Hi all, I'm new here and to this diagnosis . My symptoms are joint pain, edema, dry eyes and occasional dry mouth, intolerant to temperature changes which used to mean I was overall the time and now I'm hot. I have really dry skin on top of eczema and my memory is shot. I've lost hair and have a lot of fatigue. I have some insulin resistance and high dheas. I have also gained 20 lbs while dieting and I can't lose it no matter what I do. I'm starting pt to hopefully help work the pain and stiffness and depending on what my endo testing says ( looking for neuroendocrine tumors) and my rheumy testing says (repeating ANA and testing c3 and c4 and to check for lupus as my original ANA showed the pattern for Lupus) my rheumy will start me on plaquenil. What testing did you experience in the beginning and what type of treatments? They are watching my thyroid though testing comes back normal. Any advice for a newbie is much appreciated!
Stucem,
Hello, and welcome to SSS. I'm new too I was just diagnosed with Sjogren's in Jan.
I take Salagen aka pilocarpine for dry mouth. It works pretty well for me. I take it 3 times a day. I still have some dryness, especially late at night and early in the morning. But it definitely helps. I've also heard cevimeline (Evoxac) is common for dry mouth as well.
I use Thera Tears (OTC) four times a day for my dry eyes.
I don't know if you have Sleep Apnea, but I have a CPAP machine with a humidifier for mine. Don't use a full face mask because it will seriously dry out your mouth and throat. BUT I've found that the nose mask works well for my mouth. I can't sleep without it. Before I got the machine I had to go to bed with a cough drop every night!! (The Drs DO NOT APPROVE, its too dangerous) But if I don't do one or the other my uvula will swell up, which is painful and sometimes it blocks my airway.
I have Hasimoto's (autoimmune thyroid). I gained about 65 lbs in 3 or 4 years. I started meds for it and in about 6 months I've lost 15 lbs!! I hope they figure out why your gaining the weight. I understand how frustrating that is. I had to kept asking Dr's about my weight for years before they found my issue.
As far as tests, my Rheumy did several blood test for my rheumatoid factor, ANA, inflammation, and some others that I can't remember. My test were very inconclusive. I think he use my medical condition to base the diagnosis on. I saw him for about a year before he would give me the diagnosis and I was sick with infection after infection for most of that time.
Joshedu
Hi Joshedu,
Thanks for the info. No CPAP for me but I remember the same drying out when I have had to have oxygen while in labor. It was awful. I also get it times to time and it feels like all of the sudden all of the water in my body has flooded out.
I have only had one positive ANA and the other stuff seems to have come back fine. The opthamologist saying that I had an autoimmune disease causing severe dry eye is why I think he settled on Sjogrens. Sad when you wish for positives but I do!
Thanks for the encouragement about the weight thing. It's the worst part, I think. I'm hoping they keep pursuing the thyroid stuff and may other potential reasons.
Good luck on your journey figuring this out!
Stacey
joshedu said:
Stucem,
Hello, and welcome to SSS. I'm new too I was just diagnosed with Sjogren's in Jan.
I take Salagen aka pilocarpine for dry mouth. It works pretty well for me. I take it 3 times a day. I still have some dryness, especially late at night and early in the morning. But it definitely helps. I've also heard cevimeline (Evoxac) is common for dry mouth as well.
I use Thera Tears (OTC) four times a day for my dry eyes.
I don't know if you have Sleep Apnea, but I have a CPAP machine with a humidifier for mine. Don't use a full face mask because it will seriously dry out your mouth and throat. BUT I've found that the nose mask works well for my mouth. I can't sleep without it. Before I got the machine I had to go to bed with a cough drop every night!! (The Drs DO NOT APPROVE, its too dangerous) But if I don't do one or the other my uvula will swell up, which is painful and sometimes it blocks my airway.
I have Hasimoto's (autoimmune thyroid). I gained about 65 lbs in 3 or 4 years. I started meds for it and in about 6 months I've lost 15 lbs!! I hope they figure out why your gaining the weight. I understand how frustrating that is. I had to kept asking Dr's about my weight for years before they found my issue.
As far as tests, my Rheumy did several blood test for my rheumatoid factor, ANA, inflammation, and some others that I can't remember. My test were very inconclusive. I think he use my medical condition to base the diagnosis on. I saw him for about a year before he would give me the diagnosis and I was sick with infection after infection for most of that time.
Joshedu
Stacy,
I'm glad I was able to share some info. I can relate to wanting to get a positive/diagnoses. I've had several docs and other people dismiss me or think I'm incredibly lazy. I am kinda lazy, but that doesn't mean I don't have medical issues that can make me tired and achey. So, the positive tests kinda validates what we're going through.
Hang in there and keep doing your own research. These days I think the research we do is very important, especially when dealing with unusual conditions. The drs just don't know as much about them as we need them to.
Josh