Has anyone had treatment/discussion/diagnosis of brain involvement with lupus??

I'm asking for as much help and info as possible as i think I may have brain involvement. I suffer from terrible times of depression that come at the same time, or a few days before, a flare. My docs have me on antidepressants but I'm wondering if I should be treated from the lupus point of view. At the moment, by choice, I'm not taking any immunosupressents.

I'd be most grateful to hear from anyone who may be able to help me. Thank you :-)

22 Replies

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  • Perhaps you should try the immunosuppressants - just for a while (6 months to a year would seem a sensible period) - and then re-assess whether or not you want to go on?

    My advice - which is of course not medical, but based on everything I have read about this horrid disease - would be that if you think you have brain involvement immunosuppressants might be a really good idea. Have you discussed your worries about this with your GP?

  • Here's our Factsheet on Lupus & The Brain for you to take a look over.

    lupusuk.org.uk/images/pdf/1...

  • I had a very bad bout of hypomania shortly after diagnosis (I had never had problems before so I think it is linked to having SLE). I have since had other hypomanic episodes so I have treatment for that. I also have had some episodes of mild depression (I usually can tell what has triggered the depression) so I now have a diagnosis of bipolar disorder allthough for me the episodes when I get hypomanic are the most troublesome. I have a mental health team and try to keep my Lupus health in general stable, as flare ups (as well as stress) are likely to make my mental health worse.

  • I am trying to get diagnosed, but I have the same. For a few weeks I can be fine then all of a sudden it is though my world comes crashing down. I have been like this for at least 8 1/2 years and think this is part of lupus.

    I was anti depressants and they made me feel a wee bit better but I still have episodes.

  • Great Factsheet Paul, thanks - an updated version of the one I have written by Dr. Hughes :)

    Not sure I'd encourage you to try immunosuppressants or disease altering chemo for depression alone Betsie - these drugs bring sometimes devastating physical side effects and risks - although I understand only too well where you're coming from having battled depression courtesy of lupus since 1987. It may be that your brain chemistry has changed irrevocably in any event, in which case there is no effective treatment other than anti-depressants. Sorry to sound negative but that proved the case with many of the Lupus UK members I met during my previous years volunteering with the charity. However, looking on the bright side, anti-depressant medication carries few physical risks and can be "upped" during periods when you're in flare. Ask for an "emergency" supply of low-dose whatever you're taking and experiment with increased doses (within medical guidelines of course) when required. As always, it's a matter of being pro-active and learning to manage one's symptoms well. Big hugs - depression is the pits. x

  • Hello Betsisboo

    I think that most of us have had some sort of mental or cognitive problems which are linked to Lupus though not everyone will make the connection with emotional or or behavioural issues. When prompted an aweful lot of us can see that we have been out of kilter in some way or other - getting a definitive cause and effect though is another matter are we depressed as part of out illness or are we depressed because we are ill, feeling crap, unable to do the things we defined ourselves by for long periods with no end in sight ???

    Pain is a mind altering substance, Long term pain, and a family who will not repect or recognize it. That will do you in.

  • It is also the case that Anti-phospholipid syndrome, Vitamin B12 deficiency and a few other of our issues can also lead to mental befuddling.

  • Thank you all for your words and especially for the fact sheet. The main reason why I suspect lupus may be causing the depression is that when I'm on high dose steriods (for chest infections) the depression seems to lift. This at a time when you'd think i'd be feeling more depressed!

    I'm now armed with more knowledge and will talk with my docs about possible treatment. My specialists tend to ask me what I want - which is sometimes problematic as I don't always know!!

    Thank you all again and any more advice greatly received!

    Hope you are all keeping well and pain free :-)

  • tis thread has come at a time where my gp has finally come to terms that i have lupus and am not coping well at all. have just had an mri sacan of my head and the results will be known by 2 weeks. i take it that they have not seen anything. my memory loss short trem is poor.headaches and balance issues. any one have any of these

  • Short term is interesting! I can't read something and retain the info! I have to write everything down. I have to warn people that I can't remember and that they have to say it often for me to get it! Very frustrating to say the least! Makes me feel very inadequate and ridiculous at times.

    Good job I am the boss of my own business, I am fairly sure I would have been fired by now else.

    I have always thought it was because I don't concentrate, but I suppose it could be Lupus related.

  • Headaches and memory problems are very common indeed, mental confusion is also common. This couple with the fatigue can make you feel pretty useless at times and many of us have questioned out sanity as a result.

    As and when you think of an issue to be addressed WRITE IT DOWN. Take a list of things to ask you doctor, it helps no end and will give you more confidence.

  • Oh, absolutely no question depression is one of the many joys SLE brings Betsie and it can be severe - lucky old us, ehh (she says smiling sweetly through firmly gritted teeth, lol). I believe 80% of people afflicted by SLE also develop chronic depression "out of the blue" and it can, as the leaflet states, be the only presenting symptom of lupus initially. This is called "organic" depression because it's caused by the disease and can reasonably be expected to become more severe during flares. This sub-type has the ability (sometimes but not always) to permanently alter one's brain chemistry to the extent where taking anti-depressant medication becomes a permanent requirement. There's also a circular link between pain>debility>depression>pain>etc ad nauseum (which Thaddeus mentions), which is called "reactive" or "functional" depression. Doctors like to try to distinguish between the two because if depression is reactive, rather than organic, it can make one's physical symptoms seem worse than are. However, it's perfectly possible to suffer with both - especially when in flare - and, in either or both cases, vitally important to bring under control. The only person in a position to know whether this has been achieved is you. If you feel OK with the level of anti-depressant you're taking when not in flare but struggle when you are, then you probably need to take a little more during flares to compensate, reducing back to the "normal" dose as soon as you feel able. To allay any fears, just because lupus can and does cause organic depression doesn't mean you'll definitely go on to, or even be at greater risk of, developing the more serious brain complications, such as epilepsy/fitting/strokes etc. Other factors, which you may never develop, are needed to trigger those.

    Finally, consultants do now expect most of their patients to gain a reasonable understanding of and take a certain amount of responsibility for management of their disease using widely-available resources on the web and will respect you greatly for doing so. Working to control an incurable disease that, strictly speaking, has no effective treatment, is tricky and can only be accomplished in partnership with our medical professionals rather than unrealistically expecting them to pull solutions out of a hat. Info available from Lupus UK is an excellent starting point. Taking the Expert Patient's Course (run by most hospitals) will give you another huge advantage. Knowledge is power and self-enabling! Pro-active disease management brings more effective control of symptoms (including depression) ... hope you get where I'm coming from ... not meaning to sound "preachy" any way. This disease takes years to eventually come to terms with and get your head around! x

  • Hands up to depression here as well, its like living in a heavy smog that you cant see a way out of at times and for me its worse first thing in the mornings, my balance isnt as good as it used to be either. The short term memory is frustrating....

    I enjoyed reading your common sense 2nd paragraph Tigerlily. I think the professional health people generally do a good job for us. Havent heard of the Expert Patients Course, how do we get involved with that???

  • Sorry to hear that Chris. If you're taking anything for it, doesn't sound like it's effective enough. If you aren't, please consider asking for a help - you shouldn't be suffering needlessly in this way. I'm a huge advocate of having one's mental health properly treated in the first instance for, if it isn't, you have far less chance of successfully managing (or even coping with) the physical joys of this wretched disease.

    Thanks :) You can find courses here - they are free BTW: expertpatients.co.uk/. Enroll if there isn't one in your area yet - when enough people have (usually a minimum of 20) they will run one. Alternatively, you can now complete the course on-line (the link is bottom of page, right). Good luck and take care. x

  • Hi. I woke up Monday morning and could'nt get out of bed. Been feeling very low last few months and have been on antidepressents for a few years. This Monday though, was somewhat different in that i didn't want to get out of bed, i just wanted to sleep forever. I couldn't get the words out to explain to hubby who got worried and made an emergency call to the GP.At the docs, he asked question after question which my brain couldnt answer, all i could do was cry, i couldnt remember things names of consultants etc. I was so bad that he sent me to a Crisis team. They have referred me to the Mental Health team and my doc is trying to get an emergency app for my Rheaumy. Also arranging an app for the pain clinic. It makes me suspect a Lupus flare. My GP has been brilliant i am lucky to have an understanding one. It has taken me 50 mins to type this comment trying to find the words and correcting mistakes, Had to get amazing hubby to check for me. Oh! this damn disease.

    Regards

    caz59

  • xxxxxxxx hugs

  • Hi caz thank you for taking the time and the effort to reply to my question. I to have had times like you are describing and it's a horrible and scary place to be. I also saw a crisis team and it was the consultant there who made me question was this a flare?

    The team changed my antidepressant and I have noticed a huge improvement.

    I sincerely hope you manage to find meds that will help you.

    Sending big hugs :-)

  • Betsie Boo

    I think that generally depression comes with pain experienced by all sorts of illnesses. I was diagnosed with Lupus in 1988, and am generally up and down, depending on the pain, and activities it suppresses me from doing. The worst is when you have to let friends down, as you look well on the outside, but don't actually feel well at all.

    I was on immunosuppressants (azathioprine) for many many years which you should be aware can trigger cancer. In August 2011 I developed Primary CNS Lymphoma in the form of a hodgekins Brain tumour mass. I have spent the past 12 months fighting this, and am now thankfully in remission. My advice would be - beware of immunosupressants - you may end up worse off than you started!

    Lisa

    p.s.Good luck

  • Oh Lisa, you really have had a dreadful time. I'm so sorry to hear that but glad you're now in remission. My Rheumatologist used regularly to prescribe Azathoprine for SLE but stopped using it some years ago because of the problems it was causing long-term (on which he didn't elaborate to me but must have been pretty serious, as in your case). If I'd allowed him his way when first referred, I would have been taking it too. Totally agree about treating immunosupressants or chemo with extreme caution and, in fact, thoroughly research any new drug that's suggested before agreeing to try it. Also a good idea to steer clear of corticosteroids for as long as possible. Just 10 years down the line with those I have osteopenia (the precursor to osteoporosis). Manage with NSAIDs for as long as possible!

    Caz, sorry to hear you reached crisis point too and I hope things are brought under control soon. Sounds like you have a great, supportive GP which is quite an asset.

    Hugs to you both x

  • I am 10 years down the line with Prednisalone and am desperately trying to get off them. So far so good, I have taken a month to reduce by 2.5mc So hopefully this week I will start again to lose another 2.5mc fingers crossed I won't get a massive flare up! even if I do flare up, I am going to carry on reducing.

    With regards to the immunosuppresants, I made a consious decision, I decided that as I have to work and I have a young daughter to encourage and support and a husband who feels totally cheated by the whole thing, I want to live for now, so am taking Methotrexate weekly. However, I often think that it would be nice to go drug free, but at the moment I don't have time or the patience to txry detox and flare up, So I will continue with the various poisons that are enabling me to as normal as possible! lol

  • i live with depression i believe it was caused by the sudden death of my twin in 2004 and then being diagnosed in 2005 with lupus. im now able to reconise when my bad days are out weighing my good days mood wise. ive never taken meds for it tho,dont know why. ive had a brain scan MRI last year as my memory and balance is so poor, my lupus specialist took a brief look at the "picture" as my lupus appt was the next day after scan and she said it was ok. but is she qualified to read MRI's?? i dont feel like she cares at all im just an nhs number.

    i do wish you all the best,lupus and depression isnt easy to live with xx

  • Hi there,

    We cannot answer your question, only the rheumatologist will know if she is qualified enough or not.. But my guess would be no. She might be able to spot obvious signs of brain inflammation but it's unlikely she will be able to see more subtle signs of damage. The person you should speak to is a neurologist and if possible they should specialise in autoimmune disorders affecting the brain. If you think that your lupus is affecting your nervous system you should definitely get a referral. Btw. when you did MRI last year, what did the doctor you reffered you say about the scan, did it show any abnormalities?

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