Additional Autoimmune Disorders Plus CIDP
February 11, 2015 at 1:21 pm
I was finally diagnosed with CIDP after years of slow deterioration of nerves in my legs. During the last four years I have had IVIG but have not seen an improvement in my condition. I am being weaned off of it and now have reached 12 weeks intervals. Due to complications I will not get another dose. During the four years I have developed other autoimmune disorders. These include skin problems, rheumatoid arthritis, retinal problems, stomach problems, and lung inflammation. I find myself being referred to various specialists. Previously, I was in good health and never had any of these issues. The rhematologist wants to put me on Methotrexate and the dermatologist said that it would also help my skin problem. I am not sure why all of these problems surfaced during the four years since my diagnosis. As the old saying goes: “When it rains, it pours”…I think it is applicable to me. Has anyone else developed other autoimmune disorders besides CIDP???
February 11, 2015 at 1:54 pm
I was diagnosed with Buergers disease a year before i was CIDP. Buergers attacks the veins in the feet/legs, hands/arms, making the vein walls thicken and shut off the blood supply to those areas.
February 11, 2015 at 2:15 pm
Hi “ldwilliams”..Thanks for the reply…I was curious how many would answer this post. It seems logical that if your immune system has already gone “haywire” then you could develop other autoimmune problems as well. My father also had rheumatoid arthritis, so maybe I inherited some predisposition to develop autoimmune disorders. I wish there were more research done on this.
February 11, 2015 at 2:48 pm
Does make sense doesn’t it. interestingly, there is no real treatment, let alone a cure for the Buergers. however there are now some trials being done that does offer some hope, but nothing like say the IVIG option.
research will only occur i feel if money is thrown at it, as there isn’t a high percentage of those with it.
February 11, 2015 at 7:31 pm
I started with GBS, and then it went into CIDP, then MFS, now Anemia. Who knows what’s next.
Once our autoimmune systems learn how to produce White Blood Cells that attack “self”, many things that trigger our immune systems into action (the common cold, measles, shingles, or flu bugs, including shots that are supposed to cause our immune systems to develop antibodies) can also trigger production of cells that attack “self”. As a result, I think we are more susceptible to other types of autoimmune disorders than those who have not had CIDP (or related) disease.
Here’s a summary of the types of cells involved:
• B lymphocytes (B cells) are antibody-producing cells that are essential for acquired, antigen-specific immune responses. Fully mature B-cells are called plasma cells that produce antibodies, immune proteins that target and destroy bacteria, viruses and other “non-self” foreign antigens.
• T lymphocytes (T cells): Some T cells help the body distinguish between “self” and “non-self” antigens. Others initiate and control the extent of an immune response, boosting it as needed and then slowing it as the condition resolves. Other types of T cells directly attack and neutralize virus-infected or cancerous cells.
• Natural killer cells (NK cells) directly attack and kill abnormal cells such as cancer cells or those infected with a virus.
My B-Cells became hyper-active about a year ago, making a bunch of clonal versions of themselves. This gave me a form of non-Hodgkin’s lymphoma that interfered with Red Blood Cell (RBC) production (hence, my anemia). Rituxan was used to treat my condition and its working. Rituxan is also used to treat CIDP when IVIg or SCIg cannot be used, or Plasma Exchange (often used in conjunction with Prednisone) doesn’t work well. Rituxan is also a treatment for Rheumatoid Arthritis and some other diseases. Please see the Rituxan discussion thread for more info about it as an alternative to IVIg.
Diabetic Peripheral Neuropathy (DPN) is another fairly common disorder; akin to CIDP (I don’t have DPN but others here have cited it). An estimated 60-70% of Diabetics suffer from peripheral neuropathy. Read a DPN informational brochure here:
Additional info and other resources are here:
Yet another common disease (that I don’t have either, but can be miss-diagnosed as CIDP) is Charcot-Marie-Tooth disease, or CMT. This is a group of inherited disorders that affect the peripheral nerves. CMT is usually confirmed through genetic testing: http://www.cmtausa.org/index.php?option=com_content&view=article&id=741&catid=10&Itemid=37
One of the more popular treatments for Peripheral Neuropathy disorders is an immunosuppressant drug. These drugs help suppress the auto-immune system from producing bad antibodies over time. These are strong drugs and may have side affects for some. Prednisone, CellCept, and Rituximab are some of the more popular drugs being used.
Others, me included, have found that over-the-counter Alpha Lipoic Acid (1200-1800 MG /day) can help reduce reoccurrences too.
February 16, 2015 at 3:38 pm
Hi Jim-LA, Thanks for all of the valuable information…Interestingly, I also developed diabetes during the last 4 years. I have peripheral neuropathy with pain in my feet. Since my last post I met with my rheumatologist and since I am going off of IVIG he is putting me on Rituxan. I will be getting my first dose in about three weeks or as soon as my insurance company agrees to pay for it!!! When I was diagnosed with CIDP four years ago they ruled out CMT first and got the diagnosis of CIDP through Sural nerve biopsy. I bought some ALA but have not taken it yet. My neurologist said he did not have a problem with me taking it.
February 17, 2015 at 10:51 pm
Penny, please tell us about your experiences after taking Rituxan. You should post about it here: https://forum.gbs-cidp.org/topic/rituximab
Best of luck on your new treatment and I hope it works wonders for you!
February 28, 2015 at 2:28 pm
@Jim-LA – you find ALA helps reduce recurrences of GBS?
I tried it and got horrible heartburn, so stopped. But if it will help ensure that I never get a recurrence, I’ll suffer through the burning. I haven’t got another trip to GBS hell left in me. And I’ve only had it once.
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