Secondary Sjogren's to Myositis/May Have This

Discussion in 'Fibromyalgia Main Forum' started by lurkernomore, Aug 9, 2006.

  1. lurkernomore

    lurkernomore New Member

    Today was my routine rehumatology visit. I had the usual exam until he felt under my chin and got a strange look on his face. He then asked me if I had been having an extreme problem with dry eyes, abundance of dental problems (cavities) and dry eyes. My answer was yes to all he asked.

    He then asked me if anyone in my family had Sjogren's and I told him yes, my first cousin has it. So he asked a few more questions, did some sort of test where a paper was placed under my eye and I was asked to blink repeatedly. There was not a drop of water on the paper. Oh yes, he also looked in my mouth and noted almost no saliva and a cracked tongue.

    So then he did bloodwork and gave me pamphlet on Sjogren's and told me that even if the test came back negative, he thinks I may have it. The tests, according to him, have a possible 40% false negative possibility and he said that what he had seen today had him pretty well convinced that I do.

    Now here is the interesting part. As I read through the pamphlet, I saw that there is something called Secondary Sjogren's, which can follow other conditions. I have forgotten most of them now, but the one that caught my eye was called....myositis. Is this fibromyalgia?

    Because Sjogren's is most definitely classified as an autoimmune disorder which usually goes alone with other autoimmune disorders. And I have always, always been told that Fibro is NOT an autoimmune disorder. Seems pretty contradictory to me, does it to anyone else?

    So I am to be considering going on Plaquenil now, an old anti-malaria drug and possibly, down the road, Methotrexate. He is so certain that I have it. But I am in denial. Is FMS/CFIDS, diabetes and Supraventricular Tachycardia not enough to keep an old broad busy?

    I am honestly considering stopping going to doctors altogether, ha ha. Why can't they ever just have something nice and uplifting to tell me? And the tests, sheesh, how am I ever supposed to pass any of these tests when they won't let me study for them? I will not have this latest development. I refuse to, and that's my final answer! Ha ha!
  2. lurkernomore

    lurkernomore New Member

    Wow, you have put my mind at ease so much by telling me that secondary Sjogren's is not systemic! That was a huge concern to me. Thank you, thank you!

    I have been seeing dentists regularly, every six months and that was a big part of my frustration. I am a "retired dental assistant" so I am fairly anal about brushing and flossing. Yet with every prophy, I wind up with at least six new cavities! As a diabetic who avoids sugar like the plague, this really had me stumped. But my dentist told me I have so little saliva that he didn't even need to use a suction in my mouth.

    Also, due to the diabetes, I see an opthamologist annually. But I learned yesterday that there are tests they can do for folks with Sjogren's which I have not had done. A dye test and a split lamp test, I believe, is what I was told.

    I don't know that is is Secondary Sjogren's, to be honest. I diagnosed myself after reading the pamphlet because of the mention of the myositis. (Am still assuming myositis is an outdated term for fibro.) My rheumy has not told me if this is primary or secondary as yet.

    I also wanted to correct myself because I think I said in my OP that he became suspicious due to puffiness of my neck. When actually the puffiness was just below my chin, I guess where the salivary glands wind up.

    So how do you do with your Sjogren's? Are you on the Plaquenil yourself? If so, have you had any untoward side effects from it? And if I may ask, do you have any family members who have it too? My biggest fear, as I think I stated, is that I may pass any of this down to my children.
  3. scrappnmom

    scrappnmom Member

    My Rheumy thinks I probably have Sjogrens too. But, he has been reluctant to test me for it because to get an accurate test result he would need to take me off of all my meds (since so many of them can cause dry mouth and eyes) and he doesn't think that would be a good idea for me. I have Fibromyalgia and Epilepsy. He said specifically, that he thinks I have Primary Sjogrens. How is Primary Sjogrens different from Secondary? And I might add that an Opthomologist has dxd dry eyes in me. They are also getting worse. And I have had a very dry mouth and throat for several years. But, not to the extent of having tooth problems yet.

    Thanks for your help!
  4. lurkernomore

    lurkernomore New Member

    Okay, according to the pamphlet I was given yesterday, Primary Sjogren's occurs by itself and is not associated with any other diseases.

    Whereas Secondary Sjogren's occurs in association with other forms of arthritis, such as rheumatoid arthritis, lupus, myositis or scleroderma.

    I hope that helps and I really hope that you don't have it! We have enough to deal with as it is, don't we?
  5. lurkernomore

    lurkernomore New Member

    I do see a dentist on a regular basis, that is why I am so frustrated that I am repeatedly getting cavities and having to have crowns and bridges replaced. I am diabetic, so take in little to no sugar.

    I also see an opthamologist annually because of the diabetes. But have never had the specific checks for Sjogren's because I didn't know I needed to until now.

    Thank you for the advice and the reassurance about the lack of side effects on the medication too. I was not looking forward to any more side effects because I have been there , done that with other meds and it was not pretty!

    I still don't know if this is Primary or Secondary though. The symptoms seem to point to Primary, but I'm trying to be optimistic.
  6. scrappnmom

    scrappnmom Member

    Is Evoxic and Genteal prescription drugs or OTC? And are they expensive?
  7. mrpain

    mrpain New Member

    I don't know if the article is right but I just googled sjogrens and it said even secondary sjogrens is systemic..
  8. lurkernomore

    lurkernomore New Member

    I'm sorry I failed to answer this when I replied regarding seeing a dentist regularly as well as an opthamologist. The rate at which my teeth were decaying, especially when I floss, brush and water pick was just ridiculous.

    Anyway, I got off topic again, imagine that! Yes, I have swollen glands right below my jaw, under my arms and in the groin area. I have had days when these glands are so sore I have stayed in track pants all day and walked with my arms out because it was too painful to put them down.

    As for it being secondary or primary, I have no idea as yet. I know I have a first cousin who has it and I have read that one is more prone to have Sjogren's if a family member has it. I guess it's just one more case of having no lifeguard at my gene pool.
  9. jake123

    jake123 New Member

    Hi LnoM, I have been diagnosed with polymyositis because of a certain enzyme being elevated showing up in a blood test = creatine kineas phosphate (not sure) I was put on 60 mg. of prednisone and it went back down to a manageable number. Last bloodwork it was a little elevated. The enzyme is a indicator of cell death in your body. Your muscles become very weak. My rheumy caught it because of my telling her that I couldn't climb stairs. I just couldn't life a leg as high as a stair. I've been able to climb stairs albeit very slowly. I've lost my speedwalking.
  10. lv2sing

    lv2sing New Member

    No, Myositis is not fibro. It is entirely seperate.Myositis is an inflammatory disease that eventually causes kind of like a wasting away of the muscles. You eventually have trouble walking, etc. Climbing stairs, getting arms up over the head, etc. At later stages it can even effect breathing. Usually prednisone is given w/ fairly good results if caught early.
    GenTeal Gel is what I use for my eyes. It is over the counter, about $8.50 a tube, which lasts me about 1 1/2 months. They also include a $1 off coupon in each box for next time, which is great. Do not get it at a drug store, they charge double! Wal- Mart is where I get mine. If they happen to not carry it (which they should), go to the pharmacy, & they will special order for you. Normally, it only takes overnight. It comes in 3 strengths, mild, moderate & severe. You'll probably want severe. I use the gel. It is thicker, so is much more soothing, & seems to last longer than drops.
    I also use Restasis drops, which is prescription. This has worked wonders for me. It causes initial burning upon putting in, but cuts down on eye inflammation BIG TIME! I actually had bloodshot eyes in the corners, almost back behind the eye. Since using this over several years, It's only returned a few times. I can tell if I skip a dose. It's a drop each eye, morning & night. The actual directions call for a new tube each dose, but my opthalmologist said it was safe to use the same tube for 1 day. That way, your drops are basically lasting double the amount of time for you, since it's expensive. I only pay $20 a month w/ insurance though.
    Most of my symptoms include dry eyes/mouth, thrush, joint pain. extreme fatigue, Raynauds, parotid gland swelling & infections, dry nose. I possibly had a slight case of vasculitis once, also malar rashes on my back that return in the same spot . I've been on the saliva drugs, couldn't tolerate due to stomach pain, took Plaquenil for 1 yr. Worked great for fatigue, but caused such bad stomach problems, had to go off it. Took Prednisone for 3 months, also didn't tolerate that well. They were trying it for fatigue, but it seemed to make it worse.
    Any more questions, ask me. Good luck....sorry so long!
  11. lurkernomore

    lurkernomore New Member

    Oh wow, I was way off about the myositis, wasn't I? I am terribly sorry if I upset anyone with my lack of knowledge there. It does sound as if it can cause some very serious problems as well and I am so sorry you have to deal with that!

    lv2sing, thank you for being willing to discuss your dealings with Sjogren's with me. The rheumy told me to get Restasis and start using it right away. I had wondered about my eyes because even when I have slept a full night, they are as red as if I have not slept at all. I'll bet my Sunday School class wonders if I have been out on a bender, LOL!

    I hope and pray I can avoid the use of prednisone. It is really not an option, or so I was told by my GP, because of the tachycardia problem that I have. The last time I took it, my heart was racing so fast that he could not even count it so he hooked me up to an EKG and it was 190. I take Digoxin for that and am just now getting my pulse down to around 105 beats per minute.

    I am sure as time rocks on I will have questions and I really appreciate your willingness to answer them for me. Gosh, it seems as if right about the time I get myself half-way educated about one thing, something else pops up. At the rate we are going, we should all have medical degrees, huh? LOL!
  12. lv2sing

    lv2sing New Member

    Sometimes I feel like I know more than the doctors. I actually diagnosed my own seizure disorder when I was 19! I did some reading on the brain, & found it in like 5 minutes! Went to my GP, he sent me to Neuro & they ran tests, & I was correct! LOL They have now resolved though. Haven't taken meds for that for like 6 years. One less med! :)
    I may have explained wrong to you about the myositis. I do not have it, Thank God. My pen pal did, & I've read up alot on it, because I wonder if I may indeed have it though. I hope not! I'm in the market for a new rheumy, so when I find 1, think I'll ask to be tested.
    If you ever want to "chat", keep trying to get ahold of me here. Generally I read 1-2x a week!
    Have a good weekend. Blessings, Lv2sing :)
  13. joyinga

    joyinga New Member

    I wonder if i might have this.....maybe someone could give me some of their opinions....My teeth have basically rotted out of my mouth in the last 4 yrs..i don't have any left due to all the decay. My family always wanted to blame my dental problems on the pain medicine i took for my arthritis and fibromyalgia on my teeth rotting at an alarming rate. (I take Lortab 7.5mg 4 per day). I nor they could not understand why my teeth have rotted out at an alarming rate that they have...Unfortunately i don't have the money to afford dental care so i'm sure that i could have slowed down the process A LITTLE but i don't think it would have made much difference. All my life i've spent thousands of dollars to keep my teeth beautiful and now they are ALL GONE!! And now i can't even afford to get the rotted teeth out of my mouth cause i cant work and am not from a family that has the means to help me out financially and i can't find any assistance for help anywhere!!!!

    This is SO EMBARRASSING but when i see my teeth it reminds me of the dental problems that meth users have after being addicted to meth. I HAVE NEVER DONE ILLEGAL DRUGS IN MY LIFE AND WOULD NEVER TOUCH THEM AND THATS WHAT IS SO UPSETTING TO ME.... WHEN SOMEONE LOOKS AT ME AND MY TEETH AND SEES THE CONDITION I'M IN FROM THE OTHER PROBLEMS I HAVE WITH ARTHRITIS AND FIBRO (AND IM UNDERWEIGHT CAUSE I CAN'T EAT ANYTHING ANYMORE)THEY AUTOMATICALLY ASSUME I'M A DRUG ADDICT BECAUSE OF HOW BAD ME AND MY TEETH LOOK. They are all rotted and broken off at the gumline, the only ones that aren't are the crowns that i spent thousands of dollars on in the past to help keep my natural teeth(most of the other crowns and bridges i had done have fallen out now too) When i have to go to the ER due for a dental emergency to get antibiotics for a tooth abcess (cause i can't afford to go to the dentist) the ER docs and nurses automatically assume i'm a drug addict(meth user) due to the way my teeth look and the way i look too!! Its frustrating, embarrassing and hurtful!!!

    I've questioned dentists and doctors in the past about WHY my teeth are rotting out at this rate and noone knows why or has an answer to why it is??? Maybe this could be a possibility????

    Thanks for anyones opinion or comments!!


    P.S. BTW.. My glands are swollen in my neck/throat area but i'm not sure if its because of all the infection from my teeth or what??? is that another sign of this disease??
    [This Message was Edited on 08/11/2006]
  14. lurkernomore

    lurkernomore New Member

    Do you have a rheumatologist that you see? If so, I would definitely mention the problems you are having. I have gone to the site for Sjogren's that other posters mentioned here and I saw a LOT of people mentioning their teeth breaking off right at the gum. It is NOT your fault if you are doing all you can do and this is still going on, please do mention it to a rheumatologist.

    You also mention the swelling or puffiness below the jaw. That was what caught my rheumatologist's attention and then he did the test with the paper right beneath my eye and found that no tear production was going on. I do see a couple of things you bring up that I identify with and I would urge you to mention this and have it checked out. I hope you don't have it, but if you do, maybe a good doctor can get you started on a treatment plan and you can go from there.

[ advertisement ]