Sjogren's Syndrome

Question:

Please describe your experience with sjogren syndrome. Submit Your Comment

Comment from: Ann, 45-54 Female (Patient) Published: August 17

My blood work is pointing to Sjogren's syndrome. I have noticed many of you are having other symptoms and have probably learned many symptoms lead to other diseases. I have also learned that many autoimmune diseases are mimicked by Lyme disease. I have discovered this is very controversial in the medical community and am seeking many medical doctors’ diagnoses, as well as seeing a Lyme literate doctor.

Comment from: Kathy L., 55-64 Female (Patient) Published: August 11

I was diagnosed with Sjogren’s syndrome about 2 years ago. I’m still trying to get used to it. I had a pancreas transplant about 6 years ago and am wondering if that trigged my Sjogren’s. I was diabetic up until my transplant. I feel nauseous, tired, I lost a lot of weight, can’t sleep, and some days my whole body aches. I’m 60 years old. I don’t know if these are all symptoms and if they come and go.

Comment from: Doodeedoo28, 25-34 Female (Patient) Published: July 09

I am a 32 year old woman and was diagnosed with Sjogren’s syndrome about 4-5 years ago. Originally, my first complaint was dry eyes and I saw an ophthalmologist who diagnosed me with… yep, 'dry eyes.' I exhibited psoriasis of the nails and connective tissue problems and joint pain began when I was 19. At age 23 I picked up a 'bug' and never recovered. I have noticed the connection between my narcolepsy/cataplexy diagnosis and Sjogren’s; hypothalamus. I used to sing but can't now, due to how quickly my throat tires.

Comment from: elaine, 75 or over Female (Patient) Published: April 21

I was diagnosed with Sjogren syndrome 5 years ago. I had cough and constant low belly pains. Gastrointestinal (GI) work came up negative. All the tests were negative. I have belly pain all the time. I am at my wits’ end. Wonder if anyone else has had these symptoms. My legs are fatigued when belly aches the most!

Comment from: Kim, 45-54 Female (Patient) Published: April 16

I am 44 years old. I have been sick for 4 years. I was first diagnosed with fibromyalgia by the neurologist after ruling out multiple sclerosis (MS). I was diagnosed with Sjogren’s syndrome about a month ago after seeing 2 rheumatologists. My first rheumatologist thought I was a hypochondriac. He did not believe me and sent me on my way. My second rheumatologist is great. He did countless blood tests, imaging, and full physical. I tested positive for Sjogren’s and mixed connective tissue disease.

Comment from: Judy , 55-64 Female (Patient) Published: October 05

Just recently my physician’s assistant (PA) recommended a blood test to rule out Sjogren's syndrome. Test came back negative. I saw a rheumatologist and he was so dismissive and cold. I tried to explain what was happening to me. He told me he doesn't want to waste Medicaid money for unnecessary tests/treatments. I am feeling overwhelmed, depressed and anxious. Any feedback would be appreciated. My family has wondered if I'm a hypochondriac.

Comment from: Silas, 35-44 Female (Patient) Published: April 12

I was diagnosed with Sjogren’s syndrome 2 years ago. I have also Hashimoto’s thyroiditis and am lactose and gluten intolerant; could also be fructose. Before, I knew I had extreme IBS (irritable bowel syndrome), bloating, etc. Now the diets allow me to have an almost normal gastrointestinal (GI) tract. I take Plaquenil and it helps with the extreme fatigue and pains in the bones. But it is still there and worse when I am stressed. I am dry everywhere, and nothing really helps. And I have debilitating headaches that make me very bad company.

Comment from: KayCee, 45-54 Female (Patient) Published: April 09

I was diagnosed with Sjogren’s syndrome (SS) 5 days ago. Rheumatoid arthritis (RA) and systemic erythematous lupus (SLE) were ruled out. However, the rheumatologist said only about 1/3 diagnosed have to concern themselves with complications that warrant immunosuppressive therapy or progression to lupus. I have pain in my joints; hands, knees, and ankles mainly. She prescribed diclofenac tablets, but also gel, to try either first. My eyes do tear, but I was always told that could be due to dry eyes. I could not tolerate contacts. I do get dry mouth. Lab tests show high alkaline phosphatase and high monocytes and anti-SS-A antibodies.

Comment from: Jules, 65-74 Female (Patient) Published: September 01

I am a 66-year-old female. I’ve had a chronic cough for 20 years, it started around 40 and I’ve been through everything known to every doctor to try to figure out why I have this cough. About 10 years ago my toes started to feel like they were going numb. I have no pain, it just feels like there’s a layer on the bottom of my feet. Recently I was just told that I tested positive for Sjogren’s syndrome. My eyes are not dry, my mouth is not dry and I have no other symptoms. Wonder if anybody else has had this experience.

SLIDESHOW

What Is Rheumatoid Arthritis (RA)? Symptoms, Treatment, Diagnosis See Slideshow
Comment from: Chrissy, 35-44 Female (Patient) Published: August 18

I have had extreme fatigue for years but in March of this year, I noticed swelling on my left parotid gland and ear pain, along with the muscle weakness and stiffness I have had for years. I was finally diagnosed with Sjogren’s syndrome and I am now on hydroxychloroquine. Since then, I now have hearing loss in my left ear and still do not feel any better. It’s very frustrating. I have two small boys to take care of and I have no energy ever. I have also noticed increased anxiety and depression.

Comment from: stef, 35-44 Female (Patient) Published: July 08

My symptoms of Sjogren’s syndrome are dry mouth, dry nose, dry eyes, dry skin, dry vagina, dry lips, and stiff tender muscles. I have used prescribed eye drops, over-the-counter eye drops and gel, with very limited relief. I sip water all day, I have to wear glasses now, and have constant eye infections. I follow vigorous dental hygiene, and chew sugar free gum, but still get gingivitis. I’m scared I will lose my sight and my teeth. I have to moisturize my face once, then again because it's still too dry. I put Olbas oil up my nose every morning, so I can breathe.

Comment from: Victoria , 19-24 Female (Patient) Published: July 02

I am 19 years old, I was diagnosed with Sjogren’s syndrome and rheumatoid arthritis, when I was 16. I have extreme joint pain, mostly in my wrists, hands, shoulders, elbows, knees, hips, ankles and feet. I have very bad fatigue, my eyes are very dry, but I use eye drops and gel. I took methotrexate and prednisone at first, now I'm taking leflunomide, but it's not helping at all, and I'm getting worse every day.

Comment from: Vanessa, 55-64 Female (Patient) Published: April 07

I’m in the process of being diagnosed. I seemed to have the flu and never got better. But how Sjogren’s syndrome really manifested itself in me is, I lost all, and I mean all, muscle strength in a matter of two days. On Monday I could do my normal activities. On Wednesday I sat down and couldn’t get up. My legs would not boost me up. I had to literally be picked up out of the chair. And it has only gotten worse. I can’t do a lot of things for myself. I can’t do steps at all. Hoping medicines will help.

Comment from: notscaredtodie, 25-34 Male (Patient) Published: January 02

I am 100 percent sure I have Sjogren’s syndrome, but the crazy part is that my blood work will not reveal it, but my life story will show it. I lost my palatine tonsils at age 18 due to tonsillitis from stones in my tonsils. At age 25 I lost my submandibular salivary gland on my right side due to stones in my salivary gland. Now my lingual tonsils are affected, which are swollen at the base of my tongue. Reading about Sjogren’s, it affects most upper glands in the body. If you start losing organs be sure to talk to your doctor.

Comment from: Bobbi, 65-74 Female (Patient) Published: November 21

I had congestive heart failure 4 years ago. At that time I was diagnosed with non-ischemic cardiomyopathy and Sjogren’s syndrome. I don’t know where one starts and the other one ends and have a lot of unanswered questions. I travel a lot and am very mobile even though my ejection fraction is only in the 20s. I have a CRT-D device and take a lot of heart medicines, including hydroxychloroquine 200 mg twice a day for Sjogren’s. Looking for some answers if my aching legs and fatigue are caused by the heart or the Sjogren’s.

Comment from: Cat, 55-64 Female (Patient) Published: October 08

I'm new to this forum as I am an undiagnosed Sjogren’s syndrome (SS) patient. My rheumatologist and ophthalmologist have been treating me as if I have SS because of the long-term symptoms of fatigue, severe dry eye, mouth and nose, to include a recent corneal ulcer. Wonder if anyone here has extreme fatigue when they get overheated with exercise, like hiking. My eyes water, nose drips and the inside of mouth peels off skin. It's to the point that I cannot do much on a warm day outside.

Comment from: jeanne, 55-64 Female (Patient) Published: August 13

I went to an ENT regarding dry throat and dry eyes. I had symptoms for over a year. My throat woke me up every night because I could not swallow. He tested me for Sjogren’s syndrome but it was negative. Long story short... I'm being treated with cevimeline which is wonderful (for dry mouth)! I also have the eye plugs which work great and have to use eye drops less frequently. I have fatigue, aches and muscle pain of course. But I have lost a lot of body hair! Wonder if anyone else has this.

Comment from: Deedee, 65-74 Female (Patient) Published: August 06

I was diagnosed with Sjogren’s syndrome 8 months after suffering a stroke. I had dry eyes for years but no dry mouth. Never suffered from chronic fatigue either. I believed fatigue was a side effect of the new medicines I was prescribed after my stroke. Trulicity in particular made me so weak and lethargic I couldn’t move. I no longer take that but fatigue persists. I am taking Plaquenil in hopes of relief even though labs didn’t show much inflammation. I can barely function daily! Going to try yoga and Pilates.

QUESTION

The term arthritis refers to stiffness in the joints. See Answer
Comment from: Barb, 65-74 Female (Patient) Published: June 25

I have had Sjogren’s syndrome for 8 years. I am now experiencing nausea daily, and insomnia. I slept a total of 8 hours in the last 6 days. I am at my wits’ end and getting depressed!

Comment from: Meredydd, 35-44 Female (Patient) Published: May 22

I have had very dry nasal passages for 15 years, and then in the spring of 2018 my mouth all of a sudden was parched all the time. An ENT suggested Sjogren’s syndrome but my blood test was negative. A rheumatologist did a lip biopsy and it was positive. I also have debilitating fatigue and muscle aches, and pains like a fibromyalgia. Hydroxychloroquine helped me feel better, but gave me a horrible rash that took 2 months to go away. I then started methotrexate and was on it for 6 weeks with no improvement, so stopped.

Comment from: Still can't believe , 25-34 Female (Patient) Published: October 05

I was diagnosed with Sjogren's syndrome 3 years ago. Some of my symptoms came on quite suddenly and others I had for years, and just shrugged it off. The fatigue was the major alarm bell. I was a 31 year old outgoing female at the time and never had any major health problem and never got sick. All of that changed in what seemed like the blink of an eye. I just got sick one day and never got well. It started with sinuses, bronchitis and the never ending thirst. Over the next 2 months I had every symptom.

Comment from: debra, 55-64 Female (Patient) Published: May 25

I was diagnosed five years ago with Sjogren’s syndrome and have lost most of my sight. I have primary Sjogren’s, which went undiagnosed for years till my eyes and corneas melted. I take 8 mg of methotrexate once a week and use Tears eye drops. But I also take omega three oil, juice, lots of greens, and walk 112 stairs a day. I am telling you diet and exercise help. Seriously, do not let them tell you different. I have one of the best rheumatologist, he is wonderful and is looking after me. I get blood check every month and I just notice this year that I am achy but I think it is overdoing the stairs. Diet and exercise help. I wonder how many of you had thyroid disease before being diagnosed, I think there is a link.

Comment from: linda, 45-54 Female (Caregiver) Published: January 14

I was diagnosed with Sjogren syndrome 14 years ago which related to lupus and rheumatoid arthritis. I have been to 7 different doctors and almost every one of them has said my dry mouth is a result of medications I take. As you know, this dry mouth is much more than being thirsty or dehydrated.

Comment from: felix, 55-64 Male (Patient) Published: April 04

My wife was diagnosed with Sjogren’s syndrome last year. For all the horrible symptoms, joint pain, swelling and stiffness, swollen salivary glands, skin rashes and dry skin she was given hydroxychloroquine but wasn't helping the situation. It becomes worse each day.

Comment from: san, 45-54 Female (Patient) Published: October 07

I was diagnosed about 8 years ago. The Evoxac I take is a life saver, it allows me to at least function, but heaven help me if I miss a dose. I also take large doses of iron for the fatigue. Funny how one missed dose and it takes 3 days to catch up on my energy. I just dealt with the symptoms for these years not realizing some of the symptoms I thought were just age(I'm just 54) are actually Sjogrens symptoms. I hate whiners so most of the time I keep things to myself. It's reassuring reading others comments knowing I'm not the only one suffering. My joints in my hands hurt all the time. I spend most of my days on the computer at work so you just endure. My hip joints have really been bad this summer, thought it might be bursitis, but I'm sure it’s the Sjogrens. I could be much worse. I am able to get out of bed every morning and thank God for it. I just take one day at a time, and am determined this WILL NOT get the best of me.

Comment from: Ann, 35-44 Female (Patient) Published: September 20

I hate it. I was diagnosed over three years ago. I hurt a lot. My knees mostly. My eyes burn most of the time. I choke on food a lot. I take so many meds I feel like a pharmacy. I take shots also. I take B12 which really does help a lot with memory. I take methotrexate shots in the muscle of my legs once a week. I take hydrocordoquine twice a day. I hate multi vitamins. I take pills for my eyes, folic acid, and numerous other meds. I get sick all the time because my immune system cannot fight off anything. I have lots of stomach problems with bowel blockages, acid reflux, and pain. I take lidoderm patches for pain and sometimes I give myself allergy pills to knock myself out for pain. I feel useless and I hate not being able to take care of myself sometimes. I see no end in sight and what I wanted to do and be is a memory. I am 41 years old and ready to throw in the towel.

Comment from: 55-64 Female (Patient) Published: August 27

I can't believe I have it. I'm so fatigued I have trouble concentrating. I get very dizzy. I am so over heated at 70F that the sweat runs from me. I never used to sweat. I have trouble sleeping because I ache all over and because I'm so hot. The bed feels like it is on fire where I have been laying. My jaw hurts on the left side. It is hard to bring my back teeth together. One leg aches continually. I ache from head to toe. My mouth isn't really dry and my eyes aren't dry. It seems my throat is however. I get so desperate for a drink of water sometimes, I'm almost frantic. I get a prickly feeling in my chest and have to guzzle water or some juice. Please tell me if the doctor is on the right track.

Published: August 27

I was diagnosed three years ago with Sjogren's syndrome by a rheumatologist. I have never been a person who took medication until now. My doctor put me on Plaquenil to maintain inflammation, Evoxac three times a day for dry mouth, and Restasis eye drops twice a day. The Restasis takes at least 6 weeks until you still start feeling the relief from dry eyes. I also had tear duct plugs put in. I must say, my eyes are no longer red with pain, and my mouth has some relief. For once, I feel like a new person.

Comment from: Apumpkinseed, 45-54 Female (Patient) Published: May 29

I was just diagnosed with Sjogrens. I have been sick for three years with no insurance to see a doctor. I wake up out of a sound sleep about four to five times to drink water. My joints ache all over and my eyes are so dry I can feel my eyelids scraping across my eyes. I do have other symptoms which cause me to believe I also have lupus. I did read that most people with Sjogrens usually have another autoimmune disease. Also, I am losing a lot of weight.

Comment from: Nikita, 45-54 Female (Patient) Published: June 10

Have Sjogren's with symptoms of dry mouth, dry eyes (use artificial tears) TMJ, and constant sinus pressure/pain and sinus infections almost every three months for last 15 years (had sinus surgery last year, and use Zetonna nasal aerosol and saline spray). Occasionally have acid reflux, fatigue, thick mucus in throat and deep barking cough. Sometimes get "brain fog" especially when stressed and don't sleep well due to sinus pain. Geez, now that I've written out my symptoms, no wonder I feel sick of being sick! Sure hope a cure for Sjogren's will be found!!

Comment from: nicsgram, 65-74 Female (Patient) Published: November 29

My eyes are very dry but frequent use of over-the-counter drops are helpful after trying numerous brands. I ache and I have Raynaud's but the worse symptom for me is the sore throat and tongue. Salt rinses and lozenges only work for a few minutes. I'm losing my sense of taste and the enjoyment of eating. Because there doesn't appear to be any infection, the doctor doesn't treat it. I'm very frustrated.

Comment from: Lily, 65-74 Female (Patient) Published: June 08

Diagnosed with SLE Sjogren's overlap 15 years ago confirmed by lip biopsy. Best treatment for me is rituximab. I use Biotene products and they are quite effective in keeping the dental problems at bay. My symptoms are very dry scratchy eyes...no tears. My mouth and throat get so dry that I choke on food. I take water with me everywhere.

Comment from: Cathy, 45-54 Female (Patient) Published: February 15

I have Sjogren's. I am 51. I have had it for eight years. My hands hurt about 80% of the time, and my ankles, knees, and hips hurt all the time. I do a lot of work with chainsaws. While I’m doing it, my hands don’t hurt. I’ve never had glasses until I turned 45. I can’t climb stairs. I am a farmer—a life-long female farmer. I’ve never needed help from anyone. Now I feel like I’m lucky to get to the doctor to get supplies.

Comment from: Spoony, 45-54 Female (Patient) Published: November 21

I was diagnosed with Fibro in 1998 and Sjogrens in 2003. Previously misdiagnosed with Lupus (SLE) and took numerous meds for it. I found an excellent doc, but there are always unanswered questions or you can't fully comprehend what you're being told about test results. After 8 years of Plaquenil (only took 1 pill, not the 2 recommended) after noticing changes in my vision and was diagnosed with macular problems, was ordered off the Plaquenil and placed on Imuron (Azathioprine - 50 mg). Noticed immediate negative reaction (stiff shoulders, pains in neck, knee pain, just overall felt crappy) in addition to Prednisone (which makes me feel totally disconnect from myself - described as Depersonalization). Dr. told me to have bloodwork once a month and call pharmacy for questions with interactions. Pharmacist said weekly bloodwork required for the first month, then biweekly for months 2-3. Doc didn't concur(too much of a hassle to do it more often). Going to see him again for alternatives imunosuppressives w/o such drastic side-effects, at recommendation of sister who is a nurse. IBS a problem, bloating is so bad I get full from a couple sips of water. You just learn to deal with it - make it to work everyday, a little tired though and always feel that I'm not going to wake up the next morning because the pain and fatigue are constant. Hard to explain to someone how you feel and can be depressing.

Comment from: mgreenwood, 45-54 Female (Patient) Published: October 18

I was diagnosed over 15 years ago. I have dry eyes. Drops don’t help much anymore. My mouth stays dry and I'm never without water or liquid. My lower back is in constant pain since I fell and have muscle spasms. My neck has degenerative disk and hurts. I have worked all my life and it is so difficult on me to do my job and take care of my family. I am in pain and have difficulty getting up and down steps. My neck and eyes are a major factor in my pain. Sometimes I can't see to read or drive.

Comment from: Janet, 55-64 Female (Patient) Published: October 06

I started taking Restasis in July. But, if I drive more than 3 miles, I have severe eye pain. The pain is only relieved by sleeping. If I do something away from home for a day, it takes 2 days for the redness and pain to go away. I have to sleep 12hours during that time and then have an hour nap. The same thing happens if I have company over and do not sleep.

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