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Michele43
05-17-2011, 04:43 PM
Hello, my name is Michele and I live in Upstate New York in a small town called Rome, about an hour from Syracuse. I have lived here all of my life. I am married to a very supportive husband who is there when I need him. Today is actually our 14th year anniversary. I have two children, ages 24 & 21, who are living on their own. I also have 3 grandchildren whom we love very dearly and love spending time with them watching them grow up.

I was diagnosed with Lupus in October 2010. The only symptom I had was a rash on my back, which my dermatologist did a biopsy on and it came back discoid Lupus. He then did the whole workup for systemic Lupus and referred me to a rheumatologist who confirmed the diagnosis of systemic Lupus. My ds-DNA was greater than 800, which is very high. My rheumatologist started me on Plaquenil right away and monitored my urine once a month until I started spilling protein and blood in my urine. She then referred me to a nephrologist, who is wonderful, and he did a kidney biopsy. My biopsy showed necrotizing glomerulonephritis, which is a condition caused by Vasculitis. So along with Lupus, I have Vasculitis as well. I have been on 25mg of Prednisone since January and every time my doctor tries to ween my off the Prednisone, my toes start hurting again. I was having problems with my toes going blue on me in January as well, which my rheumatologist told me I may have Vasculitis, until the biopsy proved it. I am now on Cytoxan once a month (which is chemotherapy) for 6 months to help with my Vasculitis and Lupus. So far it is working, currently on 4th treatment, because my ds-DNA has come down along with other bloodwork.

Was wondering if anyone else has had any of these problems that I am and if so, what are the doctors doing about it for you. Looking forward to meeting new friends that are in the same position as me, with Lupus.

Peridot20_Gem
05-17-2011, 05:13 PM
Hello Michele,

Welcome to WHL and it's lovely to have you with us, there's so many threads to venture through regarding different illnesses regarding Lupus and Autoimmune dieases.
I've got systemic Lupus and the full works of A1 Diseases over lapping Autoimmune diseases, i was on plaqueni like yourself but it just did'nt like me, which can happen some times but i've recentley found out i have a Tumour on my Liver and when that's been sorted out, i'm to be starting on Anti-cancer treatment as my system is progressing to much.
I only found out i had it 3yrs ago but since i was 14yrs old i've add ailments which progressed over the years and then was told i was born with it and everything i'd suffered and still do Lupus had caused it.

Refering your Vasculitis i suggest when looking at the threads get intouch with Diane (LUVMYFLOWERS) as she got it serious and could tell you so much about it and the drugs they've had her on to control it, she's a lovely friend of mine.

I'll look forward to getting to know you and our member's are caring and terrific people, just one lovely large close family.

((Hugs Terri)) xxx

steve.b
05-17-2011, 07:26 PM
sorry i have no advice, but wanted to say hi.

Gizmo
05-17-2011, 08:40 PM
Michele43,
Wow, it sounds like you really got slammed all at once with lupus. I hope you and your doctors can find a way to stop the progression so you can continue to enjoy those grandkids. Welcome from another newbie.

~LUVMYFLOWERS~
05-18-2011, 04:43 AM
Hi Michele43, And welcome to WHL! And happy Anniversary! I've also been diagnosed with sle
lupus, cns vasculitis and other over lapping autoimmuine diseases with those. I was also first
put on plaquenil when my rheummys first said i had mctd and didnt know exactly witch ones i had and i also could not take the plaquenil. It took several rheummy's and neurologist and tons of test and over 7 yr's for my dr's to figure out what all i had and get me diagnosed. Becuse lot's of my test kept comming back negative, for m.s. lumbar puncture,lip biopsy for sjogrens ,
and lot's more mostly what was positive was high ana and always elevated wbc. and at times inflamation marker was elevated. I finaly got diagnosed when i had a spell where i couldent keep my balance and my legs and face went numb, had speach problems, spasams, and termors
short term memory problems and other bad symptoms sent me to the er and they did a mri of my brain to check for stroke and found 12 lesions on my brain in the white matter and from there
lot's of dr's and test and finaly diagnosed by a rheumatologist professor and neurologist professor at a big teaching university hospital. They have me on 100mg Imuran and 25mg predinsone for now to try and slow the diseases down. I do have the same problem as you with my toes going blue i also have red blood spots that pop up every where. But i have so much going on till i didnt know if my toes going blue was the vasculitis or the raynaud's.
I look forward to getting to know you, And there are lot's of wonderful careing people here.
Hope you have a good day! ~Diane~

debbie-b
05-18-2011, 05:25 AM
Hi Michele,
Welcome to WHL.

It sounds that you are in good hands with your doctors.
Keep working with them and they will find the best treatment for you, it takes time.
BTW, I live in Rochester, not to far from you.

Debbie

Michele43
05-18-2011, 05:54 PM
Diane, I have not had all the tests that you have had for a diagnosis. They diagnosed me primarily through my blood tests and the kidney biopsy. I was told I had Sjrogen's because my blood level for Sjrogen's was high, never had the lip biopsy. That must hurt. I was told that there is a possibility that I have lesions on my brain because of the Vasculitis and Lupus, but never had an MRI. I had a CT scan which was normal. My WBC's always seem to be elevated as well. I occasionally have problems with balance and with my hands going numb on me once in a while. I do get dizzy spells as well. My doctor does plan on putting me on Imuran once I am done with this chemotherapy treatment. It sounds like we have the same problems though. So I guess my question is, what are they doing about the lesions in the brain for you? Are they just treating you with Imuran and Prednisone? I recently found out about brain lesions associated with Vasculitis and it scares me. What is going to happen to us next?

Saysusie
05-18-2011, 07:31 PM
Hi Michelle;
Welcome to our family. While I am sorry that you are dealing with so much due to your Lupus, I am glad to hear that you have doctors who respond quickly, who treat your symptoms effectively, and who are working towards minimizing your symptoms (as seen by the lowering of you ANA!). You are also very lucky to have doctors who recognize that fact that your blood results improve because of your medication...not because you do not have an illness (you'd be surprised how many doctors have dismissed patients because their lab results improved).
I am glad that you are here and that you joined our family. You will find that we have the most caring, understanding, compassionate members on the web and that this family is a global one. Once again....welcome :-)

Peace and Blessings
Namaste
Saysusie

Peridot20_Gem
05-20-2011, 07:14 AM
Hi Michele,

I have the sjogren's like you and diane and when i spoke to 2 of my doctor's i saw the other day, they mentioned i may have vaculitis, well my dermo's just done other bloods and what i can't get out the rheumo he tells me.
They want the tumour sorted on my liver and are on about chemo drugs would be best for me "Methotrexate" because now with the Tumour other things could progress and they need to get something in me to surpress my immune system.

Refering the vasculitis Diane as been through hell and back and still is and there's not one single day which picks up for her, i always worry about her safety concerning her balance.

God it just never ends. xxx

tgal
05-20-2011, 07:30 AM
Hello Michele,

Welcome to WHL and it's lovely to have you with us, there's so many threads to venture through regarding different illnesses regarding Lupus and Autoimmune dieases.
I've got systemic Lupus and the full works of A1 Diseases over lapping Autoimmune diseases, i was on plaqueni like yourself but it just did'nt like me, which can happen some times but i've recentley found out i have a Tumour on my Liver and when that's been sorted out, i'm to be starting on Anti-cancer treatment as my system is progressing to much.
I only found out i had it 3yrs ago but since i was 14yrs old i've add ailments which progressed over the years and then was told i was born with it and everything i'd suffered and still do Lupus had caused it.

Refering your Vasculitis i suggest when looking at the threads get intouch with Diane (LUVMYFLOWERS) as she got it serious and could tell you so much about it and the drugs they've had her on to control it, she's a lovely friend of mine.

I'll look forward to getting to know you and our member's are caring and terrific people, just one lovely large close family.

((Hugs Terri)) xxx

Hello and welcome to WHL! I am so glad that you found us! Like you I have vasculitus which causes those lovely marks all over my limbs and I have Raynauds's which causes my toes to turn those love colors of the flag! I try to explain how my toes feel by saying that when they hurt and I put them in the warm bath water they feel so cold that they burn. Not sure if that makes sense to you but that is how it feels to me.

I too am having a hard time going off the steroids (actually going to the doctor at 11). We seem to be having a difficult time finding the right balance of methotrexate and steroids. It is a difficult balance and it usually takes awhile to get it right and even when you do, what you need may change somewhere down the road. Just a lovely part of this disease!

Anyway... I am really glad that you found us! Welcome to the WHL family

Peridot20_Gem
05-22-2011, 06:35 AM
Hello Michele43,

How are you feeling in yourself since you joined we, i do hope your abit pain free please keep we updated on how you are.

~Hugs Terri~ xxx