Jim-LA

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  • Jim-LA
    September 3, 2013 at 10:51 pm

    I too had Plasmapheresis treatments for a couple years. This helped me more than IVIG ever did. IVIG does not remove the bad anti-bodies from your blood, PE does and it helped keep the bad guy count down while my auto-immune system was still producing the bad anti-bodies.

    I took Prednisone to temporarily turn-off my auto-immune system while doing the PE. Prednisone has its issues and you can learn more about that by doing a search at the top of the forums page here.

    Most of my PE treatments were done on an outpatient basis. This is a much less expensive approach and is covered by Medicare and most insurance plans. Since you are only at the hospital or Apheresis center for 3-4 hours, cabin fever is less likely.

    I took Access Paratransit (in LA) to/from the hospital for $5 round trip. Then wheel in my power wheelchair to the Apheresis center and transfer to a bed. Initially I couldn’t do the transfers by myself and had to rely on the hospital’s ‘lift team’ to transfer me. The PE treatments kept the bad anti-bodies at bay giving my nerves time to do a little recovery so I could transfer myself, without the lift team.

    I didn’t have an allergic reaction to the see-through bandage, but I developed a rash after they took it off (the adhesive seemed to rip my skin off when the bandage was removed). So, I had them switch to a cloth bandage and use their adhesive remover solvent each time they replaced a bandage. This solved my rash problem.

    Look into the outpatient costs of PE for your situation. I would be concerned that the GBS/CIDP could become worse without the treatments. In my case, I have so much nerve damage from not starting PE until month 3 after the onset of the disease, I am now a wheelchair bound paraplegic. However, thanks to PE, I’m no longer a quadriplegic!

    Jim-LA
    August 28, 2013 at 8:18 pm

    Plasmapheresis helped me more than IVIG. I had approx 75 PE sessions over about 18 months, mostly outpatient. I noticed improvements 2-3 days after my first PE treatment. I never had any noticeable improvement with IVIG, although it may have helped limit the severity of my GBS/CIDP/MFS when I first came down with it.

    I had a 2-line tunneled catheter installed in my neck; the tubes ran under my skin and out my upper chest. Unlike a PICC line or IV, this device can stay in for a good year. There is extra care needed to make sure you don’t get the exposed points infected. They tell you to flush it and change the bandage daily; I did that once per week because I kept it clean. You won’t be able to take a shower or get the area wet.

    PE can be summarized as the removal of units of whole blood anticoagulated with heparin followed by centrifugation to separate the blood into the cellular elements and plasma. The cellular elements are then mixed with a replacement for the discarded plasma and reinfused. Some of the bad (CIDP) anti-bodies will not get removed if they are too deep in the veins at the time. This is one of the reasons multiple PE treatments are more effective than just a handful. If one’s auto-immune system is still producing the bad (CIDP) anti-bodies, PE can remove them, IVIG does not remove them.

    The outpatient PE exchange takes ~3 hours, longer if using a PICC line or other slower infusion method, and they replaced approx 4 quarts of fluids during each session, in my case. They will administer 4 to 6 bottles of the replacement plasma, depending on doctor recommendations. The fluids removed from my bloodstream were very gross (dark and dingy looking) when I first started, then changed to yellowish, and then became clearer towards the end.

    The PE always made me very sleepy and I was weaker when I left than when I started. I always slept well the night after. I started outpatient PE at twice per week for several weeks, than dropped to once per week. Then every other week, then every two weeks. I stopped for a few months then started up again at every 2-3 weeks.

    If you are in the Los Angeles area I would recommend using the Apheresis Center at Cedars Sinai Medical Center for the outpatient PE. The doctor that runs the program is excellent as are the nurses and equipment.

    Hope this helps.

    Jim

    Jim-LA
    August 28, 2013 at 7:18 pm

    Tierhog, I had to go on disability before retirement age. You may find some of the disability discussion on this other thread useful: http://www.gbs-cidp.org/topic/short-remission-time

    Jim-LA
    August 28, 2013 at 6:25 pm

    Hi Karen (KK1954)

    There are several good CIDP specialist choices in Seattle if you don’t mind a couple hours drive up the 5!

    Earlier this year I researched CIDP treatment options in the Seattle area and have been in contact with some of the doctors and their assistants. I am aware of three facilities in Seattle that appear to have good GBS/CIDP specialists:

    • University of Washington – Department of Neurology … Dr Michael Weiss http://depts.washington.edu/neurolog/divisions/neuromuscular-diseases/neuromuscular-specialists.html
    • Swedish – Cherry Hill Campus … Dr Liou Lee-Loung http://www.swedish.org/Physicians/Lee-Loung-Liou?returnUrl=%2fPhysicians%3fSpecialtyType%3d%26AdultSpecialtyID%3d-1%26PediatricSpecialtyID%3d-1%26AllSpecialtyID%3d2258%26LastName%3d%26Keyword%3d%26Address%3d%26MaxDistance%3d10%26showHide%3d%26ClinicalInterestID%3d-1%26Gender%3d#axzz2dECm71Yb
    • Northwest Hospital and Medical Center … Dr Marc Kirschner http://www.nwhospital.org/physicians/md_detail.asp?mdid=4329

    Here is another GBS/CIDP forum thread about docs in Seattle: http://www.gbs-cidp.org/topic/moving-to-seattle-need-new-neuro

    There are no doubt other choices that I am not aware of. Maybe others reading this thread can offer some more suggestions in and around the Portland, OR area.

    I plan (after 1/1/14 when new Medicare rules go into affect) to undergo the stem cell transplant treatment being offered by the University of Seattle – Dr George E. Georges.

    Good luck and let us know if you find a good CIDP Doc.

    Jim

    Jim-LA
    August 17, 2013 at 5:55 pm

    KK1954

    If you are a member of GBS–CIDP Foundation you should receive the Summer issue of The Communicator soon (I just received my copy today). It contains a very good article written by Dr Saperstein about how to use IVIG for CIDP. The article addresses some of the issues you are talking about here in this forum.

    The GBS–CIDP Foundation has a chapter in Lake Oswego. It is staffed by Dr John F Schilke MD, phone 503 636 0166. He should be able to refer you to a doctor in your area for a second opinion.

    OHSU looks like a good place to get help for CIDP. I tried several searches on their website to find CIDP or GBS specialists and got zip each try. I guess this means none of their doctors have listed the diseases as a sub-specialty or interest. I did learn they recently completed the following Clinical Trial at their Neuromuscular Disease Center; this might be worth your investigation:

    IRB00005176 Lipoic acid for Chronic Inflammatory Demyelinating Polyneuropathy — a randomized, double-blind, placebo controlled pilot study. Managed by Dr. Jau-Shin Lou
    The purpose of this pilot study is to examine if alpha lipoic acid (LA) is an effective treatment for chronic inflammatory demyelinating polyneuropathy (CIDP). Lipoic acid has anti-oxidant and anti-inflammatory properties. It is naturally present in the body and often used as a dietary supplement. For more information about the study, please contact Diana Dimitrova at 503 494-7269 or dimitrov@ohsu.edu.

    Here is the official listing: http://clinicaltrials.gov/ct2/show/NCT00962429?term=CIDP&state1=NA%3AUS%3AOR&rank=1

    Hope this info helps.

    Jim

    Jim-LA
    August 16, 2013 at 10:00 pm

    KK1954,

    There may be expert second opinions available in your area, but you did not mention a location.

    IVIG is not the only treatment for CIDP, especially when it is not well tolerated. Have you tried some of the other more easily tolerable treatments such as Plasmapheresis?

    If your CIDP is not in some state of remission and your auto-immune system continues to produce the harmful anti-bodies, there is the Stem Cell Transplant option … if you qualify for the Clinical Trial and your insurance will cover it (Medicare will not).

    Jim-LA
    August 15, 2013 at 9:01 pm

    There are eight doctors specializing in GBS at the Cleveland Clinic – Neuromuscular Center. It seems to me that this concentration of specialists at the same location would provide good treatment and advice for your family. Three of them specialize in both GBS & CIDP. I would start with Dr Steven Shook, his phone 216 444 5559.

    Jim-LA
    August 14, 2013 at 8:07 pm

    Plasmapheresis helped me the most. I had some improvements after a couple days of treatments. In total I had about 75 treatments over several months.

    They installed a tunneled catheter (double line) in my neck and the connections went under my skin and came out in my upper chest. One should stay away from taking showers while this is installed to help reduce the risk of infection. In my case (quadriplegic at the time) showers were something I could not do anyhow.

    Had I known at the onset of the disease what I know today about GBS/CIDP/MFS (from my personal experience) I would have started treatment with 3 days of Plasmapheresis followed by about 10 days of IVIG. Unfortunately for me, they did the reverse and the bad anti-bodies were alive in my blood and continuing to do harm to my nerves (Myelin). I consider this to be the main reason I became a quadriplegic.

    From my non-medical view the bad (GBS/CIDP) antibodies are already in your bloodstream while you are being treated with IVIG. IVIG stops your auto-immune system from releasing more into the blood stream, but it does little or nothing to kill the bad guys already released. Unlike IVIG, Plasmapheresis will remove (filter out) the bad guys from your blood stream, but won’t do much about stopping your system from producing more. One pass of Plasmapheresis won’t get all the bad guys because some are too deep in the veins at the time. Since the blood is always circulating, the bad guys will soon show themselves again and that is why Plasmapheresis works better after several treatments.

    Today I am a paraplegic and able to participate in this forum, thanks to a combination of Plasmapheresis, IVIG, and Prednisone. We are the fortunate ones here on this forum! There are so many GBS/CIDP/MFS sufferers who cannot even type on a keyboard, let alone view the screen. I know, I was one of them for a couple years.

    Jim-LA
    August 14, 2013 at 12:30 am

    Qualifying for disability is not always an easy task for many of us. I was denied when I first applied and again on my first protest. I used paid help from a person who had experience dealing with Social Security disability to help improve my chances of getting approved. Finally on my third (grievance complaint) attempt, that was conducted via a phone interview with an agent from SSA, I was granted disability.

    I tried to make disability coverage retro-active to when I became disabled with CIDP, but they wouldn’t do that and I lost several months of income. I found out later they no longer grant retro-active disability coverage.

    Start with the on-line application to help speed things up a bit: http://www.ssa.gov/applyfordisability/ There is a lot of red tape involved in filling and you will have to gather documents, and then wait for their large wheels to slowly turn before you receive a response.

    I would advise filing right away for disability and being persistent in the face of rejection.

    Jim-LA
    August 13, 2013 at 9:08 pm

    I was diagnosed with MFS in 2009 after having first been taken down by GBS/CIDP in 2008. The MFS variant paralyzed the right side of my face. I could not close my right eye, I could not open the right side of my mouth, when I tried to smile only the left side of my mouth moved, I had difficulty eating, speaking, and my vision became so blurred the doctors declared me legally blind.

    Today, 5 years later, I can close my right eye (mostly), I now smile from both sides of my mouth (a little less widely on the right side), I have no problems eating, surgery restored my vision, and my speech is much clearer (still a little slurred though). The right side of my face still remains slightly numb and itchy.

    I am thankful for the recovery I have had from MFS, even if it is not yet close to 100% … any improvement is welcome! I wish I had the same level of improvement from CIDP, but it appears I am going to be a paraplegic the rest of my life. Thank god for power wheelchairs, without one I would not be able to get out and around town, and that freedom to travel helps me remain hopeful.

    Jim-LA

    Jim-LA
    July 15, 2013 at 1:19 am

    For those with CIDP who have sufficient financial resources and/or insurance coverages (non Medicare) and are brave enough to undergo a Stem Cell transplant in Seattle, check out this Clinical trial: http://www.fhcrc.org/en/treatment/clinical-trials/detail.7303.html

    I am considering it for myself since I was disqualified from the Chicago SCT program due to age. I am waiting for the new Medicare provision that kicks in on 1/1/14. The “wording” should be available in a couple months so we can see what is covered and what is not. This new Medicare provision specifically expands participation in Clinical Trials. Details are here for those interested: http://www.cms.gov/CCIIO/Resources/Fact-Sheets-and-FAQs/aca_implementation_faqs15.html

    JimT

    Jim-LA
    May 2, 2013 at 1:42 am

    Prednisone is a good news bad news drug. My neuro had me on it for about 18 months to treat my CIDP. I was also doing IVIG and Plasmapheresis while on Prednisone. The good news for me was that it helped stop my auto-immune system from doing its CIDP thing. The bad news was it stopped my auto-immune system from protecting me at all. I got shingles, a rare upper sinus infection that required two neurosurgeries to eliminate, it gave me diabetes (which continues even after stopping the drug), cataracts (had to have surgery in both eyes), thin skin that tears if you look at it wrong, and various other colds and infections.

    Prednisone side affects seem to affect most of us in some way. Then there are the few lucky ones that don’t get any side affects from it. Prednisone worked to help stop the progression of my CIDP. I think Plasmapheresis seemed to work best for me and I probably had 75 treatments while my CIDP was still active. My neuro and I do not know for sure what treatments worked the best to finally stop the progression of my CIDP; and, still suffering from Prednisone side affects, I would take it again. It’s the lesser of two evils thing for me with CIDP being the greater evil.

    JimT

    Jim-LA
    April 30, 2013 at 11:11 pm

    I am a wheelchair bound paraplegic since 2008 thanks to CIDP. The CIDP gave me a bonus form of restless leg syndrome. It’s a twitching, squirmy feeling in my legs. It is not painful, but extremely irritating. It can keep me from sleeping at times. My neuro had me on Requip (Ropinirole) for my RLS but it didn’t help me and I was experiencing some of the side affects from that drug, so I went off it.

    What I found that works for me is a low cost over-the-counter homeopathic item called “Restless Legs Relief” from Magnilife. This works wonders for my RLS symptoms and usually starts working in about 30 minutes after taking it. There are always some that would say this is not a medicine. But, as far as I’m concerned, if it helps remove and/or reduce RLS discomfort it IS a medicine of sorts. I take it daily and it has worked consistently for me for a few years now.

    JimT

    Jim-LA
    October 24, 2012 at 4:16 am

    Well, attaching an image didn’t work.  But this link does:

    http://www.gbs-cidp.org/wp-content/uploads/2012/07/Fall-Winter-2011-Newsletter.htm

    Jim-LA
    October 24, 2012 at 4:08 am

    Thank you for the info!  The article that had alerted me to this new possible treatment was published in the Fall/Winter GBS/CIDP newsletter in 2011.  The article: Treatment of the Residual Effects of GBS with Dalfampridine. Was written By: Gareth J Parry, MD – Professor of Neurology. University of Minnisota – Member, GBS/CIDP Medical Advisory Board.

    I have a copy of the article and attached it as a jpg image.  I hope it came out OK.  My Neurologist at Cedars Sinai prescribed Ampyra to see if it might help my CIDP.  He did some research on the drug and has experience using it with MS patients.

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