Not been here for a while as have been unwell with flu followed by pneumonia. I have diagnosis of RA and Hashimoto's, am autoantibody equivocal and have recently had many investigations for small fiber neuropathy - all so far inconclusive although waiting to hear results of a skin biopsy from my calves. My rheumatologist thinks this is probably part of my multi system RA but owing to increasingly dominant ENT symptoms over the last 6 months I'm not so sure he's right. My joints have been the least of my problems for over a year.
Once my chest has been shown to be free of infection this coming week, and assuming my white blood cells and kidneys are okay - I will start on a low dose of Imuran in the hope that suppressing my immune system helps with general malaise. I have lost my appetite and sense of smell over the past few months, have bouts of nose bleeds with sores and dryness, dry eyes and jaw/ ear pain. I have vestibular troubles, GI issues and have lost weight without trying.
I would be very interested to know if others with sero negative SJS share these ENT and other symptoms and how doctors might distinguish between Sjogrens and Vasculitis. Also experiences of Imuran would be good to know about. I have tried and failed to tolerate Sulfasalazine, Methotrexate, Hyrdoxichloraquine over the last four years so I am really apprehensive about trying another DMARD now. But also need to get my life back on track after 9 months off immune suppressant drugs. I have been completely wiped out and often bed ridden.
The Sjogrens can have vasculitis of the smaller vessels and the Wegeners has vasculitis of the larger vessels and is much more invasive and dangerous. Generally, Wegeners will have blood work that is more inclined to be more actively positive. Wegeners can affect the sinsues, lungs, kidneys, etc. The vasculitis is a term that describes the autoimmune attack on the blood vessels. There are several other autoimmune diseases that have vasculitis as s very active component. Churg-Strauss is another one.
I have a friend whose husband had Wegeners and passed away last Fall. He had very noticeable symptoms and blood work and could get quit ill at times. The scabbing a Sjogrens patient gets in their nose is generally from the dryness while the dryness and bleeding with Wegeners is more invasive in the membranes and the bleeding is much more. Wegeners can literally destroy the nasal cavity.
All of the symptoms you described are things that I have suffered with over the years with my Sjogrens. The balance or vestibular issues are common in autoimmune disease and can be part of the Sjogrens. I lost the hearing in one ear also and continue to have balance issues. Also, he GI problems are present in almost everyone. Most of us are on medications like Omeprazole, Nexium, etc. for the treatment of Gastric reflux.
The jaw and ear pain are very common as is the loss of appetite and weight loss. Another thing that happens is the inability to eat a lot of different foods. I have problems most of the time with my appetite and the thing that I can eat the easiest is cold cereal with blueberries. That keeps me from starving to death I think. Although, I can find things to nibble at that keep me from getting too thin. Yogurt is another food I like to eat and also soda crackers with butter.
There are so many things that can occur with Sjogrens besides the dryness, etc. I have had to have all my teeth pulled and also had carpal tunnel surgery on both wrists. It is never ending keeping up with the issues. The good thing is that every so often we have a reprieve and things will settle down a little bit. I hope that you get some relief from the Imuran and things settle down for you. We can get really miserable at times, can't we. Good luck. Irish
Thanks Irish you have supplied me with exactly the advice I have been looking for. My issues have developed over years not months - although the pneumonia seems to have exacerbated them all. There does seem to be a very close resemblance with Wegener's so I feel less foolish for wondering now although I'm inclined to think mine is probably Sjogrens rather than WG after reading your reply. I admit I was pretty scared of WG when this person confirmed mine sounded like his. I don't want the tinnitus, hearing loss or nasal collapse of course - never mind the organ damage. I have been very ill and collapsed in faints a couple of times over the past few months so the immagination has gone into overdrive. I have coughed up blood and had severe nose bleeds and the vestibular and GI issues also attend WG vasculitis but then I have had pneumonia but unlike with WG things are getting better following two courses of abtibiotics. I still feel out of sync and can't do too much without thinking I will pass out.
My GP blames the recent fluA for the fainting and the lung infection for my hoarseness and respiratory issues. He is suggesting Menieres for the dizziness. But no one seems to be addressing the long term absence of taste and smell or TMJ.
The nose bleeds and crusting are indeed more pronounced when my nasal passages are extra dry. The only thing that stops me thinking I have SJS is because my mouth/ dental work are in very good order and the dentist told me that rotten teeth are a hallmark of SSJ and says my saliva ducts are very productive so he didn't believe SSJ was my problem. Whereas this is not a hallmark of Vasculitis. I have negative Sjogrens antibodies but am fairly sure my ANCA has never been checked.
I was convinced that I had Wegeners years ago when I first had so many symptoms and especially the nasal symptoms. The doctors thought I was crazy, of course. I kept insisting it was autoimmune and they still didn't seem to get the picture. My feeling was that the inability to find a diagnosis just made it more clear that autoimmune may be responsible.
I would suggest that you see an immunologist and a pulmonologist. You need to get to the bottom of this. Blood from the lungs can be indicative of many things. There are also many infections/fungi, etc that can cause lung symptoms because of autoimmune diseases or other disease problems. Getting all the appropriate blood work is also important..
There is a Wegeners that affects mainly the sinuses, etc., but usually Wegeners untreated has a downhill course. I would still make sure to get a better follow up so that you are sure to have the right care. Good luck. Irish
P.S. I did not realize how dry my mouth was. I had all the dental issues prior to my sjogrens diagnosis and it took over 15 years for my teeth to fall apart. I did have other Sjogrens symptoms all those years though and would suck on life savers or chew gum much of the time but did not know that I was that dry.
Also, after having Sjogrens for about 40 years and then getting diagnosed I finally got the dry eyes. The last symptom that showed up. The neuro symptoms came earlier.
Thanks Irish. For the time being I have resigned myself to these ENT issues as being part of my broad multi-system type of RA. If this is a mild but progressive type of Wegener's then it is quite possible that Imuran will help - and this is what I'm really hoping. I know that, as you've experienced yourself, if I start showing my GP and rheum that I've been researching WG they will feel that I have no confidence in their diagnostic capabilities and I may not be taken seriously further down the line. As an RA friend pointed out they would anyway be very reluctant to try the first line WG treatment (Cyclosporine?) on me because I'm so drug intolerant and it is such a powerful and toxic medicine.
Hopefully we may be moving within a year to somewhere with better specialists who understand and see the various types of Vasculitis and Sjogren's and who may also be more open minded about seronegative connective tissue diseases or may re-check my autoantibodies and find that they have changed. I think the thing that goes against me getting a diagnosis of GPA/ WG is that I haven't got kidney or lung or skin involvement yet (although I'm still waiting for the results of my chest x-ray) and the pneumonia appears to be clearing up so I'm no longer producing brown sputum. If this was vascular then the two antibiotics would not have made any difference I believe.
Equally the neurologist was dismissive about me having Sjogren's because my Ro and La are normal and he didn't feel it worth me having a lip biopsy when my saliva production is good. Sicca is very common with RA. As I've said my saliva production is pretty good and my teeth are apparently in good shape although they ache like crazy just now. My ESR is usually pretty high which I'm told means this is more likely to be rheumatoid or vasculitis than Sjogrens.
However I do take your point that not all the classic symptoms of Sjogren's show up in each person. I used to have severe eczema, rhinitis and alopecial over many years. Now my eyes are pathalogically dry but it doesn't really bother me as the rhinitis used to because they don't go pink and I have no corneal ulcers. I just just use drops and ointment when I remember - which is no longer everyday.
The nose bleeds have also stopped over the past few weeks which makes me feel that pushing for investigations into WG might lead me up another blind alley - and in turn mean that I'm less likely to be taken seriously in future. Presently the worst symptoms are my jaw ache, lack of sense of smell, dizzines and the small fiber neuropathic pain. I feel my mouth is changing shape and am to have a jaw x-ray in June to see if this is part of my RA perhaps - or wear and tear arthritis. Also I am to have GI investigations in a few week's time so I suppose there's always the possibility that things may emerge which may shed new light and help a penny to drop with my medics. If I push for anything more from my GP it would be to see an ENT consultant. Thanks for all your help - it does sound as if we have much in common. Mat
The thing is---Sjogrens is very common with people who have RA. Also, many people-about 40% can have sero negative Sjogrens. In other words, one doesn't need any positive blood work. I am so amazed at the number of docs who don't know this. It is inexcusable!!!!
I had sero negative Sjogrens for years as my ANA was even checked for years and was negative. I have very high numbers for Hashimotos, myasthenia gravis, etc and very high ANA and I have never, ever had a high sed rate. You have to have a biopsy to be checked for Wegeners. It is more rare than other autoimmune diseases and generally is quite invasive and makes a person so ill that it is not dismissed very easily.
Sjogrens is extremely common in people who have other autoimmune diseases and especially RA, Hashimotos, Lupus, Scleroderma, myasthenia gravis,etc. I would bet it is common in most autoimmune diseases. In fact, I read an article a few years ago that poses the question that Sjogrens may be the primary autoimmune issue and that all other autoimmune diseases are a branch of it. Will be interesting to see what the future brings with this. Irish
My GPs vary. The main GP I see is certain I have Sjogren's as part of my RA - and the rheumy and his colleague (a connective tissue professor - expert on Vasculitis I saw a year ago) are both quite clear that I do have RA and I do have autoimmunity and believe that I do have secondary Sjogren's/ Sicca and Raynaud's. They have ruled out Lupus because of my age (52) and the lack of organ involvement to date and the fact that I would be getting better now not worse.
But a woman I spoke to on a Sjogren's helpline also felt it was unusual to have productive/ healthy saliva production and a high ESR (a characteristic of WG) if I have proper Sjogren's. I have been very ill recently - months spent in bed and really not feeling right with fevers, lack of taste and smell so not eating etc and dizziness, crushing sensation in my chest and all the rest. I realise people with WG are usually very sick when it's left untreated but I'm less sure if this applies to the more sinus focussed type. I have just had pneumonia so have been very sick with this myself so WG is probably ringing more bells with me than it would otherwise.
Do you have jaw issues like mine and have you come across this with other Sjogren's sufferers I wonder?
The thing that makes me wonder most about whether this might be a type of GPA/ WG is the fact that I can feel things shifting in my jaw and nose and the pain is really bad. My mouth no longer seems to close comfortably and I struggle to chew anything. This could be RA eroding my jaw joints I'm told but this is unlikely when my hands and feet aren't equally painful or swollen I believe. I also have respiratory issues now. I also just find it odd that these ENT/ small fiber neuropathy symptoms are getting so much worse than the arthritis side of things after 9 months since Methotrexate if this is RA. The wet, cold prickly sensation in my legs is also spreading to the top of my thighs so I feel it in my groin now - as if I've wet myself!
Perhaps the skin biopsy results will reveal something vascular but if not I think I'll have to assume it is just a very unusual type of RA. I know many people with RA however and none of them have these symptoms as badly as I do without first having joint erosions and swelling. The most systemic rheumatic diseases are the vasculitic ones. Nothing came up from my lumbar puncture in January although it was contaminated by a traumatic tap. My brain scan ruled out MS and none of the serum blood tests revealed anything untoward - nor did the nerve conduction tests. This rules out a demyelanating type of inflammatory neuropathy.
I admit I'm a bit worried about taking Imuran for RA/ joint problems rather than the disease process which is actually affecting my nervous system much more. If these things progress despite the Imuran or I don't tolerate the Imuran then what will happen if they haven't been acknowledged? The man who has been advising me seems to have his WG well managed and his started with many of my symptoms and I guess I've been quite swayed by this.
But then as you say connective tissue diseases very often overlap and it is more likely that I have some sort of undifferentiated connective tissue disease. I will be back if I find out what's going on but not expecting this to be any time soon. Thank-you.
First of all, I have lots of jaw issues and so do most sjogrens patients. This is from the inflammation affecting all the salivary glands. The parotid glands in front of the ears and along the jaw line, the 2 submandibular salivary glands on both sides of the jaw and the sublingual salivary glands on the floor of the mouth.
I had to have one submandibular gland removed due to salivary stones and inflammation. I am wondering if your ENT and rheumy have educated you on the effect of Sjogrens on these glands?? You might want to do some searches on this site about salivary glands, effect on pancreas, effect on liver, effect on all secreting glands,
The pain that comes with the effect on the salivary glands, especially with stones, can almost drive one to their knees. I have had some episodes of spasms that have been excruciating. The glands need some warm packs and some gentle massage to move the thick mucus through the ducts. The ducts all empty into the mouth in different areas. When the mucus is really thick in the swollen and inflamed ducts things don't work very well.
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I am totally confused about your docs remark about you not having lupus because of your age and that you would be getting over it now and not having organ involvement. I am a retired RN and I have never heard anything like that. Lupus can come at any time, at any age, in any way and with slow or fast symtpoms.
It is possible that you are having lupus symptoms. Sjogrens and lupus are kissing cousins and doctors have a severely hard time telling these two diseases apart at times. The sed rate and other tests can all be negative and you could still have lupus. Also, Sjogrens can affect the lungs and cause serious issues. It can cause one to have lots of pneumonias, etc. I fear that the worry over Wegeners is possibily sideswiping the possibility of severe Sjogrens symptoms and/or lupus. Sjogrens can also cause kidney issues.
I think you would be wise to get a second opinion and see a pulmonologist. Most of us have this terrible thick mucus in our lungs that is very hard to cough out. This makes us very high risk for infection also. The fact is, Sjogrens changes the amount of saliva and it changes the consistency and bacteria in the saliva. Normal mucus contains about 700 types of bacteria and when this gets screwed up by the inflammatory process of autoimmune disease the types of infections and the amount of infections can change in the mouth, nose,sinsuses, lungs and gastro-intestinal tract.
Nausea and heartburn are rampant. THe sjogrens patient produces less saliva. This causes there to be less saliva in the stomach which it turn dilutes the acid. When the acid is not diluted it tries to eat a hole in our stomach and it hurts. Also the change in the bacteria in the mouth affects the bacteria in the colon and intestines and causes us to have lots of weird things. I have had some pretty weird colon infections over the years that is for sure.
It is common to have fevers with autoimmune and aching in all sorts of places plus the dizziness and balance issues are par for the course. Also,the loss of sense of smell is extremely common.This is caused by the nerves in the nose being affected by inflammation or neuropathy of the Sjogrens. Most of us have this. I have never heard anyone talk about the relationship of the ESR to the mucus. The fact is everyone develops symptoms at a different rate and in a different order. There is not one Sjogrens patient that is alike.
Also, with RA or any arthritic disease, the joints are not all affected at the same time or in the same way. I get arthritis in my jaws at times and it is painful, but it doesn't always happen at the same time as the hands or fingers. I am just trying to point out that a lot of your issues do sound like a very possible case of Sjogrens. Also, it doesn't matter whether we have a primary or secondary case of Sjogrens cause the treatments are all pretty much the same.
There are a certain amount of drugs out there that we can try and we are lucky if something helps us. The days hasn't come when we have tailer made drugs for each autoimmune disease. That may never happen either as these diseases are pretty much all the same beast with just different deviations. If anything, it teaches us patience.
I have been on IVIG for 9 years once a month for my myasthenia gravis but it hasn't cured my Sjogrens-- may have helped, but I won't know until I stop the infusions. I am on the plaquenil and prednisone but tapering the pred, See next post.
The truth of the matter is the IVIG keeps the myasthenia more manageable, but my life is pretty unpredictable and I am not able to do much and am miserable a lot of the time. I just learned to live with it. I get up in the morning and get dressed for the day cause I hate staying in bed and being in my jammies. I allow myself some sick days with my "blankey" lol but I try to keep up and about as much as possible.
I worked until I could hardly stand up and was only getting 2-4 hours of sleep at night for a cople of years. I have the nausea and at one time I woke up every single morning at 4AM sick as a dog. I figured out that if I drank 7-up with ice and gingersnaps it helped my nausea and it would ebb a lot by the time I had to get up. Turns out that ginger is a natural antidote for nausea.
I also ran a low grade fever for about 4 years and then it quit. Never did figure that one out. There are just so many things that go with this. Do a lot of searching on this site and you will find lots of info and explainations about things. Also, the feelings in your legs is sounding like neuropathy and many people here suffer from this and take meds for it. I get it off and on but have not had to start any meds probably because of the prednisone I am on and currently tapering off. We get this in our hands, fingers, feet and toes (I get this) plus the legs. We can get neuropathy any place in the body. Sjogrens has a high incidence of neuropathy. Hope this info helps you. Sjogrens can be a serious illness for most of us and we all learn to deal with it in our own ways. Sjoggies are tough and we perservere!!!!! Just ask all these great people on this site!! Take care and good luck. Irish
Thanks Irish - you have a lot to put up with and im very grateful for your tips. I'm back on track with the SJS after everything you have explained. I do already know a lot of it re lack of mucous production but I appear to be saddled with doctors who don't so I went down the vasculitits route - which also seemed to make sense but which they also know very little about - apart from if it comes with a classic rash.
I think they are all so focussed on me having untreated RA that they just don't regard the rest as such a problem - or not one that drugs can address anyhow. I have always been an overly dried out sort of person so Sjogrens always makes sense to me but I got waylaid for a while. Interesting about your MG being helped by the IVIg but that it does nothing for the SJS. My rheumy did say that Imuran was the empiricle drug for me at this stage but warned that just because something appears to have a logical sense about it this doesn't mean it will actually work. So much trial and error with these things.
Re the Lupus analysis - he put it in writing to my GP! He is a connective tissue professor and one of the top Vasculitis experts in the UK so I had to take his word for it but most of my Lupus friends disagree with him completely!
I drink a lot of ginger tea and need strong flavours in food and drink but nothing helps my sense of smell. I miss it terribly - thanks for explaining the way in which Sjogrens can cause this problem. My friend recently saw a Sjogrens doctor about her very severe GI problems. This doctor was very helpful but didn't think that Sjogrens could cause such severe issues as hers. Again - they don't know it all! The best doctors are willing to admit this and back track where necessary I believe. I'm sure my CT professor would if he saw me now. He was very convincing about Lupus though.
I wonder if the failure of the medical profession to acknowledge how devastating Sjogrens can be is actually because, apart from Plaquenil (which worked wonders for me over 18 months but caused Angioderma and painful hives latterly) - they havent found a drug which modifies the drying up process?
X
Many people use Salogen(Pilocarpine) for the dryness. It helps to stimulate some saliva production. It does make you sweat also, but by adjusting the dose you could find a happy medium. There is also a drug called Exovac that many people use also. I have never tried that one. I used to take the Salogen but can't anymore because of its interaction with the drug I use for my myasthenia muscle weakness.
Also, I would not be surprised if all the chest pain that you have could come from the severe dryness in the lungs. This can be really miserable, The lack of moisture in the lungs is devastating. It helps to use a humidifier--which will also relieve the dryness in your sinuses. I also found a facial sauna and it uses distilled water which gets heated. I place my face in this sort of plastic face hood and inhale the steam that is made. It is good for the skin---plus it is great for the lungs and the sinuses. It really makes life better when you are suffering from the severe dryness.
So may doctors don't get it. Hard to believe that in todays medicine they aren't up on this condition. They still think that it is eyes and mouth. People with Sjogrens can also have autoimmune liver disease which causes a lot of GI problems. The gall bladder gets involved also and many people end up having their gall bladder removed. Also, it can cause urinary symptoms. I suffered for years from Trigonitis whidh is an inflammation of the urethra that travels up into the floor of the bladder. This causes scab like tissue on the floor of the bladder and severe back and bladder pain. The urethra has little glands that secrete mucus and this gets inflamed.
The treatment is miserable and I did it a few times. Also, this issue can occur in many women without the pain and they found that antidepressants help diminish the pain. I found that helps plus the use of prednisone stops the inflammation in the severe cases. Doctors treated me like mental case for most of my symptoms over the years but when I finally got diagnosed it all made sense. I have bad autoimmune but managed to have a life anyway. It is amazing how much you can get done when no one tells you that you are really sick.
Most of us on this site just keep going as long as we can as we want to have a life. When we end up giving up our jobs we have not given up on life. We still do what we can cause it is the way we are wired. This stuff hasn't killed us so we just get up and put one foot in front of the other every day. Not always the most exciting life, but it is better to be doing something than to be doing nothing.
Hope this site can answer a lot of your questions. Also, sometimes doctors get an idea or theory and they think it is the answer to worlds problems. They are not always right. I just saw one at a university a cople of weeks aqo and he was mad a me cause I didn't agree. His theory was full of baloney and I did not do any of the follow up testing that he ordered. I called and said thank your but no thanks. Good luck. Irish
Where are you based Irish? I'm in the far north of Scotland. What you say makes a lot of sense to me re lack of moisture production. I find the Shogrens sise of stuff much more alarming than the prospect of synovial joint swelling coming back again. Somehow I don't really fear that kind of fracture pain as much as I fear drying up like an old piece of wood? When my RA was flaring my adrenalin used to kick and I wouldn't allow it to stop me doing what I wanted to do. But this stuff - the total fatigue, the hoarseness and breathlessness, the crusting and nose bleeds, the dry eyes and GI issues and nerve pain and dizziness - I would trade them in for my earlier RA symptoms anyday even if this meant suffered erosive deformities. Basically I'm a visual artist and I don't trust what I can't see. And I have too much I want to achieve to spend this much of my life sleeping or feeling terrible!
I don't tolerate drugs at all - have tried Sulfasalazine, Methotrexate, Hydroxichloraquine, Anitriptyline, Gaberpentin, Cymbalta plus steroids and many others over the past four years. But I'm always willing to give things a go. And like you I won't defer to anyone just because they have a medical degree. It should be teamwork with long term conditions - no doctor gods for me!
I live in the upper Midwest, USA. I am wondering if you have access to much literature on Sjogrens? It sounds like you have not had much info on this disease. That is understandable if your doctor is concentrating on something else. Sjogrens is classified as a connective tissue disease. There is a lot of info on the internet about the disease and doctor by the name of Fox put probably one of the first inclusive info on the web many years ago. He was from California and I have forgotten his first name. I will try and find it.
Also, it is possible that you might be able to tolerate some of those meds if you started out on a lower dose and stayed there for a couple of weeks before raising the milligrams. Also, sometimes a person does just as well on a lower dose. It seems that we Sjogrens patients all have some drug issues. Allergies are very common for us for some reason. I think it is because of the immune/autoimmune/allergy relationship. If you have access to an immunologist it reqaly helps as tney know so much about diseases, allergies, etc. Irish
P.S. I hope others aren't bored by this conversation that got so open ended. Irish
Check out Sjogrens articles by Robert Fox MD., PhD and you will find a lot of good stuff. Just use that phrase as a search and lots of stuff comes up.
I have actually been coming here for a while Irish but with my negative antibodies and Scottish doctors who appear to know little about Sjogrens I kind of gave up and started using an international neurology forum instead.
I am a member of the British Sjogrens Syndrome Association too and have used their helpline several times. The impression that I have is that it's taken less seriously by the medical profession in the UK as a disease in itself than it seems to be in the US. It appears to be thought of mainly as a secondary disease that affects the eyes and mouth. Because my saliva glands are normally productive to date and a specialist dentist told me that all his Sjogrens sufferers have terrible problems with their teeth because of lack of saliva production - I kind of gave up and went towards Vasculitis and other immune mediated neuropathies instead.
The optometrist was also s bit dismissive because, despite my tear break up test showing chronic lack of tears, I have no ulcers or conjunctivitis and these are apparently the hallmark differentiating Sjogrens from Sicca. Mine are just very dry but no blepharitis etc. This can also go with RA and with idiopathic small fiber neuropathy too.
I will ask about Pilocarpine one day but as my mouth isn't dry and as I'm shortly to start Imuran I know my GP will be unwilling to prescribe other drugs until we see how well I tolerate this one.
On the plus side I did comment today on someone's post asking if this could be Vasculitis - telling them about Sjogrens so this new found knowledge is already being put to good use. I have no access to an immunologist presently - this will hopefully change when and if we move to the Scottish mainland later this year.
Irish is a much better resource than I but I can comment on a few things. First though antibody negative my lip biopsy was positive and my teeth are fine. I have a mildly dry mouth, dry eyes but my systemic neuro symptoms are the worst-including gastroparesis. So yes Sjogrens causes GI problems. I was on immuran at one point for my Sjogrens so why not consider it for your RA and probable Sjogrens. I did have to stop it eventually due to low white counts but others tolerate it just fine.
If your skin biopsy shows sf neuropathy then IVIG may be a possibility for that.
Thanks. Yes I am about to try Imuran providing my chest x-ray is clear and my white blood cells are okay next week. I'm actually quite excited about getting back onto an immune suppressant again sad as that may sound!
Because I depend on the NHS I am unlikely to be offered IVIg as it's very expensive and they mostly only offer it to people with demyelinating forms of neuropathy such as MMN, CIDP and Guillaine Barre. If my RA comes back in classic form then I'm told I will be offered one of the anti-tnf drugs - but it hasn't returned in this form for over a year now. Thanks for letting me know that, like myself your mouth and eyes aren't as badly affected as your systemic neuro symptoms. I have given up expecting anything from tests now apart from my high inflammatory markers which I'm told confirm my autoimmunity but that is all. It seems to me that Sjogren's gets a raw end of the deal where the medical profession is concerned - certainly in the UK.
I found this to be a very interesting discussion (and not boring at all).
I just want to mention a few things which may be helpful to you. First, I do have a positive SS-A. I also have a positive lip biopsy. (One thing of interest is that my SS-A was negative in 2012, but was positive in 2013.)
My eyes are very dry and, before I started using Restasis drops, they felt like they had sand in them all of the time. However, I have never had conjunctivitis nor have I ever had any corneal ulcerations.
My nasal passages and sinuses have given me problems for decades. The sinus drainage was thick for decades (it is now thin since I have been using N Acetyl L Cysteine). Plus, I had two sinus surgeries to remove sinus polyps and to widen the nasal passages for better drainage. In addition, I developed a nasal septal perforation from the constant dryness and inflammation.
My mouth is dry, but not nearly as dry as some people on this forum. My teeth are in excellent condition (so far). So, even though many with Sjogren's have very very poor teeth and gums, not everyone with Sjogren's has rotten teeth. I am just pointing out that, just because your teeth are still okay, it does not mean you do not have Sjogren's. In addition, if there is a change in the salivary glands and the the saliva production decreases more markedly, the teeth and gums will deteriorate rapidly too.
I do have some Gastro-Intestinal problems as well with the Sjogren's.
I also have Peripheral Neuropathy (Sensory Polyneuropathy/Ganglionopathy). This mainly affects my feet, ankles, hands, and wrists.
I was not diagnosed with Sjogren's until 2013. However, I have had symptoms of Sjogren's for decades.
In 1993-94 I had Systemic Vasculitis. My current Rheyumatologist says it was almost certainly due to Sjogren's, even though I was not yet diagnosed with Sjogren's. I was extremely ill when I had Systemic Vasculitis. I had severe, overwhelming fatigue, severe chest and jaw pain, shortness of breath. I was off work for 7 months.
The reason I had those symptoms was because the vasculitis caused systemic inflammation of the entire vascular system which caused me to have pericarditis with pericardial effusions (inflammation of the sac around the heart with fluid in the sac around the heart), pleuritis and pleural effusions (inflammation of the sacs around the lungs with fluid in the sacs around the lungs), and hemolytic anemia (anemia due to the red blood cells being killed off).
My Rheumatologist at the time at first thought it MAY be Wegeners but he later decided it was not Wegeners. He tested me for various Auto Immune Diseases. My ANA was elevated as was my sed rate, but no specific tests for specific AI diseases were positive. I was treated with high dose steroids (70 mg a day) for months. Gradually, the symptoms abated and I improved.
I never had a rash with Systemic Vasculitis. Not everyone with vasculitis has a rash.
I have had no recurrence of Systemic Vasculitis since 1993-94.
I hope you can find out what is causing all of your symptoms and get appropriate treatment.
My antibodies for SJS were negative. They did a lip biopsy of the saliva glands and that was positive. It took years for someone to recommend a lip biopsy.... Also my x rays just turned up early RA. It seems like these darn diseases travel together.
I hope you can get some relief and help for your symptoms and condition. Sometimes you gotta get a little pushy with the Drs................. arm yourself with knowledge and ask questions!!!!!
Thanks Deb 27 - sorry you have a similar mix of connective tissue diseases to me it seems. If Imuran doesn't help my painful teeth and jaw or my small fiber neuropathy then I will ask to have a lip biopsy and also ask for my autoantibodies to be rechecked. I think once you have a diagnosed rheumatic disease the doctors stop trying to find the causes of things and just focus on treating the primary disease. I do worry that they put so much focus on joint damage and not very much on nerve damage but I guess, more than anything, I just want some mojo back so I can be an active member of my family and of society again. Rather than a pain ridden, sickly, bed ridden blob! X