View Full Version : Diagnosed already with Sjogren's
08-01-2008, 04:29 AM
Hi everyone, I am 54 old female. I live in Ontario Canada. I already belong to Sjogren's World, and now that I am very close to being diagnosed with Lupus, I thought I would get to know more about Lupus.
RA, and Lupus runs in my family. I believe I have been dealing with lupus symptoms now for over 20 some years. My dermitologist misdiagnosed me with what he thought was Porpheria (or at least the start of), back 20 years ago. The sun causes the rashes on my face and arm, which causes my severe sleep apnea, to go into over drive. I have so many allergies. My health is a mess. I have lots of depression also.
After finding out they did the same thing to my sister. My sister was later diagnosed with RA and Lupus. I now find I am following in her foot steps.
I am going in for a Celiac biopsy September 4, 2008. They say it is not uncommon for Celiacs to have Sjogren's, Lupus (soon to be diagnosed), liver problems, as I have.
Please ask questions, I very much need to understand what I am going through.
Oh yeh, I can never have medication because of allergies, and liver disease (NASH - non alcohol fatty liver disease with inflamation).
08-01-2008, 06:07 AM
Welcome to the site. I am sorry that you are going through so much. I have Lupus and Sjogrens, Celiac Spru and Pernicious Anemia (Megaloblastic) I guess is the other name for Pernicious Anemia. I am sorry to hear that you have liver disease with it all. I don't have that problem that I know of. I am taking Plaquenil, Sulindac and Imuran and have to have B12 shots every month. I hope that you can get some answers. There are a lot of nice people that comes here and that are very knowledgeable. Please keep posting.
08-01-2008, 06:15 AM
Hi Kathy, thank you for the warm welcome.
I have to deal with all this without the use of medication. I am hoping to find somethin that won't affect my liver, or I am not allergic to. So far doctors just look at me and throw the hands up in the air.
I don't know what B vitamin niacin is but MAN, can it do a number on my liver.
Just added niacin and Vitamin D to my allergy list. Hoping after I get diagnosed with Celiac (Sorry change that). Right after my biopsy, I am back on the Gluten free diet it suppose to help slow down Lupus and right now I am in a race car to quick end.
08-01-2008, 06:56 AM
I feel so bad for you and will keep you in my prayers. I hope with all my heart that they can help you. What caused the liver damage? I will keep you in my prayers and I send you a big cyber hug.
08-01-2008, 07:01 AM
My GASTRO, is thinking Celiac, and/or my severe allergies to sulfa, sulfites, sulfates, sulfur and all derivatives, Sjogren's and Lupus???.
Too much going on to be sure one way or another.
Can't even have a good drink??? Never drink alcohol anyway, but I must tell you there is times I wish I could. :)
08-01-2008, 07:06 AM
I am in the same boat as you. I can not in anyways drink and sometimes I wish I could, but boy one drink and I get deathly deathly sick like immediately. There are times like you said that I wish I could have a drink. Oh well.
08-01-2008, 07:17 AM
I am looking at your medical history, boy we look like a carbon copy (nearly).
My family doctor said I didn't have Celiac. After my GASTRO seen how I improved off of gluten, she said she believe that in fact that she believes I do have celiac. At any rate I am back on gluten, and will be off it again as soon as biopsy is over. My family doctor originally took me off gluten, for an indefinite period of time, never to go back on it. He thought it would slow down the Lupus Sypmtoms, and Rheumatory Arthritis.
08-01-2008, 07:37 AM
I think that we do have a lot of the same problems other then the liver problems. I don't seem to have liver problems yet, but who knows what the future holds. I have to watch out for a lot of the medications too, due to allergies, mostly to sulfa drugs. Isn't it strange that we could have a lot of the same problems. I have a twin sister that has Celiacs Spru, but not the Lupus and other things like me. I jsut got the diagnosis for the Pernicious Anemia about 4 monhs ago, when boy oh boy my tongue got horribly sore and the sores showed up in the corners of my mouth and wold not heal. I also had shortness of breath and fatigue like you would not believe. I had the tingling in the hands and feet and felt weak beyond words. I am now on B12 shots and that helps a lot. It is strange though that our histories are a lot alike. Hmmm makes you wonder doesn't it.
08-01-2008, 07:48 AM
I have canker sores off and on, I find they are more so when I have too much sulfites, sulfates, sulfur, or it could be just plain lupus. I also get sores at corner of my mouth, they are slow to heal, like my bruises, and bruise like marks, that come out of no where.
I am border line Anemic. I can never give blood again, because my iron does not rebuild itself.
My hands and feet are so week, I can't bruise a fly, if I was to hit one :). I drop things so often.
I am so tired all the time, it's hard to get anything done.
I think I am going like this site. I feel at home already, because all my symptoms are familiar :).
08-01-2008, 07:55 AM
I think that you need to have them test you for Pernicious Anemia and Vitaming B12 deficiency. It sure sounds like you are B12 deficient from the sores in the corners of your mouth and the slowness of them healing. Don't let it get to the point that you have probems breathing ok. Have them to test you for Pernicious anemia.
08-01-2008, 08:37 AM
hi Gerri and welcome -
Sorry to hear of your problems...Many, many people with lupus are unable to take meds with sulfa in it - it can caues major flareups...
If you feel better on the gluten-free diet, then I would do it, but, I have never heard that it can help with your lupus. Certainly, a healthier diet - less salt (fluid retention), sugar natural inflammatory), and fats (lupus patients increased risk of artheriosclerosis (sp?)) are much better for us. But, gluten does not have a direct correlation to lupus. Celiacs disease is an autoimmune disease like lupus is, but antibodies attack completely different organ systems in each disease.
I also have really bad allergies (at the prick test, I tested allergic to EVERY SINGLE ONE!!) and I am on a daily timereleased dose of Allegra, which works wonders.
So, what is their plan on treating your lupus? If you have kidney involvement, you will HAVE to be treated. Untreated kidney disease in lupus can lead to organ failure...There has to be something that can help you...I know there are some lupus meds that are not as harsh on the liver...maybe your doc could look into those for you?
You shouldnt have to suffer through your symptoms...I hope you get some answers soon, and are feeling better. let us know how you make out!!
08-01-2008, 09:01 AM
It's not uncommon to have more than one autoimmune disease, which I am finding out.
I did find the three weeks I was on a celiac diet, my blood pressure, cholesterol, and liver enzymes became controlled, which was good.
I have found after starting gluten back up everything is out of control and my lupus symptoms are so much worse. I don't know why this is so.
Right now I am on no medication for Lupus. I go for a celiac biopsy September 4th, and guess we go from there. I see my family doctor August 8th, and get him to order more kidney bladder test. I am going back to see if the hospital will put me on Macrobid (had to look up medication I taken for bladder infection) the doctor would not give me anything. Macrobid was the one medication so far I haven't had any problems with (tough wood).
PS: I got my longsleeve shirt on, hat, and sun screen going out - see if I get my rashes.
08-01-2008, 09:29 AM
Good girl being all covered up!! I am aware that having one autoimmune can make you more prone to others...yet, these ususally consist of: Sjorgrens, Raynauds and Fibromyalgia. It is not common at all to have both RA and lupus, or scleroderma and lupus...symptoms are similar, but have distince characteristics about each that can completely rule out the other. As Daniel Wallace (the demi-god of lupus) writes in "The Lupus Book":
"RA can be difficult to tell from lupus;but within several months, the Dx usually becomes obvious. The hallmark in RA is an automimmune reaction in the syovium...It is uncommonly complicated by systemic organ involvement (like lupus) and causes deforming joint disease. Lupus induces joint deformities less than 10 percent of the time adn erosions are almost never seen. An occasional patient has distinct features that fulfill the ACR criteria for both RA and lupus. Called rhupus, this rare disorder is managed with drugs used for both diseases..."
The symptoms for all these diseases overlap so much, that often patients are Dxd first with lupus, then its changed to RA, or full scleroderma. As we all know the Dx process for ALL of these diseases is so archaic, and leaves many not only with the wrong Dx, but some with NO Dx, which is far worse. because the treatments for many are the same, alot of docs dont do the nitty gritty work to find out what the ACTUAL disease is, as the process with the cells is so similar, and treatment is the same.
You will meet many here who have overlapping diseases, particularly FMS and Sjorgrens (of which I have both - boo!)...I am hoping that they can find a medicine that will work for you...thats horrible that you cant take anything!!! Im praying they find something for you soon...
PS - Enjoy our convered walk!!
08-01-2008, 09:32 AM
OOopps! I forgot to stop the underline when Mr. Wallace stopped speaking! The last two paragraphs are me...
08-01-2008, 05:46 PM
Hello again my friend.
As we meet yet again. :wink: :wink: :wink:
08-07-2008, 12:27 PM
Welcome, welcome...meeting some of I see. Finding more about Lupus? Lots of experience here.
If you need anything...ask...cruise the forums. Much answers there. We all have a story. Loads of medical reference material also...
Again welcome..see you about..