memory/brain fog

[AnneNeville]

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!

[Jasper]

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.

[SunshineDaydream]

My brain fog greatly improved within weeks of taking plaquenil and even quicker when on prednisone.

[AnneNeville]

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?

[SunshineDaydream]

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.

[vrystaat]

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.

[AnneNeville]

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.

[Jasper]

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

[AnneNeville]

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.

[SjoDry]

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

[Jasper]

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.

[irish]

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

[SunshineDaydream]

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.

[wendyoh]

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?

[AnneNeville]

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.