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AA Aplastic anemia

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  #1  
Old Tue May 15, 2012, 01:23 AM
Ellen McDonough Ellen McDonough is offline
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aplastic anemia and other autoimmune illnesses

Just wondering if others have had severe aplastic anemia and then developed other autoimmune illnesses after treatment with Gengraf and immunotherapy. If so what kinds of autoimmune illnesses have others been diagnosed with? Thanks,Ellen
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Ellen McDonough--Denver,Colorado

[57 year old,diagnosed with Severe Aplastic Anemia 4/2009.
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  #2  
Old Tue May 15, 2012, 01:30 AM
triumphe64 triumphe64 is offline
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It is common for people to have more than one autoimmune disease.
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Dallas, Texas - Age 75 - Pure Red Cell Aplasia since 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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  #3  
Old Tue May 15, 2012, 01:27 PM
Ellen McDonough Ellen McDonough is offline
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What is PRCA?
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Ellen McDonough--Denver,Colorado

[57 year old,diagnosed with Severe Aplastic Anemia 4/2009.
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  #4  
Old Tue May 15, 2012, 01:56 PM
triumphe64 triumphe64 is offline
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Quote:
Originally Posted by Ellen McDonough View Post
What is PRCA?
Pure Red Cell Aplasia.

I don't make red blood cells only. It can be a symptom of several conditions, but mine is autoimmune.
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Dallas, Texas - Age 75 - Pure Red Cell Aplasia since 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 Wed May 16, 2012, 08:52 AM
milliken2 milliken2 is offline
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Auto Immune Diseases anf MDS

Ellen;

Earl has 2 other auto immune diseases - one is Antiphospholipid Antibody Syndrome (APS or Hughes Syndrome) where you get clumped platelets or what they term 'sticky blood'. He has been on a blood thinner for over 8 years for that - the current one is Arixtra - but he hasn't had it since his MDS was dx since his platelet level is so low. The other one is Leukocytoclastic Vasculitis. For that one, he had been on Plaquenil and Prednisone. But there, again, when he was having the blood issues - I checked with his rheumatologist, and he said to stop the Plaquenil. He has been off the Arixtra for about 5 months, and off the Plaquenil for about 3 months. When we saw Dr. Sekeres last week - he said that the combination of receiving those 2 drugs for a long period of time MAY - and I stress may - have caused the MDS. But - the damage is done, and the drugs are long gone from his system. Dr. Sekeres also said that it may not be related at all, so I have no idea. Earl is still getting 60,000 units of Procrit weekly that I administer to him. He also still has a PICC line in place which I flush daily.
Good Luck to You.

Beth
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Beth - R.N., B.S.N and wife of recently diagnosed husband who has been classified at stage 4 MDS. and I can't help the one I love the most.
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  #6  
Old Wed May 16, 2012, 08:25 PM
Chirley Chirley is offline
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Hi Beth,

I used to be an Infection Management RN.

I find it interesting that you flush Earls PICC every day. Where I worked we did the PICC dressings once a week and when needed and heparin locked the PICC which could then be left for a month.

Do you flush daily so as not to use heparin? When I have my port used it is disconnected every day and heparin locked every day for 5 days in a row, they do this even when my platelets are low. I was worried about developing anti platelet antibodies because the port doesn't bleed and the heparin is always just flushed in every day because it can't be withdrawn. Luckily, no antibodies yet.

Interestingly, my brother has Lupus with thrombocytopenia and I have a cousin with Lupus and anti phospholipid syndrome. My poor cousin is only 14 years old and has multiple PEs and is on Warfarin and has had an IVC filter inserted.

Regards

Chirley
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Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
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15q11.2 deletion
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  #7  
Old Wed May 16, 2012, 08:35 PM
triumphe64 triumphe64 is offline
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Here is a list of autoimmune diseases.

http://www.aarda.org/research_display.php?ID=47
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Dallas, Texas - Age 75 - Pure Red Cell Aplasia since 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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  #8  
Old Thu May 17, 2012, 03:53 PM
Lisa V Lisa V is offline
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Quote:
Originally Posted by Ellen McDonough View Post
...and then developed other autoimmune illnesses after treatment with Gengraf and immunotherapy.
Ellen, have you had experience with this happening? It is not uncommon for someone to have more than one autoimmune condition, but if you are suggesting that IST might stimulate others, that is the opposite of how it's supposed to work. Immune suppressants can certainly increase your susceptibility to other opportunistic infections, but they are meant to keep autoimmune attacks in check. Just curious why you asked.
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-Lisa, husband Ken age 60 dx SAA 7/04, dx hypo MDS 1/06 w/finding of trisomy 8; 2 ATGs, partial remission, still using cyclosporine
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Old Thu May 17, 2012, 11:54 PM
Ellen McDonough Ellen McDonough is offline
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response to question

I asked the question because I was thinking possibly I have some underlying autoimmune disease that was being treated by IST but when I weaned down on the dose of IST whatever autoimmune problem , unmasked itself. I didn't mean that IST caused a new illness.
I just am interested in learning what other autoimmune illnesses other people have had in addition to SAA because so far I have seen about 10 different doctors who think I have some other autoimmune illness that was being treated by IST but no one has figured out what it is yet.
I think this website is a great place to maybe find answers!
Thanks everyone for your responses!!
Ellen
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Ellen McDonough--Denver,Colorado

[57 year old,diagnosed with Severe Aplastic Anemia 4/2009.
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  #10  
Old Mon May 21, 2012, 04:51 PM
mscrzy1 mscrzy1 is offline
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It has definitely been shown that if you have one autoimmune disease, you are more likely to have more. I have celiac's disease and reynaud's syndrome. They thought I also was dealing with lupus and evan's syndrome. Now, they are starting to rethink the lupus idea and possibly the evan's as well. And, yes, many of the treatments used for AA, can also be used for other autoimmune diseases which, in turn, masks them.
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Angie

36 yr. old, dx SAA in Jan 1996, treated with ATG in Mar. 1996, off cyclosporine Sept. 1996, last blood transfusion in Aug. 1997, slow decline in counts again November 2010, AA and current count decline thought to be caused by lupus, currently taking 400mg Plaquinil
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  #11  
Old Wed May 23, 2012, 12:13 AM
Ellen McDonough Ellen McDonough is offline
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Angie and Triumph 69,
Thanks for your replies.It is helpful to learn that other autoimmune diseases come up along with SAA.
I really wish the doctors could figure things out.So far I am stable with the SAA[still partial remission -platelets run low] but have new diagnosis of gastroparesis -unknown cause and these awful temporal headaches.All the blood work so far is normal for ESR, c reactive protein , all these rheumatology tests, immunoglobulins, liver functions, ultrasound of right upper abdomen normal although it hurts even with the seatbelt hitting there or lying on the right side while sleeping.
It 's frustrating to not know what it is.My SAA was like that for awhile then --BOOM I sunk and we discovered it.
I LOVE this website!!!!You can learn so much from other people who have been down this road too.
Thanks again-Ellen
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Ellen McDonough--Denver,Colorado

[57 year old,diagnosed with Severe Aplastic Anemia 4/2009.
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  #12  
Old Thu May 24, 2012, 05:05 PM
Robi1Knobi Robi1Knobi is offline
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Hi Ellen

I'm a NICU nurse now, used to do med-surg and ortho-neuro. Some of these autoimmune diseases are genetic, which can predispose you to other auto immune diseases. I have moderate Aplastic Anemia with TERC mutation(remember that? RNA...), which predisposes me to pulmonary fibrosis (I have mild) and liver cirrhosis. If you have a genetic mutation like me, you may also be predisposed to something...I see Dr. Neal Young at NIH, where they study our diseases...if you haven't seen him yet, you may want to. All the testing is free, can save you hundreds to thousands of dollars in a lifetime...good luck, hope you DON'T have anything else, but if you do, have a pity party then put your big girl pants on and do things that make you happy ). hugs, Linda
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Linda, 47 yo, married, mother of a teen, moderate AA w/ TERC mutation (2007 NIH), Pulmonary Fibrosis 2010, was on Danazol study (Aug 2011-2013 & restarted 9/14/15), last transfusion May 2011. On Promacta now. Needing a double lung and stem cell transplant.
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  #13  
Old Wed May 30, 2012, 01:16 PM
Ellen McDonough Ellen McDonough is offline
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Hi Linda,
I have seen Dr Neal S Young at the NIH May of 2011. He is the doctor who recommended the Cyclosporin wean.I know he is the guru to see!I was very lucky to get to there@!!!So far my doctors here have not recommended contacting him and I tried emailing him when I started noticing these new symptoms and he deferred to my doctors here in Denver,Colorado.Should I try contacting him again by email? So far the only new diagnosis is gastroparesis.I am waiting for biopsy results and a PET scan results right now.I have been tempted to contact Dr Young but I wanted to see what shows if anything.He is such a busy man .Isn't he the one who invented immunotherapy in aplastic anemia ?
I was wondering how do I put my diagnosis and treatment history under my posting on this webpage like all of you have done? It would be nice so I don't have to type it in every time.
I was wondering if alot of you guys who have other autoimmune diseases are taking Prednisone? I was on that drug for about 6-8 weeks. It helped the symptoms to disappear I am off now and the symptoms of temporal headache tinnitus and right upper abdominal pain are back.
Let me know what you think about contacting Dr Young again everyone.
Thanks,Ellen
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Ellen McDonough--Denver,Colorado

[57 year old,diagnosed with Severe Aplastic Anemia 4/2009.
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  #14  
Old Wed May 30, 2012, 09:15 PM
donna j. donna j. is offline
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Hi Ellen,

I am still figuring out how to best utilize this web site myself, but I do know that if you go into "my settings" and then "edit signature", you can write your profile and have it appear at all times. I really value reading each person's profile as they post, so I have an idea of their illness, age, counts, etc. I also am grateful for those who continually update their information to remain current.

Donna J.
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f68 MDS; abmt 1/12. ABO mismatch 11 mos. (70) transf. Ferr 3-5k. 8 phlebot. AGVHD to CGVHD. skin,eyes. lungs as of 10/13. muscle weakness &osteo long term steroids.photopheresis 2x wk as of 3-15.pred 20 eod,acyclovir, mepron, voriconazole, pantropazole, lisinopril, montelukast, anoro, azithromycin.
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  #15  
Old Thu May 31, 2012, 04:10 AM
Neil Cuadra Neil Cuadra is offline
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