Results of lip biopsy

I have heard that it's rare to go into remission with SS.

Actually I had been in remission for a moment so there is hope. I take plaquinil which I didn’t want to do but I think has helped. Remission is very possible with Sjögren s. Just read their support group entries and you will see those that have reported an absence of symptoms. About my last post about lip biopsy, just want to say that for me, I tested 2 times for ss and Ana in blood work so I don’t recommend the mouth biopsy because it, according to my dr is only about 40% accurate. As long as I am treating my symptoms with connective tissue disease, raunalts, Fibro, etc....I don’t need a mouth biopsy. Hope this helps someone regarding me telling of my experience thus far. Sorry about the typos. Eyes. Aren’t doing well today ??

Chris I think some do get remission. But perhaps these people have a very mild Sjögren’s or actually have some other form of autoimmunity instead  - or the Sjögren’s remits and relapses similarly to some forms of MS?

Whatever, I think that it is best not to generalise as Sjögren’s is a different disease for each sufferer. But on the whole it is for life.  If we don’t acknowledge this then it will continue to be the most ignored, underestimated and misunderstood of rheumatic diseases I feel. 

How do you get a diagnosis of connective tissue disease and Fibro?  Certain specialists and/or tests?  Honestly, I think we have the worst doctors around here.  I have all these symptoms, feel terrible, no diagnosis and told to live with it.  My mouth, throat and thick mucus are horrible and hard to deal with 24/7.  And, I am very hoarse and some days can hardly speak.  

Relapsing-remitting is how I think of it. Though the only thing of mine that remotes is the neuropathy, that's a huge thing for me and it sometimes disappears for 6-10 months. Otherwise it's pretty bad but that is the thing that just sets me on edge. Someone else here gets remission on the dryness, maybe she'll pop up.

Ditto for me Aitarg - neuropathy can sometimes remit but it seems to leave more numbness in its wake each time? 

Hi friends again, I think my comments may have been misunderstood tho I was being supportive and and honest. Ss has been hell for me re symptoms and yes, I have tested positive for it twice with bw. Like many of us, we have other ai diagnoses. All I can do is treat my symptoms, communicate as best I can with my dr’s and do my best. My dr’s have been very good I think. Very lucky. I would probably just crawl up in a hole if I had a dr. That didn’t listen to me. I hardly have a mild form of ss in mo byw to address a comment made. Just wanted to give some hope, honest experience with how painful symptoms are. Most times. But in my experience I have had a good month or two. Certainly not symptom free. Just changing symptoms. Right now I’d take debilitating joint pain over no tears, saliva, upset stomach, flu...flem, etc.

I didn’t mean to make you feel bad Chris I promise.

I don’t use this forum much as I’m very aware that it’s viewable to anyone who Google’s Sjögren’s. I realise that it’s a balancing act between frightening newly diagnosed people and being straight of course - and you were trying to be positive.

And I admit I’m just feeling rather negative presently. However I think that we do ourselves and fellow sufferers no favours by speaking of remission with SS - because there are no targeted treatments yet.

And if we want to see progress in terms of diagnosis and treatments then we have to tell the world how it is for some of us, as frankly possible. 

Sorry it’s such a lousy disease for you too. 

Oh Chris you don't want to curse yourself by saying that you would take debilitating joint pain over your other symptoms. I have lived with intractable pain for 13 years and I can assure you I will take my dry mouth, dry eyes and dry nose over this pain any day of the week. At least being dry isn't going to keep me from walking. It is not going to cause me to become dependent on opiates to help relieve some of the agonizing pain I deal with on a daily basis. But I've suffered from all of those symptoms for many years. So I can assure you, you do not want the pain.

Hey there, I think you made a great point, because with ss and other autoimmune diseases you may experience periods of “minor” symptoms but the syndrome can be reaking havoc on your internal organs, pancreas, lungs, brain, heart...I got diagnosed after being hospitalized for pancreatitis. I’m 49 and have had no er visits since I was 10 when I got kicked by a horse....anyhoot, that’s why I decided to take plaquinil. At least I feel it is helping protect my organs. They still don’t know why it works for many....I tease my bf, “well, at least we are treating my rickets”. Ha ha. Google the drug to get, what I hope made anyone reading this laugh. I have a bigger question for all so better get the lap top out. Just been texting;  hence the many errors....

I did have such pain where I couldn’t get off the toilet by myself and all joints hurt and I did have to rely on others and no pain meds were given. It’s all very scary and I am not, respectfully, “cursing myself”. I was writing of my experience. I had to use a

Cane, then a wheelchair and YES it sucked! But then, at least I could still read, swallow, eat solid foods, etc. I guess it’s safe to say. We both have had a different experience with our symptoms. Let’s agree to disagree on this and agree that it is an extremely painful and insidious disease. I do “get” what you are saying, and I hope you understand that in my experience, for me, my eye pain has been the worse. Anyway, I hope you are feeling better now.

I completely get what you are saying Chris. I feel same way about the joint pain and sicca compared to the small fibre neuropathy and autonomic issues. And I feel I’m also in a good position to say this, having initially been misdiagnosed with RA for two years age 46. I tried Methotrexate, Sulfasalazine, Hydroxichloraquine and Azathioprine and Prednisolone. All worked very well for the RA type pain but gave me terrible, life threatening side effects including Anaphylaxis and Pancreatitis.

However all this and more I’d swap for now in exchange for getting rid of the SFN that, after years of excruciating pain, has caused permanent numbness right across my body, plus dysmotility and other autonomic issues. I have punctal plugs and many eye drops plus myobomean gland dysfunction, root canals and every tooth filled from early onset sicca as a child. 

None of us us should attempt to compete with others on disease severity because each of has our own unique presentation of Sjögren’s and our own very personal low points and suffering.

This is why I feel we should avoid talking about remission and not try to soft soap the awfulness of Sjögren’s. Some have it mildly and can continue to function with just eye drops and some extra dental work  - others have it as a multisystem disease.

It has certainly turned my life upside down but there has been some lemonade (sugar free and only occasionally to be enjoyed) to be had out of these lemons! 

I think being undiagnosed is a very unique form of hell Margot - you have my sympathy. 

I agree with you 100%. When I was first diagnosed I was like, “so more dry eyes, and mouth”, big deal, I’ve been having that all my adult life....but it can be so MUCH worse and even life threatening. And I also think it’s important to know that if diagnosed and have mild symptoms at the moment, your major organs can be majorly damaged without your knowledge!!!

I was diagnosed with small fiber neuropathy, idiopathic, of course.  I have not been diagnosed with SS but, reading these forums, I sure seem to fit the bill.  My feet are getting worse. Right foot, on the top and side now too, are killing me.  After over a week of this, made an appt. with the Podiatrist.  He looked at my foot, felt it and said it was arthritis!  Wanted to put me on steroids but I don't want to take that.  I have too many GI issues I deal with.  My PCP says I don't need any more tests and to, basically, live with it.  Between the mouth and throat issues, the back pain, the feet and trying to keep my stomach under control, it is a struggle deal with this 24/7.  To look at me, I don't appear sick so it is hard to convince anyone I feel like crap!  When I saw a neurologist at Stanford, he did blood work and some light chains (?) were elevated so he referred me to a Hemotologist.  I guess there is a chance you can develop Myeloma.  Now, I have to go every 6 months for bloodwork and have bone X-rays done yearly.  No doctor, out of the numerous ones I have seen, look at all these symptoms collectively.  I get it.  It is damn depressing!!

Have you had your autoabtibody panel checked yet - that’s ANA and RF, ENA/ SSA &B? You really should push to see a rheumatologist. Keep pressing for answers! X

Thank you.  I am wondering what type of doctors you are all going to.  Are they Specialists?  How are some of these conditions being diagnosed?  All my blood work has preset much been normal.  I asked that my B12 and B6 be checked and both were low.  I started B12 but have no improvement in my neuropathy.  I am a little afraid to take the B6.  Anyone here take B6?  I just went through about $13,000 of dental work, insurance won't pay, as my top teeth and two bridges were loose as a result of the dry mouth and receding gums.  Cannot wear a denture with dry mouth!  Take care of your teeth!  Use floss daily.  Ask your dentist for Prevident for Dry Mouth.  Wish someone had told me these thing long ago.

I’m in UK and see a rheumatologist and neurologist and a vascular doctor who shares the connective tissue disease clinic in my local hospital. I suppose I was lucky that I initially presented with RA and my inflammation levels were high and my Rheumatoid Factor was positive so my GP referred me straight to the rheumatologist. This was 2011. But I knew I’d been misdiagnosed and pushed hard as the neuropathy worsened. I relocated and was referred to new hospital had positive ANA and lip biopsy 100% positive last year. You probably live in the US from what you’re saying so I can’t advise on how it all works there as it is very different.  

Chris apparently I hit a nerve and I apologize for my comment that offended you. That was never my intent.

Hi there.  Am wondering how you are doing. I was just re reading my posts and wanted to say hello.😀