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  • December 1, 2015 at 8:20 am

    Dr. Roos at the University of Chicago has a fine team that made the final diagnosis on my CIDP. They spent a good 4 hours testing me and came up with a treatment plan for me to follow.
    I did end up with Dr. Kincaid in Indianapolis (IU Medical), since my Neurologist is one of his graduates and works with him on several cases.

    I think any of the University driven medical facilities will give you a good treatment plan, even if your local Neuro. is where you get treated.

    March 24, 2015 at 8:13 am

    Sorry to hear of your recent diagnosis. It is too bad you didn’t get much help from early Dr. visits. Many doctors just don’t realize how hard it is for some to actually make a visit, and when they do they are not messing around with the sniffles.
    I waited 3 months after first symptoms before I went to Dr. and I could barely walk at that point. Luckily he went thru the entire process and involved a Neuro, before settling on GBS….which in turn became CIDP.

    There is some research on CIDP, but it isn’t a high profile disease, and doesn’t impact the number of people that Cancer, Alzheimer, etc suffer.
    If you want some interesting thoughts check out Dr. Burt at Northwestern University Hospital in Chicago area. He uses your Stem Cells to rebuild your immune system after wiping it out with Chemo. Not something I’m ready to jump into, but I keep tabs of its progress.

    Your journey will be quite a challenge if its anything like mine, that is for sure. Everyone is so different its impossible to say what to “expect”, other than a lot of challenges. Staying active while working full time and then fighting off fatigue is my recent challenge after 7.5 years of CIDP.

    IVIg is a life saver for me. Without it I would be gone by now. I receive monthly treatments that my Neuro and I make adjustments to in order to keep me on a fairly even keel. I take minimal drugs (other than IVIg) so that I can continue to work at an office job. Too many mixtures of medications plays heck with my memory and concentration, which in turn weights heavy on self confidence.

    This board will help you some, but it isn’t nearly as active as it was many years ago, probably due to increased social media sites like FBook, Twitter, Pinterest, etc…

    You will certainly have to be your own patient advocate as so much of what you experience has to be relayed verbally to doctors. They can’t take any scientific readings and give you the right treatment regime.

    One thing I have done since day 1 is keep a journal of medication changes with dates and amounts. I also include treatments and how I feel going in and coming out. Nothing elaborate, not even full sentences at times, just something to date stamp and journal my trip. It has been invaluable when I see a different specialist, or we are looking to “try” something different. Also, if you end up getting into a trial you will probably have to fail all the other prescribed drugs and regimes.

    Good luck and God bless.

    February 13, 2015 at 9:44 pm

    My WBC took a dive about 8 months ago. Interesting, I was taking too much Advil (Ibprofin) because I have a lot of headaches. I went cold turkey on the Advil and in a few months they were back up, but have not returned to above average. Probably something with IVIG since I get 3 treatments every 3 weeks. It was a nurse with extensive experience dealing with a very sick child that knew about Advil reducing WBC so much.

    February 7, 2014 at 7:02 pm

    Sounds exactly like me. When it gets closer to IVIG time I have exact same symptoms. It was getting so bad the last 5 or so days before treatment that I had my Dr. change my frequency. We shortened the time between treatments by 1 week and I am in much better shape. More consistent external symptoms between treatments. I still get some itching, stingers, etc, but not like before.
    Also of note…for me Lyrica is a wonder drug at relieving the itch, stingers and overall discomfort. Nothing, I mean Nothing, works like Lyrica!

    Maybe you can get your Dr. to shorten the time between treatments, even if it means a reduced number of days. I was at:
    4 days every 4 weeks. Now 3 days every 3 weeks. Same dosage per year, just more often…..sure is a hassle though….

    December 30, 2011 at 11:49 pm

    I have had CIDP since 2007, just had my 4 year “Helliversary”. I work in the financial business as a technology specialist. My work involves a lot of problem solving, memorization, computer programming (in multiple languages), project management, and some physical movement of computers in and around the region.
    I never missed a beat at work, as a matter of fact I don’t know what I would do without my job, it keeps me sane.
    I go for IVIg every 4 weeks for 3 days. I spent 3 years on IVIg every 5-6 weeks for 5 straight days. I am on many medications including Lyrica, Cymbalta, Imuran and blood pressure medication. I’ve done the Prednisone route and Fluoxetine along with some other stuff over the years.
    I only miss work when I am getting treatment or seeing the Doctor. I have good and bad days, but I push on and work 40-50 hours a week.
    It is not easy as the medication makes concentration very challenging. I also find that pressure causes my symptoms to flair up.
    Most importantly I find that working all day is about all I’m good for. Its not like I come home and work out, paint a room, play golf or anything. I have made the decision to use my energy at work.
    I am EXTREMELY lucky that both my Boss and my company are very, very accomodating to my situation. They have stood behind me since day 1 and still want me working, especially if I can stay productive.
    Be advised, Obama saved many of us CIDP’ers…..With NO cap on health care coverage many of us can stay employed for many years. If your getting treatements every month then you are running up quite a bill and after 6-8 years that would add up to “max out” of most health plans….THEN WHAT DO YOU DO IF YOU WANT TO KEEP WORKING ????

    I hope you can get the right treatment plan down so you can return to work if you so desire.

    Best of luck

    May 25, 2011 at 10:33 am

    I have been on Imuran for 8 months now. I am 3.5 years into my CIDP with a very active immune system (so my Dr’s say).
    The Imuran took a good 3-4 months to kick in but it has really helped me. I find it allows me to go into my IVIg treatments with very good strength.

    I have been on 5 days of IVIg every 5 weeks with a dosage of 0.8 gm/kg (which is double the normal dose) for 2 years now. Until I started Imuran I would go into the treatments very weak, unable to open a water bottle, bag of chips, unable to walk normally, leg muscle pain, etc…
    Since Imuran kicked in (I’m currently at 150 mg, on way to 200 mg) I don’t have any strength issues and have even been able to drop to “just” 4 days of IVIg. Dr’s will begin “tweaking” my IVIg a little.

    On the down side…..Imuran has not helped at all with the “stingers”, buzzing, numbness (eg “PAIN”) associated with my CIDP. I have to take other drugs to try and combat this issue (none really help). Only IVIg stops me from tearing my skin off after 5 weeks, so I can’t imaging going any longer.

    September 8, 2010 at 6:44 pm

    You are on the same path as me….

    I was on .4 of IVIG (standard dose) from Jan. ’08 till July ’09 – 5 straight days every 5-6 weeks. The 5-6 week period creeped down to 4-5 and finally 4 weeks max between treatments. I was also on Prednisone during 90% of that period.
    In July 2009 I was switched to .8 grams and also weaned off Prednisone by then. I realized increased strength and stretched my symptoms (and required treatments) back out to 6 weeks.
    I continued for 1 year on .8 when one of my Dr.’s reduced me back to .4 grams. Well I had to rush back into the Infusion center in less than 4 weeks due to rapidly failing muscles and pain.
    My primary Neuro has bumped me back to .8 so I’m assuming I’ll be back to around the 6 week mark.
    I never asked my Neuro (just saw her yesterday) if it was a build up of resistance to the medication, but I will next time I see her.
    I have never had Plasmatheresis, as it is not done very often around here and I keep hearing it has the exact same result as IVIg.

    August 29, 2010 at 1:12 am

    Funny how everyone is so different. I am in for 5 days of IVIg every 5-6 weeks (2+ years).
    I was taking Trazodone for about 4 months, it really knocked me out and I slept great. I had to take a Claretin with it because it stopped up my nose big time.
    The problem I was having with Trazodone was how foggy my brain was in the mornings. I just couldnt wake up and perform at work (desk job). I had some days where I was a zombie for many hours in the morning.
    Just 4 weeks ago my Dr’s switched me to Melatonin and I really like it. I take just 5 or 10 mg. and 30-60 mins later I am really tired. It is over the counter so I doubt it is very powerful, certainly not like Trazodone.
    So for now I’m sticking with the Melatonin as I don’t have any issues getting going in the morning and I sleep pretty well with it.

    July 27, 2010 at 7:54 pm

    I’m a guy (with a nurse for a wife) and I never had a problem “manning” up to get stuck. I went nearly 2 years on IVIg getting stuck in the arms and hands. I went for 5 straight days of IVIg every 5 weeks. After more than 85 treatments my veins were shot….85 treatments translates into probably over 150 attempts and vein changes (at least).
    7 months ago I went into surgery and had a Port installed, eliminating the need for multiple sticks and making the treatment cycle much, much easier.
    I still get 5 days of treatment every 5-7 weeks.
    The specialist I went to earlier this month told me that is about right as IVIg will hold of CIDP effects for 30-40 days maximum. After about 21-23 days I begin getting the needle pricks, buzzing, etc, then at the 30-36 day mark my muscles show significant weakness and pain.
    I again visited the specialist (6 days ago) and he prescribed Lyrica to help combat the pain issue…Wow does that stuff work for me. I will now be able to make the 6-7 week mark before heading back in for IVIg. I have some side effects from the Lyrica, but it sure seems to help the needle pricks, buzzing (like low current electricity). I would say the Lyrica helps reduce 90% of the pain.

    I try to make my visits to the Infusion Center fun for the staff. I take them small gifts, gift certificates, cake, etc… Nothing to costly, but things that make them sort of look forward to my visits instead of just another customer to be stuck. I figure it is the least I can do for them after all the great treatments and time they spend on me.

    July 10, 2010 at 11:36 pm

    Way to go Dick, that is awesome.
    I was a scratch golfer 8 years ago when I decided to put the clubs up and focus on coaching my two daughters in basketball. I figured I could always golf again when they got out of high school and I had the time and desire again. Playing at at a high level is incredibly time consuming and “selfish” as you know.
    Well the summer my 2nd daughter graduated I contracted CIDP. Its now 2.5 years later and I have not had the courage to even try golfing or hitting balls.
    I get treatment every month so I only have 2 or so weeks when I am strong enough to even try. I hope to get up the desire to give it a try, your story is very encouraging.

    How was your grip strength the first time you went out ?

    Thanks for posting your story.

    June 29, 2010 at 2:32 pm

    Sorry to hear of all your stuggles. I once told my wife, “if this thing (CIDP) had to strike our family I am thankful it hit me and not you”. She is the glue that holds our family together. Being a male and dealing with this damn thing has got to be easier than a female, especially a mother of two young ones.

    The sweating problem recently took a turn for the worse as our humidity rose here in the northland. It was driving me crazy as well. I could simply sit in my office and my shirt would be soaked. I finally had to make the building super turn up the air due to my “medical condition”.
    For me I reduced my Cymbalta a little (1/3) and it helped….didn’t return me to normal, but it did help. I have found that the anti-depress. drugs make my body run warm (hot) and my family hates it. They sit inside with a blanket and sweatshirt while I have shorts and a t-shirt on. Then when I do any little exercise I “overheat”.

    I also dropped one medication that helped me fight off fatigue and actually take simple caffeine pills to keep going. I’m not a coffee drinker, never have been. The over the counter pills allow me to stay focused and not overheat as much as the anti-depressants or hot coffee. Plus they are pretty short term effect so I can “throttle” down at night before taking a sleeping pill.

    June 29, 2010 at 2:19 pm

    Hate to speculate, but you sound like me.

    I was originally diagnosed with GBS and given IVIG, walked out the hospital and in 3 weeks I was jogging lightly again. Got up to a good pace after a week or two then started getting muscle aches/pulls in calves and thighs. This quickly turned into tingling/numbness in feet and wham I was back to the Dr. They had to retreat me with IVIG again and a specialist changed the dx from GBS to CIDP.

    That was nearly 3 yrs ago. I would HIGHLY recommend a specialist at a teaching university/hospital evaluate you!
    They will spend hours and hours testing you to give you a very solid diagnosis.
    You want to know exactly what variation of CIDP you have OR if it is GBS how to get it under control and not aggravate you condition.

    The tightening of the calves still persists when I am on the tail end of my cycle for IVIG treatment…

    June 9, 2010 at 11:53 am

    Jessica H. Check your private messages for response.

    June 8, 2010 at 6:56 pm

    I would strongly suggest getting to a specialist at an educational facility like Duke. I have been to 2 different specialist, both of which my own Neurolgist recommended. She wanted to make sure nothing was missed and also gain guidance on treatment schedules, different combinations of medicines and have an expert to consult (usually via email) with questions.
    For me it was an interesting experience. I went to University of Chicago and spent 5 hours being tested and discussing my situation with an entire team of doctors, then they met and came to a conclusion on my true diagnosis and treatment plan. They were incredibily thorough and were in no rush because they didn’t need to see some sort of patient quota. They also see far more cases of CIDP/GBS than my Neuro so they have insight you just can get from a single doctors office.
    I am once again going to a University Specialist next month as we begin looking at a different treatment option. My neuro is more comfortable bouncing ideas off the specialist so I don’t mind a few more hours of probing and probably another EMG test (Just hope I don’t have to do a third spinal tap, I don’t like those).
    I sure can not imagine having to seek treatment in a huge city like NY, that would “break me”. I am able to work 1/2 a day, then drive 5 minutes to the infusion center and get treated and home by 5pm usually. Unlike you the IVIG is a life saver and I respond almost immediatly after getting 5 straight days of it. Thinking back I know there was a time when it did not help very much, this was because I only received 3 days and the time between treatments was too long.
    A specialist can help set a plan that will get you back on track, provided you can get your insurance to cover it.
    Best of luck and I hope you can get things turned around, it shouldn’t be this hard on you.

    May 18, 2010 at 8:00 am

    Elmo I agree with you 100%. Today I am taking in a cake to share with the staff at the hospital to “celabrate” my 100rth IVIG treatment in the unit.
    The hospital should be showering me in gifts for patronizing them, as there are other options in the area.
    The staff was also unaware it is Neuropathy week.