I have scanned the forum and haven't quite found what my symptoms are like. I would appreciate any feedback on what I've experienced.
In February of 2009 I stumbled and broke the ball in my hip, subsequently spending 10 days in the hospital. After surgery and while I was still in the hospital, I noticed I had no appetite whatsoever. Nothing was "tasty" except something sweet. As a result, I have lost 37 pounds since February. Although my weight has stabilized now, I still have no appetite for anything but sweets. I almost have to force myself to eat "good food".
About a month after leaving the hospital I started to break out in a rash - one similar to a sun allergy - legs, arms, hands that itched like crazy. No pain involved unless you consider itching a pain. Nothing on the body or feet and only a few spots on my face. After going to three dermatologists, an allergist, and an immunologist, a biopsy of one spot was done and the diagnosis was a drug allergy. I was on cortisone steroid topically but it did nothing. I was taken off all meds for a month and the rash did not improve. It finally started to dry up on its own and has for the most part all gone away.
Then I developed a very dry mouth. Typical Sjogren's. At a routine eye appointment, my ophthalmologist said my eyes sure were dry. Typical Sjogren's. He prescribed Systane Ultra and suggested 2 grams of fish oil per day. A week later I spent the night in the emergency room thinking I was having a heart attack (my husband though so first) with acute pain in my neck and jaw. It was my salivary glands causing it as it turned out. Went back to my internist. They did an ANA titer and came up with Sjogren's.
I drink a ton of water each day. Have given up caffeine, occasionally have a diet root beer for a change. I have no energy, fatigue is a constant companion, cannot make myself exercise. I use all the Biotene products from toothpaste to mouthwash, to mouth spray to gum.
Anybody out there had any of the rash symptoms? Is there anything else I can do? My internist recommends that I go to a rheumatologist and I will after the first of the year but I have no RA, joint pain, or even leftover pain for the ball implant. I am still working with no problems unless I strain my neck or back. I take an Aleve and the pain is gone.
Any feedback would be much appreciated. Thanks!
The following 2 users give hugs of support to: Atocha bunnyjump (05-09-2011), cbg10 (06-25-2011)
There are lots of reasons an ANA will come back positive, you cannot be diagnosed solely on this. Was you checked for the antibodies SSA & SSB (Ro & La) if you are positive for these then you are more likely to have Sjogrens.
But saying that you do have alot of symptoms of Sjogrens such as dry eyes, dry mouth and fatigue.
You need to have more blood work done to confirm it.
The Following User Says Thank You to Cremer For This Useful Post: Atocha (02-26-2011)
Just to add to what Cremer said, it can also take years to receive a diagnosis of any type of autoimmune disease. My rhematologist has not officially diagnosed me with Sjogrens yet because she thinks there may be another underlying autoimmune disease. This would distinguish whether or not the Sjogrens is primary or secondary. However, she still treats my symptoms with methotrexate because the joint pain was so debilitating.
Hopefully, with more bloodwork and with a little more time, your doctor can confirm a diagnosis. Best wishes to you!
Angie
The Following User Says Thank You to Angie10 For This Useful Post: Atocha (02-26-2011)
Thank you both for your input. I'm going to the rheumatologist right after the first of the year. Will post here what I find out. Happy Holidays to all!
The problem with AI conditions (for the doctors) is how much they overlap and how little they have definitive boundaries--thyroid problems show in blood and respond to treatments with changes in blood; heart conditions show on graphs and scans; repairs are visible. These are highly determined by eliminating other diseases (like ALS) and waiting for it to get full blown out of control.
While you wait, all while hoping it never gets worse(!), you DO have Sjogren's symptoms, and there is also the vague "mixed connective tissue disease" that many get labeled with when symptoms cross over. I have sero-negative RA--imagine the rheumatoid factor being negative while your joints were--by all x-rays and more--showing extreme arthritis, "the most impressive (doc had) ever seen."
It is frustrating but there are a lot of us frustrated together!! One bit of advice--find a doctor who is aggressive enough to keep testing and keep trying treatments. Skin problems are very common with SS and often periodic; plaquenil helps many (chloroquine and atabrine too, less harsh on the stomach but less potent/broad in impact). For dry mouth, Evoxac is fantastic (many take it with Tylenol to control the associated low-grade fever and sweating!). Some benefit from pilocarpine, too, about half as many as Evoxac (Evoxac is the only one specifically FOR SS). For eyes, a few options: restasis actually helps you restore tear production. TheraTears are what top eye surgeons recommend, and *TheraTears NUTRITION* help eyes and throat and skin and the whole body--it is the only true pharmaceutical grade (developed by and for opthamologists/eye surgeons) fish oil supplement and their standards mean it isn't rancid or at risk of toxins... Taking ONE a day--or even every other day since you sound like me, light and trouble keeping weight on--is more than adequate; 3 gives too much vitamin E and this the blood a bit too much.
Has a endocrinologist seen you? You definitely need to check not only basic thyroid but estrogen:testosterone/aldosterone balance and consider requesting an ACTH test with stimulation test if it is low; the appetite and sweets and weight could be an adrenal suppression. Important to know either way.
Incidentally, REMEMBER TO GET ENOUGH SALT. You need more than our hype has made us think--unless you eat fast food all day of course. To keep the hydration capabilities and properly transport oxygen through the blood, we need salt. It has been demonized. Does your blood sugar jump around? What about blood pressure? When you stand up, do you get a rush of lightheadedness? (orthostatic hypotension)? I mention them as things to be aware of--things they want to know but don't always ask. Keeping diaries of health, how you feel and what you eat and do each day, are the single best thing to do.
Best wishes for good health--adapting being better sometimes than being "well" physically but a mess inside(!), and keep us informed! Hopefully the holiday season can bring some rest.
Last edited by Administrator; 02-18-2011 at 10:15 AM.
The Following User Says Thank You to Elbie For This Useful Post: Atocha (12-26-2010)
PS Autoimmune disorders OFTEN get triggered by illness, surgery/trauma, or bad reactions to drugs... One that has taken thousands of young women, for instance, and given them AI conditions (the consistency is too clinically significant to ignore!) is depo-provera, the "shot" for birth control... I literally know over 100 people whose problems initiated when they started that particularly strong and intensely altering drug--something we simply shouldn't put long term in large doses and of course it took poor fates for OBGYNs at all to realize the problem and most still do not...
And nutrition... Check vitamin D levels and calcium; take folic acid but AVOID multivitamins and especially vitamin C pills&powders. To make it short, only get C from whole foods (wanna see what juice does? Check my old prof's seminar Sugar: The Bitter Truth) and vitamin C in isolated ascorbic/citric acids=asking for a heart attack and muscle loss! It leeches iron from muscle tissue and let's it glow as a free radical through your bloodstream. Seriously dangerous and 20-something having heart problems has woken some(still not enough!) to its concerns. In all you eat, try the whole food source--avoid juices and extracts and any/everything soy and corn, canola and cottonseed oils also problematic (those for GI reasons, soy for neurological and endocrine atop GI, corn for insulin/glucose/pancreas issues, too much to suddenly teach but with soy, look up truth about monsanto and also Sally Fallon's toxic soy works... Guess what I do and for who! I get alerts to everything SS related as it is published so I follow it closely and try to give as much practical info as I can in a short while as it is still not flooding the web)...
The Following User Says Thank You to Elbie For This Useful Post: Atocha (12-26-2010)
My mother had Sjogren's Syndrome. The rash was definitely associated with it. We discovered that the rash came from two causes, the Sjogren's was attacking her liver, and the doctor was trying to lower her dosage of prednisone. I hope your doctor ran a lot more tests since your post.
My mother, at times, had baseball sized lumps on both sides of her face, depending on if she was in a flare or not of Sjogrens. She had to take a sip of water with every bite of food and had prescription eye drops. The rashes would come and go. Please 'tune in' to your body if you suspect Sjogren's. It does not just affect saliva, tear and andrenal glands. It can also affect your other organs. Researchers are still studying if there is any sort of a genetic link or predisposition to Sjogrens, so also be sure you are aware of family history involving auto-immune type diseases. I truly hope this helps.
Last edited by zoinco; 02-20-2011 at 11:26 AM.
The Following User Says Thank You to zoinco For This Useful Post: Atocha (02-26-2011)
Thank you all for your responses. They have helped a lot. I have an appointment at the Sjogren's Center of Florida in April for a complete eval. I am still losing weight. Now down to 122 - 43 pounds since surgery. Has anybody else with Sjogren's had dramatic weight loss? That would be interesting to know. Still no signs of RA. Holding in there until I can get to Florida. Thank you all again for your replies.
Cremer, I just got in the lab reports, etc. to take to Florida. My SSA and SSB are both >8 although I have no other signs of SS other than dry throat (have plenty of saliva) and occasional dry eyes. I'm kinda concerned about the >8 on the SSA and SSB tests. What does the average SS patient register..... if you know? Thanks!
Other than that, I'm in good health. Have fatigue, no energy, stick with soft foods as I have trouble swallowing, and have lost 44 pounds, but no RA or any of the other symptoms of SS. Thanks again!
Last edited by Atocha; 02-26-2011 at 08:55 AM.
Reason: Adding info
There are lots of reasons an ANA will come back positive, you cannot be diagnosed solely on this. Was you checked for the antibodies SSA & SSB (Ro & La) if you are positive for these then you are more likely to have Sjogrens.
But saying that you do have alot of symptoms of Sjogrens such as dry eyes, dry mouth and fatigue.
You need to have more blood work done to confirm it.
I get an a rash with every change of season. It starts out as bumps, and occationally it will go to like small blisters. They inch like hell, just can't stop, most of the time I don't even realize I am itching them. They eventually dry up and then the skin peals and things go back to my nornal. I also get a rash on my face, it is red and patchy. The doctor thinks it is rosacia or something like that.
What is an ANA Titer?
I drink lots of water or sugar free kool aid, since my dentist told me to give up sugar becuase it makes the mouth more dry and can cause even more problems in my mouth. I use three different types of otc eye drops to treat the dry eye, I was using prescription tooth paste but with the relocation process we are in the middle of $17 tooth pastes isn't on the list so I am using the Biotene toothpaste and use colgate also.
I don't have any specialists right now becuase we didn't have insurance until early February. I will be looking for specialists were I am moving. Not so sure I was of any help
I get an a rash with every change of season. It starts out as bumps, and occationally it will go to like small blisters. They inch like hell, just can't stop, most of the time I don't even realize I am itching them. They eventually dry up and then the skin peals and things go back to my nornal. I also get a rash on my face, it is red and patchy. The doctor thinks it is rosacia or something like that.
What is an ANA Titer?
I drink lots of water or sugar free kool aid, since my dentist told me to give up sugar becuase it makes the mouth more dry and can cause even more problems in my mouth. I use three different types of otc eye drops to treat the dry eye, I was using prescription tooth paste but with the relocation process we are in the middle of $17 tooth pastes isn't on the list so I am using the Biotene toothpaste and use colgate also.
I don't have any specialists right now becuase we didn't have insurance until early February. I will be looking for specialists were I am moving. Not so sure I was of any help
Hello Trouble,
Mine is rather different. It starts as white dry spots with a little pinkish-red around it. It began on my hands, then arms, then legs, and two or three on my face and around the back of my neck. Itches like crazy. I've only had it once - in the summer when it was very hot. I thought it was a sun allergy so I stayed either covered up or indoors. Didn't help. Worse at night.
An ANA Titer is the SSA and SSB blood tests that supposedly determine whether you have Sjogren's or not. Mine were > 8. Supposedly the number is supposed to be < 0 or so the lab report says.
I went to my opthalmologist yesterday for a routine checkup and he did the eye dryness test called the Schermer test and it was well within the normal range.
I have plenty of saliva although sometimes my throat gets dry. I do have to chew my food a lot and try to stay away from tough or dense foods and drink lots of fluid with food. I get choked if I'm not careful. I still favor sweets but I, like you, use Biotene and try to brush and use the mouthwash several times daily. I also drink lots of water and occasionally allow myself a diet root beer. This is because there is no caffeine in root beer. I've given up alcohol (didn't take much to do that), and caffeine but I don't see that it makes much difference. About the only symptom I continue to have is lack of energy (fatigue). Thank goodness for work. It keeps me up, moving around and doing things even though I would rather be taking a nap or sitting in front of the computer.
Best wishes to you. I hope you get a good diagnosis. I don't go to FL until April 28th so I won't know for sure until then. I will be sure to post what I find here.
Thanks for the information. When they did the dry eye test, she (opthalmogist) said, "Wow, this isn't good." I am also always tired, whether I am sleeping good or not sleeping I am tired. I haven't worked in 2 years. I lost my last two jobs due to not paying enough attention and they said lack of consentration.
I have a lot of memory loss, which doctors say is normal with Fibromyalgia, they call is Fibro Fog. We I get to were we are relocating I am going to go to some specialists to see if we can get to the bottom of all of this. Not that there is any cure and definante good treatment.
Hi, I have similar symptoms, the worst being dry mouth. It has caused me to loose 8 of my teeth. My eyesight changes for the worse every 3 months. I have a rash they diagnosed as hives. It comes and goes, itches to the bone and is only on my right hand and both shins. Steroid cream help a little. My pain is sometimes unbearable. My joints swell with fluid. I have frequent urinary tract infections, lots of kidney stones, high cholesterol, and now insulin resistant pre-diabetes. If I get stressed out I have a string of headaches sometimes lasting 3 months without stopping.
I see a rheumatologist, an opthamologist, a urologist, and my nurse practitioner. I take 22 pills everyday and night. This syndrome is ruining my quality of life.
Gina RN
Atocha,
You didn't say how old you are. I am 69 (today) and had very dry eyes when I was about 35. There was no Evoxac or anything then. You have some strange symptoms alright. Did the Dr. think the hip thing was sjogrens?
I hope you are feeling better
Bunnyjump
Hi,I am a new member of the message board. I sure relate to all the weird symptoms you are having. I hope you are a member of the Sjogren's Foundation as I get a ton of help from that. I recently purchased a book that has been so helpful to me that I plan on ordering the others. My best to you !!! cbg10
Hi,I am a new member of the message board. I sure relate to all the weird symptoms you are having. I hope you are a member of the Sjogren's Foundation as I get a ton of help from that. I recently purchased a book that has been so helpful to me that I plan on ordering the others. My best to you !!! cbg
Hello!
I have been recently diagnosed with sjogren only on the base of lower lip biopsy where they found lymphocytes infiltration...in rest they found no anti body!just my symptoms..dry mouth, my eyes bother be but only a bit, extreme fatigue and brain fog, swalown salivary gland. ,muscle and joint pain ...my reumatolog did not want to give me any medicine or any treatment..he said that are too dangerous and to com back when it gets even worce...my problem is that the doctors here in Romania really do not know much about this sindrom or autoimune cases generaly speaking , and besides these symptoms I have also other that i haven't found in other cases of sjogren...for example my vanes hurt...aspecially in my hands and my feet...it's hard for me to tap on the computer now...and my right artery of my head is hurting me a lot....it's scarry because my doctor doesn't know what to say about these symptoms and didn't know t give me any treatment and the problem is that i don't know what these symptoms mean and how dangerous they can be...what can happen if i don't take any medication...
In plus all of my symptoms started with pain in my colon that got worced and worced...i managed to get only through half of the colonoscopy because it was to painful...
Please can anyone tell me if at least these vane pain and artery is common with sjogren and what can this mean? i understood that the colon has no connection...
Hi Daniela,
I sure can relate to your frustrations and worries about your symtoms. I have been there and done that and still am. The symptoms do come and go and I sure notice new ones all the time. I don't have the vein pain but have read that by this being an inflammatory disease that the blood vessels are attacked just as everything else is. I do have the digestive problems and that is mainly why I am writing you back. I took every test available for from when food enters my body to when it leaves and the gastroenterologist didn't ever even mention that it might be Sjogren's. I now have read and even done my own investigation of it and see that it is very much my Sjogren's that is involved. That is my worst problem but I have the bone, muscle, pain, well, and tons of other symptoms. I don't have any doctors that understand the disease so I am having to kind of do this on my own. At some point I will have to go to a Rheumatologist but we have none in my town so that will be going out of town. After reading about the meds, I don't want to start them until I have to. So I am reading and reading. I also have Celiac Disease and the doctors didn't understand that either so I have always joined all the associations and read and read to uderstand what I have to do. Good luck to you and I am glad you found the message board. I was delighted to run across it. It is always added support. I come to the board quite often. Hang in there !! cbg10
Hi cpg10!
Sorry for not answering quicker but I had some problems with my grandmoter who has a vascular attack...ufff it gets better and better
First of all thank you so much for answering to me! it means a lot, secondly I see that is unbeliveble what we are going through....the symptoms are very strange...and the doctors really don't understand...it is very hard when you go through this and u have no where to go and who to tell. Until 4 months ago I was ok, everything was fine I had a normal life..and than all at once everything crushed...
The problem is like u said that the doctors really could not put all together the symthoms..allthough everything started at once. The pain in my colon is strange i feel all my colon and it hurts me in each moment ...if i wake up at night it hurts me. It's inflamed or I don't know what to say. And it hurts me on all the trayectory not only on the left or right...everywhere. Anyway I totaly agree with u regarding the medicines...my rheumatholog didn't know what treatment to give me but i'm not sure that i would have taken it any way...but the problem and the big question is: when do we know that is absolutely necessary to start taking some treatment? when we start feeling worced? what is the danger if we do not take the treatment? can we avoid that the desease will get even worced by takeing the treatment? judging on the side efects of these medicines...I don't know what to say...I really really hope that it doesn't get worced than this...and i'm realy concerned for the pain on the artery in my head..pfff..
I'm so sick and tired of all the hospitals and the doctors like you can not imagine. Also I am trying to find answers alone and do a lot of reading... but it's pretty hard because I get tired so easy...this tiredness is unbelivable and sometimes the brain fog. Are you takeing anything for that? And you were right also about the board ...I see that there are also other people that are going through this and I am not so alone...it's pretty hard to be so missunderstood by the family who has no ideea what u are going through (family meaning a brother because i don't have any other family) , friend who look at me like i am crazy and don't understand how i can feel so bad when my blood work looks normal..and finaly the doctors who look at me and say they don't know. Anyway I am also searching for doctors everywhere ...hopping in a bit of good luck because we need it,
let's keep in touch let me know if u discover something,
Ah I wanted to tell you, I spoke on a forum with someone who had sjogren and also sclerodermya (I don't know how to spell) and she keept a diet with only vegetable and fruit juice and some vitamins ..no solid food etc she gave me some details but I don't know what to say...other people said that they felt better when the went on a gluten free diet and no grain diet...I also started this one and it seems slightly better at least with the brain fog nothing else..
I wish I could speak with a doctor about these issues but unfortunatly I haven't found the right one.
Sorry for righting so long...
Best wishes, Daniela
Strange Sjogren's Symptoms? 
