Is the early Sjogrens test called "Sjo" legit?

[cccourt1942]

Betsy:  I hope this info has not been offered.  What you call the sjo test is relatively new.  Say??  Maybe in the last two years.

The  Restasis is a tricky med to use.  For instance, I was given a prednisone drop to use Before I dropped the Restasis for a month.  That's how much it burns.  BUT...what I didn't realize was what condition my eyeballs were when I started it.  No wonder it hurt.  My ophthal told me my eye surface was like daylight and dark after one year of Restasis.  Well...they didn't FEEL 100% better.  Within about 6 more months, and I finally felt the difference.  It was the healing of the drop I needed--not the comfort I wanted.  I use a non preservative eye drop during the day (alcon natural tears) but frankly..after two years I seldom (or need) drops during the day any longer.  I truly believed I couldn't tolerate the med.  Also..I don't take CoQ10 (great supplement) I use Omega 3.  The Omega 3 "cleared" the red out of my eyes which I had suffered for 20 years.  I couldn't believe it.  People asked me what I'd done to my eyes.  It was pretty miraculous to me.  This was advised BEFORE I was dxed (the omega 3, that is).

The antibody tests are ANA (anti nuclear antibody) over which there are debates about this as a marker (generally we are told it should be positive
The biggies are ANA - A (or RO)
                   &  ANA - B (or LA)
I have read the more important is B.  I can't find that written any longer.  but I have seen it in writing.  Most people have one, or both.  I have positive in all three.  positive with highest #s as well.

One of the reasons (I surmise since being on this forum) is physicians who don't know Sjs pass the diagnosis phase off to other drs.  That is why the ophthalmology test you refer to as Sjo was so welcome.  Ophthals could administer, send off, and voila.  We have a member of this forum who was the first  (on the forum) to use this test successfully. 

Another reason is some of us are more sensitive to the areas attacked...and thus question sooner.  Is there remission is an ongoing question on the forum.  I believe there has to be as I haven't cried a tear in nearly 25 years.  My eyes hurt..and I wore sunglasses everywhere.  Tho an eye doctor noted my dry eyes, there was no mention of disease.  My mouth was ignored due to my profession.  Speech therapists are always thirsty.  I was 71 when I was dxed.  But in the 25 years previous to that, I went thru at least 3 periods when I was bedridden anywhere from a couple of weeks to about a month.  I never saw a doctor...the fatigue was overwhelming.  I was unable to eat.  No depression..just depletion of energy.  the last time it happened I could barely get out of bed...and was still working part time. 

Imagine my surprise as to why I had all the little creatures that go along with SjS.  I was treating each condition with a different dr.  Never put them together. 

The meds work...the process is tedious and the only other disease causing the thirst is diabetes.  (that is googled and asked what causes it.  )

Hope some of this helps answer your questions.  Miles to go before you have all your answers.

Have a nice week end,
Sjoldier c3

[Jasper]

"Rituxan has been hit or miss in studies. The largest study of Rituxan and Primary Sjogren's Syndrome (TRACTISS) (133 patients) found no significant improvements except for salivary flow, but as Jasper pointed out, smaller studies have found it to be more successful. Personally, I think this has to do with the alternate interferon pathways of SS; likely one pathway is helped by Rituxan and one isn't. That would help explain the disparity in studies. "
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Thanks for the link to that 2015 study.

I agree that there are reasons for the disparities in the study results. I agree that one factor is probably the alternate interferon pathways of SS. I also think that other factors include the study endpoints, the heterogeneity of the study participants, the study design, and the definition of what constitutes a "significant" improvement.

I noticed that the 2015 study checked response at  24 weeks, and 48 weeks. Personally, I think that is flawed. I think they should have done checks at 8, 12, 16, 20 and 24 weeks, as well as 32, 36, 40, 44, and 48 weeks. That would have given a much better picture of whether the Rituxan had any significant effect on various symptoms and at which time points those effects occurred.

Every single person I know who is on Rituxan states that the Rituxan starts to wear off around 18-20 weeks or, at least, it begins to diminish in its effectiveness. The studies I posted also show this. So why would a study check for effectiveness  at 24 weeks when the Rituxan starts to diminish in effect earlier than 24 weeks. The 24 weeks time frame is what has been used for RA, but we don't have RA. We have Sjogren's. Maybe Sjogren's studies need a different time frame to measure effectiveness.

In addition, who determines what constitutes "significant" improvement. Doctors and researchers have consistently minimized the impact of our symptoms, especially fatigue. The amount of improvement we may consider significant, may not be the same as what they consider significant. Maybe they should ask us what amount of improvement we think is significant.

Also, I will take 18-20 weeks of improvement over no improvement. So, if Rituxan lasts 20 weeks for me, and not the entire 24 weeks, I will take it. To me 18-20 weeks of improvement is better than none.

I am happy to see more trials going forward but the studies won't help us if they are too heterogeneous and have design flaws, flawed endpoints, and flawed time frames.

[Sharon]

Very nicely said Jasper!
I completely agree with you.

[Tharrell]

Well then. Interesting bit about Orencia! My rheumatologist has finally decided to treat my joint symptoms after almost two years of complaining and despite me having a seronegative ra diagnosis. Anyhow, she put me on Orencia weekly subQ shots since it's the least likely to mess with my liver and kidneys. Of course I have to wait two weeks after my hip replacement surgery on August 31st.
I'll let y'all know how it goes and if it helps with sjogren's symptoms.

[cccourt1942]

Tharrell:  Very interesting...and you don't have RA do you?  I have a type of psoriasis called guttate.  I had a GP tell me several years ago I had psoriatic arthritis.  It was so casual, I dismissed it.  After dx and subsequently reading 1000's of messages on this forum, I am not so sure.  So last rheumy visit, she asked about the knee pain I suffer.  I reminded her of the psoriasis...which...she didn't KNOW I had psoriasis.  She took over my file after my rheumy moved...almost a full year ago.  Poor woman had 2 caseloads to handle for over 6 months.  I don't blame her.  Well...she said a psoriatic arthritis dx would explain so much.  She followed by telling there was no test to positively dx it.  My hands have some RA like joints, but they just say I have osteoarthritis as opposed to RA.  I am old, so most people do at this age.  She took xrays of knees and hands for a baseline.  We can now watch for changes.

The thing is, I have this unusual gastric problem which is not consistent enough to ever garner a dx of anything.  Numerous gastros have scratched their heads over my probs, symptoms for decades.  About 10 years ago I ran across an article about "internal psoriasis" in the gut.  It described AND explained the erratic bouts of my stomach probs.  I told the rheumy this when she got interested..and she started to refer to my gastro..and I assured her the gastro I use had zero interest in exploring autoimmune issues for that prob.  (and ..I really like the gastro....I'm just realistic)

So she sent home info on sulfasalazeen (sp?) and orencia.  The former treats RA and ulcerative colitis.  Neither do I have.  And for that I have had numerous tests.  Orencia is used to treat RA and psoriatic arthritis. 

I love when all our gut feelings come together with suggestions/dxes from other doctors with our own..it's a gigantic puzzle.  Your message adds about two pieces which fit  my puzzle!  Thx,
Sjoldier c3

[Betsy]

Thank you everyone.
I want to be clear. I love to read and I love to read about anything that can help me. I use to read a lot.
But I am in serious heck with these eyes and cannot read so much. I really want to but I cannot. the computer screen hurts my eyes more than anything else.

If Rituxin had a chance of wokring I'd try it if someone would let me. Not crazy about the risk of death, but with the crazy amount of eye pain, not as scared of it anymore either. I am scared of living with these eyes. That's what I am mostly scared of.

I will try to read up on Orencia and dryness later because my eyes are already shot for the day.

[Jasper]

Betsy ..... there can be serious side effects from biologics and other heavier duty meds, but the serious side effects are actually quite rare. Rituxan is usually well tolerated. The drug companies have to tell you about the few people who had the serious side effects, but that does not mean most people have them. My Rheumatologist uses Rituxan frequently and none of her patients has ever had a serious side effect. No one at my Rheumatological clinic (7 Rheumatologists) or my infusion center, which does numerous Rituxan infusions every year for many conditions, has had a serious side effect to Rituxan. 

I don't know if Rituxan would work for corneal neuropathy, but it certainly improved my Sjogren's peripheral neuropathy symptoms.

I don't know where you go for treatment. If you are not being seen at a university affiliated clinic or medical center, I think that might be a good place to go. I am wondering if Johns Hopkins would have anything to offer you.

[Betsy]

Thank you Jasper.
May I ask your side effects from Rituxan and how much did it help your dry mouth and eyes? What about dry soar throat and nose? Who is your doctor? Here they won't  rx it to me I just know it. Small chance if that one test is positive that I am waiting results for; early sjogrens.

[quietdynamics]

Here is forum link to forum post re: Beyond Ro and La, Current Criteria: New Early SJS Test available 2013
https://sjogrensworld.org/index.php?topic=22714.msg242036#msg242036

Example of some causes for Dry Eyes:
The natural aging process, especially menopause
Side effects of certain drugs such as antihistamines and birth control pills
Diseases that affect the ability to make tears, such as Sjogren's syndrome, rheumatoid arthritis, and collagen vascular diseases
Structural problems with the eyelids that don't allow them to close properly
Mayo Clinic: Common causes of decreased tear production include: Aging. Certain medical conditions, including diabetes, rheumatoid arthritis, lupus, scleroderma, Sjogren's syndrome, thyroid disorders and vitamin A deficiency.
Aging
Certain medications, including antihistamines, decongestants, hormone replacement therapy, antidepressants, and drugs for high blood pressure, acne, birth control and Parkinson's disease
"There are about 100 diseases with autoimmune manifestations.." Dr. Vijay Kumar, University at Buffalo's department of microbiology and dermatology.

I have had occasions when light sensitivity lead me to wear sunglasses to be able to us computer. And halos at night from on-coming car lights was a problem to the extent that I avoided driving at night.  When we read use computer, likely drive people blink less, plus there may be environmental factors, AC, wind, fan, % of room humidity that add into equation. So learning personal symptom triggers is a huge help.
Pilocarpine: Dr increased dose to 4-5 x day to assist with oral and eye dryness. And I have experienced improvement.
Pilocarpine tablets for the treatment of dry mouth and dry eye symptoms in patients with Sjögren syndrome: a randomized, placebo-controlled, fixed-dose, multicenter trial. P92-01 Study Group.  http://www.ncbi.nlm.nih.gov/pubmed/9927101

Restasis + OTC drop study: A statistical difference was seen in favor of Restasis + Systane versus Restasis + Refresh for corneal staining (P = 0.0048) change from baseline and a trend (P = 0.0725) for increased tear film breakup time at 6 months
 
The Paradox
Excessive tearing can be paradoxical because patients come in complaining of tearing; but they really have a dry eye
https://www.reviewofophthalmology.com/article/how-to-read-and-react-to-excessive-tearing

*Tears are a complex mixture of water, fatty oils and mucus. This mixture helps make the surface of your eyes smooth and clear, and it helps protect your eyes from infection.
*For some people, the cause of dry eyes is decreased tear production. For others it's increased tear evaporation and an imbalance in the makeup of your tears.
Drops and ointments: If you have chronic dry eye, it is important to use the drops even when your eyes feel fine, to keep them lubricated. If your eyes dry out while you sleep, you can use a thicker lubricant, such as an ointment, at night. ( I sometimes use a very tiny bit of ointment during the day when my eyes feel 'raw/inflamed" and I can read/see as the amount is so slight)

One year in review 2016: Sjögren's syndrome   https://sjogrensworld.org/index.php?topic=29766.msg312698;topicseen#msg312698

Interesting ..
Do high numbers of salivary gland-infiltrating B cells predict better or worse outcomes after rituximab in patients with primary Sjögren's syndrome? 
http://ard.bmj.com/content/75/6/e33.full

Hopefully the Sjo test will provide some direction for your Drs, either by indicating Sjogrens or ruling it out.

Rituxan is not a first line treatment protocol with Sjogrens.

[quietdynamics]

Betsy you have not mentioned what Dr. has prescribed to manage the eye conditions you have. I do get the occasional sty.
I have ocular rosacea (for one) and use Systane Balance.

In the information I posted on Restasis it notes Systane was used with this product.
Restasis + OTC drop study: A statistical difference was seen in favor of Restasis + Systane versus Restasis + Refresh for corneal staining (P = 0.0048) change from baseline and a trend (P = 0.0725) for increased tear film breakup time at 6 months

Systane Ultra® and Systane Balance®. Both of these ocular products are formulated with an intelligent delivery system and both provide symptomatic relief to patients with dry eye. However, Systane Balance is a novel formulation that contains both polymer and lipid components designed to protect the ocular surface and replenish tear film lipids simultaneously, a factor that is of particular relevance to patients who have dry eye associated with meibomian gland dysfunction.  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3130915/

At bedtime I use drops, then a thin line of Genteal eye ointment. (this is same gel I use occasionally in day..very tiny bit, especially when increase of pollen in air,  etc. as a protective layer)

Pilocarpine was increased to 20-25mg/day.

[WhatYouSjo]

Betsy, have you tried autologous serum eye drops? They are made from a patient's own blood. My new eye clinic occasionally uses them for very serious dry eye cases, and my ophthalmologist told me that they have seen success with them. There is also some research showing successful outcomes.

[Jasper]

Betsy .....

I had no noticeable side effects from Rituxan other than the transfusion reactions that I had while getting the infusion. Most people have some degree of transfusion reaction. Other than that, I have had no noticeable side effects and my lab work has stayed normal.

One thing I should mention is that Rituxan (and any drugs like it) will lower one's resistance to infections. I did get a bad sinus infection in March and it took 2 courses of antibiotics to get rid of it. Then the cough lingered for a very long time. I do not think I would have gotten that infection if I had not been on Rituxan, so I guess I should count that as a side effect.

I don't think Rituxan helped my eyes. I had no eye testing before and after the Rituxan so there is no way I would know for sure. However, I use Restasis twice a day (am and bedtime) and, if I forget to put the drops in, I notice my eyes getting sandy and gritty within a few hours, so that is why I say I don't think my the Rituxan has helped my eyes. Of course, testing may show something different.

I do think Rituxan has increased my salive.

My nose is not dry. I always have sinus congestion and sinus drip. I use saline nasal irrigations to improve my sinus and nose. My sinus problems have improved from the way they used to be many years ago, but I don't think it is from the Rituxan. I do think some of the sinus improvement is from taking N-acetyl L-cysteine, which is a mucolytic agent. I also think the saline nasal irrigations help improve my sinuses.

My throat is still dryer than it should be. It is not sore, but I have a dry cough from the dryness in my throat. I don't think Rituxan has improved the cough. However, it seems to have improved my ability to swallow pills, so maybe it has improved the throat dryness some. I still have to swallow pills one at a time and I need a big gulp of water with each pill or they will get stuck to the sides of my throat. But I have not had trouble getting them down or choking on them since I started Rituxan. They do occasionally still get stuck in my esophagus and need to be "pushed" down with something thicker than liquid.

As I said in a previous post, you need a diagnosis before any doctor will prescribe something like Rituxan. Even then, they may want to try other medications first. Because we do not have precision medicine yet, it is trial and error to see what works. In my case, I was on and off prednisone for flares and my doctor was trying to find something that would keep me off steroids and keep me from going into flares all of the time. I cannot take several of the potential drugs (Methotrexate, Arava, and others)  because I had Hepatitis C in the past. Neither Imuran nor Cellcept worked for me. Rituxan does work for me.

It is true that Rituxan is not a first line drug for Sjogren's. None of the biologics are first line drugs for Sjogren's. In fact, none are FDA approved for Sjogren's. That does not mean none of them work for Sjogren's. It just means none are FDA approved for Sjogren's. Plus, no one drug works for everyone with Sjogren's. The aim is to find drugs that work and use them early on in the disease process in order to prevent progression. When they find more drugs that work for us, then we should start seeing them used early on, to prevent damage, instead of waiting until we have progressed and already have damage. Once the FDA approves drugs for us, we should start seeing guidelines for treating Sjogren's with these drugs, such as the guidelines that are in place for RA and some other diseases. With RA the aim is to treat early and prevent damage. That is what we need, drugs to treat early and prevent damage. Plus, there is a better chance of success if we are treated before the damage has occurred. 

Sometimes biologics are used for conditions caused by Sjogren's. My friend has corneal melt caused by Sjogren's. She is on Remicade infusions specifically to treat her corneal melt.

Hopefully, you can get a diagnosis soon (concerning Sjogren's). If you have a diagnosis of corneal neuralgia, I am wondering if you can get someone to treat you from that perspective. I do not know what treatment options there are for corneal neuralgia, but I wonder if pursuing that angle would get you better results. Some types of neuropathies are treated with IVIg. Some types of Uveitis are treated with IVIg. However, I don't know if corneal neuralgia would be treated with IVIg.

If you have not already done so, maybe seeing a neuro-opthamologist would be a good idea. Perhaps he/she would have a better idea of how to treat your corneal neuralgia and its cause. You should be able to find a neuro-opthamologist at a university affiliated medical clinic.