Your Replies

  • January 23, 2013 at 5:54 pm

    I am sorry for your diagnosis as such a young age- one thing you do not mention is how you are doing on monthly ivig infusion-  If you are doing well then you are on the safest although definitely not cheapest or most convenient therapy-  also as a young woman with your whole life ahead including possible family in your future, you need to consider effect of stem cell on fertility – the chemo may risk infertility – also sometimes cidp goes in to remission on its own – It really all stems on the risk / benefit ratio-  I was dx at 41 and my specialist at the Mayo clinic has informed me that I am doing too well to undertake stem cell despite my reliance on ivig every 10 days and Imuran daily.  I am caught between not being severely disabled ( I am not complaining about that trust me) but not normal either –  Hang in there and I wish you well.

    October 28, 2012 at 9:33 pm

    In answer to your question- I was dx 5 years ago at age 41.  Originally dx with GBS , hospitalized , paralyzed from trunk down- good response to IVIG 5 day loading dose – relapsed about 8 weeks later and back on loading dose ivig- after another relapse,  re- classified to CIDP and have been on maintenance ivig currently every 10 days and also in Imuran ( azothioprine)  for CIDP- my strength is improved but not normal – I am able to walk without a cane but not long distances I have a wheelchair if I have to walk long distances.  I have some tingling , numbness and some nerve pain but take no meds for it as it is not the most prominent symptom for me-  uggs are pretty wide and you can size up if you need they  usually tell you to get a size smaller as it is natural shearling lining and compresses with time-  I have a lot of issues with Raynauds so for me they are a lifesaver – I hope this helps and hang in there  !


    October 27, 2012 at 9:34 pm

    I am sorry to hear you are suffering-  Are you able to try acupuncture? It has helped me and is proven to be beneficial in neuropathic pain and no side effects!  Also I find Uggs a great solution for winter as you don’t need to wear socks with them and they are very soft and warm-  they make them for men and women- expensive but worth it –   Hope you get some relief soon.

    October 16, 2012 at 5:55 pm

    I get the flu vaccine every year.  My local neurologist as well as my Mayo clinic  neurologist recommend.  I have been told the IVIG may interfere with the vaccine effectiveness ( making vaccine less effective) but still worth getting.   I have also been told that if your particular case of CIDP was thought to have induced by a vaccination to avoid in that case. Mine was not related to vaccination so therefore I receive every year.  I do get a little more tired and some mild increase in symptoms the day or two after vaccination, but have never had a relapse brought on by it ( I have 5 years of experience with this personally) .  It is not easy to predict how you will react but contracting the  flu would be very dangerous .  Sometimes they can split the dose if concerned but I am not sure if you would have decrease effectiveness.  Finally, you do get some passive immunity from IVIG .  I am so glad to hear you are improving- nerves can take a few years to heal so once you stop the damage , you may continue to improve.

    October 6, 2012 at 3:46 pm

    Thank you so much for your reply!  I will have to re- explore the SQ option- Dr Dyck did say he thought the formal studies would come out favorably – I also have Aetna insurance so I will look into their formulary for my particular plan- I too get headaches and flu like symptoms from my infusions.  I use 20 grams each time-  I also found your research on progesterone very interesting-  good luck with your decision making and thanks for all the info!


    October 5, 2012 at 11:07 pm

    Hi there- sorry to hear of your difficulties- I had similar issues- I am 46 have 2 children also normal pregnancies – had to stop hormones which I was taking to control bad menstrual migraine due to concerns about estrogen and risk for blood clots from having cidp and also Lupus-  I was having a lot of bleeding and have fibroids as well- I elected to have a uterine ablation- an alternative to hysterectomy- relatively minor procedure – it went well and I am pleased.  My other choice was the Mirena which is a good option for many.  I was just asked at the Mayo clinic for check up of CIDP see Dr Dyck there- asked him about SQ as I get infusion every 10 days now- he says he wants to wait until studies are done- he believes insurance won’t cover in CIDP until studies are done- I would love to switch- how did you get it covered?  Good luck to you and hope my experience helps.

    July 4, 2012 at 1:41 pm

    I am so sorry you have to deal with this extra stress- sometimes I think when it comes to the insurance companies the left hand does not know what the right hand is doing – good luck and I am hoping the Rituxin does the trick for your CIDP!

    June 29, 2012 at 2:18 pm

    I receive 0.4 g/kg which for me is 20 grams which takes me 4 hours as I cannot tolerate a rate above 60 cc/ hour – currently I am receiving every 10 days or so – when I went to Mayo clinic I discussed this with Dr Dyck – it was his opinion that lower more frequent dosing was more beneficial than larger less frequent dosing and also he feels most people are under treated with IVIG – I am really hoping the sq gamma globulin studies pan out as I think this would solve a lot of the logistical issues that are a barrier to proper dosing and frequency.

    June 27, 2012 at 12:14 pm

    Hi there- there is a clinical trial being conducted by CSL Behring looking at sq ivig – it is actually a multi center trial ( nyc happens to be closest center to my home) . The investigators in NYC are at Weill medical college. You can find it on clinical – I am going to look into this again as I feel like there has got to be a better way! I think if they find this treatment effective , this will be a huge improvement in quality of life for those of us who are dependent on long term and frequent IVIG infusions.

    June 26, 2012 at 11:16 pm

    Best of luck to you! It is truly sad that financial barriers exist to treating this illness in so many. Let us know how you do!

    June 25, 2012 at 12:15 pm

    Just to add to the chorus, I too have a flare in my CIDP when I have my period- have no idea why! You have to be very careful about declining extra treatments due to work as only by controlling this disease will you protect your ability to work ( and do everything else)- I know it is easier said than done but it is the truth- Have you looked into your work disability policy? are you able to protect your job and income and cut back for awhile- CIDP is a legitimate diagnosis for going on temporary or partial disability provided you can swing it- I did this after struggling for about a year and a half – I am fortunate to have a good policy through work and a supportive workplace. I work part time now –
    Right now I am struggling with a relapse as I have been trying to space out my infusions to every 2 weeks and this week will likely be needing and extra infusion- I don’t know where I will fit it in as that means 2 days in infusion and 2 days of side effects but I have no choice. I have learned that you have to stay on top of this disease- when you do that you can have a pretty normal life, but when the disease starts to get the upper hand it is a different story. Recognizing this is not giving up – Recruit your family, friends , co- workers, doctors dedicate to getting the upper hand and do what you need to do to rejuggle your life to allow you to get treatments, rest, self care, etc- this is your marathon – It is not easy but manageable. I agree with Lori – don’t settle! shell bones

    June 22, 2012 at 9:43 pm

    I am sorry to hear you are not feeling well- I am not sure what your throat symptoms represent but perhaps you should see an ENT they could look at vocal cords rule out problem there like vocal cord spasm or weakness or other throat problem- just because you have CIDP does not mean you can’t get other unrelated conditions or other autoimmune issues- I also agree with the sentiment to REST- sometimes you just have to listen to your body and go with what it needs even if it means hardship for you or those around you – I have learned over 4 years that people are happy to help all you have to do is ask and it is ok to say you can’t do it all – trust me I have been where you are and have shed a lot of tears -now I just say sorry , I can’t do that right now or I am not at my best and ask for the help I need. When I did this I was able to start healing physically and mentally. Hang in there- you have my support.

    June 22, 2012 at 9:37 pm

    Hello there- I receive IVIG and have been for almost 4 years first every week, then every 10 days and now trying to go every 2 weeks ( with not very good results so far I am afraid)- I started on Imuran at a low dose of 50mg /day as an immune suppressant to try to decrease my IVIG need from weekly infusions. I am not sure why they are recommending you add another med if your CIDP is controlled at every 5 week infusion. This seems like a very reasonable treatment schedule provided you are doing well, and tolerating the treatments well. IVIG has the best safety profile of all the CIDP treatments. Trust me, if I did not need weekly infusions and could have gone even every 2-4 weeks , I would not be on the Imuran . I tolerate it well in general, but get sick more often and fear long term risks. I would seek a second opinion if I were you at a center where they see a lot of CIDP patients. What part of the country are you in if you don’t mind me asking? There are centers of excellence listed on the website to consider. It sounds like you are not in a relapse or crisis where you need to make a decision quickly so don’t rush in and do your research. I went to Mayo clinic to see Dr Dyck and had and excellent experience . Good luck and I am happy to answer any questions!

    June 13, 2012 at 11:37 am

    Good luck with your infusions- hoping it helps and thanks for sharing your experience!

    June 13, 2012 at 11:34 am

    Bny- it is all so confusing- just to reassure you the polyclonal gammopathy is constant with receiving ivig- it reflects the different gammaglobulins you are receiving with ivig- not sure why you have papilledema it can have a number of causes and is not specific to one diagnosis- I would definitely follow that up . Part of the problem of getting a lot of tests for anyone is that many people have abnormalities that are benign and that they would have done fine without knowing they are there- you spend a lot of time chasing these down – I myself had to have a bone marrow biopsy as my lumbosacral MRI showed an increase in signal in the bone marrow- turned out to be completely benign but since these tests are so sensitive they pick up everything!
    In regards to your fear of having your diagnosis changed and no longer having your insurance pay for IVIG I would not worry about that as any neurologist would be aware that the IVIG has helped you and this is well documented in your case- sometimes this in itself helps to support CIDP- since you are an excellent responder and tolerating well they really cannot justify denying you of this beneficial treatment.
    Hope you continue to feel well