Any info would be appreciated
Anyone that has or is dealing with me... - Hughes Syndrome A...
Anyone that has or is dealing with mental issues, such as panic,anxiety, depression and possibly seizures? Anyone else? Never before APS!
Written by
edgewater100
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6 Replies
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KellyInTexasAdministrator
Are you primary or secondary APS?
I know actual full blown lupus can really cause a lot more “psychological disturbance” in that there can actually be a “ lupus psychosis “ that can go along with it. Don’t panic - that can sound very frightening. I know that there is a very manageable way with medication to deal with this and Ros, on the forum, one of the Admins is a degreed psychologist and has lupus herself, so has studied this phenomenon extensively. I think when we understand the actual mechanics of what can happen neurologically, and that medicines can help balance this out, it does not feel so completely overwhelming, chaotic, and out of control anymore. But again- ask Ros.
I think that would be the nose severe, and unlikely scenario.
You ask about seizures. I personally have seizures. I don’t have depression per se- but it took some doing to get them under control. Incomplete control over seizures did cause some anxiety. Only after a four years of them ( not completely resolved) did I get the APS diagnosis. Warfarin helped a great deal.
Mary F and APSnot Fab will tell you that vitamin levels being well in range and ferritin/ iron being topped off correctly will greatly improve your overall functioning and mood.
Vit D
Vit b-12
Ferritin - close to 100 is ideal ( allows thyroid to function properly.)
Make sure thyroid is not lazy. Ask for the advanced thyroid panel- not the standard one.
A chronic illness is a huge lifestyle shift/ adjustment. Isn’t that a sentence you are tired of hearing? It’s just too oversimplified a statement to even begin to do it justice.
“ it is what it is. “ seems to work for me.
Are either of you on Hydroxychloroquine {such as plaquenil } or other.
Yes, I’ve been prescribed 200mg . I did go toxic on this dose as I only weigh about 110. I’m now trying for about 100-150mg - but without success. I really just can’t seem to tolerate the stuff.
What symptoms are making it intolerable? I know if I don’t have something in my stomach I get very very nauseous almost to the point of vomiting. I have also learned to take it at night with a smal snack and place pillows behind me so I won’t be flat, it does help because then I can fall asleep and don’t have to deal with further issues.
Yes my friend i agree after all i went thru and then i believe the way my PCP wrote and talked to my Hemo he caused this misleading situation and that is that till Dr Hughes aresses micro clotting more and i have something fresh to send her i am going to forse walking with my little man and see if maybe the extra blood being pumped will help{ one way or another } i need to start a happy me as lord knows how much longer i have on this lovely planet so i need a more positive me as they say laughter and happiness is goooood medicine in itself - Now i take 400 ml Hydroxy everyday and it took the better part of 6 months for it to settle in -many have asked me how i was dealing with it from the start and i told them it takes a lot of time and most give up to quick. But then others their bodies just don't and most likely will ever tolerate it . But i suffered from Sept 1 2009 till Nov 2 2011 and i was first sent to Dartmouth Hitchcock Hosp.before they realized i was in fact a triple and needed a very much more aggressive approach and meds to get a handle on things and it did work . The Hydroxy i contribute to my most aggressive help with a variety of my symptoms. Life began to settle . BUT Happy -Exercise- and a positive out look is going to be my goal and if my legs do good than i will be happy .and i am losing weight again . Thanks All for all your help as always you guys are there for me .
C & J
KellyInTexasAdministrator
I think this has veered off topic a little to Edge water’s direct questions, but I suppose jet jet, you have a point here. Plaquinil can help manage some symptoms. My Rheumatoligist said plaquinil can help keep the other “ tag along” auto immune diseases such as sjogrins, Thyroid disease , and progressive lupus, and possible systemic Scleroderma at bay for up to 10 years .
