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Long term treatment plan for Lupus?

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Lupus
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73monte
Veteran Member
Joined : Mar 2007
Posts : 2381
Posted 7/12/2019 4:19 PM (GMT -6)
I've been on HW for many years now, but on the Crohn's forum. Recently, a do-workers 15yr. old Daughter was diagnosed with Lupus. I'm a little vague, but the symptoms seem to be confined to her brain.

Shes been on Prednisone, and receiving low dose Chemotherapy for about 2 months. So far, there doesn't seem to be any change in her symptoms.

Can anyone give me some relevant information that I might be able to relay? Long term treatment plan? Outlook? Prognosis?
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straydog
Forum Moderator
Joined : Feb 2003
Posts : 18923
Posted 7/12/2019 9:02 PM (GMT -6)
73Monte, I suggest that you check out this site, www.lupus.org, there is some excellent information there to read. I would also encourage your co-worker to read there too. So sad to see a young afflicted with something like this. It may also be of help to find a good & reputable lupus teen forum for her daughter.

Tale care.
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Lynnwood
Veteran Member
Joined : May 2005
Posts : 8049
Posted 7/13/2019 6:44 AM (GMT -6)
Welcome, 73Monte,

Lupus is a mysterious illness, and it's basically the immune system deciding some perfectly normal part of the body is actually foreign, and then attacking it like it's a parasite or bacteria it needs to kill. It very seldom attacks the brain, but it can.

In fact, I am one of the people who had brain issues!! My lupus caused brain inflammation -- enough inflammation to increase the blood markers that indicate inflammation, but not enough to actually show anything in my head with the MRI. However an intense, all-day series of neuro-psycholgical tests showed a series decrease in many of my cognitive functions. The summary of the 24 page report, in terms for the layman, was "17 point loss in IQ".

I had serious difficulties following a conversation. If I tried to say something, I would often loose my train of thought before I finished the sentence. I couldn't follow a 20-minute TV sitcom, couldn't read a book, obviously couldn't finish the PhD I was working on at the time, had to close my business and lay off my employees, etc, etc.

I was lucky in several ways -- the automatic functions of the brain didn't seem to be affected. While I had some issues with coordination, I never had problems breathing, moving muscles, etc, many of the things the brain does. I do recall having some fatigue issues with my eyes and ears, where my eyesight or hearing would "fade out" for hours at a time -- but nothing terribly serious.

My second stroke of luck was my recovery! 10 or so years from the worst point, I am probably functioning at 90-95% of normal -- I haven't had any follow-up neuropsych testing to measure improvement (no $$ due to disability), but I can see and feel the evidence in my everyday life. Of course, I can also feel the impacts whenever I get over-stressed, eat too poorly, loose sleep, or overdo things -- hits me harder and takes longer to recover than a normal person.

What aided my recovery? There are a series of medications used to treat Lupus -- 1) plaquenil, prednisone, 2) imuran, cellcept, mtx, then heavier duty things like 3) IVIG & benlysta. Plaquenil inhibits disease progression, prednisone helps combat the inflammation. Most patients are on both of these for the duration.

The second set of meds act thru inhibiting the immune system, preventing its over-reaction to common things. Generally Drs try one of these at a time, as it's unclear which might help a specific patient or why. For me, we started with Imuran, no improvements, no side effects. Moved on to Cellcept -- which turned out to be my miracle drug!! I think it took about 18 months before things started getting significantly better.

The third set of meds usually reserved for extremely serious and systemic lupus involvement. When this forum was more active, I could tell you more about this, but I'm afraid I've forgotten much of it. Check out the Lupus 101 thread and let us know if you have more questions.

I also credit these things to my recovery:
-- always was a healthy weight, eating healthy, for years before Lupus, which I continued as I could. (For a while there were only a few things I could tolerate, none of which were healthy. lol)
-- always physically active, marathon runner. Never totally stopped, even at my sickest I would try to walk 2-3 miles or go to the gym. Thankful for supportive friends who went with me!
-- learned fairly quickly to honor my limits. If tired, rest, not push thru. If eyes hurt, close them. If ears hurt, go to a quiet place. Work with the illness, not against it. I compare it to surfing... can't fight where the waves take you.

Do most people get better like this? Some do, some don't. This is a mysterious illness, and there is really no predicting it. It also works differently in everyone -- this is how my brain reacted, it could be totally different for your co-workers daughter. Brain involvement could mean brain lesions or tumors or who-knows-what.

I am a little surprised that they diagnosed Lupus in the absence of other symptoms. In my case, I had other symptoms and was diagnosed years before my cognitive involvement. Perhaps there is more to the story than you know.

Hope this helps!
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73monte
Veteran Member
Joined : Mar 2007
Posts : 2381
Posted 7/13/2019 7:05 PM (GMT -6)
@Lynnwood,

Thanks so much for you detailed reply. This information is very valuable. I'm so glad you were able to make such a tremendous recovery. As far as my co-workers Daughter goes, I don't have a lot of information about her. From what I understand, she's very tired, has a sort of brain fog. Unable to attend school or continue any physical activities, like sports.

The meds and the response to treatment sounds very much like it is with Crohn's. Some meds work well for some, but not at all for others. Some have no problem tolerating meds, others get severe reactions. I'll be forwarding your info, to her, and just continue to hope her Daughter starts to respond to treatment soon.
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Lynnwood
Veteran Member
Joined : May 2005
Posts : 8049
Posted 7/14/2019 7:54 PM (GMT -6)
No problems, glad to help. I did have plenty of other symptoms/issues, but kept my discussion to brain stuff since that is what you'd asked about. Feel free to ask more questions if they arise!
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Firefly8
New Member
Joined : Mar 2019
Posts : 15
Posted 3/5/2020 6:31 PM (GMT -6)
In fact, I am one of the people who had brain issues!! My lupus caused brain inflammation -- enough inflammation to increase the blood markers that indicate inflammation, but not enough to actually show anything in my head with the MRI. However an intense, all-day series of neuro-psycholgical tests showed a series decrease in many of my cognitive functions. The summary of the 24 page report, in terms for the layman, was "17 point loss in IQ".

I had serious difficulties following a conversation. If I tried to say something, I would often loose my train of thought before I finished the sentence. I couldn't follow a 20-minute TV sitcom, couldn't read a book, obviously couldn't finish the PhD I was working on at the time, had to close my business and lay off my employees, etc, etc.

I was lucky in several ways -- the automatic functions of the brain didn't seem to be affected. While I had some issues with coordination, I never had problems breathing, moving muscles, etc, many of the things the brain does. I do recall having some fatigue issues with my eyes and ears, where my eyesight or hearing would "fade out" for hours at a time -- but nothing terribly serious.

Thank you for posting this, Lynwood. I'm so happy to hear that you have recovered well. I am in struggling with the cognitive issues and more. Were you referred to a Lupus doctor that specializes in NP SLE? My Rheumy referred me to one, but when I called they said she doesn't see NP SLE patients.

Unsure on how to find the best Neuro Lupus Doc.
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Lynnwood
Veteran Member
Joined : May 2005
Posts : 8049
Posted 3/5/2020 8:14 PM (GMT -6)
I was just treated by my regular Lupus rheumatologist. I don't think a neurologist could have done any better.
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Firefly8
New Member
Joined : Mar 2019
Posts : 15
Posted 3/5/2020 9:21 PM (GMT -6)
Thank you, perhaps my Rheumy can consult with a fellow Rheumotolgist that has more specific training in it.
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Lynnwood
Veteran Member
Joined : May 2005
Posts : 8049
Posted 3/6/2020 8:06 PM (GMT -6)
The neuro part of Lupus is generally caused by inflammation, and it is the work of the rheumy to decrease the inflammation as part of controlling the lupus. Rheumatologists deal with inflammation more than neurologists. In my case, the Cellcept dealt with the raging Lupus, thus the inflammation was managed, thus the cognitive dysfunction diminished.

Best wishes.
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PattyLatty
Veteran Member
Joined : Mar 2006
Posts : 2623
Posted 5/17/2021 4:51 PM (GMT -6)
Lynnwood, in all of my years of leaning on this forum, you’re the consistent knowledgeable voice I can always count in being here. My lupus has been quiet for years and has recently become more active, probably some CNS involvement. I’ve been seeing a neurologist to find out the cause of these new problems. It’s good to see you here, but sad to see that many are not. I’ve been in touch with Rosie and Hippimom, both who seem to be doing well.
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Lynnwood
Veteran Member
Joined : May 2005
Posts : 8049
Posted 5/18/2021 8:01 AM (GMT -6)
Hi PattyLatty,

SO good to hear from you!!!

I guess it shows I don't have a life, I tend to check HW once a day, every day. Guess it's become part of my morning routine!

CNS involvement is the worst! Mine they couldn't find a medical cause for, neurophsych testing showed a 15 point IQ loss. Thankfully my Lupus became quiet, thanks to Cellcept, and my mental processing has slowly returned to normal. I hope yours straightens out soon.

Glad to hear Rosie and Hippimom are well! (I thought Hippimom had passed away.)

I had to start Plaquenil again last year - in the middle of the kerfuffle of Prednisone & Covid. It was hard to find and the price MUCH more than it used to be!! I've just been having such trouble with very stiff and sore joints (also feels like muscles are stiff, is that a thing?). Currently trying a month on Lyrica -- thinking is maybe it's fibromyalgia causing the problem.

Cheers,
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