Hi guys. Just want to say that I'm disappointed in my rhuemy. I've been ill for 3 years and only true evidentiary my elevated inflammatory markers. Edd rate is 49 and the other test is 4....my dr still can't diagnose me. But she won't do the lip biopsy because she thinks the blood test is enough...my gland on my face by my jaw and chin hurt My sinuses feel dry and inflamed. I'm itching a lot off and on tendinitis on my shoulder but most of all around my left side of my chest hurts a lot around my breast and tingling hands and arms. It sucks! Just not sure what else to do
'it is your decision all I can do is give you facts .Some 40-50% are sero negative to current blood tests and 10-20% lip biopsy negative. Just because you don't have markers doesn't mean you don't have SS. Conversely just because one has Ro/La anti bodies doesn't mean you have SS as SLE also shows these markers. Most rheums are pretty clueless out of date and don't understand SS and immunology sadly. I know MANY who are -ve to all test but have severe clinical symtoms of SS - me included
I'm ANA positive and was misdiagnosed with RA 6 years ago. Turns out I have had primary Sjogren's instead. Two rheumies failed to pick up on this because of negative bloods but the 3rd identified Sjogren's because my ANA swung positive once I was off all RA drugs and steroids. I was advised to have lip biopsy because of history, bloods and symptoms and this came back 100% positive so I'm now on a fifth immunesuppressant and at last being treated for the right disease. Your symptoms could be due to other types of seronegative autoimmunity so please keep pushing for answers.
At present it doesn't matter as the treatment (lack of more accurately) for all AI in this group is the same in mosts cases plaquenil prednsiolone for flares and methotrexate if this doesn't work. At least in the UK that's all the "treatment" offered. Plus palliatives like eye drops
I've tried Sulfasalazine, Methotrexate, Hydroxichloraquine, Azathioprine and now Mycophenolate. I had severe reactions to all apart from Mycophenolate which I'm doing well on. It depends how severely you are affected. My Sjogren's affects my peripheral and autonomic nervous system and my liver and kidneys so it is taken very seriously now despite being serum negative. My secondary Raynauds is problematic and my ANA pattern points more to Scleroderma (which I don't yet have). And yet, it wasn't for the lip biopsy result, I would still be untreated.
Hi Jasflower,
if your doctor isn't treating you for Sjogrens because of negative blood tests, then you should insist for a lip biopsy. I only had a positive ANA which my doctors daidcthis test tells them something is going on but not what. Fortunately ny rheumy was good and said there was one more test he'd like to do and it was a lip biopsy. That came crack extremely indicative for Sjogrens. Is she treating you for it? If not, change doctor's,
it seems that people have a real hard time getting diagnosed, and sometimes treatments vary depending on what's going on. I had one muscle neurological tell me basically I was making my symptoms up, because they are subjective (only I can feel them) and that I was trying to get out of work! I left her office in tears of frustration, and found a neurological who diagnosed me with CNS involvement of my Sjogrens. Thank God he listened and took me seriously! I'm on mycophenolate also plus Plaquenil and did well for about 10-15 years, except I'm having a flair with peripheral neuropathy, difficulty urinating and muscle weakness. Try and get the lip biopsy.
Hi Just wondering about the ana pattern pointing to scleroderma?
Has the dr done any tests re to the peripheral neuropathy, muscle weakness and difficulty urinating? Have you got any saddle numbness?
Sorry about the questions. xx
Yes thanks for your response I am going to push for a lip biopsy ! Hopefully I get some answers! Since I'm really starting to suffer now
Yes, he did a special muscle biopsy on my legs which were normal, but the neuropathy was just beginning. He sent ne to urologist who suggested physical therapy to learn how to relax bladder muscles. ( I passed on that) otherwise she was no hep, and he increased my nerontin to double and mirapex to double. I try not to take all that Mirapex because I feel dizzy in the morning if I take it all. My rheumy increased my Cellcept or mycophenolate substantially to try and stop this. As I type this my left foot , leg and hip are killings me..so hard to get exercise when you hurt so much.
My ANA was necleolar pattern 1:320 but I don't have Scleroderma yet, although I do have secondary Raynauds. I've had normal skin biopsy over two years ago and normal nerve conduction studies/ EMG etc but my neurologist is happy to confirm I do have SFN anyway and it's definitely progressed. She calls the autonomic dysfunction Ganglionopathy and is happy to presume this too because of my extremely positive lip biopsy results.
There is no cure either way they mange the symptoms,
I agree. That's why I've so far avoided taking DMARDs or immunosuppressants. I'd rather manage my symptoms conservatively until such time as I need the big guns. And as I'm 73 and already 22 years on from the start of my symptoms (though, typically, only 12 years on from diagnosis!) I'm hoping that day won't come. That's also why I refused a lip biopsy when it was offered 10 years ago. The procedure isn't entirely without the risk of irreversible peripheral nerve damage, the results can be equivocal, and I figured there was no point going through it if I wasn't going to take any of the drugs on offer anyway.
Admittedly I've been lucky. I've had no serious organ damage as far as I know, apart from the inevitable attack on my thyroid, common to many autoimmune diseases, and, more recently, the first signs of inflammatory damage to my lungs. The thyroid deficiency is easily corrected by taking thyroxine, and use of a steroid inhaler for the past year or so has dramatically improved my lung capacity. The tendinitis is a real pain at the moment (in all senses!) particularly as it's now spread from my arms to one leg as well. However, I find I can keep it under some kind of control with cold compresses, regular gentle exercise and an occasional dose of ibuprofen if it's keeping me awake at night. The Raynaud's comes and goes in my left hand, but is only at nuisance levels, ditto the peripheral neuropathy in my hands and feet. I can also keep joint pain at bay for the most part by taking fish oil and glucosamine. I know the latter has been largely discredited but my GP says no harm in continuing. Oh, and I've just discovered some marvellous new OTC eye drops that are working wonders on the dry eyes!
Obviously those who have developed the more life-threatening consequences of Sjogren's (and especially of the much more serious scleroderma) will need more powerful treatments. I fell on my feet after a house move four years ago, when I found a new GP who seems to know more about autoimmune conditions than the rheumatologist I saw - and most others I've heard about. I've discussed this at length with him and he says that as long as I treat any newly-emerging symptoms as they arise (e.g. the recent lung inflammation) he sees no advantage in going on to more aggressive drugs.
I have to ask, are you in England or the U.S.? The reason I ask is I'm in the U.S. And I would just get another doctors opinion, are you not able to do that where you live? My blood tests are marginal but my symptoms are so severe that my dr. had no difficulty in diagnosing Sjögren's. She put me on a gluten free diet and plaqinel, both of which helped. It's still a difficult disease, but am dealing with it.
Hi. Yes I'm from Torrance ca. And I have pretty good insurance but your right I should get a second opinion it sucks because the dr I'm seeing now is supposed to be the best in my area I'm now trying to figure out who to see next
Wow you seem very bright! I have a great RA Doc. Extremly thourough, maybe too thorough .I'm doing acuounture for some issues i have And praying for the best. They sat me down and explained its a manging symptoms kind of thing until you cant manage them and many can. It functions in degrees like anything else. I use refresh and systeane drops if you have better ones please feel free to message me. My eye dic said he is watching that as i have eye issues and if needed would give me restaisi.
Lily I take issue with you that Scleroderma is a much more serious disease. All these diseases are equally potentially serious if you have them badly. For some there is crossover and I think Sjögren's can me far more destructive than you realise - a bit of numbness here or there when you are in your 70s is one thing but if you are in your 30s or even, like me, in your 50s and have severe and painful neuropathy or get Lymphoma then there are years ahead of dealing with a multisystem body-wide autoimmune disease - same as Lupus, RA and Scleroderma. I'm really keen for this attitude of Sjögren's being a less serious disease stopping now. Some have mild RA, Lupus and Scleroderma and some have severe Sjögren's.
Well said mam - Sjogrens is a very serious disease has an elevated death rate reduced life expectancy of 50% post onset increased lyphoma risk and is life destroying for some like me who have is severely. It is a systemic disease and NOT JUST DRY eyes and mouth although god knows they are debilitating enough . All AI have ranges of patient experinces and in terms of "seriousness actaully SLE and SS are closely related and 2 of the more "dangerous" diseases as they impact the whole body and neither have effective treatments and both often lead to other AI like RA
Hi Jasflower.
I'm sorry you are not feeling well. It's a bummer that these things aren't more well-defined, but I don't know what a lip biopsy, or for that matter a positive diagnosis, would do for you. If your diagnosis were definitely Sjogrens as proven with a positive biopsy, what would you do differently? Probably nothing. On the other hand, lip biopsies sometimes produce false negative results.
My current rheumatolotist and the one I went to before both say they no longer order lip biopsies because they are painful and don't prove anything. Eventually, I had a positive SSB test, so my diagnosis of Sjogren's was confirmed. But since there is no cure for Sjogren's, I continue to live with the dryness, the aches and pains, and the swollen glands. I am still on the Plaquenil I have been using for several years, and that helps.
I hope you will use your energy to look for ways to feel better and stay as positive as possible. Good luck.
Kathy
Hey, Jasflower, I just replied to you, having not seen the other posts. Then I saw them, and you've gotten a lot of good advice. But you say you are in Torrance! I'm in Rolling Hills Estates, a neighboring town. Tell me who your rheumy is, and I can give you a suggestion for a doctor to give you a second opinion.