Home > Case Studies and Scientific Research, IVIG, Uncategorized > Article re: IVIG used in comatose HE patient

Article re: IVIG used in comatose HE patient

Today I added the following article to our database of Case Reports and Research. It was published late in 2010, and had previously escaped my attention.  This may be helpful for those looking for documented evidence for use of IVIG in HE :

Successful response to intravenous immunoglobulin as rescue therapy in a patient with Hashimoto’s encephalopathy.

R. Cornejo, P Venegas, D Goñi, A Salas, and C Romero

BMJ Case Rep. 2010 Dec 29

Full Text:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3027904/

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  1. Michell Fuxan
    February 22, 2013 at 11:46 pm

    My name, as presented… Michell. I have veen diagnosed with HE for several years. No on seems to be able to provide recent literature, research, that I need for my awesome specialists, and for me. I was an RN with BSN now for over 20 years. I graduated with a 4.0 out of 4.0 when I obtained a MSN with national board certificaion of a Family nurse practitioner. I had a special neurologist who recefrex me fo another neurologist who confirmed dx of systemic lupus, which I have been diagnosed since 2005. Sjogrens since 1995 and hyperthyroidism 1994. I have been keeping up on HE research, as I love research, especially on this topic. The steroids were tapered from 30 mg to 5mg over a year. It hurt and made me sick, I remembered why I started it. But not first for the brain, and diagnosed sleep and cognitive problems, but I was getting hD osteoporosis, osteopenia, blood sugar problems,and so much more. My endo cri ologist finally got me on hydrocortisone. I have weaned unexpectedly to 5mg BID. I started with 4 5mg tabs in am and 2 in pm. I was dropping bp every morning and having severe chronic hyponatremia… I have so much pain. I’v connective tissue, tissue pain, muscle and joint pain i use stretching, use tools, and for almost 7 yrs. I have had deep tssue therapy, I have had all symptoms on a list of HE I found. One of the first is tremmor. Now prednisone is gone Now hydrocortisone decreased, everthing is worsening. We also began decreasing imurran 50 mg BID to 1 and 1/2 in the evening. I am seeing huge decline. Lupus like syndromes/flares seem to occur. My rhem wants to dx HE. Not anymore, dspite declines in many labs indicating sle return… fibromyalgia, dx in 2001 je won’t acknowledge. Do I return to the one neuroimmnologists ? Who saw me once as third to dx HE? Do I go to my neuro? He has seen me before I barely had nerve pain and balance, tremmor and other issues sleep apnea…. he sa me make 4.0 but I began having days and times my mind was altered. It progressed. I saw a pain specialist for a year. 3 times every 2 years I get a sleep study, mental, cognitive test to see my delayed processing. But I have been doing mensa pucilze

    I was on 30 mg of prednisone for 6.5 yrs.

    • February 23, 2013 at 4:32 pm

      Personally, I have been on 4mg clonazepam, 100mg Imuran and 20mg hydrocortisone daily for about 2.5 years. If ANY of these medications are changed, I relapse. If I even forget to take my morning dose, I start to feel symptoms return by the evening. These three medications are critical to my normal cognitive and physical functioning. I have tried countless others over the years and this is my magic cocktail.
      I’m in school pursuing my BSN and MSN, I have 2 years to go. I just tell doctors and nurses that I am a nurse and they seem to respect my knowledge more. Go to whichever doctor will put you back on the higher dose of hydrocortisone (I believe that hydrocortisone is better tolerated by most people – less side effects), and up your Imuran as well. You may have already checked, but the max. dosage of Imuran is based on your weight. I went from max down to when I relapsed, then stayed at the dose just above that. I find the Imuran is easier to dial in a working dose than the other medications. Once you’re stable again on Imuran, play with the hydrocortisone dose to get that as low as you can. That’s my opinion. Best of luck and health to you.

  2. February 25, 2013 at 11:21 am

    Michell, thank you for sharing your story. I want to be clear that we cannot provide medical advice on this site — only our own experiences as people with HE.

    I agree wholeheartedly with what scientistseeking wrote about the importance of making clear our (that is, we as patients) knowledge and experience when dealing with medical professionals. This seems to be critical in getting them to really listen to what we have to say, and to ensure they will communicate openly with us.

    I also agree that different treatment regimens work for different people. One patient may respond beautifully to periodic IVIG, while another may find Cellcept or Imuran is the magic bullet. Still others will need daily low dose steroids for the rest of their lives. In the case of scientistseeking, she has hit upon the cocktail that allows her to function at a level that I can only dream of.

    Do insist on a physician who will take your treatment seriously and will try different things to find what works best for you. Most of us consider ourselves very, very lucky if we can find a neurologist and/or neuro-endocrinologist who will listen to us and will dedicate him/herself to finding what works to get us to be as functional as we can possibly be.

    Best wishes to you.

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