Hi. I'm 49 and have just tentatively been diagnosed with Sjogren's a couple months ago because of symptoms and both sjogren's markers being positive in my blood tests. Last week an ophthalmologist threw his two cents in with a diagnosis of "mild, chronic dry eye (enough to cause blurry vision) and possible sjogren's."
I didn't even go to the doctor for the dry eye, or dry mouth. I went for stomach pain, nausea, diarrhea, chronic headaches, joint pain, and a burning pain (painful even to a light touch) that can be in one place for days or be on one whole side of my body. I figured my dry skin was due to aging. I figured the diagnosis couldn't be right because I do still produce some tears (although cutting onions and fumy stuff no longer make my eyes water). I also produce saliva but it is really thick so I constantly have to have something to drink or my tongue starts to hurt. I also have a spot in my throat that makes me choke if I don't drink a ton of fluids. I believed the joint pain was due to being over weight but after being sick so long this time, I have lost 12 pounds with no relief (which is 1/3 of what i needed to lose).
The more I read of the posts here and other sites, the more I think it really does fit. I just want to make sure the doctors are right. I have been misdiagnosed before which almost killed me, so I have so little faith in doctors anymore. And to make me more nervous, my new rheumy prescribed Plaquenil without reading my papers which said I was on Zocor and already have liver damage (non-alcohol related). Both meds can cause liver damage and shouldn't be taken together (my cardiologist confirmed this) especially by a patient with an already damaged liver. I am so scared and confused.
Does anyone else have sinuses so dry they swell closed? I get mild bloody noses all the time and sores. Sometimes the pain behind my eyes and around my eyebrows is so bad I feel like someone punched me. Even with a cold I can't take sinus medicine without ending up with a bloody nose.
Does anyone know if SS can affect the liver? I read it can affect the kidneys. I'm curious because my PA says she thinks it is do to my inherited cholesterol problem (324 with eating almost entirely skinless chicken and ultra lean ground turkey - red meat maybe once a month - and lots of vegies).
I forgot to add that I have been having increasing problems with my memory and confusion the past year or so as well.
From what I've been reading, Sjogren's Disease can cause all kinds of problems throughout the body. It's systemic. Not just the glands and tear ducts. I'm still really new to all this too, since I was literally just diagnosed with it. The first symptoms I had was extreme fatigue. I feel so tired all the time and can hardly do anything. Then I started having really bad problems with my short term memory and it was hard for me to concentrate. I have hypothyroidism, so for a while I assumed my symptoms were because of that, and I figured maybe the medicine I was taking wasn't working anymore. But I kept getting worse really fast. My feet started getting super cold all the time and my toenails started turning purple. Then all my joints started hurting. Somewhat recently, my mouth got really red and irritated, and then my eyes started burning and felt irritated. It's weird how the most obvious Sjogren's symptoms that most people get (dry eyes and dry mouth) were the last thing to happen to me! The rest of my body just started falling apart long before that happened!
All this started for me about a year ago too. In fact, I think it was pretty much exactly a year ago that I first realized something was wrong. But it was nowhere near as bad as it is now. I just noticed I started feeling like I got tired more easily and my concentration wasn't as good. But then I went downhill super fast, and since then my life has been miserable. I have some good days when I have a little more energy and I can have a somewhat normal day. But it's still nothing like I was before.
So yes, from what I have experienced, joint pain, memory problems, and confusion can definitely be caused by Sjogren's. Some other autoimmune diseases can overlap with it. The frequent bloody nose makes me a bit concerned that you might also have Lupus...from what I understand, it affects the coagulants in your blood and makes it easier for you to bleed. You definitely need to stay in close communication with your doctors, and if you aren't happy with the ones you have now then get a different one. I have a good doctor now, but the one I had before was absolutely horrible. He kept trying to dismiss all my symptoms as being because of "anxiety!"
My rhumatalogist prescribed Plaquenil for me. I've only been taking it for a few days. So far, I haven't had any side effects whatsoever. He said that it was a more mild medicine. I actually haven't heard of it causing any effects to the liver. The only possible side effect I've read about is that it MIGHT cause some damage to your eyes over long term use. But apparently that isn't very common. I read about it even before I was "officially" diagnosed with Sjogren's, and it seemed like it helped a lot of people with Lupus and Sjogren's. A lot of people said it helps with fatigue and joint pain. I hope so, because that is what is really ruining my life right now! I do feel hopeful about it now. I know it's just going to take time for it to work.
I hope you can get help with all this and you can start getting better soon.
Hey....I do want to clarify... because SS is so drying to the eyes, mouth, respiratory and nasal passages nosebleeds absolutely do happen. I get them from little spots to full on all the time, except through the most humid parts of the summer. The rest of the time I need a humidifier, etc.
I had years of pain, fatigue, etc before it attacked my eyes and throat. Those may be the hallmarks but in talking to people here and my awesome rheumy, it seems that its not too uncommon to have other signs first. It has a lot to do with why we go diagnosed or misdiagnosed for so long.
Take a look at your cholesterol med. Some of them can cause bruising. BUT....you are always in need of being your own advocate. Docs do miss things occasional. Ask the questions and if you feel they are being dismissive, ask them to explain why its not a factor for you. Others have heard me say it, but I often ask all of my docs the same questions because they all explain things slightly differently and some will point something out that the others don't. It helps a lot. Hang in there and keep us posted.
EnjoyLife, I'm glad you mentioned that. I didn't think of nosebleeds being caused by the dryness. That's a good point. I'm thinking of getting a humidifier, actually, because of the problems I'm just starting to have with my eyes and mouth.
Most of us use saline spray for the nasal dryness, and my Internist has told me that I can use Neosporin or Vaseline for the nasal sores, and there are gels available for this as well (ask the pharmacist) but I always use the saline first. Sometimes I boil a pot of water and stand over it to get some moisture that way. Though I don't get the nose bleeds, they are not uncommon for Sjogren's sufferers.
Yes, we are familiar with the agonizing search for 'our Doctor', there are good ones out there, it's just finding them! I keep a running list of problems/questions to go over with them at each visit. I'm very fortunate to have a good Internist about 5 minutes away, who will usually see me within 24 hours of calling!
As I was just telling Gateway, be careful to keep humidifiers, a/c units, dehumidifiers washed with bleach as they can grow mold, and that is the LAST complication we need!
My Rheumatologist has explained the memory/concentration problems as caused from chronic pain and lack of sleep from chronic pain. Getting proper sleep is a big one for me, still!
I hope this is helpful, and that you can get to a better place very soon, jonchri!
Hi welcome to forum - I'm not the touchy feely type so I'll leave that to the ladies but your Liver question is yes SS affects the liver in several ways and anti phospholipid syndrome is sometimes found with SS. Yes to your sinus staements affects me and many others that way too try a spray with isotonic saline solution - helps me "dissolve" the thicker nasal contents. SS can and usually does affect all epithelial tissues so every organ is affected to some extent but the liver is an organ that needs to be checked out in SS sufferers. You need full bloods and also anti body tests for liver involvement and anti phospholipid syndrome in my opinion. Kaz or Cassi may have extra input for you here. Good luck.
SK memory fatigue etc are not just from stress or lack of sleep they are cuased by change3s to the neuro transmitter profile in the brain cuased directly by SS, ME and fibro - most AI seem to cause changes in neuropeptides that result in depression and fatigue neither are mainly pschologica they are biochemical in origin but the Psych " profession" is like rheumatologists light years out of date in thinking and research. I collaborate with a very well respected international neuropsychologist on this research and it is hs main area of interets although from the MS background but there are as ever massive overlaps.
Thank you, assybish! That's good to know, and even more validating. It's easier for me to read this info, than hear it. I think if a Doctor actually tried to explain this to most patients, they would be 'lost', so the answer given me was more easily understood, but I always want to know as much as I can. Is this the 'substance P' that is linked to Fibro?
assybish said:
SK memory fatigue etc are not just from stress or lack of sleep they are cuased by change3s to the neuro transmitter profile in the brain cuased directly by SS, ME and fibro - most AI seem to cause changes in neuropeptides that result in depression and fatigue neither are mainly pschologica they are biochemical in origin but the Psych " profession" is like rheumatologists light years out of date in thinking and research. I collaborate with a very well respected international neuropsychologist on this research and it is hs main area of interets although from the MS background but there are as ever massive overlaps.
It sounds like your experiencing symptoms that many of us are familiar with, and - if both your SSA and SSB are positive - there's a good chance your "temporary" diagnosis will be confirmed. Did your ophthalmologist do a Shirmer test to check tear production? It a very fast and simple test - a small piece of litmus-like paper is placed under each eyelid for five minutes to measure the amount of tears being produced. Those results, in combination with my positive ANA and SSA, were enough for my rheumatologist to diagnose me.
Sjogren's can most definitely affect your liver, causing both autoimmune hepatitis or cirrhosis. It can also affect your entire GI system. It has mine. I have GERD along with severe inflammation which has resulted in gastritus, esophagitis and duodenitis. I believe it is also responsible for my recent bout of diverticulitis as well. And the swelling and inflammation in my esophagus also causes me to have difficulty swallowing (especially my meds.) There are times when it feels like my entire abdomen is rebelling and I've recently lost 22 pounds as a result of it all. (Don't worry, I still need to lose more!)
So do your best to get a good team of doctors who know and understand Sjogren's - especially an informed rheumatologist. It's a difficult disease to handle since no one "ologist" see all aspects of it. I encourage you to read all you can to try and understand how it can (and does) affect different organs and systems.
SSA and SSB are not specific to SS and in any case both are not expected to be +ve in SS. There are many (50% or so with clinical SS that do not have elevated SSA/B) and before any one jumps in with the SJO test - I paid to have blood shipped from UK to USA for the SJO analysis - it tests ANA 2 types RF 2 types plus 3 salivary anti bodies 2 types for each ALL MY RESULTS WERE NEGATIVE BUT I HAVE CLINICAL SS agreed by my GP, rheumatologist , opthalmic consult, dentist and neuropsych consult. To use an awful US expression - sorry " go figure" Here is a copy of the summary. As you will see they do not claim 100%% or even near it accuracy and need multile references to agree for a definitive diagnosis. Sorry guys - it would be so nice to give you an easy answer to SS diagnosis but as you can see for yourselves there isn't one. I have had SS obvious symptoms for 2 years now.
I have attached the summary as a word document as it wouldn't paste in here as image. I have removed personal data apart from my name
Sorry to post again I tried to edit the post above and the site crashed without saving - it doesn't seem to "like" Firefox :(
Please do read the .doc and you can see for yourself the summary.
I would like to publicly thank Raul Saona director of IMMCO diagnostics who enabled me to be tested when the test is not available outside of USA. He faciltated the whole process free of charge for me in testing and shipping to the USA.
I paid for the UK phlebotomy.
IMMCO are very professional and I greatly appreciate their efforts. I am sure for many the SJO test will help get an early and more accurate diagnosis but it is not 100%. AS i HAVE POSTED HERE BEFORE if you read the original research papers that the SJO test protocol is based around it only ever claimed up to 85% accuracy and 95% specificity.
I am so sorry there are no easy answers guys but as ever I tell it as it is (or at least as I read it}
substance P is one of the neuropeptides involved but there are probably several others and not just at brain level but also HPA axis and small fibre peripheral level too hence some of the neuropathy associated with SS also probably Raynauds too.
It really is a S**** disease in that such a tiny modification in the immune response can affect so many tissues and organswith so many painful phsical effects. Just wanted people to know that depression and fatigue are not psychological in AI they are neuro-hormonal changes caused by the disease.
My freind the Neuropsych has a hypothesis that all true depression ( not just sadness and the blues everyone suffers from) is an auto immune condition even in patients who have no recognised AI like SLE FM SS etc.....
I agree with his hypothesis and have seen some of the research data he bases it on.
assybish, I could not open the attachment unless I purchased microsoft office, and I'll pass on that fee right now, but that info may already be in the resources page.
One of the other groups where I volunteer is Charcot Marie Tooth Disease, which is a genetic muscle wasting disease, though not autoimmune. Would the same principal apply there as far as neuropeptides?
Have atached it in html format so should display in your browsers. update - no that didn't work it didn't copy the images properly bugger!
I have to profess total ignorance about that disease but from 5 mins speed reading no I don't think so CM seems to be defective myelination and mitichondrial cellular trafficking resulting in demyelination and loss of neurotransmitters. I don't think it is neuropeptide related as are AI disease changes.
Thanks for taking a glance for the CMT for me, assy. There is no such thing as a good disease, but this is a heartbreaking one. Some of those people waited as long as 65 years for a diagnosis, only for there to be NO treatments other than PT and OT. They are at present in stage 3 trials with some low dose combinations that show promise.
I am currently reading an article geared at CMT sufferers, and the direction they are going is that chronic illness, with chronic pain, lack of treatment, causes chronic anxiety and grief, so since we were on the subject here, I thought I would ask.
I jumped in, COMPLETELY over my head there, but the group was so inactive they were going to close it, I took my 5 minute glance and knew it was a very important group for those people to have, so I grabbed it. dancermom just told me we had 1300 visits there last month.
This Sjogren's group was on the list to be closed too, and last month we had 5000 visits! I happen to have this disease, but surely do not profess to be an expert, but am very happy it is thriving! It is needed, and it makes a difference in how we are able to cope.
Every visit, every new member, every existing member, each and every discussion and response is important in keeping a group in existence!
Sorry to go off topic on your discussion, jonchri.
I'll be sure to do the free trial as long as they do not insist on my credit card!
I have little to no understanding of the tests that were ran on me, but I do know that the one used was run 4 or 5 times before it showed up as anything but false positive, then finally it was off the charts high positive.
My phlebotomist also has primary psoriatic arthritis, her fingers are gnarled beyond belief, she has moderate to severe jint damage, and she has never shown ANY markers for autoimmune, she is also a grandmother, so that gives you an idea of her age, and any blood tests she submits are of no cost to her. Just imagine how many times she has attempted to have something show on labs.