On my paperwork it's called "Early Sjogren's Prof" I assume short for profile. It doesn't say "Sho" but it went to the Buffalo lab Immuno or whatever it was called that's associated with Sjo. My results have been in for days but I won't get them for many more days due to the MD not being there. Lame. I was anxious to get them because the standard tests are always negative for the past decade and I have all the symptoms though I am certainly not anxious to test positive. The thing is though, I worry the test results may not even be valid if it shows positive because I know someone who had the test, they just forced it on her she didn't care for it, and the tested positive. Yet her sole symptom is dry eyes, I am dry head to toe. So I worry it is too sensitive, it detected her dry eyes and diagnoses her with Sjorens. I did a search on here for just "sjo" but of course everything Sjogrens came up lol. Any opinions would be very appreciated, thank you.
Hi Betsy and welcome. Yes the test is legit. It's purpose is to catch sjogren's early so that's why your friend may have tested positive with dry eyes beeing her only symptoms. It didn't "catch" her dry eye symptoms, but her positive blood markers for ss-a and/or ss-b. Some here tested positive on this test. I personally tested negative on it. Hopefully somebody will come along who knows how to post the links to the previous articles. Try putting in early sjo test and see if that won't narrow things down.
thanks Tharrell. Up above I wrote "Sho" when I meant "Sjo"
That's quite a big difference that the traditional tests can't catch Sjogrens even after a decade for someone dry from head to toe, and yet this test can catch Sjogrens with dry eyes only. If it's truly accurate there is no point in doing the traditional tests because their negative so often (even a decade later I can't get over that!)
Thank you for the welcome :)
Betsy .....
I have not had the Sjo test that you are asking about so I cannot comment on it.
I did want to mention that about 40% of people who have Sjogren's Disease are sero-negative. They do not have the antibodies for Sjogren's, but they still have Sjogren's Disease.
Have you had a lip biopsy done? The lip biopsy is considered the gold standard for diagnosing Sjogren's Disease. If you have not had a lip biopsy, it may be worth considering getting one done. One caveat is that the biopsy must be done by a doctor knowledgeable and experienced in doing them and it must be sent to a lab and that has a pathologist who is knowledgeable and experienced in reading the biopsy. If it is not done correctly or the pathologist is inexperienced in reading them, the results can be false negative or otherwise useless.
Hi Betsy,
The 'Sjo' test is a blood test that runs the normal, accepted battery of SS tests (SS-A, SS-B, RF, ANA) along with 3 antibodies that are unique to this test. This test was based on studies from the SUNY School of medicine in Buffalo (first study (http://bmcophthalmol.biomedcentral.com/articles/10.1186/s12886-015-0023-1)) (follow-up study (http://www.sciencedirect.com/science/article/pii/S1521661612002392)). From the abstract:
Sjogren's syndrome (SS) is defined by autoantibodies to Ro and La. The current studies identified additional autoantibodies in SS to salivary gland protein 1 (SP-1), carbonic anhydrase 6 (CA6) and parotid secretory protein (PSP). These autoantibodies were present in two animal models for SS and occurred earlier in the course of the disease than antibodies to Ro or La. Patients with SS also produced antibodies to SP-1, CA6 and PSP. These antibodies were found in 45% of patients meeting the criteria for SS who lacked antibodies to Ro or La. Furthermore, in patients with idiopathic xerostomia and xerophthalmia for less than 2 years, 76% had antibodies to SP-1 and/or CA6 while only 31% had antibodies to Ro or La. Antibodies to SP-1, CA6 and PSP may be useful markers for identifying patients with SS at early stages of the disease or those that lack antibodies to either Ro or La.
To summarize, approximately 30-40% of SS patients are seronegative; that is to say, they test negative for the current antibodies (SS-A/Ro and SS-B/La). The researchers found that approximately 45% of these seronegative SS patients had at least one of the 3 novel antibodies that the group studied.
A company named Nicox decided to patent the markers and produce a test around them (since sold to Bausch & Lomb). The new biomarkers are not recognized as part of standard SS diagnostic criteria (https://www.sjogrens.org/home/research-programs/healthcare-providers/diagnosis-criteria), which are decided on by a consensus of medical bodies. As far as I am aware, no one has replicated their studies. That does not mean the results are not valid, but many rheumatologists are unaware of them or will not completely trust them.
One of the key values of the test is that it can be carried out in an optometrist's office, which means that some people with SS will be caught earlier. Because it also runs the usual tests that a rheumatologist would run, it is at least as good as what you would get from the traditional testing route. As a result, it is worth taking if you haven't been previously tested. I personally have tested negative for all antibodies, including the 3 novel ones in the Sjo test, but there are users who report testing positive for the novel antibodies even though they tested negative for the usual ones (SS-A/SS-B).
Thanks Jasper.
"I did want to mention that about 40% of people who have Sjogren's Disease are sero-negative. They do not have the antibodies for Sjogren's, but they still have Sjogren's Disease."
But how do we know this? Is there anything else that can cause dryness from head to toe? These 40%, did they later in life test positive, is that how we even know they always had it? If so, how many years? One would think a decade was enough....
I had the lip biopsy at the start of my misery but my symptoms were and are extreme, then as well, it didn't start mild and gradual almost a decade ago. It was negative.
Thanks what your Sjo, I didn't know the names of the specific antibodies before which is useful to know what are the actual markers.
Betsy .....
Many people who are in the 40% of sero-negative people with Sjogren's do have positive lip biopsies. The lip biopsy confirms the Sjogren's diagnosis in many sero-negative people with Sjogren's.
Many people with negative blood work have Primary Immune Deficiency or Common Variable Immunodeficiencyso they will never be positive to the antibodies for Sjogren's. Their bodies cannot make the antibodies to Sjogren's. There are several people on this forum who have this diagnosis (immune deficiency) along with their diagnoses for Sjogren's.
There are also people on this forum who have neither positive blood work nor positive lip biopsy but their doctors still feel they have Sjogren's
Another thing that will cause a person to have a antibody negative result may be the type of test done. The newer blood test, which is often used, is not as sensitive to the antibodies as the older blood test. Thus, the new test will show a negative result whereas the old test may have shown a positive result. Both tests are still in use. However, the newer (less sensitive) test is the one most commonly used now. There are some articles about this but I will have to search to find them.
When I was tested in 2012 by my dermatology PA, she ordered the newer blood test and it was negative. I was told that I had no autoimmune problems. However, I had a lot of symptoms and I felt that I had did have an autoimmune disease. So, in 2013 I went to a Rheumatologist myself. My (new) Rheumatologist ordered a truck load of tests, including the older more sensitive test for Sjogren's antibodies, and that test was positive for SS-A.
I might add that I have had Sjogren's for decades. However, it was never diagnosed until I saw my fabulous Rheumatologist in 2013. I had systemic vasculitis in 1993-94 and my Rheumatologist at that time did suspect an autoimmune disease. He could not pinpoint the actual autoimmune disease (Sjogren's) because the Sjogren's testing was very new and not very good at that time. So, I was treated for the systemic vasculitis with high dose steroids. Had the steroids not worked, he would have treated me with Cytoxin. Luckily the steroids worked. The point is, that it was Sjogren's that caused the systemic vasculitis even though I did not get diagnosed with Sjogren's until 2013.
There are other conditions that can cause dryness but I am not sure how many cause dryness from head to toe.
The important things are to try to get an accurate diagnosis and get appropriate care for your symptoms. If that means finding new doctors, then that may be the way to go.
Thanks Jasper. Its a lot of good info though it can be overwhelming because I don't fully understand it all. I have been tested so many times, some may have been new some old of the same test. And now more recently the Sjo which I have to wait for so long. Why cant another doctor in the clinic give me the result, I don't understand making a patient wait.
There is nothing to help the dryness, and topicals are a joke when you are really bad, like my mouth and eyes which are so bad, none of that junk works. It sometimes even hurts us, the ingredients they put in the drops, even the PF ones. So if there is no systemic medicine to get my juices flowing then I don't understand the purpose of knowing ? Other than knowing that later the organs will be involved so one can start stressing early :( The rheumatologist even said that systemic meds won't help the extreme dryness. My eyes are out of control. Which is why we began the petition but it doesn't look like it's getting much love here as it did on the dry eye forums. When it goes from extreme dry eyes to corneal neuralgia it's H#@@ pain, 24/7, so for me it's urgent to get closer to the pipeline drops. Its a pain only the most severe patients can truly understand which should be a lot of people here since Sjogrens caused dry eyes is considered one of the worst out there along with Lasik caused dryness and gvhd.
So yeah, I guess I don't understand what you mean by "treatment' if things like Plaquenil don't help the dryness? Not to mention it wont touch cornean neuralgia caused by long term dryness. Is there something new I don't know about? I noticed you had rituxin but hen I begged for it in 2006 they wouldn't give it to me.
I really wish there was an edit option on this forum.
One other point that I would add to Jasper's is that Sjogren's has at least two distinct interferon pathways. This was published earlier this year in LEAP (http://www.whatyousjo.com/2016/01/this-changes-everything-important-sjogrens-syndrome-findings-from-john-hopkins/), a journal by the John Hopkin's Division of Rheumatology. This means that what we consider SS is actually at least two distinct diseases, which are likely diagnosed differently and react differently to medications. Unfortunately, there is currently no commercially available test to determine which pathway your disease follows and which medications might be effective.
In terms of effective treatment; there are no FDA treatments available today that treat SS systematically. Off-label Plaquenil tends to help fatigue and aches more than dryness. Some people will take stronger treatments like Rituxan or Methotrexate, but there is no solid evidence that they help dryness either, and they can have serious side effects. Many of us have found some success with alternative treatments and supplements such as Ubiquinol and low-dose Naltrexone; the research is often light, but we SS patients have to take what is available. As a number of patients on this forum have found at least some success with Ubiquinol and it is cheap and easily available, you may want to start there.
There are some promising clinical trials in the pipeline. Furthest along is Abatacept (Orencia), a biologic drug scheduled to finish its final stage 3 trial next year. A recent smaller trial for Abatacept (http://www.whatyousjo.com/2016/08/abatacept-open-label-study-for-sjogrens-syndrome-concludes-with-promising-results/) on patients with RA and SS found significant improvements in symptoms, including tear and saliva volume, with a third of subjects achieving SDAI remission. While I haven't seen anyone on this forum using it, it is available off-label if you can get a prescription. There have also been promising research (http://www.whatyousjo.com/2016/01/hope-for-2016-my-top-5-upcoming-treatments-for-sjogrens-syndrome/) around small-molecule inhibitors and stem-cells. So there are reasons to be hopeful.
Betsy ..... there is an edit button. Just look at the thread and at your post. You will see a "modify" button at the top right side of your post. If you click on "Modify" it will take you to your post and you can correct any errors or add something. After your have corrected or added what you want, then go to the bottom right and "save" your changes.
You can get drugs like Restasis for your dry eyes if an Opthamologist will order them for you. Optometrists can also order Restasis. I had a prescription for Restasis for my severely dry eyes from my Optometrist 2.5 years before I was diagnosed with Sjogren's Disease. I found OTC eye drops to be of zero help. My cornea were getting abrasions and they hurt all of the time. So, my Optometrist ordered the Restasis. That fixed my eyes. He also recommended Omega 3s, which I do take.
I also take CoQ10 and I do think it helps with the saliva. I know my saliva has increased considerably since July 2013. Now, to be forthcoming, I have added several supplements and a couple of meds since 2013 so I cannot be sure what is doing what. I went back on hormone replacement therapy in 2013. I started Plaquenil in 2013. I added CoQ10 and N-Acetyl-L-Cysteine tabs. N-Acetyl-L-Cysteine increases mucous membrane secretion so it may help some with dryness. CoQ10 was shown in a study to increase saliva in about 65% of people. So, I am not sure what is increasing my saliva, but it is increased. I no longer need to carry water with me and I can now eat a sandwich without drinking anything. I don't drink water anymore at night and I don't wake up with a dry mouth anymore. Those are huge improvements.
My saliva has increased even more since being on Rituxan (first infusion Feb. 25, 2016).
As far as treatment with something like Rituxan, you need a diagnosis first. I don't think any doctor will treat your symptoms with Rituxan or any other biologic without a diagnosis first. Insurance companies require a diagnosis or they won't cover it. Also, these drugs are not without risk so a doctor is not going to prescribe them without having a diagnosis first and without thinking the drugs will benefit the person.
As far as the studies on Rituxan go, I really do not understand why the conclusions keep saying that Rituxan does not help people with Sjogren's. The studies clearly show that Rituxan benefits people with Sjogren's Disease. I do know that some of the studies are poorly designed so that they include the wrong people or they have the wrong endpoints or the wrong time frame. If the study does not have appropriate endpoints and the endpoints are not met, then the study is considered a failure even if the people have improved symptoms.
Here are 4 studies and their results. You can see that every one of them shows that Rituxan benefits people with Sjogren's.
1) The first concluded that Rituxan did not help at week 24. But, look at the study. It helped at week 6 and 16, just not at week 24, the endpoint time.
" Primary end point was improvement of at least 30 mm in 2 of 4 VASs by week 24. Results: No significant difference between groups in the primary end point was found (difference, 1.0% [95% CI, -16.7% to 18.7%]). The proportion of patients with at least 30-mm decreases in at least two of the four VAS scores was higher in the rituximab group at week 6 (22.4% vs. 9.1%; P < 0.036). An improvement of at least 30 mm in VAS fatigue score was more common with rituximab at weeks 6 (P < 0.001) and 16 (P < 0.012), and improvement in fatigue from baseline to week 24 was greater with rituximab. Limitation: Low disease activity at baseline and a primary outcome that may have been insensitive to detect clinically important changes. Conclusion: Rituximab did not alleviate symptoms or disease activity in patients with pSS at week 24, although it alleviated some symptoms at earlier time points."
So, the Rituxan did improve VAS but it wore off before week 24. To me, that does not mean it did not work. It means it wore off before week 24. Maybe we need infusions every 20 weeks instead of every 24 weeks. In addition, I will take 4.5 good months and 1.5 not as good months as opposed to 6 bad months.
https://www.scopus.com/record/display.uri?eid=2-s2.0-84894243056&origin=inward&txGid=0
I will add the other 3 Rituxan studies in another post.
thanks Whats your sjo and Jasper,
Jasper I glad restasis worked for you but for most it does not. Some people it even makes them worse. It worked in only 15% of clinical trial patients so I think you are in the minority and I am glad for you. Most drugs don't move forward at such a low success rate but Allergan calls the shots, their huge. I took Restasis for years without results :/ I have been at this for 10 years (I was a member before but stopped posting as I didn't see anything new coming out to discuss) and tried more than most people, but nothing big like the rituxin.
I already take cq10, nac, fish oil, ldn and more etc...I carry water everywhere and will panic if I forget it. I wake up to drink all night due to the desert in my mouth.
I want to know more about rituxin as well as if it helped your eyes, I will be back later as I am on my way out now, thank you all!
P.S. Sorry didn't realize the modify was edit, my bad, thank u.
I have to be some where soon.
Here are links to the other 3 studies on Rituxan:
2) This study concluded that Rituxan is safe and effective for Sjogren's:
You can read the abstract but also can connect to the entire article/study.
"In the rituximab group, significant improvements, in terms of the mean change from baseline compared with that in the placebo group, were found for the primary end point of the stimulated whole saliva flow rate (P = 0.038 versus placebo) and also for various laboratory parameters (B cell and rheumatoid factor [RF] levels), subjective parameters (Multidimensional Fatigue Inventory [MFI] scores and visual analog scale [VAS] scores for sicca symptoms), and extraglandular manifestations. Moreover, in comparison with baseline values, rituximab treatment significantly improved the stimulated whole saliva flow rate (P = 0.004) and several other variables (e.g., B cell and RF levels, unstimulated whole saliva flow rate, lacrimal gland function on the lissamine green test, MFI scores, Short Form 36 health survey scores, and VAS scores for sicca symptoms).
Conclusion: These results indicate that rituximab is an effective and safe treatment strategy for patients with primary SS."
http://onlinelibrary.wiley.com/doi/10.1002/art.27314/abstract
3) This 120 week study conclude Rituxan is effect for Sjogren's:
"Clinical assessment was performed by ESSDAI every 12 weeks up to week 120 and by self-reported global disease activity pain, sicca symptoms and fatigue on visual analogic scales, unstimulated saliva flow and Schirmer?s I test at week 12, 24, 48, 72, 96, and 120. Laboratory assessment was performed every 12 weeks to week 120. Two labial minor salivary gland (MSG) biopsies were obtained from all patients at the time of inclusion in the study and at week 120.
Results
Our study demonstrated that RTX treatment results in a faster and more pronounced decrease of ESSDAI and other clinical parameters compared to DMARDs treatment. We also observed that RTX is able to reduce glandular infiltrate, interfere with B/T compartmentalization and consequently with the formation of ectopic lymphoid structures and germinal center-like structures in pSS-MSGs.
Conclusions
To our knowledge, this is the first study performed in a large cohort of early active pSS patients for a period of 120 weeks. We showed that RTX is a safe and effective agent to be employed in pSS patients with systemic, extra-glandular involvement. Furthermore, our data on pSS-MSGs provide additional biological basis to employ RTX in this disease."
http://arthritis-research.biomedcentral.com/articles/10.1186/ar4359
4) You can read the abstract or go to the full article:
"Patients were evaluated, using immunologic, salivary/lacrimal function, and subjective parameters, at baseline and at 5 and 12 weeks after the first infusion.
Results
Significant improvement of subjective symptoms and an increase in salivary gland function was observed in patients with residual salivary gland function. Immunologic analysis showed a rapid decrease of peripheral B cells and stable levels of IgG. .....Of the 7 patients with MALT/primary SS, complete remission was achieved in 3, and disease was stable in 3 and progressive in 1.
Conclusion
Findings of this phase II study suggest that rituximab is effective in the treatment of primary SS."
http://onlinelibrary.wiley.com/doi/10.1002/art.21260/abstract
There is also a study on Rituxan and neuropathy but I have to look for that link. It shows improvement in the majority of patients, I think 11 of 17 patients with neuropathy.
"I want to know more about rituxin as well as if it helped your eyes,"
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I don't think Rituxan helped my eyes, at least not that I can tell. If I forget to put in the Restasis drops, I will know in a few hours because my eyes start to feel gritty, like sand or a lash in them. So, I don't think it help the eyes, but a real objective test may say differently.
I do think Rituxan helped my saliva flow. My mouth is definitely less dry.
My biggest problem was fatigue. Rituxan helped the fatigue immensely. I went from dragging around forcing myself to do anything (due to the fatigue) and having to rest several times while doing dishes, to being able to accomplish all sorts of things in a day and finish activitiess without resting. I am not back to pre-systemic vasculitis energy, but I feel better than I have felt in about 8 years. I can do things now. I can run several errands at a time. I can plan and actually have the energy to do the things I plan. I can clean and sort and walk and shop. I feel good and I have energy. Rituxan is a miracle for me.
In addition, Rituxan has decreased the peripheral neuropathy pain considerably, 50% for the burning pain, 70-90 % for the electric shocks, crawling sensations, vibrating sensations, etc.
My joint pain is decreased. Urinary symptoms are decreased.
Even my skin seems less dry. My skin is definitely improved from 2013 when it used to flake all over the place even with lotion. Now it is dry, but not flaking. It is improved but I am not sure that is from Rituxan or maybe something else like Omega 3.
Also, I have not had a flare since being on Rituxan. I had 5 flares last year (2015) and was on steroid tapers for all of them. Since Rituxan I have had no flares.
The Rituxan started to ware off about 5 weeks ago. I noticed I did not have as much energy as I did 2-3 months ago. I also had a week of swollen feet, ankles, lower legs (early warning of a flare coming on) but I did not go into a full blown flare. I still felt better than I felt pre-Rituxan infusion, but I could tell it was starting to lose some of its effect.
So, on Aug. 11th I had the first of my second set of infusions (second infusion will be Aug. 26th). I will keep getting 2 infusions, 2 weeks apart, every 24 weeks. The 120 week study showed even more improvement with the second set of infusions, so I am hopeful. However, I am happy with the great improvement I got from the first set and I will be satisfied with that.
Rituxan has given me back my life and I am very thankful that I have a Rheumatologist who ordered it for me.
Rituxan has been hit or miss in studies. The largest study of Rituxan and Primary Sjogren's Syndrome (TRACTISS) (http://acrabstracts.org/abstract/preliminary-results-of-a-double-blind-randomised-trial-of-rituximab-anti-b-cell-therapy-in-patients-with-primary-sjogrens-syndrome/) (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. There have been enough anecdotal cases of improvement that my rheumatology practice will use it for serious SS cases, though my rheumatologist told me that it typically doesn't help as much with dryness in his experience. There is actually an active phase 2 trial (https://clinicaltrials.gov/ct2/show/NCT02631538) for dual treatment with Benlysta and Rituxan.
Like Jasper said, it seems unlikely that you would be prescribed a heavy-hitting biologic drug without a diagnosis; the side effects can be very serious, including death in rare cases. Orencia/Abatacept is the most promising biologic that I've seen studies for so far, particularly concerning dryness. It is, however, definitely off-label and probably wouldn't be covered by insurance even if you were able to get a prescription.
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
"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.
Very nicely said Jasper!
I completely agree with you.
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.
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
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.
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.
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.
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.
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.
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 (http://journals.lww.com/corneajrnl/Abstract/2014/12000/Long_term_Use_of_Autologous_Serum_50__Eye_Drops.1.aspx) showing successful outcomes.
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.