lupus causing AA

[mscrzy1]

I've been taking medication for lupus now for one month and just had my cbc run and my counts are............coming up!! The cause of my aplastic anemia all those years ago and the cause of my problems now seems to be lupus. I will have another cbc in one month and another appt. with my rhuematologist for definite confirmation. For anyone questioning if that could be the cause of your AA, I will tell you that my test run by my hematologist for lupus was negative. I had to go to a rhuematologist and even then I only showed one of the 4 indicators for lupus on my blood test. She explained that her field of expertise is never black and white. This was a shot in the dark that turned out to be dead on. I urge anyone who is battling AA to get tested for lupus as well. Lupus is managable with medication, but can be life-threatening without. Amongst other things, it will cause kidney failure if not treated. I will be getting a kidney panel run on me since it was so long ago that I originally battled my AA.

[triumphe64]

I suggest doing a google search on "aplastic anemia" + "lupus". I heard of a relationship between PRCA and lupus several months ago and found some applicable journal articles. A lot of these autoimmune diseases are highly correlated.

[Lbrown]

Hi Angie,

What is the treatment for lupus? Glad your AA is resolving!

Deb

[mscrzy1]

I'm currently taking Plaquinil, which is an antimalarial drug.

Antimalarials
Antimalarials are used in combination with steroids and other medications, in part to reduce the dose required of the other drugs. Antimalarials are most often prescribed for skin rashes, mouth ulcers, and joint pain, but also can be effective in mild forms of lupus where inflammation and blood clotting are a concern. Antimalarials improve lupus by decreasing autoantibody production, protecting against the damaging effects of ultraviolet light from the sun and other sources, and improving skin lesions.

The two types of antimalarials most often prescribed today for lupus are hydroxychloroquine (Plaquenil®) and chloroquine (Aralen®). Unlike the rapid response seen with steroids, it may take months before antimalarial drugs improve your lupus symptoms.

Side effects from antimalarials are rare and usually mild; they include upset stomach and changes in skin color. These side effects usually go away after the body adjusts to the medication. In high doses certain antimalarial drugs may damage the retina of the eye, causing vision problems. With the low doses of antimalarials used in the treatment of lupus, the risk of this complication is extremely low. However, as a precaution, people treated with antimalarials should see an eye doctor (ophthalmologist) regularly.

It's also treated with these drugs....Some of these drugs will be familiar to you.

Immunosuppressives (Immune Modulators)

Immunosuppressive medications are used to control inflammation and the overactive immune system, especially when steroids have been unable to bring lupus symptoms under control, or when a person cannot tolerate high doses of steroids. However, there can be serious side effects from these drugs, so if you are being treated with immunosuppressives you should be carefully monitored by your physician. Immunosuppressive drugs reduce your body’s ability to fight off infections, and increase the chances that you could develop viral infections such as shingles (chicken pox, or herpes zoster). It is extremely important that you pay attention to even the smallest cut or wound, and let your doctor know if any sign of infection begins, such as redness, swelling, tenderness, or pain. These drugs may also increase your risk for developing cancer.

Each immunosuppressive drug has unique side effects. Therefore it is important that immunosuppressive drugs be given only by physicians who are experienced with the use of these medications.

Cyclophosphamide (Cytoxan®) was developed to fight cancer. Although in its early years of use it was taken in pill form, today Cytoxan is taken through the vein (intravenously, or IV). It has been shown to improve kidney and lung disease, but can affect a woman’s menstrual cycle and can cause bladder problems, hair loss, and sterility.

Methotrexate (Rheumatrex™), also developed to fight cancer, is known as the "gold standard" -- the best drug -- for the treatment of rheumatoid arthritis. It has also been shown to be very effective in treating skin lesions, arthritis, and pleuritis in people with lupus. However, the drug can cause sun-sensitivity, liver damage, including cirrhosis, and lung infections. If you are taking this drug you should not drink alcohol, especially if you have a history of kidney disease. If you are taking high-dose methotrexate you should not use NSAIDs; caution is also advised when taking aspirin. Nausea, mouth sores, and headaches are the most common side effects of methotrexate.

Azathioprine (Imuran®) was developed to prevent rejection of kidney transplants. It blocks inflammation pathways in lupus and helps to lower the steroid dosage and improve liver and kidney disease. However, it may cause pancreatitis and an allergic form of hepatitis, so liver function tests and blood counts should be done regularly.

Corticosteroids
Corticosteroids (also known as glucocorticoids, cortisone or steroids) are synthetic (man-made) drugs designed to work like the body’s naturally occurring hormones produced by the adrenal glands, in particular cortisol. Hormones are the body’s chemical messengers that regulate most of the body’s functions. Cortisol helps regulate blood pressure and the immune system, and it is the body’s most potent anti-inflammatory hormone. Corticosteroids prescribed for autoimmune diseases are different from the anabolic steroids that weightlifters and other athletes sometimes take to increase strength.

Steroid medications work quickly to decrease the swelling, warmth, tenderness, and pain that are associated with inflammation. They do this by lessening the immune system’s response. Prednisone is the most commonly prescribed steroid for lupus. Prednisolone and methyl-prednisolone (Medrol®) are similar to prednisone, and some physicians prefer to prescribe these if you have liver problems.

Most people take steroids in pill form, but topical creams or gels are often used for cutaneous (skin) lupus. Steroids in liquid form are sometimes injected into muscles or directly into joints, and in some cases into skin lesions. Pulse steroids are large liquid doses given intravenously (injected into a vein) over several hours; the beneficial effects can last for weeks so pulse steroids are sometimes prescribed to control a lupus flare, or for people who cannot tolerate steroids in pill form.

Your doctor will try to keep your steroid dosage at the lowest effective level. Once the symptoms of lupus have responded to treatment, the steroid dose is gradually reduced (tapered). As an alternative to tapering, or stepping down the steroid dose, your doctor may choose to have you take steroids on an every-other day basis -- one day on, one day off.

Steroids can produce a variety of side effects. The most common are changes in appearance (acne, a round or moon-shaped face, weight gain due to increased appetite, and hair growth). Steroids can cause fluid retention and a redistribution of fat, leading to a swollen face and abdomen, but thin arms and legs. Also, the skin becomes more fragile and bruises easily. Steroids can suppress growth in children. Steroids can also cause irritability, agitation, excitability, insomnia, or depression. These changes in appearance and mood are more apparent with high doses of steroids.

I got these quotes directly from the Lupus Foundation of America at http://www.lupus.org/webmodules/weba...246&zoneid=525

[mscrzy1]

Originally Posted by triumphe64

I suggest doing a google search on "aplastic anemia" + "lupus". I heard of a relationship between PRCA and lupus several months ago and found some applicable journal articles. A lot of these autoimmune diseases are highly correlated.

Thank you! Yes, I have done some research and have found some relation between AA and lupus. This research in particular: http://www.ncbi.nlm.nih.gov/pubmed/17039179

[Leung]

Hi, Angie,

Can you share more about your case? Do you have hypocellular marrow based on BM biopsy? What specific tests have you done for Lupus? On what basis did your doctor diagnose that it was Lupus causing your AA? What medication are you taking for Lupus apart from Plaquinil? Are you also taking steroid? You said your counts are coming up after taking medication for one month. What were your counts before and after medication?

My teenage niece was diagnosed AA 3 years ago. At the onset of the disease about 4 years ago, my niece had reynauds and pancytopenia and our doctor suspected Lupus. My niece then had blood test for Lupus but were negative. She was later diagnosed AA after a few BM biopsy. Prior to receiving ATG in August 2010, she was tested ANA once more and again negative. She only had mild response to ATG. After being RBC transfusion independent for a year, her blood counts have recently declined back to pre-treatment levels, and now requires transfusion again. After reading your post, I wonder whether my niece’s case could also be Lupus causing AA. If so, her treatment might be heading in the wrong direction. Would appreciate if you could share more details of your case. Thanks.

Leung

[mscrzy1]

Originally Posted by Leung

Hi, Angie,

Can you share more about your case? Do you have hypocellular marrow based on BM biopsy? What specific tests have you done for Lupus? On what basis did your doctor diagnose that it was Lupus causing your AA? What medication are you taking for Lupus apart from Plaquinil? Are you also taking steroid? You said your counts are coming up after taking medication for one month. What were your counts before and after medication?

My teenage niece was diagnosed AA 3 years ago. At the onset of the disease about 4 years ago, my niece had reynauds and pancytopenia and our doctor suspected Lupus. My niece then had blood test for Lupus but were negative. She was later diagnosed AA after a few BM biopsy. Prior to receiving ATG in August 2010, she was tested ANA once more and again negative. She only had mild response to ATG. After being RBC transfusion independent for a year, her blood counts have recently declined back to pre-treatment levels, and now requires transfusion again. After reading your post, I wonder whether my niece’s case could also be Lupus causing AA. If so, her treatment might be heading in the wrong direction. Would appreciate if you could share more details of your case. Thanks.

Leung

Ok, let me see if I can answer all your questions here... When I originally was dx with AA 15 years ago, I had hypocellular bone marrow via my BMB. I was given the ATG/cyclosporin/steroid regimin and didn't seem to have a response. About a year later with me not medicated, but simply living on transfusions waiting to decide my next treatment plan, my counts started to recover on their own. I seemed to be in remission this entire time with my counts gradually getting better and better as the years passed. What doctors have found most fascinating was that while I was pregnant with my two girls, my counts were the best they had ever been (which they believe may have been because pregnancy naturally suppresses your immune system). After that my counts have very gradually started to drop, but ever so slowly. Just 1 1/2 years ago, all three lines have dropped below the "normal" range and have continued to drop. Once I dropped below the "normal" range, I developed the reynauld's and pantcytopenia together. My BMB is actually showing fairly cellular bone marrow, so they don't believe I've gone aplastic this time. They believe that I've developed evan's syndrome now. My hemotologist originally tested me for lupus and the test was negative. He still passed me on to a rhuematologist simply because of the trend they saw with my pregnancy and the reynauld's combined with my dropping counts. My rhuematologist said that she doesn't trust the regular lab work run by general hospitals because they use a basic testing and many times it will show a false negative. She uses a specific lab in LA that is the only lab she says that she trusts. When she did my testing, I showed up positive for ANA, but negative for everything else. She did say that normally in order to form a definitive dx for lupus, she would look for 4 indicators from the blood work and I only had 1, the positive ANA. She said, though, that lupus isn't the same for everyone and has many different manisfestations and indicators. With what she is seeing with me, she feels very strongly that it is lupus. I am currently on Plaquinil. She said that if she doesn't get the results she wants to see from Plaquinil, she will be changing me to steroids or a harder immunosuppressant drug. I've only been on this medication for 1 month and she said that it will take a full 3 months to really see a big difference, but in 1 1/2 years I have never seen my platelets go anywhere but down. This last cbc showed my platelets up 19,000 points and all my other counts stabilize. She called me and said that she feels it's a step in the right direction and is hopeful that we will see my counts progressively rise as the months go on. Sorry for the book! I hope I was able to answer all your questions!

[mscrzy1]

I forgot to add that if your niece is having issues with reynaulds as well as her AA, I would recommend having her talk to her hematologist about seeing a rhuematologist as well. It doesn't hurt to see what he/she has to say and it really is refreshing to get a perspective from a doctor in another field. And, like my rhuematologist, that is their specialty and they may have a particular lab that they trust with their labwork since it seems that results can be so sensitive to testing. I had never seen a rhuematologist when I was battling AA and my rhuematologist now was surprised by that.

[mscrzy1]

I also must add that since I've been surfing the lupus forums, I'm reading that it seems it is common to get a negative test result for lupus, but still end up having it. Check out some of the lupus forums and you'll be surprised by how common it is.

[Leung]

Hi Angie,

Thanks a lot for your sharing. I think we may talk to our doctor in next appointment. In fact I have asked him several times before whether it could be Lupus, but he thought it unlikely.

Do you experience any side effects with Plaquinil?

Leung

[mscrzy1]

When I first started the medication, I had some dizziness and nausia. I've found that taking it immediately before bed seems to work best so I sleep off any effects. Otherwise, I seem to be tolerating it pretty well.