Can u have lupus and sjogrens? Does anyone have both here? Just curious. I saw my results before I see my doc tested positive for ss-a have to wait till Monday to call my rheumy as he left me a message for me to call the office regarding my results. Now I am worried I don’t want to add another diagnosis to many I already have just frustrating so much going on.
Hi Misbea,
Welcome to the discussion boards! I'm glad you posted!
Yes, there are members here with Sjogren's and Lupus, or Sjogren's and Raynaud's or Sjogren's and RA or Sjogren's and Psoriatic Arthritis... the list goes on!
Lupus is one of the diseases most often linked to Sjogren's it seems, or at least there is more internet information about it.
Here is a link that may be helpful
http://www.lupusinternational.com/About-Lupus-1-1/Lupus-and-Sjogrens-Syndrome-.aspx
I know that you want a complete diagnosis yesterday, but Lupus is difficult to diagnose. It is known as 'the great imitator' as it resembles so many other illnesses, so the Doctors take extra care to make sure that it is indeed Lupus before treatment is recommended.
https://www.rheumatology.org/practice/clinical/patients/diseases_and_conditions/lupus.asp
Just keep in mind that I'm not a Doctor, so I am relying on info that I find on the internet! I'm hopeful that you will get a good response to this!
Wishing you well,
SK
Hello. From my understanding, yes. some of us (but not all) can have a combination (MCTD) of connective tissue diseases. Oh joy!!! I wish you wellness! But the more we know the better we can arm ourselves contra these unbareable diseases. Again I wish you less pain & better health & a hug.
Misbea, as the others have said, they are very closely related. It can be hard to tease out what symptom is being caused by what disease. Hang in there…it can be hard to wait to hear what direction you should go in for treatment. Sending hugs.
To my understanding you can have Sjogrens and not have Lupus. But if you have Lupus you will have Sjorgrens.
I had lupus (bad) for many years, then it went into remission for many years, then I got SS. Recently, my GP took some bloodwork and it indicated the lupus might be back and she sent the bloodwork results to my rheumatologist. So, I might have both at the moment. I see him later this month to get the final word.
I’m having trouble believing the lupus is back, as at the moment my symptoms seem more SS related.
I also have a Trigeminal Neuralgia and this pain can be so intense, it’s hard for me to think of anything else.
I do feel a bit frustrated and don’t like that when I hit fifty five, autoimmune issues seem to increase for me.
I’m not sure, I’m not positive, but perhaps nine months prior to things going haywire (I was about 54.5) I had some insane dental work done, my father died, had the job from hell and other personal problems. In other words…lots and lots of stress.
These days, I avoid stress and when I can’t avoid it…I do my best to handle it as best as possible.
I suppose the two illnesses do kinda go together sometimes, but I hope that is not your case. Wishing you well. Hang in there. 
Hi Nomad,
So sorry to hear this! I hope it's NOT back, but if it is, it's always best to know about it.
My heart goes out to all who suffer TN, my sister in law suffers terribly with this, and it happened after a root canal. My mother and maternal grandmother and I all tend to get any kind of neuralgia in any part of the body, sometimes the head, from the slightest draft, dampness, or air conditioning, and I know that it's mild compared to TN, but it's still horrible!
I'm certainly not a Doctor, but I think stress is the biggest cause of illness, injury, and malaise in all living things.
I wish you well, my friend,
SK
Ty, just to clarify, it is also possible to have Lupus and not have SS. The kicker is that they are so closely related it can be hard to diagnose which is which. I actually know a number of people that are many years into Lupus diagnosis and no sign at all of SS (thankfully)
I have the trifecta: lupus, Sjogren's, autoimmune hepatitis. Sjogren's gives me the most grief.
You got to hold on.
Hello, Missbea 711, All you can do is stay positive . Don't accept it, just fight it. Once you give in, it will overtake you. I lhave Scleroderma, Sjogren's, CREST, and Ostopenia. They are all part of the auto immune family. I think the more we know is our way to fight back. Learnig what foods are bad, etc, are a key tool. I have found out that sugar is our worst enemy, along with white flour like breads, cereals etc. I have changed to only bakery bread, because it doesn't have all the additives, but it doesn't last as long, which is fine with me, organic foods as much as I can, and I stay away from soy, and nightshade veggies, like eggplant, etc. They tend to add discomfort to my body. I cheat as I love eggplant, but I don't overdo. They don't want me eating tomatoes too, as thats a nightshade, but I love my tomatoes, so that one I am not good at. But overall, I try to do what is good for me, and thats all you can do too. Don't get stressed because stress is what brings on all of these wonderful auto immune diseases. No one in my family has what I have, but I had a half sister who did have Lupus, and she passed at age 63 from complications of Lupus, and Diabetes. She is the only known connection. Some say Scleroderma is heredity, but I pray not as I would not like to see my children battle the battle I have for 10 years. So chin up, stay strong, and keep on fighting.
Yes, you can have both. I have Lupus, SS, Raynauds, RA, and more. Hang in there
Nomad said:
I had lupus (bad) for many years, then it went into remission for many years, then I got SS. Recently, my GP took some bloodwork and it indicated the lupus might be back and she sent the bloodwork results to my rheumatologist. So, I might have both at the moment. I see him later this month to get the final word.
I'm having trouble believing the lupus is back, as at the moment my symptoms seem more SS related.
I also have a Trigeminal Neuralgia and this pain can be so intense, it's hard for me to think of anything else.
I do feel a bit frustrated and don't like that when I hit fifty five, autoimmune issues seem to increase for me.
I'm not sure, I'm not positive, but perhaps nine months prior to things going haywire (I was about 54.5) I had some insane dental work done, my father died, had the job from hell and other personal problems. In other words...lots and lots of stress.
These days, I avoid stress and when I can't avoid it...I do my best to handle it as best as possible.
I suppose the two illnesses do kinda go together sometimes, but I hope that is not your case. Wishing you well. Hang in there. :)
Hi Nomad, I didn't know there was such a thing as "remission" for lupus, SSJ. I am very interested in knowing more.
I started Cellcept in May to get my lupus under control in order to slow the progression of my kidney disease. That's what I was told. In one breathe, my new rheumy from the Lupus and Autoimmune Center in Pitt, said there is no "1 medication" for the SSJ then in another breathe said some meds for the lupus also help with the SSJ. Right now the SSJ is very active but it's difficult to pinpoint which symptom is from which disease since they overlap.
I would love some down time with these illnesses. I've suffered since my early 20's with one illness after another. I'm 53 now and was very, very ill for the past 4 years w/no diagnosis until last year. I wouldn't wish SSJ or lupus on my worst enemy and the killer is family and friends just don't understand. Managing all the symptoms is high maintenance. I just want to sort of pick your brain so to speak and appreciate any comments.
Nomad said:
I had lupus (bad) for many years, then it went into remission for many years, then I got SS. Recently, my GP took some bloodwork and it indicated the lupus might be back and she sent the bloodwork results to my rheumatologist. So, I might have both at the moment. I see him later this month to get the final word.
I'm having trouble believing the lupus is back, as at the moment my symptoms seem more SS related.
I also have a Trigeminal Neuralgia and this pain can be so intense, it's hard for me to think of anything else.
I do feel a bit frustrated and don't like that when I hit fifty five, autoimmune issues seem to increase for me.
I'm not sure, I'm not positive, but perhaps nine months prior to things going haywire (I was about 54.5) I had some insane dental work done, my father died, had the job from hell and other personal problems. In other words...lots and lots of stress.
These days, I avoid stress and when I can't avoid it...I do my best to handle it as best as possible.
I suppose the two illnesses do kinda go together sometimes, but I hope that is not your case. Wishing you well. Hang in there. :)
Maria,
My rheumatologist told me that Lupus can go into remission. He told me that from the beginning. I was sick for a long time...maybe 15 years. The first 5 years were extraordinarily difficult. I was on high dosages of prednisone for perhaps seven years. Also took plaquenil at times. Then, out of no where, things go better. Once in a while, I would "joke," that my "lupus" was acting up. What I meant was that I seemed eerily tired. However, I didn't go to the doctor...so I'm not sure what that fatigue was all about. I did get very bad migraines and was more concerned about those. It wasn't long after that, I had some minor issues with dry eye and dry mouth. Still didn't go to the doctor. In fact, I somehow avoided my rheumatologist for many years.
Flash forward....a year or so ago I was having some dental work and things went nuts. Long, horrible story. I was also under a lot of stress. During all of this, out of no where, that dry mouth and dry eye got worse. I went to the rheumatologist and he took blood. The dentist kept on insisting that my Lupus had returned. The test results showed that my Lupus was still in remission!!!! However, they also showed that I now had SS! Then, the rheumatologist dropped a bomb on me. He told me that SS NEVER goes into remission.
AND, although this rheumatologist was very caring and helpful when it came to my Lupus dx years ago, he is NOT very interested in SS and says it is "more of a Pain in the axx than anything." :(
When it comes to autoimmune stuff, he is probably considered the top doctor in my city. So, bottom line, he called it correctly when he said that Lupus can go into remission. And he believes SS never goes into remission. I pray he is wrong or that scientists figure out a way to knock it DOWN.
Blessings.
Maria….I've had 3 different docs say the same thing….there is no direct medication for SS. They use drugs that are known to help similar AI with some success but they don't have anything developed specifically for us. I think it is just not well understood so they are feeling their way through. Isn't it fun being a Guinea pig? LOL
Nomad, I wonder too about the concept of remission. This thing def seems to be more active some times then others. But, it never seems to go totally away either. Maybe that's what they mean?The condition is ever present? I am working through lung issues now too and they have told me that the damage may stay exactly the same for a long time, then suddenly start progressing again. Sounds like a remission to me, but who know. I'd love to know their definition. I pray they are wrong too.
Hi Nomad, what meds were you taking for the lupus?? Are you taking any for the SSJ or just treating symptoms separately? My lupus and all the NSAIDS I took for years and years damaged my kidney so I'm in between stage 3-4. In other words functioning with less than half of my kidney function. Doc @ CC and local doc put me on Cellcept to suppress AI thus slow progression of kidney disease. Funny thing is that my WBC have been creeping up (from 3 to 7) when I believe it should stay the same or go down. My GFR (if you're not familiar is kidney function #'s) is rising also. I was told that and have also read that kidney disease cannot be reversed past stage 2; only reduce the inflammation and slow progression. So I questioned my new doc. When he explained it, I didn't totally understand and questioned it. He just assured me that everything was OK so to speak. Something's not right and I don't know what to do. He said not to be concerned with the flagged items on my tests but I'm so skeptical. Most of my experiences w/docs hasn't been good bc most of them don't know what the heck is going on....
What are your thoughts about it? Thx.
Nomad said:
Maria,
My rheumatologist told me that Lupus can go into remission. He told me that from the beginning. I was sick for a long time...maybe 15 years. The first 5 years were extraordinarily difficult. I was on high dosages of prednisone for perhaps seven years. Also took plaquenil at times. Then, out of no where, things go better. Once in a while, I would "joke," that my "lupus" was acting up. What I meant was that I seemed eerily tired. However, I didn't go to the doctor...so I'm not sure what that fatigue was all about. I did get very bad migraines and was more concerned about those. It wasn't long after that, I had some minor issues with dry eye and dry mouth. Still didn't go to the doctor. In fact, I somehow avoided my rheumatologist for many years.
Flash forward....a year or so ago I was having some dental work and things went nuts. Long, horrible story. I was also under a lot of stress. During all of this, out of no where, that dry mouth and dry eye got worse. I went to the rheumatologist and he took blood. The dentist kept on insisting that my Lupus had returned. The test results showed that my Lupus was still in remission!!!! However, they also showed that I now had SS! Then, the rheumatologist dropped a bomb on me. He told me that SS NEVER goes into remission.
AND, although this rheumatologist was very caring and helpful when it came to my Lupus dx years ago, he is NOT very interested in SS and says it is "more of a Pain in the axx than anything." :(
When it comes to autoimmune stuff, he is probably considered the top doctor in my city. So, bottom line, he called it correctly when he said that Lupus can go into remission. And he believes SS never goes into remission. I pray he is wrong or that scientists figure out a way to knock it DOWN.
Blessings.
Nomad, my local doc wasn't up on SSJ either that's why I had my first appointment at the Lupus and Autoimmune Center of Excellence in Pitts. I don't know if I trust this doc yet and want to make sure that they're doing everything possible to improve my quality of life and slow the diseases. I don't want to die young..... :(
how long have you had SSJ? How are you being treated? What are all your symptoms?
maria said:1
Hi Nomad, what meds were you taking for the lupus?? Are you taking any for the SSJ or just treating symptoms separately? My lupus and all the NSAIDS I took for years and years damaged my kidney so I'm in between stage 3-4. In other words functioning with less than half of my kidney function. Doc @ CC and local doc put me on Cellcept to suppress AI thus slow progression of kidney disease. Funny thing is that my WBC have been creeping up (from 3 to 7) when I believe it should stay the same or go down. My GFR (if you're not familiar is kidney function #'s) is rising also. I was told that and have also read that kidney disease cannot be reversed past stage 2; only reduce the inflammation and slow progression. So I questioned my new doc. When he explained it, I didn't totally understand and questioned it. He just assured me that everything was OK so to speak. Something's not right and I don't know what to do. He said not to be concerned with the flagged items on my tests but I'm so skeptical. Most of my experiences w/docs hasn't been good bc most of them don't know what the heck is going on....
What are your thoughts about it? Thx.
Nomad said:
Maria,
My rheumatologist told me that Lupus can go into remission. He told me that from the beginning. I was sick for a long time...maybe 15 years. The first 5 years were extraordinarily difficult. I was on high dosages of prednisone for perhaps seven years. Also took plaquenil at times. Then, out of no where, things go better. Once in a while, I would "joke," that my "lupus" was acting up. What I meant was that I seemed eerily tired. However, I didn't go to the doctor...so I'm not sure what that fatigue was all about. I did get very bad migraines and was more concerned about those. It wasn't long after that, I had some minor issues with dry eye and dry mouth. Still didn't go to the doctor. In fact, I somehow avoided my rheumatologist for many years.
Flash forward....a year or so ago I was having some dental work and things went nuts. Long, horrible story. I was also under a lot of stress. During all of this, out of no where, that dry mouth and dry eye got worse. I went to the rheumatologist and he took blood. The dentist kept on insisting that my Lupus had returned. The test results showed that my Lupus was still in remission!!!! However, they also showed that I now had SS! Then, the rheumatologist dropped a bomb on me. He told me that SS NEVER goes into remission.
AND, although this rheumatologist was very caring and helpful when it came to my Lupus dx years ago, he is NOT very interested in SS and says it is "more of a Pain in the axx than anything." :(
When it comes to autoimmune stuff, he is probably considered the top doctor in my city. So, bottom line, he called it correctly when he said that Lupus can go into remission. And he believes SS never goes into remission. I pray he is wrong or that scientists figure out a way to knock it DOWN.
Blessings.
sometimes I am get so frustrated have to constantly keep up with it all.....so high maintenance. I get angry, anxious and depressed and just say screw it....but then I read about others worse off than me and I thank god!!!
I just want my life back...wawawa.....EnjoyLife said:
Maria….I've had 3 different docs say the same thing….there is no direct medication for SS. They use drugs that are known to help similar AI with some success but they don't have anything developed specifically for us. I think it is just not well understood so they are feeling their way through. Isn't it fun being a Guinea pig? LOL
Nomad, I wonder too about the concept of remission. This thing def seems to be more active some times then others. But, it never seems to go totally away either. Maybe that's what they mean?The condition is ever present? I am working through lung issues now too and they have told me that the damage may stay exactly the same for a long time, then suddenly start progressing again. Sounds like a remission to me, but who know. I'd love to know their definition. I pray they are wrong too.
THANK YOU BOTH FOR YOUR COMMENTS....GOD BLESS
maria said:
sometimes I am get so frustrated have to constantly keep up with it all.....so high maintenance. I get angry, anxious and depressed and just say screw it....but then I read about others worse off than me and I thank god!!!
I just want my life back...wawawa.....EnjoyLife said:Maria….I've had 3 different docs say the same thing….there is no direct medication for SS. They use drugs that are known to help similar AI with some success but they don't have anything developed specifically for us. I think it is just not well understood so they are feeling their way through. Isn't it fun being a Guinea pig? LOL
Nomad, I wonder too about the concept of remission. This thing def seems to be more active some times then others. But, it never seems to go totally away either. Maybe that's what they mean?The condition is ever present? I am working through lung issues now too and they have told me that the damage may stay exactly the same for a long time, then suddenly start progressing again. Sounds like a remission to me, but who know. I'd love to know their definition. I pray they are wrong too.
I’m not really taking any meds for the SS, just take meds as things come up. I did take Robaxin now and then and still have it available. I also have muscle relaxers like Soma to take, don’t take it a lot, but happened to have taken one last night.