Hi everyone
Found this site yesterday so hoping for some advice if that is OK?
I initially had a raised ANA and CRP, which are now down to normal, but due to no tear production, was referred to an eye specialist who straight away said 'Sjogrens', my rheumy suspected it but said bloods were negative so just to wait and see (he had already dx Fibro), the eye doctor said he has seen lupus and sjogrens with negative bloods and to speak to the rheumy again. I had my punctal plugs put in - just two so far, going to have the other side of my eyes done in two weeks, that has made a big difference.
Then last week I went to the dentist who said my salivary glands were not working and i had started to develop cavities - not happy as I have always had nice teeth but he is going to see me every 3 months to keep an eye on me.
The rheumy called me yesterday as I had to give him an update on stuff and he has diagnosed sero negative sjogrens, I have to be blood tested every 4 months and he reckons it will show up eventually.
So the eyes are being managed, the teeth are hopefully going to be managed, but the dry throat - sometimes when I try to talk or swallow, I feel like I am choking - is that normal? it is so scary. When I breath in my lungs feel dry, but that could be my imagination, and my sinuses are bad.
My finger joints are really painful and if I walk too much I am so stiff, especially in the morning, I tried Celebrex as a painkiller but it brought on my asthma. So now I just take Mersyndol night strength as I cant take NSAIDS.
The rheumy has written to my GP to ask him to start me on Plaquenil and a short course of steroids, he has been pretty good actually, the first rheumy I saw made out as though I was making it up - whoever would have thought it would be so hard to get a diagnosis.
Have many of you taken Plaquenil before? I am going to give it a go as I get so tired and my joints hurt, if I go out in the sun that makes it even worse.
Although I am glad to have a name for this illness, I woke up this morning feeling quite scared - where to now? what does it all mean, how serious is it? You know the kind of questions.
I had bronchitis a few months ago, I never get bronchitis, never had it in my life and now I am getting stuff like that - but one thing, I was on steroids and my pain vanished, so although I hate steroids with a passion from previous treatments, I am looking forward to not hurting.
Thanks for reading everyone, sorry its a bit garbled, my eyes are so blurry in the morning - I can barely read this back.
Corella.
I have sjogrens. My first positive ANA was in 1989. Recently, my ANA was 1:1280 but the antibodies for sjogrens were negative. However, my rehumy said that there is a large percentage of people with sjogrens who never have positive sjogrens antibodies. He did not recommend me having a biopsy as he is 95% sure, based on symptoms, that I do have sjogrens.
I have so much trouble with my eyes. They get so dry that the lids stick to the cornea and pull pieces of it off. The only way I get relief is to use restasis twice a day, systane balance four times a day, and genteal gel at night. I have been using restasis for 7 yrs now. I tried the punctal plugs and they did nothing for me.
The dry mouth, throat, nasal passages are another problem. I recently bought some lozgens with Xylitol that I use at night. They have a kinda rough side that sticks to the inside of your cheek so you don't swallow or choke on them. My dentist told me to chew gum and use products (like biotene) that have xylitol in them to reduce the chances of cavities. My dentist also put me on a prescription strength nightly flouride treatment.
As for the nasal passages, I am using a prescription ointment from an ENT. It also helps a lot.
Don't think there is much more you can do. Guess if it gets bad enough - there might be more drastic treatments.
Hope this helps a little.
Thank yo so much for replying.
the dry throat/airways is awful, you think because you have a bit of saliva that you are not dry then you try and talk and its like you are choking. :(
I love my plugs, he is going to put two more in - my eyes are still dry but it makes a difference. Do you get a rash on your cheeks if you go out in the sun? I do and its awful, it comes and goes.
Yep. I've had the rash for years. I've been diagnosed with roseacea in the past but not sure that's what it is. Me and the sun do not get along at all.
My Dr. is continuing to test me also for Lupus. He said I tested negative so far but that doesn't mean I don't have it because Lupus can go into remission and it's sometimes hard to get a definite diagnosis.
Glad the plugs are helping. Mine felt better for a few days but would not stay in. They just went on through. Tried 4 different pairs.
He has offered to cauterise them in if they fall out, I will ask him to do that anyway that way I dont have to worry. Its an expensive business though $400 AUD for two plugs.
The symptoms seem to be very similar to Lupus, I wonder if Sjogrens can affect your kidneys like lupus? My GFR kidney results were only mildly reduced.
My appetite isnt brilliant either but the hardest thing for me is drinking water, I have never been a big water drinker at all, rarely feel thirsty and now I have no choice and its so hard to drink the required amount. I do believe I wont be able to drink alcohol on the plaquenil anyway, so I guess that is a good thing. (well not really but whatever is best!)
Hi,
It's awful having to deal with these symptoms, but I'm sero-neg too and my problems are made so much worse by my doctors not believing in sero-neg Sjogrens and therefore denying me treatment. I know you probably don't feel it, but I think you're really lucky to be taken seriously by your doc.
I wish you moist eyes, a comfortable mouth, well-oiled joints and bags of energy!
Suzie
Oh the first Rheumy said 'fibro and you need to go to the gym and work through the pain'
The second Rheumy - my current one, said 'its sleep deprivation, I recommend a sleep study' now dont get me wrong, he is a nice man, but it was only when the eye specialist and the dentist both said 'sjogrens' that he said he agreed, in his favour he did say I could develop sjogrens symptoms in years to come.
I do feel lucky to start treatment though but one thing I am totally horrified at is being dry 'down below' - what is that all about??? I can cope with dry lungs and stuff but a dry beaver is not my idea of fun.
I am nervous of taking plaquenil - but I will give it a good go.
Sorry to hear your doc doesnt believe in Sero neg, is it an option to change Rheumy's? I had a 4 month wait list to see an urgent private one in Perth, its shocking.
:(
Corella it's not that bad but it does affect that down there. there are days that you never notice it then there are days you wished you never did it. just keep some lubricant close in case. you will be fine. i dono how old you are but i didn't have issues till these last 2 yrs I'm 41. but it's not that bad really. I don't like it much either but hubby is away a lot so it don't bother me as much. kinda like if ya don't use it ya don't miss it..... hope i didn't offend anyone wasn't meant to but i have a tendency to say whats on my mind..
Welcome Corella,
You're in the right place, as far as I'm concerned.
It would help if you listed diagnoses, symptoms, and medications. It's in the signature line (you can see mine).
Are you taking anything for saliva production? Evoxac, Salagen (and pilocarpine which is the generic Salagen) are the drugs for saliva production. I couldn't survive without it.
Think about having a humidifier in your room.
I use a saline nasal spray, too, to help my nasal passages since they are so dry.
I use Simply Saline morning and night. Also RX Nasonex to reduce the post nasal drip which is so thick and blocks my nose at night. That makes me breathe through my mouth which turns it to sandpaper.
I used eye spray at night when I get up to pee. I have interstitial cystitis (IC) which is an inflammatory condition of my bladder (goes with Sjogren's very often).
Of course I drink a lot for the dryness and pee a lot because my bladder is irritable. Take about a vicious cycle!
I have NEVER ever tested positive for any autoimmune condition, Corella.
So my dryness is called Sicca, which is Latin for 'Dry'.
There aren't a lot of drugs for Sjogren's and the ones there (Plaquinel, which is a drug for malaria, and chemotherapy drugs like Methotrexate) don't stop the condition or cure it. But they do help for many. Also Prednisone, which will stop any sort of inflammation, and therefore the pain and misery that goes with it, but doesn't cure anything either. They are necessary and gratefully taken by many sufferers. But they have their own set of side effects, of course.
Hang in there, and look for all the tips and ideas you'll get here.
Many of us are sero-negative, or as I like to say 'sero-normal'. :P
Again, welcome.
Keep us posted.
Hugs.
Elaine
Hi Corella,
Let me Welcome you to Sjogren's World! ;)
You've come to the right place for advice, support, encouragement and knowledge. There's loads of information here and many wonderful and caring people.
Carolina gave some great tips, and you might want to ask your Rheumy about meds for saliva production.
That said, I can tell you there is life after diagnosis. :) Now you know why you have all these symptoms, and are taking action. Thank goodness you found a good Rheumy and have a proactive dentist and eye doctor. Those 3 can work together to help you!
I have no blood work to support my Sjogren's diagnosis, either. My first Rheumy told me the same: just Fibro. and to get exercise. I wondered how I could do that when I could hardly move. So why were my eyes so dry, joints hurt, cavities, and sinus and gland infections? It took my eye doc and a good PCP to figure it out.
Plaquenil and a short course of steroids should help a lot. That's a common and very helpful start.
I think many of us when first diagnosed feel relieved we know what it is, then some fear sets in, just as you say. We all wonder what we happen, where does this lead? It can be frightening.
We learn to take one day at a time. With treatment you should feel much better. You may never have any other symptoms than you do now, and they can be managed.
Remember you are not alone. We will be with you on your journey, and we care. Ask anything you like, and keep posting. We're kind of like family around here.
Take care and we look forward to hearing more from you.
Melinda
Hi Corella :)
Welcome to Sjogren's world. I was dxd with SjS in 2004 but this year I've been told I don't have it because of negative bloodwork. My new rheumy wrote to my GP, however, and said the the dx criteria has changed since 2004 which is why I prolly got a dx then. I was prescribed Plaquenil and I have found it helps and the rheumy recommends that I stay on it, use eye drops and also saliva inducing pastilles that have been prescribed. He also intends to see me once a year and more often if things flare up.
He suggested that without the bloodwork it is not Primary Sjogren's but SjS symptoms secondary to something else. He said there is too much doctors just don't know yet.
I hope you find the site useful.
Take care - Scottie :)
Thank you all so much for your replies, they mean a lot.
The symptoms I have had and still have are so odd, I shall list them and hope you dont think me too mad as some of them dont make sense.
1. Dizziness - it is odd as it is when I am in bed, early hours of the morning and my head feels tight, I often get a tingly feeling down one side of my face.
2. Heavy/exceptionally weak feeling - this is awful and again is early hours of the morning, as though my body is so heavy and weak that there is nothing to support it.
3. Finger joint pains - tight pains on my finger joints and now my feet - my feet really hurt on the bone on the sides.
4. Stiff joints - first thing in the morning it takes me ages to loosen up.
5. Brain fog - what is that all about? my short term memory is awful.
6. Dryness - I am 44, but told I am not in the menopause, but my lungs/mouth/eyes/nose are so dry and frequently down below. I get sharp pains in my lungs when I take a deep breath in sometimes.
7. Irregular heart beat or missed heartbeats that never show up when a doctor listens to my heart.
8. Reaction to vaccines and insect bites - if I am bitten by a mozzie or any insect the area swells up and the redness spreads a good 6 inches either side.
9. Tiredness - that lead blanket feeling.
10. Hair loss - my hair has gone dry/brittle and I lose heaps in the shower - thyroid came back normal.
11. My nails have developed ridges on them which looks awful
12. Metallic/salty taste in mouth.
13. Total intolerance to the sun - I will pay for any sun exposure for days after - sick/dizzy/tired
These symptoms make me sound like a right hypochondriac but I am not, honestly.
My vitamin D levels are very low, I cannot sustain them - I have to be tested twice a year and take supplements, I also take Omega 3 fish oils - two capsules a day and Biotin for my hair/nails and a Calcium tablet as well as my joints are very crackly and stiff.
When I go to the gym, I can barely walk the next day.
For my eyes I use Polytears during the day or Systane Ultra and at night I use Viscotears which are quite good, I get the next set of plugs put in soon.
In two weeks I start the Plaquenil and a course of dexamethasone as I am intolerant to preds - they make me quite aggressive, awful drug and I am a bit better on Dex.
I feel quite down today actually, I keep getting paranoid my husband will get fed up with it all - do any of you feel like that ever?
Thanks again for taking the time to reply.
Corella: I feel quite down today actually, I keep getting paranoid my husband will get fed up with it all - do any of you feel like that ever?
Nara: oh h*LL yes!!! I was talking to hubby on the phone this afternoon and I said, "I want to ask you something."
He said, "okay, shoot."
"I'm trying to find out what's going on with me and I'm really trying to fight the fatigue and the pain and I know it doesn't always work out like I want it. I'm afraid you're going to leave me. Are you getting tired of all this?"
(now please realize this man is constantly trying to make me laugh and his sense of humor can be weird but don't make anything more out of it than just him trying to be funny.)
He said, "H*LL yeah I'm getting tired of it!!" I giggled and he said, "where would I go?"
I said, "you could go back to your ex-wife (who would still take him back for some reason)."
He said, "I'd rather jump off a bridge! Seriously, that's not an option. And who else would put up with my dancing and my farts?? I still think I could be a strong contender on Dancing With The Stars ya know! Well if I could just not fart ever time I walk."
I couldn't help but bust a gut laughing!
He said, "I know you're trying. It's not your fault this is happening." And the discussion was over.
I say talk to your husband and tell him your concerns and fears. See if you can get him to open up about his.
I was looking at the the "I'm thankful for..." thread early and was having a hard time coming up with something cuz this pain is just so durn intrusive. But I think I just figured out what I'm really thankful for. Sometimes I don't feel like I deserve him but I'm so glad he loves me!
Corella, you total sweetheart, YOU AREN'T NUTS AT ALL!
You describe symptoms that most of us have at one time or another and are Sjogren's symptoms, as well as symptoms of most auto-immune illnesses.
As lucky, lucky Scottie's amazing doctor told her, "there's too much doctor's just don't know yet". Scottie, you should have that engraved on a brass plaque along with the date and location of when an actual medical doctor admitted such a thing!
I went to see a Prof of Rheumatoogy on Sunday, and for once my appointment co-incided with a dreadful flare up of my dizzy-vertigo-stomach achy-pukey-joint pain-headache-desert dry eyes-weakness and very yellow complexion episodes. Usually I have to go when I look all pink and healthy.
Anyhow, since he does research and publishes (didn't get to be a professor for nothing) he was wonderful to me. Fascinated by by symptoms, disease progression and normal blood work. Said I was obviously sick and suffering and doctors were generally full of crap and scared by what they don't know (yep, that's getting etched in bronze for my wall right now).
He thinks my immune system is attacking my Autonomic Nervous System. He said it's hard to catch in regular rhuemy tests. He's going to do a CD4:CD8 blood test, which is a type of white blood cell test they do on AIDS patients. In them, levels are very low. He reckons mine will be very high.
We'll see. If my levels are high, he'll need to give me a chemotherapy drug to knock them down. Kinda scary idea, but at this point I'LL TRY ANYTHING.
My husband is totally fed up with this situation, but what can we do to change things? When I'm feeling less awful, I lavish love and attention on him. It has to do.
Suzie
I am sero negative also, but just lucky that I HAD a good primary doctor that believed I needed treatment with a Rheumatologist asap! My Ophtamologist told me right off the bat he thought I has Sjogrens from my Shirmer test. I just wished Venus Williams would step up to the plate and make some PSA about the disease. People don't understand how debilitating this disease is!
Thanks everyone. I guess I am feeling sorry for myself in this initial early stage- I cannot stand the thought of losing my teeth, and cant believe I am getting cavities. Mind you, being dry 'down below' doesnt sound like a picnic either. :o
I wonder if this will show up in bloods at some point if I am being tested every 4 months?
I am off to see the Queen tomorrow in Perth, so that is something I am looking forward to - will dose up on painkillers I reckon, smother myself in suncream and take the camera.
I'm seronegative as well. But every cause has been ruled out other than Sjogren's. And none of the docs can explain what could be causing the symptoms other than Sjogren's.
I think alot of docs rely too much on bloodwork and ignore the symptoms. Back in the day, they only had symptoms to go by. But bloodwork isn't always accurate.
Also, there are alot of conditions out there where there are no tests for. You have to go by symptoms and rule out other things. Like with Irritable Bowel Syndrome.
Well today I started to add to my 'sjogrens kit', bought some Biotene spray for my mouth, some sugar free gum - the chemist said that is as good as anything, although I hate chewing gum but needs must I guess, I bought some Panadol Osteo as I have heard that is good for pain and I take painkillers with calmative at night - Mersyndol Night strength, I have my mouthwash for bedtime, a selection of eye drops.
Thats it till I start the dexamethasone and the plaquenil - the plaquenil will cost me $35AUD for 200 tablets, it all adds up with the supplements as you all know but, I have gotten used to my 'vitamin supper' :D
On a lighter note, I went into Perth today and managed to get a glimpse of the Queen, I was so excited - I love all that ceremonial stuff and the atmosphere was fab.
I have been a bit down since diagnosis and getting out really cheered me up, although the sun has made me hurt a bit but it was worth it.
Thanks for all your replies, I dont feel so alone now.
Hi Corella
I just wanted to welcome a fellow Aussie,I noticed that you are in Perth I am in Brisbane, I am so pleased that you enjoyed your visit with the Queen It was really lovely to see her here again.
I was diagnosed in 2008 with positive bloods and was fine up until 12 months ago when it took a turn for the worse. I started plaquenil 4 weeks ago my specialist has me at the moment going through a heap of tests as in a MRI brain EEG all new blood workup. he feels that it might be affecting my brain and causing me to have mild seizures anyway i am back to see him in a couple of weeks time for the results. But that's enough about me.
It looks as if you have been having a pretty rough time of it yourself, anyone that has any sort of an idea about this condition will know that you are not a hypochondriac, so please don't allow yourself to feel that way as here are heaps of people suffering from the same condition so we all can't be hypochondriac's.
I can remember when i was first told that i had Sjrogens I didn't take it very well , its only understandable that there will be a lot of mixed emotions because it is very scary.
You will find heaps of understanding, friendly and very knowledgeable people here don't be afraid to ask questions.
Again welcome and take care,
Cheryl
Hi Cheryl, you are in Brissie - nice to know someone in the same country, we get citizenship in March, cant wait.
Can I ask, do you react badly to insect bites? I was in hospital a couple of years ago with a mozzie bite, just been round a friends this evening and have bites on my left foot and right ankle, they are burning, hot, red and really swollen - I seem to react to insect bites and dont if it is an auto immune thing or not but just lately as soon as I am bitten I start to react and for the first time tonight, I started to wheeze as well.
I am at home with my feet up with SOOV insect cream on and I have taken anti histamines but I dont feel good at all, I was just wondering if anyone else reacts to insects and stuff.
I took my panadol osteo this arvo and was quite impressed, so that is something.
I wish my bloods were positive, I have waited a while to get diagnosed well i say a while, since March this year which isnt that long I guess, and I have read about people seeing a different Rheumy and being told they dont have it, I suppose I am lucky my Rheumy has taken the word of my dentist and eye specialist.
Oh well with summer on its way, looks like I will have to get hats and lots of sunscreen, god knows how the sun affects me but it does. But I will just buy different clothes and do what I have to.
:)
Hi Corella,
Let me also welcome you to the SJS World and family!
I too hope that you find this board as wonderful and helpful as I have.
Take care of yourself -
Patze
Welcome,, Sereo negative here too,, but everything has been ruled out for me also,, shame it takes so long to get a Dx,, lot of times we just get that,, are you depressed?,, everything ok at home?,, no,, we are sick,, glad you saw the queen, I saw John Kennedy when I was a kid,, I stilll rememebr that,, I swear he waved at me,, few months later he was dead
Quote from: Still in the hunt on October 29, 2011, 06:20:04 AM
Welcome,, Sereo negative here too,, but everything has been ruled out for me also,, shame it takes so long to get a Dx,, lot of times we just get that,, are you depressed?,, everything ok at home?,, no,, we are sick,, glad you saw the queen, I saw John Kennedy when I was a kid,, I stilll rememebr that,, I swear he waved at me,, few months later he was dead
I wanted to post a piccie on here but I dont think I can.
My foot and ankle are so swollen from the mozzie bite, I cant walk now - thats a pain reacting like that.
Yep, the depression diagnosis gets thrown around quite a lot, funny how they can pin a diagnosis that has no obvious symptoms such as depression as it isnt always apparent, yet Sjogrens/Lupus which has obvious symptoms can so easily be dismissed.
You will think I am sad but I am counting down the hours till pain relief time (cant help it)
You were lucky to see JFK, I wish I could say the Queen waived at me (well I can pretend she did.)
Quote from: Corella on October 29, 2011, 07:05:43 AM
Quote from: Still in the hunt on October 29, 2011, 06:20:04 AM
Welcome,, Sereo negative here too,, but everything has been ruled out for me also,, shame it takes so long to get a Dx,, lot of times we just get that,, are you depressed?,, everything ok at home?,, no,, we are sick,, glad you saw the queen, I saw John Kennedy when I was a kid,, I stilll rememebr that,, I swear he waved at me,, few months later he was dead
I wanted to post a piccie on here but I dont think I can.
My foot and ankle are so swollen from the mozzie bite, I cant walk now - thats a pain reacting like that.
Yep, the depression diagnosis gets thrown around quite a lot, funny how they can pin a diagnosis that has no obvious symptoms such as depression as it isnt always apparent, yet Sjogrens/Lupus which has obvious symptoms can so easily be dismissed.
You will think I am sad but I am counting down the hours till pain relief time (cant help it)
You were lucky to see JFK, I wish I could say the Queen waived at me (well I can pretend she did.)
Hi Corella and welcome. That sure does sound like what we southerners (I'm from Texas) skeeter syndrome. An allergy to mosquito bites is not really surprising with AIs. Long sleeves, long pants, and socks are my norm even during the summer. As well as spraying repellant all over my clothes and exposed parts. I use a hydrocortisone cream and benedryl whenever one of those little buggers gets a bite through. SOMEHOW this summer, in one evening, I got SIX of them on my left foot and two on my right shin. I covered, I sprayed and yet they got through. That was like back in august and they're just now starting to disappear. I hope you get relief soon!!
Hi from another sero negative person :D
I also have terrible reactions to insect bites. I can remember, as a small child (pre school) have bandages and cream from my ankles to my thighs on both legs, where I had spherical blisters. They were insect bite reactions.
Since being on plaquenil, the past couple of years, I no longer have such a bad reaction, my symptoms are also greatly reduced, too. Hope you find something that works for you, too. xx
Oh my goodness, this morning my ankle is enormous - there is no shape, it looks like I have 'cankles' and my left foots is so swollen I cant put it down so I am on the sofa with an ice pack on it.
I am due to start the plaquenil in two weeks but I might wait till after my college graduation party on 25 November as I would like to have a couple of drinks and I hear you cant drink on them.
My reaction to insect bites is getting worse with each one, I wonder what happens in the body to cause such a thing. Oh well, just call me 'elephant feet' today.
Hi Corella,
Can't say that i suffer from insect bites, but it dose sound as if you have a bad allergy to them have you tried palarmine?
If they are swelling that much it might mean a trip to the doctor. I don't know about other people but i have had the very odd glass of wine, while taking plaquenil I did tell my that i do have the occasional drink and he didn't say not to.
I just had a look and there is a thread here re; wine and plaquenil that you might like to have a look at.
Look after those feet
Cheryl
Dear Corella, and others on this thread
It was only this year (2011) that I told my PCP that I probably had Sjögrens, and had made an appointment with the Sjögrens Syndrome Center. He already was aware of the flare that started around the beginning of September, and called up a basic panel of tests to run when Sjögrens is suspected. He is not the sort of doctor to take general dysphoric (feeling bad) symptoms seriously, but he was willing to order the tests. He did say ´It can´t be Sjögrens. Sjögrens patients are thin,´ something I am not.
My tests came back barely positive for Sjögrens, ANA and SSA, otherwise rheumatologically unremarkable. There are some anomalous tests I will have to look up, but color me outside of the impressive test results for Sjögrens.
Yet, in 1996 I first suspected Sjögrens when I went to a dentist in November, had a few xrays, the dentist filled a couple of small cavities, and sold me on teeth whitening. Five months later I went to a different dentist. She took xrays and told me my teeth were riddled with decay, and I would have to have a complete mouth reconstruction, which she could not do. I knew there was a disease that involved dry mouth and dry eyes, maybe the dry skin I have had since birth. It was just that so far as I knew, there was no treatment for it, except as the reconstructive dentist I found two years later mentioned, there was Biotene.
By that time, after a long long search for dental treatment and care, I found a good man who could deal with my small mouth, and my tendency to bleed too much. So he took out all my top teeth, and built me the denture to replace them. He also did root canal on my lower teeth.
By then it was 1999, and Pilocarpine -- Salagen -- was on the market as a treatment for lack of saliva. This wonderful dentist FAILED TO TELL ME about Salagen, as a stimulant for saliva. This wonderful dentist FAILED TO TELL ME that saliva was the way the body protected teeth. So I felt terrible, guilty, because all my life I had had teeth with few cavities, and now suddenly they were disintegrating.
Four years later, I was back to see him again, because now my lower teeth were disintegrating. He managed with heroic efforts to salvage five or six teeth in the front of my mouth that would support a lower denture.
By then I had a dx of Fibromyalgia, and a PCP who insisted that I exercise, as a treatment for not wanting to exercise. BUT she believed that Fibromyalgia was a real disease, which counted for something.
I did not have a Sjögrens dx, because I thought, erroneously, that there was nothing but some OTC aids like eyedrops and Biotene, which I had tried but which did not work for me. So what good would a dx be?
If you think you have test negative Sjögrens, do as Corella's dentist recommended, and have checkups every three months. See if a friendly dentist or doctor will prescribe Salagen or another saliva stimulant (not Biotene). Don't blow it off, or postpone those dental visits. Remember my sad tale. It took only five months for my mouth to decay irreperably. Now those five lower teeth that were herocally salvaged have not decayed, but the anchor teeth have been resorbed by my body, perhaps for their calcium content.
Even now, the Sjögrens Center Rheumatologist that I see seems to use the positive tests, admittedly at low levels of positive, as measures of a sort, measuring the strength or degree of disease. We can argue that on this forum. Labtestsonline reports only the meaning of positive readings of, for example, ANA or SSA.
I was trying not to veer off in this direction. We do need to keep on redefining the clinical indicators of Sjögrens, and getting the word out that there IS treatment that leads to prevention of further problems down the road. The message that Venus Williams was receiving TREATMENT for Sjögrens was an eye opener for me.
OK I wrote two messages in one. It is late. Good night all, and good luck.
Soycoffee
Excellent info - thank you for that.
Is Salagen a prescription only medicine? I am seeing my GP next week so will ask about it, I carry Biotene in my bag as well now.
My feet are still enormous and I cant walk properly and the itch is awful, I am going to have to be very careful with Mozzies this year.
Is anyone on the board from Perth?
There's another option other than Pilocarpin. Which is Evoxac. As Evoxac is supposed to last longer with less side effects than Pilocarpin. But everyone responds differently.
Those meds can only work if your saliva glands still have some function left.
Quote from: Corella on October 30, 2011, 04:27:49 AM
Excellent info - thank you for that.
Is Salagen a prescription only medicine? I am seeing my GP next week so will ask about it, I carry Biotene in my bag as well now.
. . . .
If you search on Salagen, which is a trade name, not the generic name, you should come up with the generic name. I think *that* woud be a name you can take to the apothecary/chemist in Perth (or the doctor) to get a similar product -- one or the other might even suggest a better product. This was the first product to be offered specifically to increase saliva production.
Good luck,
Soycoffee
I had a read and it said caution with asthma - I wonder why that is?
I have had a terrible day today - I had a meeting in the city, it was a hot sunny day, I had my sunblock but no hat. Within minutes of walking to the station, my eyes had dried up and my vision was awful, drops in every 5 minutes.
In my appointment, my throat kept drying out and I kept choking, I bought water with me, drank it but as fast as it was going in, I was drying out. When I left the building I had a rash on my cheeks, I felt sick/dizzy and my eyes felt enormous and burning/gritty - I used up a whole small bottle of drops.
Is this how my summer is going to be, how does the sun do this to me - I cant believe it :( It isnt as though I can stay in during the summer, that is no life at all.
Sorry for moaning - been a crap day and I could cry, oh I cant - got no bloody tears for that either.
(stomps off into the kitchen)
What all tests are you going for Sjogren's? My Rheumy gave me a list of more tests. Some of which I dont' think I've ever had done before. Though I'd much rather have treatment for Sjogrens instead of more and more tests that don't go anywhere.
Hi Corella,
I am new here as well. My rheumy diagnosed me with subacute cutaneous lupus and sjogrens. There are lots of overlap syndromes and it is common that folks with sjogrens have other autoimmune disorders as well. Just like you, I am photosensitive and get rashes on my face and psoriasis like patches on my head as well. I had a positive ANA and anti-SSB. All of the symptoms you mentioned are common from what I understand. Many of the features of systemic lupus are similar in Sjogrens. Hang in there and welcome!!
babs in ga
The big problem is trying to find a doc that will treat for Sjogren's when your bloodwork is good. That's what I've been dealing with as the docs can't answer what else it could be other than Sjogren's. But they don't want to treat Sjogren's other than something like Pilocarpine. I guess they much rather you rot than try fairly safe treatment to keep you from getting worse.
I think doctors nowadays rely too much on bloodwork. They tend to not care about the symptoms, just what the bloodwork says. I've had docs tell me there was nothing wrong with me because my bloodwork is good.
I agree jasonsmith. I'm in the same boat. Symptoms of AI disease, normal blood work and abnormal chest xray. Though the 2 doctor's I've seen couldn't even recognize the chest xray was abnormal!
Corella, I've totally been there. Really want to cry... but I have no tears (which them makes me more upset).
Quote from: arina83 on November 01, 2011, 11:29:48 AM
I agree jasonsmith. I'm in the same boat. Symptoms of AI disease, normal blood work and abnormal chest xray. Though the 2 doctor's I've seen couldn't even recognize the chest xray was abnormal!
Corella, I've totally been there. Really want to cry... but I have no tears (which them makes me more upset).
A Rhuemy gave me a list of bloodwork to get done. Looks like after a discount it will be around $500. Some of it I don't recognize ever having had done before. But I may start a thread seeing what bloodwork others have had and whether the tests look like they would be good to have. Though I'm thinking it will be a waste and the bloodwork come back normal like it usually always does.
Hi, I am sero negative and I too have seen the Queen! And Prince Philip, and Charles S well. I live in canada though.
I had a severe attack in April and May which left me w no saliva. I got salagen two months later, and i am not a hundred percent but it helps. I would def try and wait and be patient.
Quote from: Corella on November 01, 2011, 06:19:42 AM
I had a read and it said caution with asthma - I wonder why that is?
I have had a terrible day today - I had a meeting in the city, it was a hot sunny day, I had my sunblock but no hat. Within minutes of walking to the station, my eyes had dried up and my vision was awful, drops in every 5 minutes.
In my appointment, my throat kept drying out and I kept choking, I bought water with me, drank it but as fast as it was going in, I was drying out. When I left the building I had a rash on my cheeks, I felt sick/dizzy and my eyes felt enormous and burning/gritty - I used up a whole small bottle of drops.
Is this how my summer is going to be, how does the sun do this to me - I cant believe it :( It isnt as though I can stay in during the summer, that is no life at all.
Sorry for moaning - been a crap day and I could cry, oh I cant - got no bloody tears for that either.
(stomps off into the kitchen)
Moan all you want. You. Need to let it out and to have someone hear you. You matter. And I hear ya. You're in my thoughts and meditations.
Quote from: jasonsmith on November 01, 2011, 10:40:58 AM
The big problem is trying to find a doc that will treat for Sjogren's when your bloodwork is good. That's what I've been dealing with as the docs can't answer what else it could be other than Sjogren's. But they don't want to treat Sjogren's other than something like Pilocarpine. I guess they much rather you rot than try fairly safe treatment to keep you from getting worse.
I think doctors nowadays rely too much on bloodwork. They tend to not care about the symptoms, just what the bloodwork says. I've had docs tell me there was nothing wrong with me because my bloodwork is good.
Im lucky, my eye specialist diagnosed Sjogrens straight away, followed up by my dentist - my rheumy was going to wait and see as my ANA and CRP went back down to normal but with the other two experts giving their opinion and the eye doctor saying he has seen it so many times before, an immediate diagnosis was made.
Is it an optician that does the baseline tests for Plaquenil or should I ask my eye specialist when I see him mid November?
Quote from: Corella on November 01, 2011, 07:58:37 PM
Quote from: jasonsmith on November 01, 2011, 10:40:58 AM
The big problem is trying to find a doc that will treat for Sjogren's when your bloodwork is good. That's what I've been dealing with as the docs can't answer what else it could be other than Sjogren's. But they don't want to treat Sjogren's other than something like Pilocarpine. I guess they much rather you rot than try fairly safe treatment to keep you from getting worse.
I think doctors nowadays rely too much on bloodwork. They tend to not care about the symptoms, just what the bloodwork says. I've had docs tell me there was nothing wrong with me because my bloodwork is good.
Im lucky, my eye specialist diagnosed Sjogrens straight away, followed up by my dentist - my rheumy was going to wait and see as my ANA and CRP went back down to normal but with the other two experts giving their opinion and the eye doctor saying he has seen it so many times before, an immediate diagnosis was made.
Is it an optician that does the baseline tests for Plaquenil or should I ask my eye specialist when I see him mid November?
Some on the board disagree. But I'd see an eye specialist over an optician. There are alot of eye docs that miss plaquenil toxicty. So, I'd try and see the most experienced and schooled eye doc that I could. Some see a retinal specialist.
They say toxicity is rare and you have to be on it over 5 years to even get it or be taking high dosages. But the shortest toxicity I've read is 6 months, and that was on 400mg a day. I'd also do the Amsler grid test and color blind test that is recommended to have done to check eye vision. I'd probably do it every week. If you notice any vision changes or something show up on the home eye tests, I'd stop Plaquenil and see an eye doc. But I'd recommend to be careful as some seemed to have noticed vision changes. But their eye doc said they didn't see anything. Then later on their eyes got worse and I don't know if it was a different eye doc. But they saw an eye doc later on who saw the plaquenil toxicity.
If I got on Plaquenil, I'd probably take breaks from it if I could. Or at least rotate to something else for a while. I had read of some docs talking about doing the Chloroquine 6 months on and 6 months off to help avoid toxicity. Though it seems toxicity is more of a problem with Chloroquine than with Plaquenil.
Thanks Jason, Ill have a word with the eye doctor.
Just when I thought my punctal plugs were going great guns, it has been 32 degrees in Perth today and I have used nearly a whole bottle of eye drops - it is challenging my plugs to the max. I get two more put in on the next appointment but I think he may change the drops as Systane Ultra and Polytears are just evaporating as soon as they go in, although what is more efficient I dont know.
It is costing so much already, you know if you dont pay your mortgage they repossess your house, well its a shame if you dont pay for your Rheumy appointments they cant repossess your sjorgrens. :P
It is going to be a long hot Summer and I know it will make me sick.
Oh well, I will at least give the plaq a try and the short course of Dexamethasone for pain - panadol Osteo is good for night pain but during the day its harder to control.
I am going to have a glass of wine tonight as a treat :D
Make it two glasses of wine if it doesnt dry you out to much,, I loved having that glass of beer,, but cant anymore
Did any of you get a moment where your diagnosis sort of hits you and reality sets in?
Well last night I lay in bed feeling awful from being out in the sun - wearing a hat etc, my lungs were stinging when I took a deep breath, the drops in my eyes were lasting 4 minutes (with plugs), and my mouth was as dry as anything and my body sore.
I just lay there dosed up on painkillers, just taken the biotene and thought 'this is it, no cure - this is it, my bloody hair is falling out although not noticeable - yet (except on the floor or in the shower).
I wanted to cry, but tears are on ration and saved for special occasions and if I really get desperate, I can put in polytears and cry them out!!!
It was the sort of reality kick when you realise this is it - this is what you have and whilst others have far worse, you have to get used to living with this 'hostile squatter' that has taken over your body.
And it scared me and still does.
:-[
Quote from: Corella on November 02, 2011, 06:25:29 PM
Did any of you get a moment where your diagnosis sort of hits you and reality sets in?
Well last night I lay in bed feeling awful from being out in the sun - wearing a hat etc, my lungs were stinging when I took a deep breath, the drops in my eyes were lasting 4 minutes (with plugs), and my mouth was as dry as anything and my body sore.
I just lay there dosed up on painkillers, just taken the biotene and thought 'this is it, no cure - this is it, my bloody hair is falling out although not noticeable - yet (except on the floor or in the shower).
I wanted to cry, but tears are on ration and saved for special occasions and if I really get desperate, I can put in polytears and cry them out!!!
It was the sort of reality kick when you realise this is it - this is what you have and whilst others have far worse, you have to get used to living with this 'hostile squatter' that has taken over your body.
And it scared me and still does.
:-[
Well, I don't have an official diagnosis YET but yeah. When I see my hair all over my pillow or in the shower drain; arms hurting, legs hurting, teeth & jaws hurting; being so dang sensitive to every med my dr prescribes; fatigue that turns me into the wench from hades; I hear you.
Quote from: Narablueeyes on November 02, 2011, 07:49:07 PM
Quote from: Corella on November 02, 2011, 06:25:29 PM
Did any of you get a moment where your diagnosis sort of hits you and reality sets in?
Well last night I lay in bed feeling awful from being out in the sun - wearing a hat etc, my lungs were stinging when I took a deep breath, the drops in my eyes were lasting 4 minutes (with plugs), and my mouth was as dry as anything and my body sore.
I just lay there dosed up on painkillers, just taken the biotene and thought 'this is it, no cure - this is it, my bloody hair is falling out although not noticeable - yet (except on the floor or in the shower).
I wanted to cry, but tears are on ration and saved for special occasions and if I really get desperate, I can put in polytears and cry them out!!!
It was the sort of reality kick when you realise this is it - this is what you have and whilst others have far worse, you have to get used to living with this 'hostile squatter' that has taken over your body.
And it scared me and still does.
:-[
Well, I don't have an official diagnosis YET but yeah. When I see my hair all over my pillow or in the shower drain; arms hurting, legs hurting, teeth & jaws hurting; being so dang sensitive to every med my dr prescribes; fatigue that turns me into the wench from hades; I hear you.
I thought I would be relieved with a diagnosis, especially as being sero negative makes it harder, my rheumy initially thought I was sleep deprived through snoring and referred me for a sleep study.
And I was relieved but now I am scared.
Luckily with the hair I have plenty but no woman likes to see her hair falling out.
Do you reckon you will get a diagnosis Nara? I hope you do - its like knowing the enemy once you know if that makes sense.
I saw a new primary doc yesterday who stated that there are no more sero-negative sjogrens because the tests are so much better than they used to be. So, I have the symptoms but lab tests are negative. She also said that no one really does the lip biopsy's anymore. She was very concerned, and caring and she listened and she did say that it will take some time to determne what is going on so not to get discouraged. She diagnosed me with Fibro(already knew that was coming) so anyway, it is what it is.........
Quote from: kelly on November 03, 2011, 06:23:33 AM
I saw a new primary doc yesterday who stated that there are no more sero-negative sjogrens because the tests are so much better than they used to be. So, I have the symptoms but lab tests are negative. She also said that no one really does the lip biopsy's anymore. She was very concerned, and caring and she listened and she did say that it will take some time to determne what is going on so not to get discouraged. She diagnosed me with Fibro(already knew that was coming) so anyway, it is what it is.........
Thats quite worrying, my eye specialist said he has seen it time and time again with Lupus and Sjogrens, one minute the results are positive and the next they go back down but can take a few years to show up and the patient and the symptoms should be treated, not the blood results.
My rheumy agreed with him as well, back in March my bloods were not normal, now they are and the specialist was saying that even patients that have tested positive for Lupus/sjogrens, you could test their bloods again and it could be different.
I just cant wait to start treatment now, the humidity is making me ache like heck and I really do feel very unwell. :(
Quote from: Corella on November 03, 2011, 03:43:36 AM
Quote from: Narablueeyes on November 02, 2011, 07:49:07 PM
Quote from: Corella on November 02, 2011, 06:25:29 PM
Did any of you get a moment where your diagnosis sort of hits you and reality sets in?
Well last night I lay in bed feeling awful from being out in the sun - wearing a hat etc, my lungs were stinging when I took a deep breath, the drops in my eyes were lasting 4 minutes (with plugs), and my mouth was as dry as anything and my body sore.
I just lay there dosed up on painkillers, just taken the biotene and thought 'this is it, no cure - this is it, my bloody hair is falling out although not noticeable - yet (except on the floor or in the shower).
I wanted to cry, but tears are on ration and saved for special occasions and if I really get desperate, I can put in polytears and cry them out!!!
It was the sort of reality kick when you realise this is it - this is what you have and whilst others have far worse, you have to get used to living with this 'hostile squatter' that has taken over your body.
And it scared me and still does.
:-[
Well, I don't have an official diagnosis YET but yeah. When I see my hair all over my pillow or in the shower drain; arms hurting, legs hurting, teeth & jaws hurting; being so dang sensitive to every med my dr prescribes; fatigue that turns me into the wench from hades; I hear you.
I thought I would be relieved with a diagnosis, especially as being sero negative makes it harder, my rheumy initially thought I was sleep deprived through snoring and referred me for a sleep study.
And I was relieved but now I am scared.
Luckily with the hair I have plenty but no woman likes to see her hair falling out.
Do you reckon you will get a diagnosis Nara? I hope you do - its like knowing the enemy once you know if that makes sense.
My last labs showed normal results whereas the labs before that showed differently. This time, I finally got my Vit D up to 45!!! Woohoo!!! She still wants me to get a scialagram done but this jerk of a doctor will not call me to set up an appt!! She said I'm the only one of her patients that has not been able to get in to see him. Unreal! I hope I get a diagnosis soon though. It would help. Me and my PCP did catch an ear infection in the making and she started me on antibiotics. She thought the trazodone wouldn't be a good idea since i already have heart issues and she suggested amyltriptoline. I guess I have to suggest that to my rheumy.
amazing what one doctor will prescribe,, nd then see another one and they prescribe something else,, no wonder we get sicker,, half the time we dont know what these meds are doing to out bodies,, make sure you know the interactions,, I heard the other day that tehre has been a 300% increase in deaths from medications,, mostly fom the opiods,, thats why doctors are so cautious about handing them out,,
Corella, I know what your saying. I have also had a positive ana of 1:160 twice, but "you know that even healthy women will have a positive ANA" yeah, well, are they having these symptoms! Anyway, I am going to try and see a new Rheumie after the first of the year when my new insurance kicks in so maybe, I will find one that is not so "in the box". In the meantime, I will rely on you guys to help me out. She gave me tramadol and neurotin, which I have tried neurotin before and it makes me goofy and sleepy but were doing a low dose and very slowly increasing it. I will try it, winter is coming on and I so do not do well when its cold.
I have found that taking two mersyndol night strength in the morning helps with that awful pain and stiffness I get, 'Oh but its habit forming, have you tried Panadene forte?' the chemist says, well I cant touch panadene forte and I am afraid anything that works is habit forming. I am so used to mersyndol I dont get sleepy or have those effects.
I cant take NSAIDs, Celebrex was really good but made me wheeze, I now take panadol osteo at night and that helps a lot - in humidity though its awful.
Last night was bad, I feel like my lungs are drying out and when I cough I can feel burning/tight pains in my back on the lung part like I am pulling my lungs apart, I was coughing all night taking sips of water and when I woke up this morning it felt like I had bronchitis but after a hot drink and I could clear my chest its better.
My rheumy has a 3 month wait in between appointments, he is so busy - I feel really alone in this actually, but at least he has respected and taken on board the diagnosis of my dentist and eye specialist to give me a diagnosis.
I cannot take any sleeping tablets at all - even Lorazepam give me a dry mouth, I get quite chesty when I take anything like that.
We are just starting Summer in Perth and I actually feel quite nervous of that because my eye plugs are challenged to the max and the sun makes the symptoms worse, I hope it doesnt mean I have to stay in all the time, I love going for a swim in the ocean.
I wish there was a support group where I live, I think there is one for Lupus but I dont know if they meet up or anything.
Oh well, I have my college graduation to look forward to, I shall get my hair done and it had better not fall out because its costing me a fortune!
Becky,
I noticed in your post that you experience much difficulty with dry eye symptoms, and that you have tried many treatment options to deal with the pain and discomfort.
I am wondering if you have heard of PROSE treatment? I wanted to introduce you to this treatment if you had not yet explored this as an option. Prosthetic replacement of the ocular surface ecosystem (PROSE) is a pioneering medical treatment for complex corneal disease that was developed by Boston Foundation for Sight (BFS), and has an 85% success rate for individuals with Sj?grens syndrome.
In fact, many patients of BFS who also have Sj?grens have reported using numerous treatments similar to you ? including topical immunosuppressants, lubricating gels and ointments, punctual plugs, and more. In a survey of these patients, they often found fairly limited success with the above treatments, and yet the vast majority of these individuals reported experiencing ?significant? improvement in dry eye symptoms from PROSE treatment.
If you are interested in learning more, here are some relevant links:
? Overview of BFS and PROSE Treatment: www.bostonsight.org/About-PROSE
? PROSE Treatment for Sj?grens syndrome: www.bostonsight.org/sjogrens
Feel free to contact me if I can answer any questions for you about PROSE Treatment.
Wishing you well,
Janice M. Epstein
Online Community Advocate
Boston Foundation for Sight
connectedvisions@bostonsight.org
The best thing I've found for my dry, sticky throat is a product called "Spry Rain Oral Mist." It beats the heck out of Biotene and the larger bottle comes with a purse sized spray. My dentist actually recommended it.
http://xlear.com/spry.aspx
Click on the link above and scroll to the bottom.
Good luck!
Quote from: Corella on November 02, 2011, 01:51:36 AM
Thanks Jason, Ill have a word with the eye doctor.
Just when I thought my punctal plugs were going great guns, it has been 32 degrees in Perth today and I have used nearly a whole bottle of eye drops - it is challenging my plugs to the max. I get two more put in on the next appointment but I think he may change the drops as Systane Ultra and Polytears are just evaporating as soon as they go in, although what is more efficient I dont know.
It is costing so much already, you know if you dont pay your mortgage they repossess your house, well its a shame if you dont pay for your Rheumy appointments they cant repossess your sjorgrens. :P
It is going to be a long hot Summer and I know it will make me sick.
Oh well, I will at least give the plaq a try and the short course of Dexamethasone for pain - panadol Osteo is good for night pain but during the day its harder to control.
I am going to have a glass of wine tonight as a treat :D
Enjoy the wine. And, you know, it isn't *really* hot until it hits 37 and up.
Also, I hope you will expect good things from plaquenil. I don't know Dexamethasone, but if you have/need more than an NSAID for pain, the it may be the best thing going!
Soycoffee
Thanks QueenV for the info. I am going to try some of the products.
Duchess