"CRONIC" GBS or maybe CIDP?
AnonymousSeptember 10, 2006 at 9:17 pm
I posted this on the GBS forum, and someone kindly suggested that I post it here…I had not heard of CIDP before the person on the GBS forum suggested it to me. My mom was recently (July 2006) diagnosed with GBS at 60 years of age. She had a severe asthma attack and pnemonia, and was also diagnosed with brittle asthma which evidently led to her GBS. She is not a ‘typical’ case at all…even has a lot of doctors scratching their heads. Her paralysis came on quite slowly…it took days for it to reach her waist. We got on it, and she received the plasmapheresis treatments and steroids which seemed to work well. Her blood type is incompatible for the immunoglobulin treatments. She went through physical and occupational therapy for about 2 weeks and seemed to be improving. She came home, and they weaned her off of her steroids. As soon as the steroids were out of her system, her symtoms started to reoccur more severely and more quickly. She immediately returned to the hospital (and is there now) and is being put on the highest dosage of steroids. I cannot imagine what this is doing to her organs. She seems to be improving a bit now, but she has been diagnosed with ‘cronic GBS’ which means she needs some kind of treatment for the rest of her life. They are looking into plasmapheresis or chemo therapy on an as needed basis and immunoglobulin treatment is not an option for her. I have not heard Chronic Inflammatory Demyelinating Polyneuropathy from any doctors yet, but I am shortly on my way to hospital to ask more questions concerning this. Has anyone else had experiences with CRONIC GBS? Could you tell me about it? Treatments? Options? Care? Recovery? Is anyone else not compatible for the immunoglobulin treatment? Why not?
AnonymousSeptember 10, 2006 at 10:01 pm
hi stephanie & welcome,
opt for the plasmapheresis [pp]. steroids & chemo have too many bad side effects. are they giving her at least 2400 mg of calcium/day to help ward off one of the side effects of prednisone [steroid she is prolly getting]? if not, they should be. sounds like it could be cidp, only cuz of the downgrade when the steroid was removed. even now there should be more pp & less steroid. ivig & pp both work abt 70% of the time. neurontin for pain. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousSeptember 11, 2006 at 5:12 am
I was told by my neuro when I had GBS that steroids do not help, infact it could make it worse. So if the steroids helped, it sounds more like CIDP. Thats if what he says is true. Its been about 2 years since he said I now have CIDP, but still has not started me on steroids. So I dumped him and moved to Texas. My new neuro thinks I have cornic GBS and maybe some other problems, so he is refering me to some other doc’s to check on other problems first. I just hope someone can figure it out so that maybe I can start getting better.
AnonymousSeptember 11, 2006 at 5:30 am
Stephanie, CIDP is the disorder which used to be diagnosed as Chronic GBS until the differentiation in the 1980s. GBS is actively damaging the peripheral nerves for upto 4 weeks, prednisone may exacerbate this disorder. Subacute GBS is active for 4 – 8 weeks and there can be benefical effects of prednisone here. 50% of these disorders are found to be triggered by certain infections occuring within two weeks of the onset of the GBS.
These infections are campylobacter jejuni food poisoning. Epstein Barr virus glandular fever (infectious mononucleosis), Cytomegalovirus throat infection and Mycoplasma Pneumoniae atypical pneumonia.
CIDP has no known triggers, is active for more than 8 weeks and responds well to prednisone if IVIG and plasmapheresis fail. There is a strong case for cytotoxic (anti cancer type) immunosuppressant treatment.
Most serious side efects of prednisone (osteoporosis, cataract, hypertension) occur after at least 6 months of usage though weight gain and very, very rarely steroid psychosis may occur before.
IVIG is not contra-indicated due to blood type but to the presence in our blood of antibodies to Immunoglobulin A (IgA). I hope this helps provide further questions for you. DocDavid
AnonymousSeptember 11, 2006 at 9:31 am
I want to add that there is IVIG available to people with the IgA deficiency. I was just talking with our home care nurse about it last week. It’s more expensive & harder to get but it is available.
Good luck to your mom & to you too. Ask LOTS of questions at the hospital & don’t just take their word for it. RESEARCH, RESEARCH, RESEARCH! That’s the best way to get info on this disease.
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