Sjogren's Syndrome Support Group
Sjogren's syndrome is an autoimmune disorder in which immune cells attack and destroy the exocrine glands that produce tears and saliva. It also associated with rheumatic disorders such as rheumatoid arthritis, and it is rheumatoid factor positive in 90 percent of cases.
Hi everyone.
I was diagnosed with Systemic Lupus about 6 years ago and Sjogren's about 3-4 years ago. My ANA has been normal for a couple years and my doctor states that the SLE has been inactive but that the Sjogren's is in full force. I was taken off of Plaquenil 4 months ago because I was getting black streaks under my skin on my face, arms and legs. I am on Methotrexate 15mg weekly along with blood pressure meds, folic acid and vitmin D.
My rheumy told me that the chronic joint pain associated with SLE is not permanent and causes no damage but the joint pain caused by SS is damaging and permanent. I just had some labs drawn and xrays of my joints. My CRP is elevated and so is C3 but C4 is normal. ANA is normal. Xrays shows severe damage to both knees, slight inflammation to both ankles and some changes to both hands and elbows. My eyes are so dry that wearing contacts has become almost impossible (unfortunately I don't have glasses so I am forced to wear them and just use drops frequently. My mouth is beyond dry and my teeth falling apart. My joints hurt so bad that daily activities have been affected and I have severe edema all over my body.
Anyways, I am starting to doubt that I have ever had Lupus and that all of my problems have been SS all along.
Has anyone had any of the same results or symptoms? My doc finally gave me a handicap parking permit and told me that based on physical exam alone, I do have severe joint swelling.
Thanks for the help.
I was diagnosed with Systemic Lupus about 6 years ago and Sjogren's about 3-4 years ago. My ANA has been normal for a couple years and my doctor states that the SLE has been inactive but that the Sjogren's is in full force. I was taken off of Plaquenil 4 months ago because I was getting black streaks under my skin on my face, arms and legs. I am on Methotrexate 15mg weekly along with blood pressure meds, folic acid and vitmin D.
My rheumy told me that the chronic joint pain associated with SLE is not permanent and causes no damage but the joint pain caused by SS is damaging and permanent. I just had some labs drawn and xrays of my joints. My CRP is elevated and so is C3 but C4 is normal. ANA is normal. Xrays shows severe damage to both knees, slight inflammation to both ankles and some changes to both hands and elbows. My eyes are so dry that wearing contacts has become almost impossible (unfortunately I don't have glasses so I am forced to wear them and just use drops frequently. My mouth is beyond dry and my teeth falling apart. My joints hurt so bad that daily activities have been affected and I have severe edema all over my body.
Anyways, I am starting to doubt that I have ever had Lupus and that all of my problems have been SS all along.
Has anyone had any of the same results or symptoms? My doc finally gave me a handicap parking permit and told me that based on physical exam alone, I do have severe joint swelling.
Thanks for the help.
SLE and SS are both connective tissue disorders along with , rheumatoid arthritis (RA), systemic sclerosis (SSc), polymyositis (PM), dermatomyositis (DM) mixed connective-tissue disease (MCTD). Many of the symptoms of these disorders overlap and people can have symptoms of more than one of the diseases. Some are more likely to be associated together than others,, like SS and SLE. They also can become dormant and not show any symptoms for a period of time. The treatment is centered around controlling the symptoms so life can be as normal as possible and monitoring for complications. On a day to day level it doesn't really matter which one you have or if you have more than one. Dealing with the symptoms and staying as positive as possible is what becomes important. I hope you feel better!
Just wanted to mention to you that Sjogrens does not cause any damage to the joints even though they can swell and be very painful. I don't think Lupus causes joint damage either. However, RA certainly DOES cause joint damage and so does other types of arthritis. Are you sure you are not dealing with something else regarding the damage to your joints?
sueb88-I was told that it was hard to tell which disease was ruling me at any given time because they overlap eachother. At one point, my ANA was way high and so were my CRP and ESR. I was also told that the symptoms overlap and each of the connective tissue diseases you mentioned have the same symptoms. With the exception of the severe dry eyes and mouth, everything else is very similar between SJS and SLE. As for controlling the symptoms, I have to laugh. Medications have been switched so often I actually have to keep a log of what I am taking when but the pain is getting much worse!!
dawnc4t-The dark streaks I have were there for a long time but was getting worse. The onces on my face were the worst. My rheumy told me that I will never be on Plaquenil again because of that. I do spend a small amount of time in the sun during the summer (I have kids so it is hard not to) but avoid it as much as possible so I doubt that the black streaks are due to the sunlight and med combo.
whiteja-I know that SJS does not cause joint damage in and of itself. However, SJS does cause RA which they have now added to my list of diagnoses and RA does cause joint damage. sueb88 mentioned all of the connective tissue disorders and sometimes I have to wonder if they have one of them right for me. Sometimes I feel like I am just losing my mind and there is actually nothing wrong with me. Sometimes I want to stop taking all these meds and just see what happens. I am sick of taking high doses of methotrexate and puking for two days after. I hate losing my hair. I hate not being able to walk like a normal human being!! I hate having pain constantly that does not seem to be relieved by anything theyhave done for me. Am I to start taking narcotics to the point where I can't function as an employee or mother? Should I become a raging alcoholic or start abusing marijuana because that helps the pain a bit??
I have had it!! I go to bed every night begging to die in my sleep because I don't want to go through this again the next day!! How is it ok to pray for a cure yet beg for death to take the pain away? I really don't think I have any of these conditions but firmly believe that there is something seriously wrong with me!
Have you thought about taking antidepressants? They can be a great help and have a really high success rate for depression. They can really help with brain fog and fatigue as well. It is considered like an organic kind of depression which is caused by chronic illness. It can literally change your brain chemistry and put you in a bad mood all the time, you can't snap out of it like just having the blues. I am only saying this because you sound really down! There is help out there.
In your last post you stated "i really don't think I have any of these conditions but firmly believe that there is something seriously wrong with me". Well you do have something seriously wrong with you, SS, SLE and RA are serious diseases. We, who suffer these diseases, know how they can change your life. I have felt so hopeless with the pain and fatigue that I wished I could just die and rest. That is why I joined this site, to hear from other people who have been through the same feelings I have experienced and have some how managed to keep living. And I don't mean just staying alive, I mean finding a way to get dressed every day, clean my house, do the work I need to do, buy food and clothing, exercise, keep my friends, enjoy my children and love my husband. To be happy again. Things that were easy before sjogrens. But sometimes we need more than just this site, we need more personal attention. Maybe you need to talk to a psychologist or join a local support group where you actually meet the people. I agree with Allisonc79, you sound really down and there is help out there...
Allison~I was told a year ago that I have severely low vitamin D. I read that you have had negative ANA's but low vitamin D. Is that one of the side effects of sjogren's??? We are not the first two I have read that have issues with this. I take 50,000 units of vitamin D per week.
It's not that I doubt there is not something seriously wrong with me, because I know there is. I just doubt that my problem is Lupus. I think the problem is that I have had several doctors tell me that I do not have Lupus or Sjogren's followed by several that said I do. I am so confused. I do have a butterfly rash on my face that never goes away. I am sun sensitive. I did have a positive ANA at one point but it has been negative for a while now. My rheumy told me he did not need to do any invasive testing to diagnose SJS because based on my clinical symtoms, I do have both SLE and SJS. The problem is that I had another rheumy who told me that all my symptoms can be explained away. He said that my edema is caused my being overweight. My headaches by stress. My dry eyes by wearing my contacts too long. My tooth problems due to poor oral hygeine and my joint pain is a figment of my imagination because I was given a diagnosis. Keep in mind that he refused to test me for anything and said that previous positive blood work proved nothing.
On top of all of the pain I have to deal with I also have a husband who is less than supportive and feels that I am faking it for attention or to get out of my fair share of the housework. I can't leave him because we have three young children that I can't raise on my own right now and because as my disease progresses and the pain gets worse I fear that if I don't stay and take the words he says to me, no one will be here to help me. I am totally screwed!!