I am a 25 y-o male. Experience dry skin, eyes and mouth. Went to rheumy and got regular antibodies panel + salivary glands scan. All negative.
Recently, I went to explore genetics and found that rs10488631(C;C) is considered highly indicative of Sjogren's. Also, my father experience dry eyes and mouth, when asked. He also had detoriation of his teeth, which were fine until around 50.
My rheumy called me that since all tests are negative, and I am male, it is incredibly unlikely to have Sjogren's. However, I now have information of my father and the genetic link, I am in UK by the way. I have not found any Early Sjogren's test profiles available and I can try to ask my rheumy.
Note, that I try to go by symptoms: more dental decay, less saliva, drier skin and dysautonomia. A newly developed small intestine surface ulcer, that hurts. Some symptoms of gastroporesis.
Any advice is appreciated...
As another male, I have symptoms but negative tests. I was diagnosed on symptoms. I used tones to kill H. Priori (ulcer). The typical meds have not worked for me.
Like you, the symptoms run in the family on my dads side. At family reunions many of us will discuss best soaps and lotions that we can use. We also discuss what medications have worked and how things have progressed.
I may have said it before, in my signature you can see what I am taking. I do have other ailments and some of the medications and supplements are for those.
When did the symptoms start for you and how long it took to get worse? My father, when asked, said he has dryness issue for a decade. Should I expect some serious issues very soon? My rheumy called and said "you do not have Sjogren's" but from this forum, it seems people have symptoms and test negative for everything.
Hi Confused:
I had all the symptoms of Sjogren's, but no blood tests to confirm it. Several years later I was discovered to have a serious Immune Deficiency. My Immune System cannot produce enough antibodies to protect me, so I have added antibodies every four weeks.
BUT, and here's the weird part, my immune system attacks my body, systems and organs. NOT with autoantibodies (as in autoimmune conditions, like Sjogren's) but another biochemical (probably cytokines, according to my Immunologist and my husband who is also an immunologist).
My immune system has attacked and damaged: the same system that is involved in Sjogren's (parasympathetic, moisture producing 'glands'), AND, my ears (hearing, Menierie's), lungs, bladder and Peripheral Nerves, Small Fiber Nerves, and my swallowing, my small intestine, and probably others neurological damage.
SO, my immunologist (Duke University) says, 'we use the tests we have, not the tests we need."
It may be some consolation that the treatment you need at this point it probably one of the moisture producing medications (Salagen or Evoxac) to help you have more saliva and perhaps more tears. Ask for that, if indicated.
Otherwise, just wait and watch.
The major drugs for Sjogren's are Plaquenil and Methotrexate, and some of the biologicals (I think).
You won't want those unless truly warranted.
Do you have severe fatigue? This is often a symptom, as well.
If your eyes are dry, your eye doctor can do simple tests for that, as well as for dry mouth, which your dentist can do. Every time I see my Otolaryngologist, he says "Wow your mouth and throat are really dry!" And I take 20 mg Salagen a day!
If there is dryness, then Salagen or Evoxac will help.
I wish you luck.
Elaine
I can trace my symptoms back to my childhood. They got worse in my late 40s. It took 12 years to get a DX as a male and then it was symptoms only by the lead specialist at the University of MN. I am no longer working. I manage my symptoms.
Is the sudden onset of warm, joint pain and chills SJorgen;s?
Confused Potato, thanks for your post and good on you for researching and getting clinical advice from Rheumy. I hadn't considered getting genetic tests before. My younger brother has an autoimmune SLE that affected kidneys, lung and I believe brain. He is now treated using epilepsy meds even though he does not have epilepsy these have improved his mental health considerably. My Father has various skin conditions and health issues including diabetes. It could be lifestyle factors for him yet his Mum (my Grandmother) also had various illness. I have two other sisters one with mild autoimmune symptoms as yet undiagnosed, the other seemingly health 'normal' at this stage.
I'm female. It took a while (few years) originally for me to be diagnosed, Doctors tended to treat each symptom as a separate issue. However, eventually I had autoimmune markers in blood tests. These showed up for several years yet now normal on blood tests. However, during 'normal' phase time I developed suddenly and always present pain/stiffness in every joint, worse when I have been still for a while. As you described the heat from I presume inflammation in the body sometimes makes me feel too hot but also I sometimes feel too cold. The Rheumy didn't make a diagnosis on this as blood tests normal. It is possible to be rheumatoid arthritis but might need to get worse before there are pathological test indications. Having said that I take a while to be able to walk in mornings and have lost range of motion in many joints with fingers locking in bent position at times. When I lean too long on a peripheral area eg hand, the circulation appears to cut off too easily and my hand goes black- scary to see.
I take glucosamine and manganese, warm baths, stretch and get massages to relieve symptoms.
Hopefully your Specialists can pick up on the symptoms you experience having a systemic link and then treating you suitably. You may not develop any further complications and may also improve on the ones you do experience. being young with onset may benefit with your bodys ability to recover and early treatment. Just relax as much as you can so you do not further constrict your body with stress. best wishes.
Ask to be tested for the HLA-B27 Antigen. Having it by itself is not a diagnosis, but it can be used to place you into a pretty small pool of folks predisposed to Auto Immune disease... especially if you are negative for other antibodies or biological markers.
i.e. I myself am a sero-negative Primary Sjogrens patient... besides having this antigen, a high RBC, and C4 low compliment, I would be indistinguishable from an otherwise healthy person. The lip biopsy can confirm the diagnosis, even if you don't score > 1.0 on the focal score. Just the presence of lymphocytic scialenditis and aggregate of lymphocytic infiltrate in the salivary glands is enough to confirm an immune response consistent with Sjogrens (when negative for everything else).
Dear Confused,
To my knowledge the sudden onset of warm joint pain and chills are not among the 'usual symptoms' of Sjogren's. BUT almost anything can be happening when there is an Immune Disorder.
You can find a great deal of information about Sjogren's on the parent website for this forum, as well as on many other websites.
In the beginning this is all very confusing, of course.
I have had every possible genetic test related to my neuropathy since it is so profound. I have NO genetic markers that show unusual signs.
The drug I take for the pain and suffering of Peripheral Neuropathy and Small Fiber Neuropathy IS a drug more commonly used for Epilepsy/seizures: Gabapentin (trade name Neurontin).
It appears to me, from your posts, that you are worried and perhaps even frightened about your symptoms and the possible diagnosis of Sjogren's or another condition that is related to your Immune System.
It probably won't help much, but I know from many, many years of experience, with a long, long time before any diagnosis was ever made, that it isn't helpful to be anxious and afraid. And it also isn't helpful to approach most doctors with a self-diagnosis firmly in your mind.
Look to your father for a sense of what you can expect.
Keep track of your symptoms on a daily basis, Confused.
When you next see your doctor(s) refer to your symptoms list and start with whatever you see most often when you describe your symptoms.
List not only what is happening, but frequency, severity and how this affects your activities of daily life.
This will be up to you to manage, both in recording keeping and reporting.
In the meantime, read the literature on Sjogren's, and related immune disorders. If your warm joints and chills persist, you will want to consult a specialist at some point. Having a complete and detailed record of those symptoms will help.
I don't know for sure, but I believe that in the UK it is more difficult to establish a diagnosis without confirming test results, and that referral to a specialist is more difficult to obtain than in the USA.
Please keep us posted, Confused.
Best wishes, Elaine
Confused Potato,
I am also a younger man with Sjogren's. I have sero-negative, meaning the blood tests did not show up positive. My eye doctor, My ENT (Ear, Nose, and Throat doc), and my rheumatologist all jointly confirmed Sjogren's based on severe dryness and the ENT performing a biopsy of my salivary glands which showed diseases activity.
You may want to look at getting a referral to an ENT by your rheumatologist as they can assist with disease confirmation. You can look it up on Google under "Labial Biopsy" or ask your doctor next time you go in.
https://www.hopkinssjogrens.org/disease-information/diagnosis-sjogrens-syndrome/labial-gland-lip-biopsy/
I would also recommend on reading up on Sjogren's if you are fairly confident you have this, the best book I have found is: "The Sjogren's Book" by Daniel Wallace : .amazon.com/Sjogrens-Book-Daniel-J-Wallace/dp/0199737223
or the Medifocus.com Guidebook on Sjogren's Syndrome : medifocus.com/zrh011.php
I hope some of this helps you. It takes a long time to get diagnosed and to comprehend everything happening with your body.
good luck to you!
Quote from: markt on February 21, 2018, 10:14:53 AM
Ask to be tested for the HLA-B27 Antigen. Having it by itself is not a diagnosis, but it can be used to place you into a pretty small pool of folks predisposed to Auto Immune disease... especially if you are negative for other antibodies or biological markers.
i.e. I myself am a sero-negative Primary Sjogrens patient... besides having this antigen, a high RBC, and C4 low compliment, I would be indistinguishable from an otherwise healthy person. The lip biopsy can confirm the diagnosis, even if you don't score > 1.0 on the focal score. Just the presence of lymphocytic scialenditis and aggregate of lymphocytic infiltrate in the salivary glands is enough to confirm an immune response consistent with Sjogrens (when negative for everything else).
How is RBC related to any of the conditions? I do not remember if rheumy tested C4 though.
I think there are symptoms of delayed gastric emptying which means nerve damage. What the heck do I do?
P.S. Started having, according to the Internet, signs of neuropathy. 1) POTS 2) Delayed gastric emptying, 3) picks and needles in various places 4) Random burning body parts.
This is getting supremely depressing and my life sucks badly.
Realised rheumy have done a ton of tests: ANA, ENA, complements, immunuglobulins, anti-DNA and a bunch others ... I find it hard to believe the disease process is not present with those symptoms, especially severe POTS.
ConfusedPotato, how are you feeling the last few weeks?
You are in the UK right? Have you found out by any chance how the early SS test can be done here?
As another relatively young male, I sympathize with you.
Most people with autoimmune diseases have periods of worsening symptoms and then some stability and often even improvement (in the short term). So have some hope. Personally I was in a terrible state in early 2016, and in summer 2017 but doing comparatively much better now.
Yes it is a mystery to me as well how something can go so seriously wrong in the body without any specific indicator in the blood. I read about how the ANA test is often unreliable because of modern blood testing methods, however I see you also have a negative ENA - which is a more specific subset of ANA.
Some researchers believe AI disease, or some of them in some people, are caused by hidden chronic infections. Most doctors say this is not possible but I really don't understand how they can say that because there are at least two very well known and established chronic infections, which are HIV and Lyme. It seems quite possible to me that there could be other pathogens that cause disease that have not been discovered yet. Joe S on this forum has a theory about "nano bacteria".
Is there anything abnormal at all on your blood tests? For example do you have a low white blood cell count or high ferritin? I am also curious if you had IBS prior to SS symptoms? Sorry for all the questions. I am really trying to establish patterns in people with seronegative SS. Especially young guys like us who should be statistically very unlikely to develop SS.
Another reason for hope is that progress is being made all the time both with options for treatment and for controlling symptoms. Take care.
I was diagnosed from a lip biopsy. My SSA and SSB are negative. I have a positive ANA, sed rate and occasionally my CRP is high. If the lip biopsy is done by a good ENT, it's not too bad. It's sore for a while..... Don't let them do a huge cut, saliva glands are small.