AA Patients in Phoenix area?

[annemvl]

Hi all!
I'm a newly diagnosed SAA patient and wonder if there are any of you in the Phoenix, AZ area? I was treated with Horse ATG at Mayo Clinic Phoenix, and was discharged about 2 weeks ago.

[wapost3]

Hi Anne,
I'm new to this forum, but I just happened to see your note. I'm in the Phoenix area out in Gilbert. I was diagnosed this summer with AA. Started with TTP but was treated with ATG Rabbit in Mesa Banner Baywood. I'm curious how are you doing after several months? Are you back to work on any kind of regular basis. I'm still off of work on Short Term Disability. Been getting my strength back slowly (very slowly) by going to the gym and taking walks, but no where near to what I was before I was diagnosed.

[SNichols]

Hello,
I thought I was all alone. Diagnosed SAA June 2010, ATG horse in Tucson UMC end of July. Two or three transfusions of RBC and Platelets in Aug.
Came home from the hospital taking: acyclovir bactrim cyclosporine flucanazole lisinopril was added in Oct. for blood pressure clonidine was added last week for blood pressure

My kidneys became toxic first of Dec. I was told to stop taking cyclosporine for a week. I stopped for three, I felt like I did before I was diagnosed. I am back on cyclosporine 200mg daily and everything else expect acyclovir

My levels from Sept to Jan
wcc 6.4 3.0
rbc 2.63 3.64
plt 122 156

I am 56 female 90 mins. from Tucson, I see a nurse practitioner more than my doctor, blood labs are every two weeks now and have to been in Tucson as other labs don't give the cyclosprine level fast enough.

May we keep talking? I would like to talk to somebody who knows what it is like. You both sound like you are in about the same place I am.
suzie 5.6

[susansr]

Originally Posted by Suzie5.6

Hello,
I thought I was all alone. Diagnosed SAA June 2010, ATG horse in Tucson UMC end of July. Two or three transfusions of RBC and Platelets in Aug.
Came home from the hospital taking: acyclovir bactrim cyclosporine flucanazole lisinopril was added in Oct. for blood pressure clonidine was added last week for blood pressure

My kidneys became toxic first of Dec. I was told to stop taking cyclosporine for a week. I stopped for three, I felt like I did before I was diagnosed. I am back on cyclosporine 200mg daily and everything else expect acyclovir

My levels from Sept to Jan
wcc 6.4 3.0
rbc 2.63 3.64
plt 122 156

I am 56 female 90 mins. from Tucson, I see a nurse practitioner more than my doctor, blood labs are every two weeks now and have to been in Tucson as other labs don't give the cyclosprine level fast enough.

May we keep talking? I would like to talk to somebody who knows what it is like. You both sound like you are in about the same place I am.
suzie 5.6

I could be called susan 5.5, but I go by Susansr. I am 55, have moderate AA; I was treated with horse ATG 1 yr ago. I am still taking tacrolimus, instead of cyclosporine, a Blood pressure drug too, and supplements of magnesium. I became very deficient in magnesium, having terrible muscle cramps.

I had a mild response to the ATG, and presently considering going into hospital for 2nd treatment. My platelets hover in the mid 20's, never rose beyond 29,000. I am transfusion independent, though for platelets. RBCS is another situation. I get a transfusion every 2-3 months just to maintain a normal number. WBC count is normal. So, what about you--where are your numbers now? It appeared your platelets responded quite well to the treatment, aside from a few other issues. How are you feeling now?

Will be interested to communicate with you either here or email, Susan

[Neil Cuadra]

Cross-reference: There is a Phoenix Community of Hope Support Group that meets monthly.