Hi Brittany 
sorry you’re still feeling bad 
did you ever start cytoxin? ? It’s definitely rough i know. . My vasculits in my sinuse has got worse so I’ll be starting rituxan next month . I have to have a CT of my left sinuse and facial structure with a sinuse tissues biopsy on Monday. . I have the small /microscopic cell vasculits ( Wagners presentation ) it’s affects my upper airways and brain. what mlg of cellcept are you on??i got bumped up to 1500 and it definitely helps my cognitive impairment but it can make ya feel pretty sick at first. Xoxo
Hi Brittany,
I had Vasculitis in 2013 but also got diagnosed with CIDP. You may want them to check you for that as well. I had cytoxan but it didn’t work. I ended up getting IVIG and that was a miracle for me! It has completely turned my health and my life around!
Some people get arm numbness with CIDP as well. And weakness which gets worse over time. There is a lot of CIDP that gets diagnosed as Vasculitis and vice versa. A rheumatologist and neurologist should be able to check you for both.
Take care!
Oh my, I have never heard of CIDP. I will ask both my rheumy and neurologist about it and get myself tested for it. Thanks so much. I hope you are doing well.
tinapet said:
Hi Brittany,
I had Vasculitis in 2013 but also got diagnosed with CIDP. You may want them to check you for that as well. I had cytoxan but it didn't work. I ended up getting IVIG and that was a miracle for me! It has completely turned my health and my life around!
Some people get arm numbness with CIDP as well. And weakness which gets worse over time. There is a lot of CIDP that gets diagnosed as Vasculitis and vice versa. A rheumatologist and neurologist should be able to check you for both.
Take care!
Hey Dawncelest, I haven't taken cytoxin I've started Cellcept which I find has a lot of side effects for me. I am also taking an antibiotic called Sulfatrim that my rheumy prescribed because of the length of time and high dosage of Prednisone I have been on. I am now on 60mg of Prednisone. Two weeks ago I was on 80mg, last week I was on 70mg. I am to stay on 60mg until the end of Feb when I see my rheumy next. I'm hoping that all these awful side effects get better over time. I'll just have to wait it out and see I guess.
dawncelest said:
Hi Brittany :) sorry you're still feeling bad :/ did you ever start cytoxin? ? It's definitely rough i know. . My vasculits in my sinuse has got worse so I'll be starting rituxan next month . I have to have a CT of my left sinuse and facial structure with a sinuse tissues biopsy on Monday. . I have the small /microscopic cell vasculits ( Wagners presentation ) it's affects my upper airways and brain. what mlg of cellcept are you on??i got bumped up to 1500 and it definitely helps my cognitive impairment but it can make ya feel pretty sick at first. Xoxo
My very best wishes to you. Kaz x
Britany, hi. I don't have anything medical that would help me to help you but I do want to tell you that I'm sorry about your horrid experience at the hospital. Did your reaction have anything to do with the nerve conduction test? They can be very rough! It's just a thought...
I'm also deeply sorry that you have brain lesions. Is that a part of your lupus? I wasn't aware that brain lesions could be part of it! Yikes, this illness is complex Whatever the reason, I hope your doctor can figure out where it came from and how to control it.
Take good care!
Re-reading your comment, I wanted to ask you something that might relate to your newest symptoms: do you have joints that move in the wrong directions or finger or toes that you can make go in and out of joint or the wrong direction? Or do you have super stretchy skin that you can pull like Silly Putty? The reason I ask is that if you do have either of these abnormalities, then you might have Ehlers-Danlos Syndrome Type 4, which has similar symptoms as vasculitis. You might wish to read up on it to see if it might fit your symptoms, although you and I aren't medical people or doctors, so we ask them for a diagnosis. But at least if you have the possible source of a symptom...couldn't hurt to ask your doctor. I will add that Ehlers-Danlos Type 4 can present you with extremely urgent symptoms that would take you to the ER ASAP. So it might be good to read it so that you can most likely find out that nothing fits with your symptoms.
PS: If you have a visitor tomorrow, a swift hint about a good magazine would be well worth considering!
Hey Petunia, two days before I was diagnosed with lupus I was diagnosed with a rare autoimmune disease called Aacute Disseminated Encephalomyelitis (I hope I spelled it correctly). The brain lesions from my understanding stem from this. To be honest I haven't found a lot of information on that particular disease because it is so rare. Thank you, actually Ehlers-Danlos syndrome was ruled out a few months ago, thankfully. My neurologist seems to be confident that my current symptoms are a manifestation of my CNS Lupus but he said he doesn't want to rule out the possibility of something else playing a role. He will be following up with me every four weeks for the next few months to be sure. Hopefully, it's just a flare and nothing more serious.
Oh, Brittany, I am so GLAD that Ehlers-Danlos was ruled out! I just came back here to erase that part of my earlier message because it's too horrible a syndrome to banter about as if I knew what I was doing! So I apologize for even posting it here but again, I am DELIGHTED to know that what you have isn't Ehlers-Danlos
And DANG, you must have a great doctor because from what I understand, most doctors don't even really know about it let alone test for it.
I'm going to read up on the auto-immune disorder that you've mentioned as being diagnose with, so will be back in a few!
Okay, I'm back. I'm confused too as it sounds as if Aacute Disseminated Encephalomyelitis primarily hits per-pubescent children. But maybe, just maybe they are wrong and the white matter could be related to migraines or something relatively minor. I will cross my fingers and also say a prayer for you.
So your doctor found abnormal blood vessels in your brain? I didn't realize that vasculities could occur in your brain. Is there treatment for it if you're found to have it? I hope they can rule it out and MS too.
Meanwhile, how did you make out with your arm? Has feeling returned to it? Crossing my fingers that all is well on that front.
Meanwhile, you try to take care and get enough sleep, since you have
Brittany said:
Hey Petunia, two days before I was diagnosed with lupus I was diagnosed with a rare autoimmune disease called Aacute Disseminated Encephalomyelitis (I hope I spelled it correctly). The brain lesions from my understanding stem from this. To be honest I haven't found a lot of information on that particular disease because it is so rare. Thank you, actually Ehlers-Danlos syndrome was ruled out a few months ago, thankfully. My neurologist seems to be confident that my current symptoms are a manifestation of my CNS Lupus but he said he doesn't want to rule out the possibility of something else playing a role. He will be following up with me every four weeks for the next few months to be sure. Hopefully, it's just a flare and nothing more serious.
Petunia, I am hoping MS can be ruled out as well. My neurologist said that ADEM is like MS but generally only occurs once and has the potential to reoccur another time. If for instance, I have many flares of what right now they believe is ADEM then it is possible that I will be diagnosed with MS. I'm really hoping it is not the case but I'm crossing my fingers that it is just the ADEM. I was unaware that vasculitis could occur in the brain as well. I learned that my form of vasculitis thankfully is only inflammation of blood vessel walls in the brain. They were worried that my spine may have been inflamed as well but thankfully the scan came back with no abnormalities. I have currently started the new treatment. I am taking 1,500mgs of cellcept twice daily and I am now on 60mgs of Prednisone. So far the treatment seems to be working for my arms, my right arm is no longer weak or numb which is great. The other side effects I am having are not so great but I guess I just have to deal with them and hope for the best.
Thank you very much. I am doing my best to rest as much as possible. Take care.