This is a very complicated disease, so complicated that many doctors have trouble understanding it because they have not lived it. Your depression may be a physical function of your Lupus, and if your doctors do not have a full picture of your emotional, mental, and neurological states as well a your physical state, it only adds another layer of complexity, and makes it more difficult for them to help you. Prednisone is both a miracle drug, and a curse, but it is an anti-inflammatory and may be what will help you. I still recommend getting examined by someone that is competent to either rule in, or rule out CNS Lupus Vasculitis. Unfortunately this is the least understood area of the disease, but keep trying one day at a time, and recognize that you are fortunate in that you are aware that there is an issue. My wife is not as fortunate.
Lupus husband thank you for your input any and all feedback is so appreciated more than you could know .my doctors defiantly feel that all of these symptoms emotionally included are coming from the lupus thus cellcept next step starting a new anti depressant also I don’t think my family really gets it if it weren’t for my therapist and best friend I’d be in big trouble I feel very alone so thank you so much again.
You are very welcome. I can't help the Lupus patient that I want to help the most, but sitting and quietly suffering after having lived, experienced, and researched this form of Lupus is selfish. I have learned that Lupus is a non contagious autoimmune disease, but it is also very important to recognize it as a family disease because everyone near to you is affected. Expect that anyone including many doctors that have not lived through this, have no frame of reference. You will encounter many forms of denial as you fight your disease from people around you, and possibly even from yourself. Remembering this and dealing with it from a position of weakness will not be easy, and support will be required. There are so many layers and complications from this disease. Understanding and education will be helpful tools.
Your doctors should be discussing neurological baselines including brain scans so that they may better understand how you are being affected in the future. I am not familiar with cellcept, but Prednisone is a double edged sword particularly if your doctor has already linked your emotional irregularities to your Lupus. The Hippocampus is the region of the brain that plays a big part in your emotions, and it is very sensitive to corticosteroids.
I have selected three studies that you will find to be very hard to read, and yet very educational. Please do not read them until you are in a good place emotionally, and then do it in the company of your friend. They are:
These are peer reviewed medical papers that your doctor may have to help you to understand, but they may help you to ask better questions of your doctors as well.
I have lupus cns. I understand what you are going through. I am currently taking Cellcept 3000mg , Choroquine 250, and Prednisone 10 mg daily. I also take gabapentin for neuropathy. This seems to be helping. I underwent and IV steroid treatment earlier last year (May 2014). It has taken me awhile, but I am finally able to drive a car again -- which is a lifesaver since I live alone. This disease is brutal and often times no one seems to get how you feel. I always hear "you look fine how can anything be wrong with you" or "we didn't realize that you weren't well today". Keep your chin up and stay strong. You are NOT crazy.
I have pretty severe CNS issues as well , cognitive impairment, dizziness and at times extreme confusion.stroke like symtom :/ ..the only meds that have ever helped me are cytoxin (chemo therapy ) and cellcept. . Ive read the comments about vasculits but i would think if you're drs really thought that could be an issue theres a blood test called an "ANCA" that shows weather you have the antibodie for vasculits .my rheumatologist just did this test for me a few weeks ago because of my constellation of symptoms and my blood clotting disorder. . Vasculits can be a serious condition so if they haven't tested you for it i wouldn't worry too much about having that,you don't need anything else keeping you up at night :)
anyone have any issues with side effects from cellcept,feel little nervous about that one.My one rheumatologist said that it won't work for cns Her and I are probably going to part ways because she also told me she doesn't usually take care of patients who are that sick with lupus REALLY........... after almost 12 years.Primary Doc is going to be at the lupus center .Thanks for any input
Your Rheumatologist will be a very important person in your life, and you need to have a good relationship with him or her. That does not sound like what you are experiencing. I really do not think that a primary has nearly the expertise required, and apparently your former Rheumatologist doesn't either. Keep looking until you find one that you can build a relationship with and that understands CNS/NPSLE very well.
Yes, I have had Polyneuropathy in my hands, feet, legs, arms, and torso, the Neurologist thinks it is from SLE Lupus. I also have blurred vision and brain fog, that has virtually gone away since starting the Hydroxycloirquine. It came back a little during a recent flare, start forgetting names, etc. then when your friends start looking at you funny, thinking “what’s wrong with him?” Of course that makes it worse! Now I just play Lupus charades, and let them guess who I am referring too…
It continues to amaze and frustrate me to see such an obvious link between the inflammation caused by Lupus, the seemingly obvious realization that it would show the greatest effect on the smallest vessels like those in the brain, that there is such a high degree of commonality between typical lupus symptoms and those of microvascular disease, and yet extremely little written about this relationship, and it does not seem that it is being discussed in a direct manner. I did find this article http://www.the-rheumatologist.org/details/article/968011/The_Brain_in_Lupus.htm that sheds some light on this. I might suggest that more patients need to drive this discussion by seeking more education by reading peer reviewed papers on microvascular disease, and specifically cerebral microvascular disease, compare the overlap of symptoms with your own and ask your rheumatologists and neurologists for better answers.
It is difficult to drive a discussion with these doctors, I have tried, they are usually backed up, and wanting to go to the next patient. I did bring it up with my Rheumy that my neuropathy was more micro vascular then small fiber nerves, and that my brain fog and blurred vision got better after taking the anti malarial, her reply was “good” as it was just confirming her diagnosis, that is usually where it ends
Lupus Husband said:
It continues to amaze and frustrate me to see such an obvious link between the inflammation caused by Lupus, the seemingly obvious realization that it would show the greatest effect on the smallest vessels like those in the brain, that there is such a high degree of commonality between typical lupus symptoms and those of microvascular disease, and yet extremely little written about this relationship, and it does not seem that it is being discussed in a direct manner. I did find this article http://www.the-rheumatologist.org/details/article/968011/The_Brain_... that sheds some light on this. I might suggest that more patients need to drive this discussion by seeking more education by reading peer reviewed papers on microvascular disease, and specifically cerebral microvascular disease, compare the overlap of symptoms with your own and ask your rheumatologists and neurologists for better answers.
I realized that what I think are just minor bloopers are, indeed, CNS. Like most of you, I have balance issues, falling issues, memory and mental fog issues, dizziness and anxiety attacks that don't seem to be anxiety attacks as much as fight or flight attacks, because my adrenaline sometimes seems to ramp up to insane levels when I'm sleeping, causing my heart to race, my pulse to thump, my head to pound...I really hope it isn't CNS involvement but it's a possibility.
I had a stroke less than 3 years ago. I was 43 at the time. I still have balance issues, chronic headaches, etc. The good news is that it has gotten better and with aquatherapy has helped me with balance issues. I make myself aware of the signs of oncoming issues...blurry vision, pounding headaches, etc. Anything that may lead to another Tia or stroke.
It is important to take control, perhaps see a neurologist.