memory/brain fog

[cccourt1942]

Anne, and others,
   At menopause age (I'll say a range from late 40s to mid 50s) is when I noticed memory issues.  Of course I was still working.  By the time that was over (I'll say at least 20 years ago) my memory, which had been freaky to others before menopause, continued to have glitches after menopause.  I chalked it up to aging.
   At that time I began making notes to myself, using the computer to make notes regarding work issues, etc.  I would "memorize" information.  In other words, I used available tools, I trained myself to remember.  I had never done this in my life.  I figured I'd never reverse the aging, and it was my only solution.  I continue to do this at age 75.  And it works about 85% of the time. 
   I am NOT saying the following applies to any of you.  I am telling you a condition I have.  Please remember: this DOES NOT apply to you all.  About 10 years ago (I was dxed with SjS at age 71--I'm now 75) I began to "lose time."  I had no other way to describe it.  It happened in unfamiliar surroundings as well as VERY familiar surroundings.  I later learned I noticed it more while I was driving.  When my rheumy and internist sent me to a neurologist 2 1/2 years ago, I believed there was no answer to these events other than Alzheimer's. I mean....I was old.   An Alzheimer's screening was administered resulting in 100% on questions-ZERO on the last test: walk a straight line. I couldn't do it nor had I any idea I couldn't.  I was sent for an EEG.  And there it was:  epilepsy.  Specifically: Partial Onset Seizures.  Medication controls them.  I was gobsmacked.
    Once again, I am NOT telling anyone to see a neurologist.  What I am saying, sometimes there are other things going on.  While reading this thread two reasons for brain fog stand out: Aging (natural aging), and menopause (natural phenomenon of menopause).  SjS adds to it.  And now?  I realize SjS always contributed to my brain fog.
    Just as we depend on meds to stabilize further damage to our eyes and oral cavities (teeth), memory activities CAN help.  The neurologist I see asked one day how I coped with the forgetfulness (brain fog) and I answered "my iPhone".  And that is the truth.  Thank Steve Jobs for the iPhone.  Thank goodness for advancement in speed and space on those gadgets in searching for answers.  It has helped me with anxiety when unable to recall something.  Not to mention notes I keep on it for memory boosters!   The thing is about using a smart phone: EVERYONE does.  I often wonder if today's kids will ever develop memory skills. 
    This is a frightening yet manageable symptom.  For those who lost jobs due to it, I hope that occurred before you were SjS dxed.  It should be illegal with IDEA if it was after dx. 

     Good luck all.
c3

[Lesley L]

I'm delighted to have found this site. I have never yet met anyone else dealing with Sjogren's. There are no support groups anywhere near me (I'm in SC). My Sjogren's has been extraordinarily difficult in the past 1 1/2 years. The brain fog, forgetfulness and fatigue are as bad or worse than even before I began treating my issues. My Rheumatologist is finally going to try Rituxan infusions with our fingers crossed. I am cautiously excited to give it a try. We tried Cellcept and I was horribly allergic to it. Once it was finally out of my system, we tried Leflunomide (which has given some relief). While awaiting approval for Lyrica for my Fibromyalgia, we added Gabipenten and found that I couldn't tolerate it (my balance was horrible and the brain fog and memory issues were magnified). We finally obtained approval for Lyrica and the first dose caused me to break out in hives, so that was immediately taken off the table too. I am really hoping for some relief with the Rituxan, but I am still waiting for it to be scheduled. It's been 2 1/2 months since the process for approval and an appointment began.

I am currently taking Dicofenac, Placquinel, Levothyroxin, Leflunomide, Pilocarpine, Restasis, TiZanidine, Mometasone, Voltaren Gel, meds for asthma, allergies and reflux, plus other OTC meds for my eyes, nose and mouth, as well as allergy shots every week. I've also had my tear ducts cauterized in an effort to protect my eyes from draining out what little moisture they were getting from eyedrops and such.

[Deb 27]

I would think if you have SSA or SSB, or any of the other auto immune antibodies, your B cells are overactive.

And, you can bet your last dollar that inflammation causes brain fog!!! At work, I just got put on a research team that is studying cognition and diabetes. Guess what disqualifies you from being in the study??? Yep, auto immune diseases. Even diabetes is suspected of causing cognitive problems.

Jasper, glad the Rituximab is working so well for you. What was happening with your flares? Did you have complications of the dryness?

My fatigue is off the charts.  I really want to retire but I think I've been pulled into some new projects and I feel obligated to my employer. I will give them one year. I will be lucky to get through that. I've had shingles twice this spring and am very run down. I know my docs won't do a darn thing. I might get some help with my functional medicine NP.  I've started taking some supplements in hopes that they will help. CoQ10,  Magnesium Malate, Fish Oil and multi vitamins. I think the CoQ1o is helping my energy. I think the Adderal and Provigin would help much better. Those have never been offered to me for energy or brain fog.   It's scary b/c how will we know when and if we are getting dementia.

At one time, I had a fantastic memory.

[Jasper]

Wendyoh .....

They can run tests to see how many B cells we have but it is not a test that would be done by a PCP in an office. B cells testing is not normally done in clinical settings. They do it in research labs but not in clinical practice, at least not yet.

However, overactive B cells are a manifestation of Sjogren's Disease. B cells are part of the inflammatory cytokine cascade. Depleting the B cells can disrupt the inflammatory cascade.

J Autoimmun. 2012 Sep;39(3):161-7. doi: 10.1016/j.jaut.2012.05.014. Epub 2012 Jun 30.

B cells in Sj?gren's syndrome: from pathophysiology to diagnosis and treatment.
Cornec D1, Devauchelle-Pensec V, Tob?n GJ, Pers JO, Jousse-Joulin S, Saraux A.

Abstract

Primary Sj?gren's syndrome (pSS) is a chronic autoimmune systemic disease, characterized by a lymphoplasmocytic infiltration and a progressive destruction of salivary and lachrymal glands, leading to ocular and mouth dryness. T cells were originally considered to play the initiating role in the autoimmune process, while B cells were restricted to autoantibody production. However, recent years have seen growing evidence that the roles of B cells in pSS pathophysiology are multiple, and that these cells may actually play a central role in the development of the disease. B cells are over-stimulated and produce excessive amounts of immunoglobulins and various autoantibodies. Peripheral blood and salivary-gland B-cell subset distribution is altered, leading to the constitution of ectopic germinal centers where auto-reactive clones may escape tolerance checkpoints. B cells control T-cell activation by different means: B effector cells guide Th1 or Th2 differentiation, whereas regulatory B cells inhibit T-cell proliferation. Several B-cell specific cytokines, such as BAFF or Flt-3L, are instrumental in the occurrence of B-cell dysfunction. Chronic and excessive stimulation of B cells may lead to the development of lymphoma in pSS patients. Autoantibodies and blood B-cell subset analysis are major contributors of a clinical diagnosis of pSS. These considerations led to the development of B-cell depletion therapies for the management of pSS. Rituximab, a monoclonal antibody to CD20, is the best studied biologics in pSS, but other treatments hold promise, targeting for example CD22 or BAFF. Thus, during the last 20 years, the understanding of the multifaceted roles of B cells in pSS has revolutionized the management of this complex disease.

https://www.ncbi.nlm.nih.gov/pubmed/22749831

Another article, The Immune Factors Involved in the Pathogenesis, Diagnosis, and Treatment of Sjogren's Syndrome:

https://www.hindawi.com/journals/jir/2013/160491/

Keep in mind that B cells are only part of the equation. There are many cells and factors involved in the inflammatory/cytokine cascade. Depleting B cells is only one of the possible treatments that may interrupt this cascade and thus treat the disease.

Everyone reacts differently to the available drugs and currently trial and error is the only way to find out which drugs will benefit a particular person.