I'm pretty sure that Sjogren's (or the accompanying anxiety) has impacted my short term memory, in addition to causing some brain fog. Is there hope of this improving with prednisone/plaquenil? What have your experiences been?
Two months into treatment, and I am getting slow improvement with my double vision. Encouraging!
All of my cognitive issues improved dramatically with Rituximab infusions. My memory, processing speed, word finding, thinking ability, executive function ..... everything related to cognitive function ..... have all improved dramatically.
The widespread inflammation that comes with Sjogren's causes the cognitive issues and getting the inflammation down will improve the cognitive function.
My brain fog greatly improved within weeks of taking plaquenil and even quicker when on prednisone.
Jasper, thank you for telling me about your improvement on Rituximab. I'm currently being treated with prednisone and plaquenil, but perhaps I will ask about that treatment. Is it mostly used for people with joint pain? My most obvious/severe symptom is double vision caused by sixth nerve palsy.
SunshineDaydream, it is encouraging that your brain fog improved so dramatically! I have made considerable progress in my functioning, since the anxiety I had before was overwhelming (now that I'm doing better, I realize how much the anxiety was hampering me, how constant it was). However, I still tell my husband the same things over and over, and forget the back stories, jobs, and recent news of our new friends. It's discouraging, because I have to cover up my forgetfulness in social situations.
I guess I can hope that there will be incremental improvement going forward. My double vision is improving slowly, so why not my memory?
Yeah, brain fog is very frustrating, especially in social and work situations, and annoying in daily life. Meds bringing improvement in a variety of symptom is great news, though. Anxiety can increase stress, and stress can make autoimmune conditions more active, so it's good your anxiety is subsiding. Maybe additional anxiety or stress reducing techniques or exercises could help further reduce symptoms.
It is my understanding that plaquenil can take up to six months to see full effectiveness, so some patience is required. If you are still discouragingly symptomatic or your symptoms are impacting your life after six months, maybe reconsider options with your doctor. Autoimmune treatment is often a lot of trial and error until you find something ideal. Every case is different, so there's no one answer for all.
I have had brain fog for many years. In the beginning I thought I was just getting old. My job needed excellent concentration, and I was fired from 4 jobs before Sjogrens was diagnosed. My neurologist has prescribed Adderal for me, and it works like a charm. I take it once per day. It lasts for about 6 hours. Provigil also is excellent for brain fog and helps tremendously with the fatigue. I use both, but not simultaneously. Fatigue and brain fog are for me one of the worst aspects of this disease.
vrystaat, I need to be able to concentrate for my work, too. In the past, before all this, I took concerta, which was useful. Unfortunately, I think these medications tend to increase anxiety, and I need to keep that low. :-\ Perhaps the plaquenil will continue to help. It has only been about two months, if even that much.
Anne ..... Rituximab depletes B cells, which those of us with Sjogren's have too many of. Rituximab suppresses the immune system by depleting B cells and thus interrupts the cycle of inflammation that Sjogren's causes.
The studies that have been done show significant improvement in Sjogren's symptoms. However, Rituximab has not yet been approved for use in Sjogren's by the FDA. It has been approved by the FDA for use in Rheumatoid Arthritis.
I was started on Rituximab because I kept having so many flares and my symptoms were disabling. My fatigue was very disabling and my cognitive function was very disabling. I had a lot of other symptoms too but the fatigue and cognitive problems were the most disabling. I had been on several prednisone tapers over the prior year. I was tried on Imuran which caused my liver enzymes to skyrocket and made me very sick. I was tried on Cellcept which made me feel worse than my worst flare, although it did relieve my joint pain.
I started on Rituximab in Feb. 2016 and is has been a miracle drug for me. Fatigue, cognitive function, joint pain, peripheral neuropathy manifestations, saliva flow ..... have all improved significantly. I now have a life again.
Here is a link to a 120 week week trail of Rituximab in Sjogren's patients. If you read the article and look at the tables and graphs, you can see how much the patients improved.
https://arthritis-research.biomedcentral.com/articles/10.1186/ar4359
I'll read that! Thank you. I'm waiting to see my rheumatologist now. Thankfully I'm responding well to Prednisone, and I hope the Plaquenil, too. I'd love a silver bullet that would fix my thinking, too, but I'm grateful to be doing as much better as I am. It's been some great few weeks.
I went through a period of severe brain fog and memory issues, so much so that I was sure I was getting dementia. I went and had neuro-psych testing. I did surprisingly well on the tests. I said to the Neuropsychologist, I don't understand. My memory has been so bad (and again gave her all of my examples, showing up to events on the RSVP dates, going to the wrong buildings, etc.). I said if I am not getting dementia what is it. Then I asked her if it is possible when I have increased inflammation in my body, could that same inflammation also effect my brain and cause these symptoms? She said absolutely.
I got significantly better and have not had an episode that bad again.
Good luck...it can be maddening.
Take Care.
SjoDry
I absoluty agree with SjoDry. It is the inflammation causing al of those cognitive problems. I had similar cognitive problem as SjoDry discussed ..... forgetting entire conversations, even about very important information such as an appointment with the bank to close on my new condo, forgetting the contents of books I read, even forgetting what I had read in the last paragraph, losing my way on familiar roads, forgetting how to start my car, unable to figure out how to start and run my new washing machine, unable to figure out how to operate my new phone (a land line, not a cell phone), forgetting appointments even when I had reminder notes all over the counter and desk, word finding problems, forgetting what I was saying in the middle of a sentence, unable to converse in a conversation, losing my thoughts completely, having a totally blank mind at times unable to think of even one thing to say, unable to process instructions correctly, and the list goes on. Rituximab fixed all of those cognitive problems. I can function normally now.
The forgetfulness, etc is probably from vasculitis in the brain. The Sjogrens affects the small blood vessels/capillaries and the large vessels can be affected by Wegeners Granulomatosis which now has a new name that I can't remember.
I would be surprised if the Plaquenil would help the cognitive issues unless they are very minor. I have had cognitive issues since I was in my 20's and have had to deal with them as they arose. They came and went, but caused me lots of angst trying to work and deal with life. When my anxiety and depression we treated the cognitive issues improved. Also, with prednisone I noticed some improvement but not enough to make me content. I still have issues but being older and not working takes the pressure off.
I have tried the Imuran with the bad results that sometimes occur. Tried the Methotrexate a couple of times with some increase in infection issues. I did the cellcept but stopped taking it when the dose went to 2000 mgm. I was having so many health issues that were hard to deal with and had recently lost my hubby so I have told my immunologist that I am willing to take the Cellcept the second time but keeping the dose down some.
He had mentioned the rituximab to me several years ago but hasn't mentioned it lately. I react strangely to drugs so sometimes I wonder just how hard I should push it. With all drugs there are side effects and we all have to make the choice on how much we meds to make our lives better. Good luck. irish
I just noticed that your tag line says you are on 200 mg of plaquenil per day which is a conservative low dose to start. Plaquenil dose is based on weight. Depending on your weight, you may be able to go up to 300 or 400 mg per day, so that is something to ask your doctor about. Increasing dose could improve your memory and decrease brain fog. There are also risks of eye damage to consider and regular visits to an ophthalmologist are recommended for baseline and monitoring.
Jasper and others---is there a handy lab test that one's primary care doc could even order to test our B cells to see if we have that issue going on that would indicate rituximab?
Quote from: SunshineDaydream on May 09, 2017, 07:49:57 AM
I just noticed that your tag line says you are on 200 mg of plaquenil per day which is a conservative low dose to start. Plaquenil dose is based on weight. Depending on your weight, you may be able to go up to 300 or 400 mg per day, so that is something to ask your doctor about. Increasing dose could improve your memory and decrease brain fog. There are also risks of eye damage to consider and regular visits to an ophthalmologist are recommended for baseline and monitoring.
Thanks! I tend to be very reactive with medications, so doctors are very conservative. I weigh 115 lbs.
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
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.
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.
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.