View Full Version : Sjogren syndrome
10-14-2008, 11:43 AM
Well spent 2 full hours with the rheumy this morning. He was very compassionate and a good listener. He understood I was educated and accepted it. I think it made his job easier. It made the visit easier because he never put me down, told me it was in my head, nothing.
He said all my records are consistant with Lupus SLE (duh) but wanted to check my numbers then he will call in a script for Planequil(sp). He put me on Omega 3 Fish oil twice a day and Mobic for inflamation. I already take a baby aspirin, Bentel, Protonix, Claritin, and vit b12. I feel like a walking pill bottle.
Then he gave the bad news. He thinks I may have Sjogens(sp) along with the lupus. I know nothing of this issue and am a bit afraid of having to deal with even more. Can anyone give me any insight?
10-14-2008, 02:37 PM
OoOOO hugsss deester
You've had quite a day. I so happy you're new rhuemy has a good head on his shoulders. It's nice to know that you can work with your specialist.
You've probably read my plaquenil blurb, so at the risk of repeating myself I'm going for it!
I started having some of the reactions that they warn you about. Dizzy spells, nausia, and yep the runs.
My family doctor is on plaquenil and she told me to take both pills right before bed with a small single serving of yogart.
It worked like a charm. I sleep through the dizzies, and my tummy is much happier.
Check to see if it's okay for you to take it this way, if you have any problems with it.
Pain has been cut by 50% now that the plaquenil has kicked in.
I hope it works as well for you, if not better. Frankly I dont know how I managed before this drug kicked in. :)
I do not know a thing about Sjogens, hope you get the results soon...HUGS.
10-14-2008, 08:37 PM
Wow I thought you were already on plaquenil with all the symptoms you describe. I hope it works for you and quick. Also I am glad you were able to get a good rheumy. I see mine again tomorrow and they suck big time. I have been there four times and they have never even touched me or taken a closer look to see my swelling. Hope you get to feeling better and once you start the plaquenil keep taking it, I missed some doses because of a refill issue and hadnt realized how much it was helping until it was gone. Good luck
10-15-2008, 02:22 AM
Good luck with your appointment today! Shove your eye in their face and tell them to deal with now!
Their the ones ragging on about watching for changes in your eyes because of the plaquenil....so give them a shove and tell them to deal with it.
It's so easy to encourage others to push for what they need hahahaha I should take my own advice.
10-15-2008, 03:06 AM
I just wanted to add that I too have Sjogrens Syndrome along with the Lupus. They treat Sjogrens with Plaquenil the same as they do with Lupus. My Rheumatologist told me that it is pretty common to have Lupus and overlapping Sjogrens. He told me that they look at the pattern on the ANA test and they look to see if you are positive for SSA and SSB antibodies to rule out Sjogrens. I have all of this. I hope that you get to feeling better and the Plaquenil should work good for you.
Sjogrens affects the salivary glands and the sweat glands. With Sjogrens you get the dry mouth and dry eyes a lot of times to the point where you get terribly thirsty and you can also get the severe fatigue from it as well.
The Plaquenil can take up to 5 months to get fully kicked in and working so you may not notice it working at first, but remember to keep taking the medication and you will see that it will help a lot.
10-15-2008, 09:16 AM
Thanks everyone! I wasn't on anything because my general practitioner did not know what to give me. I have waited 2 months to see this rheumy. I have always been extremely thirsty but never really thought anything of it. I just keep drinking and peeing as a result. As for my dry itchy eyes, I chalked that up to my allergies.
Looking now at some of my older test results. I have a positive Speckled pattern that says Sm, RNP, SCL-70, SS-A/SS-B and a positive Homogeneous pattern DNA(ds, ss), along with Nucleolar and Centromere patterns also positive. Yikes. I do not know what these all mean and I amm not sure I want to know. The number is 1:320.
10-15-2008, 09:29 AM
It sure does sound like you have Sjogrens along with the Lupus. The speckle pattern in that ANA is found in Sjogrens along with the positive SSA and SSB antibodies. I hope that you get to feeling better and for your eyes you can ask the doctor to perscribe Rystasis drops. I think I spelled that right. I usually suck on sugar free hard candies that helps my dry mouth and thirst feeling out a lot. I hope that you get put on medications soon.
10-17-2008, 03:46 PM
I also have SLE and SJS. I plan to ask my RD on Monday how to tell which symptom is being caused by what. I guess it doesn't really matter, but for some reason I'd like to be able to pin down what's going on and why. The two diseases have some similar components and are treated with the same meds when the SJS is severe enough to cause real problems. Plaq. works well for me but it's just not enough. I hope that's all you need. Be sure to get your eyes checked by an opthomologist every 6 months as Plaq. can cause some retinal damage, but that is quite rare, and having you eyes checked regularly should help you avoid any serious eye problems.
10-17-2008, 04:43 PM
In short...there are two forms of Sjogren's... one is called the primary disease, which occurs when you experience dry eyes and a dry mouth and the secondary disease, which occurs when you experience dry eyes, a dry mouth, and another associated autoimmune disease, such as Lupus. Lupus is then your primary....
Having Lupus also, you would refer to SS as your secondary...
What is the difference when adding SS...dry eyes, dry mouth, drying from the inside out. Less drying than if it was primary. It is also systemic, meaning it affects the organs...drying.
Prescribed treatment are....Restasis, Lacriserts, is used by some to alleviate dry eyes. Salagen and Evoxac to treat dry mouth. Depending on the nature and severity of symptoms steroids, and immunosuppressive drugs.
The over the counter products.... preservative-free artificial tears, artificial salivas, unscented skin lotions, saline nasal sprays, and vaginal lubricants.
It is important you care for your eyes and mouth..most damage is not reversible...get annual eye and dental check-ups and keep lubed.
Ugh...I have both too. I use Restasis, Blink Eyes OTC...gum, more gum, Ricola sugarfree, ensure all hard candy and gum sugarfree...club soda. Sip, sip Iced H20 with lemon is great. Sugarfree raspberry syrup - two tablespoons, two squirts of fresh lime in a tall glass filled with club soda and ice...Sunglasses, don't sleep with makeup...Astroglide for the girlie..
Prior, I've use a prescribed mouth spray, felt like PAM.
Symptoms of SS...
1. Neurological problems,concentration/memory loss..brain fog
2. Dry nose, recurrent sinusitis, nose bleeds
3. Dry mouth, mouth sores, dental decay; difficulty with chewing, speech, taste and dentures
4. Dry skin, vasculitis, Raynaud’s phenomenon.
5. Stomach upset, gastroparesis, autoimmune pancreatitis
6. Peripheral neuropathy...numbness and tingling in the extremities
7. Dry eyes, corneal ulcerations, and infections.
8. Difficulty swallowing, heartburn, reflux esophagitis
9. Recurrent bronchitis, pneumonia, interstitial lung disease
10. Arthritis, muscle pain
11. Abnormal liver function tests, chronic active autoimmune hepatitis, primary biliary cirrhosis
12. Vaginal dryness, painful intercourse.
As you can see, how it overlaps with other autoimmune diseases....such as Lupus symptoms...almost, same, same.
To rule in, rule out SS...is the dry eyes, dry mouth, dry girlie... from medications or SS?
Diagnostic tests....the usual...
* ANA (Anti-Nuclear Antibody)
ANAs are a group of antibodies that react against normal components of a cell nucleus. About 70% of Sjögren's patients have a positive ANA test result.
* SSA and SSB
The antibodies SSA (or RO) and SSB (or LA) are often found in Sjögren's syndrome; 70% of patients are positive for SSA and 40% are positive for SSB.
* RF (Rheumatoid Factor)
This antibody test is indicative of a rheumatic disease. In Sjögren's patients, 60-70% have a positive RF.
* ESR (Erythrocyte Sedimentation Rate)
This test measures inflammation. An elevated ESR can indicate an inflammatory disorder, including Sjögren's syndrome.
* IGs (Immunoglobulins)
These are normal blood proteins. They are usually elevated in Sjögren's.
The ophthalmologic tests include:
* Schirmer Test
Measures tear production.
* Rose Bengal and Lissamine Green
Uses dyes to observe abnormal cells on the surface of the eye.
* Slit-Lamp Exam
Indicates the volume of tears by magnifying the eye and viewing it in its resting state.
The dental tests include:
* Parotid Gland Flow
Measures the amount of saliva produced over a certain period of time.
* Salivary Scintigraphy
Measures salivary gland function.
An x-ray of the salivary-duct system.
* Lip Biopsy
Used to confirm lymphocytic infiltration of the minor salivary glands.
Enjoy this Friday night.
10-18-2008, 08:00 AM
Oluwa, that was very informative. Thank you on behalf of all of us newbies here. As much as I have studied these diseases, there are still some things that escape me and your post helped to sort it out.
10-18-2008, 08:28 AM
Thank you for that Oluwa! VEry helpful. I get sinusitis about 4 times a year for as long as I can remember and walking pnemonia(sp) about twice a year....never thought anything of it. Just chalked it up to allergies and a weak immune system.
Food for thought here.
10-28-2008, 11:23 AM
In response to the SS....I started taking Evoxac a month ago and let me tell you the effect of pretty immediate and I'm a big fan! My dry mouth was so bad that it kept me awake at night, constantly sipping from my water glass. And when I did sleep, my snoring kept my husband awake!!
Now I actually drool again!! and I'm sleeping so much better. The biggest problem is that I don't have prescription drug coverage and Evoxac costs about $220.00 a month. Which is do-able if it weren't for the other $300.00 worth of meds each month.
11-16-2008, 05:23 PM
You are welcome....hugs.
sick n tired
11-20-2008, 11:36 PM
Wow Oluwa...thanks for all that info...I just was dx'd with sjogrens and have been at a loss...knowlege is power to me...
Deester, it is a long wakeful night for me so I have been trying to catch up. Sorry to hear that you have this, but it is good to atleast have a gameplan about what to do.
11-23-2008, 06:58 PM
Be very careful of your eyes. Mine were a mess when I started going to the opthamologist. I see him every two months and my eyes are lots better. They are still very, very dry, but I didn't know how damaged they were on the surface and they are healthier now.
Don't rub them!! Don't wear contact lenses. That was hard for me to give up because I love contacts and hate glasses, but I love vision over blindness so that won out.
My eye doctor had me using Genteal drops and FML and restasis.