Reply To: my rituxin experience
I went to the MAYHOLE they were not helpful one bit they said we probably cannot help you and they were right I should have left after rectal they did all the testing I had back here it was negative here it was negative there not I have to downplay what they did when I speak to the judge….I went to see a Dr Younger in NYC one of the best for CIDP – EMG/NCS bang CIDP sent there by Katz a neuro in CT but these diseases are immune mediated CIDP is an immune mediated inflammatory disease something else is cooking them in my case it is thought my immune system was deficient causing autoimmunity which is a sub class of immune mediated diseases to see a neuro for the diagnosis of CIDP is fine by you need an immunologist to piece togther the immune part did they run IgG, IgA, IgM and IgE levels on you? Symptoms are no longer the issue they are pursuing and they hav done all the blood testing the need to ….I have co occuring hematological disorders…ANA as high as 1:2560 high immune comples, high ACE levels I am in a hyper autoimmune.immune state that is why I am reactive to some of these meds they rev me up worse very much so my body constantly makes auto antibodies a neuro is of little use for me he did his thing and that is it and I had a terrible reaction to IVIG and P/E like I said …the rituxan is not for the CIDP it is to stop the immune sytem form attacking your nerves I am sure you are aware of that that is why it is not approved because CIDP is generally a disese with an unknown origin, can be basically any autoimmune illness,virus, bacteria
this is a good article
A retrospective, observational and multicentre study on the use of rituximab in CIDP. 13 Italian CIDP patients were treated with rituximab after the partial or complete lack of efficacy of conventional therapies. Eight patients had co-occurring haematological diseases. Patients who improved by at least two points in standard clinical scales, or who reduced or discontinued the pre-rituximab therapies, were considered as responders.
RESULTS:
Nine patients (seven with haematological diseases) responded to rituximab: six of them, who were non-responders to conventional therapies, improved clinically, and the other three maintained the improvement that they usually achieved with intravenous immunoglobulin or plasma exchange. Significantly associated with shorter disease duration, rituximab responses started after a median period of 2.0 months (range, 1-6) and lasted for a median period of 1 year (range, 1-5).
so I wonder what may be driving your CIDP as a co occuing hematological disorder as mine since the docs I have are fighters for there patients there is talk I may get this I am not 100 % sure as of yet I have to wait my thought is whatever disease is occurring in your body if rituxan works on that disease it will help you CIDP is just a consequence of that disease
here is where I am
CIDP
epislceritis/
hashimoto
Encephalitis/vasculitis
decreased cortical perfusion
Low Levels of IgG subclasses
here is a section in here that mentions autoimmunity – the are relating this to my multi systemic autoimmune disease
Immunoglobulin G (IgG) subclass deficiency
X-linked agammaglobulinemia
Immunoglobulin A (IgA) deficiency
Immunoglobulin M (IgM) deficiency
Immunoglobulin E (IgE) deficiency
did I send you this
Immune-mediated diseases are conditions which result from abnormal activity of the body’s immune system. The immune system may overreact (or start attacking the body Autoimmune diseases are a subset of immune-mediated diseases.
which is also this
An immune-mediated inflammatory disease (IMID) is any of a group of conditions or diseases that lack a definitive etiology, but which are characterized by common inflammatory pathways leading to inflammation, and which may result from, or be triggered by, a dysregulation of the normal immune response. All IMIDs can cause end organ damage, and are associated with increased morbidity and/or mortality.
Inflammation is an important and growing area of biomedical research and health care because inflammation mediates and is the primary driver of many medical disorders and autoimmune diseases, including ankylosing spondylitis, psoriasis, psoriatic arthritis, Behcet’s disease, arthritis, inflammatory bowel disease (IBD), autistic enterocolitis, and allergy, as well as many cardiovascular, neuromuscular, and infectious diseases
in which CIDP is classified…I know enough about this crap Ijust do not know what will work……I know some have had good repose with cellcelpt so maybe a lupus for of CIDP also good reports with Immunosuppressive drugs are often of the cytotoxic (chemotherapy) class, including rituximab (Rituxan) which targets B Cells, and cyclophosphamide, a drug which reduces the function of the immune system. Ciclosporin has also been used in CIDP but with less frequency as it is a newer approach.[7] Ciclosporin is thought to bind to immunocompetent lymphocytes, especially T-lymphocytes depends what you read but cellcept can put one into remission as cyclophosphamide but what is you need a TNFa blocker that is a different class of drugs I just want something that helps there is a crap load of the……I know someone with RA a confirmed diagnosis she was on 4 different meds before they got the right one but if I win my court case and nothing works I am about ready to say game set match……as far as the Saco River we mainly went to NH and with younger children at the time we only floated I live by the ocean that is where I used to play on weekends surfing girl watching..lol more of the latter
high Levels of immune complexes
High levels of ANA
Bronchiectais
Hypogammaglobulinemia
Immunodeficiency states
Immunodeficiency states may be congenital or acquired. The most common congenital conditions (albeit rare) involve B-lymphocyte functions. Hypogammaglobulinemia in these cases may take one of the following forms[32, 33, 34, 35] :
I think you said you have co occurring hematological disorders right? Have they been defined? A lupus, etc….sjogrens all can play a part I am in an autoimmune state but it can take years for the disease to declare itself years I saw a doc at Baystate an immunologist that said I have an immune mediated multi systemic illness CIDP is just a part of it stem cell for any autoimmune is trail and there is a doc in Chicago but you have to have a defined illness and be accepted into the program…I do not care what they put in me as long as I can get relief I have an immunologist and a hematolgost in MA they say that fight fortheir patients …I have had a slightly elevated RF and ANCA so there may be talk of that approach I may have an autoimmune overlap syndrome