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  #1  
Old Fri Dec 7, 2012, 09:08 PM
DebbieS DebbieS is offline
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Join Date: Dec 2012
Location: Snohomish, WA
Posts: 4
New Member - PRCA

I am a 60 year old active woman that seemed to loose all energy over this last summer. I kept putting off going to the doctor thinking that I must be getting low on iron -- having recently become vegetarian.
By the time I saw my doctor -- she sent me straight to hospital. My hematocrit was 17. Four pints of blood on Halloween for me. I have been diagnosed with PRCA -- possibly associated with a thymoma removed in early 2001, or a medication I had been directed to take within the last year. I was somewhat stable the first few weeks blood draws -- but just took my second transfusion of one pint (hematocrit down to 21.9).
I just started taking 100 mg cyclosporine 3 times a day.
Here's hoping!
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  #2  
Old Fri Dec 7, 2012, 09:30 PM
Neil Cuadra Neil Cuadra is offline
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Location: Los Angeles, California
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Hi Debbie.

Your story is similar to that of other patients we're heard from. You don't know you're sick, just thinking you're rather tired. Eventually you learn what's really wrong and become more aware of how unusually tired you've been.

Aplastic anemia is rare enough, but PRCA is even rarer. Have you found a doctor who is familiar with treating PRCA?
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  #3  
Old Fri Dec 7, 2012, 10:23 PM
DebbieS DebbieS is offline
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Join Date: Dec 2012
Location: Snohomish, WA
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No One Seems to Know what they are doing

No one seems to have a routine for me. The last two days have been a fiasco -- a patient advocate called me today four times to apologize for all that went wrong. It seems the new system combining the hospital's existing medical personnel with the Seattle Cancer Care Alliance system was supposedly at fault. I had wanted to ask my doctor how many patients with this condition she had treated but did not want to appear cheeky. I do like her and feel at ease communicating with her this far.
After reading some threads on your site -- I can see why I get odd looks from the medical personnel.
I have no idea what to do. I may start seeing a rheumatologist at some point . Any recommendations would be gratefully appreciated.
Sincerely,
Debbie
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  #4  
Old Sat Dec 8, 2012, 12:25 AM
triumphe64 triumphe64 is offline
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Location: Dallas, Texas
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Debbie,
Think of it as being part of a very select club. Doctors will tell you PRCA is "not very common." That means they have never actually seen anyone with it. The good news is that it is much better to have than the other conditions discussed on these boards. The bad news is that few doctors are experienced in the subtleties and variations or fully up to date on the latest treatments. It took me three years to find a good doctor, and when that happened I knew that everything would be OK. I now have two doctors that I see, and my Hg has been at the bottom end of the normal range for six months now.

My doctor here in Dallas has seen a dozen or so cases over her long career, I figure that is one every three years. I am currently her only PRCA patient, but I am well connected to a key person at the local medical school and he hand selected her for me. I also go to Dr. Maciejewski at The Cleveland Clinic. He is a researcher with a special interest in PRCA. At last count, he had seen 26 PRCA patients.

It would be a good idea to call Leigh Clark, the Patient Educator at AA&MDSIF. Call (800) 747-2820 press option 1 or email help@aamds.org. I'm sure she can guide you to a good doctor in your area.

A thymoma can cause PRCA, but the treatment is to remove the thymus. I am not aware of a delay in causing PRCA after it is removed. Why are you considering seeing a rheumatologist?

Getting the meds adjusted to the proper levels is frustrating. That is one reason you want an experienced doctor. There are trade offs from the rise in red cells versus the side effects and interactions of any meds you take.
__________________
Dallas, Texas - Age 77 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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  #5  
Old Sat Dec 8, 2012, 04:59 PM
DebbieS DebbieS is offline
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Location: Snohomish, WA
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Thank You for the Advice

Thank you both for your advice. I will be seeing the rheumatologist for some kind of mystery skin condition that I have been dealing with for several years -- I have been told it is perhaps a "cousin" of scleroderma. I have recently seen a reconstructive plastic surgeon for the scars it leaves behind. The cartilage on the end of my nose has been damaged and reduced on one side. Scleroderma is another associated condition of thymoma.
I also thought that if the thymoma was removed -- that many of the associated conditions disappeared or would not develop -- not so with me.
I will get in touch with the group you mentioned -- it would give me a great deal of comfort seeing a doctor more versed in treating this condition.
Thank you for your warm welcome to your site.
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  #6  
Old Sat Dec 8, 2012, 06:36 PM
triumphe64 triumphe64 is offline
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I'm going to cut the steps of logic as to why I did the following Google search "LGL + scleroderma" but here is one of the results I found. Do not panic at the name. Dr. M tells me it is not properly named and is not as bad as it sounds.

http://moffittcancercenter.com/moffi.../article3.html

PRCA is common with LGL as are many autoimmune diseases. Dr. Maciejewski has done a lot of research regarding T-Cell mutations in LGL. He told me I have the defect he has identified, even though I don't have LGL. I know that doctors at NIH are looking at LGL relating to all the diseases discussed on these boards. When they do venn graphs of how these diseases relate, they have LGL as part of them, but represented with dashed lines.

These findings may not be familiar to all hematologists because LGL is also rare. You might want to remind yours of the relationships.

Both Dr. M and my local doctor have told me the treatment for LGL and PRCA is the same.
__________________
Dallas, Texas - Age 77 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/

Last edited by triumphe64 : Sun Dec 9, 2012 at 04:35 PM.
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  #7  
Old Sun Dec 9, 2012, 04:42 AM
SolidOrange SolidOrange is offline
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Please see my post on LGL

Hi Debbie and Triumphe64,

Yours was the very first thread I read upon joining this forum a few hours ago and searching for LGL. Please read my post here that is relevant to LGL.

http://forums.marrowforums.org/showt...6316#post26316

Thanks!
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