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I just found the Sjogren's forum...

Posted , 2 users are following.

deidra40034
deidra40034

Hello,  I just happened upon the Sjogren’s forum, and boy am I glad, well, sad at the same time that others suffer with this too!  I am on a few of the other forums here, but had no idea there was one for Sjogren's.

I am a 61 year old woman, and I have had Sjogren’s for several years now, been on Prednisone for my RA, and was on Plaquinil (sp) but I was one of the oh so lucky one’s that had to be taken off of it, due to it damaged my eyes in the first 3 months.  Mine started with the the dry eyes and dry mouth, so was put on Methotrexate.  First 7 pills a day, then had to be upped to 8, was causing damage to my stomach, so had to go to shots daily.  Then that caused my hair to start falling out, skin lesions, and overall just feeling very sick.  Had to stop that, plus after being on it for over a year while it did help a little with the dry mouth, it did not slow the progression of my RA, we stopped it.  It has caused many other problems, like my liver, and blood pressure, and stomach.  That stuff is very toxic.  I have been off of it now for 6 months, and my hair is growing back, and we are working on the rest.  My RA doctor wants to try me on Imuran, waiting on the ok from my Urologist, and my Gastro doctors first.  But, need to do something, as my hands and wrists are so very painful, as well as the rest of my body. 

I use artificial tears daily to help with my eyes, and I chew sugar free gum all day long, and drink water all day long.  I go to the dentist twice a year, and my husband and dentist call me their mad flosser, as this is the only thing that will save our teeth...along with brushing at the very least, twice a day, and I do more.  I may get old, but I refuse to be an old toothless lady!  LOL  I am doing everything I can, or at least I think I am, but sometime I hurt so bad, and I am so sick of all of these meds.  I also have been having problems with my adrenals and kidneys due to this...after a while, it starts to attack our organs, and that is scary!  How on earth did we get this strange thing??  I’m sorry this is so long, but I guess I am just so shocked that I have found a place where others have the same thing...I just started jabbering on.  I would love to hear about what others are doing do help themselves with this thing, and maybe if anyone has suggestions or advice...it sure would be appreciated!  If you actually read down this far...you must be an angel!!  smile

 

0 likes, 3 replies

3 Replies

  • kristyk
    kristyk deidra40034

    Posted

    Hi, Your story is so close to mine. I'm 64 yrs old and I've had SS for a long time now. I dont have RA but have Raynauds, Lupus, Fibro, Graves Disease, Hypertension, etc.I am now in a flare of Lichen Planus. It hasn't bothered me for almost 15 yrs. I too have beginning stages of kidney problems. I lost my teeth to S S. I have an upper denture and mini implants supported denture on bottom. It recently broke and so expensive can't afford to replace so I have what looks like 4 nails sticking out of where teeth should be. I ended up having to call 911 because I am unable to chew I choked on food and lodged in my throat. Paramedics took me to ER where they called in a gastro doc and anesthesiologist to put me out while they did an endoscopy. Thought I was going to die. Hard to get nurishment I need. That's my story. Depressing but I keep hanging in there. That's what we must do. I've been on meds u take. I suffer with pain sobi take pain med and muscle relaxer. I take Ambien for sleep because of the insomnia. My rheumy deals with problems as they come up. I take my omega 3 my bit D and fish oils. I drink lots of water. The sjogrens foundation says they hope to have a drug by next year to help with SS. They are doing studies right now. Promising for those of us who suffer from this disease. There are many supportive people on this forum as you will see. Good luck to you and God bless.

    Kristy k

    • deidra40034
      deidra40034 kristyk

      Posted

      Hi KristyK,  I am so sorry you have this!  I too have the Raynauds, and Fibro.  My  Mom has Lupus, and my Rheumy deals with my problems as they come up too.  He also told me if we have either Lupus, or Sjogren's, we will most likely have the other sooner later.  And I see you do.  My was just told today, she now has Sjogren's.  Yes, it sure is depressing, but, we have keep hanging in there.  I've just gone through my second endoopy in a month.  The darn meds really mess up our tummys, and this last one they took a biopsy, and I am waiting on those results now.  I too take my vit D and fish oil, B6 and B12 to keep my immune system up.  I can't take pain meds, as they make me so sick, and I am allergic to so many.  I am hoping I will be able to take the Imuran, as I hear it is not too bad, and helps.

      I am so glad hear about a new drug!!!  That would be wonderful!!

      Thank you for your response and kind words!  I wish you Good Luck too!!  And God Bless!!

      Deidra

    • kristyk
      kristyk deidra40034

      Posted

      They say that once we get one of these little autoimmune diseases they invite one of their little friends over to visit and they stay. True what your doctor says. Its definitely genetic as I see with your family. God bless you and yous. Kristy k

      Just sending a little ha ha joke. Laughter is the best medicine.

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