogren's. Started with miss treated by ER (Shingles opthalmicus) Christmas 2005. Has been agressively tearing me apart. All the terribles you hear about and speen,lung, complete intestinal tact, eyes, neurological involvement causing pemenant damage. All medications have failed. Some with life threatening effects.     Still no explaination of inumerable spinal lessions so bad it hospitalized me 15 days while doctors fought with insurance company for surrgery to cement cracks and fill the big holes.  Insurance would not authourise it. Sent home as out patient two years ago and told to not lift over 25 lbs no karate or gymnastic streching or tension exersises like I was doing in hospital. Don't even think of mowing a lawn, your back could break.  Later told to just sit in a chair while we figue this out, 20 months ago.  Told I also have RA which qualifies me for Rituxan. last Christmas and it was ordered.  Another fight with insurance because it's very expensive. Only now is that treatment near and even the nurses at rituxan consider me higher risk due to about6 different reasons.  We have so little funds left even with assistance program we are not sure we can afford treatment.   We are sure we must go bankrupt and may not be able to afford an attotney. We WILL loose our home without a miracle. AND we have tried so hard for any assistence, in every way we can think of, even me working at anything out of house.    OH, I keep testing positive for Lupus but not High; just get the cheek rash blistered forehead scalp sores and 5 other symptoms from
 UV exposure to even go to Dr.  It will put me down and 'flare' me for days, every time.  Also very specific Lupus symptoms. Yet not diagnosed, which limits insurance covered treatment and helpful programs.  So what to do when living in recliner ar bed 3/4 of life, even repeated pnemonia.   Also changed my primary pain med for my colapsing spine from oxycontin to oxycodone imediate release. Save over $500. But isn't as effective and I'm a pain yo-yo.  Any advice or ideas?  Wife is falling apart and I can save her from it.    Broke and falling through the cracks.