Hello everyone-
My name is Lauri and I am Dxd with SLE (lupus) for the past few years. My lupus is pretty severe, having attacked my kidneys last year and my lungs before that. THis past fall, I was in somewhat of a remission (you know how it is...never feel GREAT, but functioning pretty well) and was able to be off my prednisone after 10 months.
In Dec, I began flaring (swollen joints, extreme fatigue, rash, headaches, vision problems, etc) however, something very different began occuring. For one, Ihad EXTREME weakness and shortness of breath(very diff from anything before). Also, I had a severe, pressure-like headache on the left side of my head like there was an air bubble in there getting bigger and bgger. One evening, the "bubble" felt as if it burst and I "blipped" out for a few seconds. I immediately thought I had had a seizure (had a few years ago). I ahd another the next day, and they continued on and off for a few days. My doc immediately thought CNS Lupus (attacks the brain and nervous system) and referred me to a great neuro.
The neuro ordered a TON of tests, but the initial EEG was abnormal with NO seizure activity. Over the next couple of weeks I had brain MRI, EMG, 2nd EEG, neuro exam, blood work, Xray, etc. My reg doc put me on 60mg prednisone and 150mg Imuran (in addition to ton of meds Im already on). Now, my lupus sxs started to get under control (fatigue less, swelling down, rahses cleared, etc) but the weakness got worse and worse. The test done showed that Yes, the lupus was attacking the brain (inflammation on MRI, EEG) but the neuro felt strongly that I also had MG due to fatiguable weakness, my difficulty swallowing and chewing, and vision issues. (Incidentally, we always thought these problems were caused by the lupus, but they werent being resolved like the other sxs with the meds).
Now, I went this past week for a RSST? The neuro put an EEG-like wire on my wrist and then my jaw and sent signals (like zaps) to these areas. Their conclusion was that they "didnt cpature it" but that that was common. He apparently does not do the Tensilon test, OR SFEMG unless they HAVE to(?). They gave me Mestinon to take home to start at 30mg every 8hrs the 1st day, up to 6hrs the next, 60mg ev 8hrs the next, then 60 every 6 the next(sorry if confusing). Now, the first day, trying NOT to get my hopes up though, (NOTE - I do NOT want another AI disease, Ihave my hnds full as it is, than you very much. But the thought of having a med that can help THAT FAST? THat is something we DONOT have with lupus), I was able to actually make dinner for my family for the first time in two months! BUT!! The next day was my first day going down to 25mg on pred, and up to 200 on the Imuran. I was hoping now that the Mestinon dose was to be increased a little bit that I would feel even better...nope. I felt LOUSY ALL DAY. Now, I dont know if it was the prednisone being DEcreased, the Imuran being INcreased, or just a bad day with my lupus? But the Mestinon did not work...
My question is (Im SO SORRY about the long post)does that mean it WONT work? Do I need to just keep on with the increased dosage and see what happens? Uuuuggghhhh...this is longest flare Ive EVER had (I am STILL unable to do much at ALL - I get so weak - my legs literally are so weak it hurts to walk and I cannot get any breath (Xrays are clear - no attack from lupus). Its like the lupus is pretty much under control, but this issue with weakness is still keeping me debilitated.
I thank you all for ANY suggestions in advance . Sorry again for the long post!! Hope everyone here is feeling "OK" (Im aware that sometimes OK is a GREAT thing!!)
God Bless you all
Lauri