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Autoimmune Disorders Community
This is an un-mediated Patient-to-Patient Forum only. This forum is for questions and support regarding Autoimmune topics such as: Acute disseminated encephalomyelitis (ADEM), Addison's disease, Ankylosing spondylitis, Antiphospholipid antibody syndrome (APS), Aplastic anemia, Autoimmune hepatitis, Autoimmune Oophoritis, Celiac disease, Crohn's disease, Diabetes mellitus type 1, Gestational pemphigoid, Goodpasture's syndrome, Graves' disease, Guillain-Barré syndrome (GBS), Hashimoto's disease, Idiopathic thrombocytopenic purpura, Kawasaki's Disease,
Lupus erythematosus, Multiple sclerosis, Myasthenia gravis, Opsoclonus myoclonus syndrome (OMS), Optic neuritis, Ord's Pemphigus, Pernicious anemia, Polyarthritis, Primary biliary cirrhosis, Rheumatoid arthritis, Reiter's syndrome, Sjögren's syndrome, Takayasu's arteritis, Temporal arteritis, Warm autoimmune hemolytic anemia, Wegener's granulomatosis
help with warm autoimmune hemolytic anemia
by craig58, Feb 10, 2008 10:33AM
Hi,
I was diagnosed with AIHA a year ago. Have responded well to predisone for some time but now been on the roller coaster going from 14 down to 11 the last two times. Wondering if I am a novice at this compared to others. How long have others been fighting this. Have you stuck to the local guys or gone to large research hospitals?
Any comments welcome.
Craig58
I was diagnosed with AIHA a year ago. Have responded well to predisone for some time but now been on the roller coaster going from 14 down to 11 the last two times. Wondering if I am a novice at this compared to others. How long have others been fighting this. Have you stuck to the local guys or gone to large research hospitals?
Any comments welcome.
Craig58
Post Comment
I was diagnosed a year ago today. Have been on Prednisone the entire time. I also have had six Rituximab treatments. I have been as low as 5.6 and no higher that 11.2. I sought out a second opinion at a large university hospital, which is why I received Rituximab. It is a rollercoaster ride that I would love to get off of to.
I may have my spleen removed this year, as that is where the destruction is occuring. Not sure that the very expensive Rituximab is working for me.
Tamkat
I was diagnosed with warm AIHA last december. I was wondering if any of you had their teeth whitened or bleached? I believe there is a correlation here, the ingredient in these products are either carbamide peroxide or hydrogen peroxide. I relapsed twice and I remember bleaching my teeth around that time and also once shortly b4 first diagnosis. I'm having my spleen removed tomorrow, and hopefully that takes care of the problem.
I was diagnosed with AIHA at the beginning of summer and have been on the same roller coaster ride. Having a hemoglobin level as low as 2.2 and a red blood cell count as low as 8, i have been admitted to the hospital 3 different times during the summer but haven't been in about a month thankfully.
For about 2 weeks, maybe a few days less (my short-term memory is shot from I don't know what but im sure its everything combined) I was needing 2 bags of blood every other day, if i didn't receive the transfusions I would be in bad shape and feel like i was running a marathon to just get up and go to the bathroom or the fridge.
I have been on Prednisone this whole time but not responding at all to it. I am tapering down now and am at 10mg per day while i was at 80mg throughout the greater part of the summer. I was able to go down to 40mg right away and then 10mg every 5 days after that.
I have had 5 Rituxan treatments, 4 about a month or month and a half ago, and 1 recently since I relapsed again. Doctor isnt positive that it is working since i have also recieved a few bags of IVIG which he says slow down the breakdown of RBC but doesn't cure any thing. We are waiting to see if i respond to my latest Rituxcan treatment and will probably get another bag of IVIG to slow the break down again since I have relapsed.
To Astudillo: In response to your teeth whitening question, I did use a teeth whitening product earlier in the year but nothing really close to when I was diagnosed. If you find out that this is a cause or any thing more about this please respond. My doctor (large hospital doctor supposedly nationally known and all that) and I don't know and probably will never know what caused me to get AIHI but hopefully we can figure this out and i can go back to a normal life.