Odd side effect

    • October 16, 2016 at 7:55 pm

      I am having an odd side effect since I started IVIg for CIDP and it’s the back of my neck and shoulders hurting so much it’s hard to hold my arms above my head even long enough to wash my hair. I started last month for 5 days and I just had it done my one day for this month. My nurse and doctor seem to think I should have noticed SOME kind of improvement if only minute. I have found my legs and arms to be worse and my ability to walk lessened. Is it just me or is this common when first stating IVIg? Please help as this has been such a long, hard road and doing something that seemingly is making things worse is pointless unless it’s like a bruise and gets worse before it gets better. God bless you ALL! 🙂

    • October 16, 2016 at 10:41 pm

      IVIg Side Effects:
      It is fairly common for patients to experience headache (which can be mild to severe), stiff neck, and fever during or shortly after an infusion. This is called aseptic meningitis syndrome (AMS). These symptoms are manageable and can be minimized or prevented by infusing IVIG very slowly. Patients may often feel fatigued or flu type symptoms for a day or two after their infusion.

      If the dosage of IVIg may be hard for you to tolerate, ask your doctor to have it reduced or consider SCIg as an alternative treatment. SCIg does what IVIg does treatment-wise with less possibility of AMS

      If your autoimmune system is still producing antibodies that attack “self”, you may want to ask your doctor about trying Plasma Exchange (PE) treatments. This is the primary way of removing those antibodies from your system. IVIg, SCIg, and often Prednisone, will stop your autoimmune system from producing more of those antibodies, but won’t remove what’s there, that’s the job of PE.

      I wish you you the best in dealing with this awful affliction.

    • October 17, 2016 at 1:12 am

      Thank you for a more fine-tuned laymans answer that’s easy to understand. I pray this works and from all I’ve read it has like anywhere from a 50-90% partly to totally curable rate. I don’t know how to deal with going from a strong hard working woman to an invalid who can’t walk longer than 25 feet and always with a walker. IS talk therapy recommended for dealing with this? These issues are way greater than I am. Thank you again for your answer and care. Peace ?

    • jk
      October 19, 2016 at 8:45 pm

      You may not see immediate improvement. Specifically, the National Institutes of Health said in 2012: “IVIg has been introduced as the main therapy for CIDP over the last two decades. Multiple well-controlled studies have demonstrated that approximately 50–70% of patients respond to IVIg [Hahn et al. 1996b; Mendell et al. 2001; Hughes et al. 2008]. Improvement occurs within a few weeks, and rarely recovery may be dramatic, appearing 1 or 2 days after completing the infusion. Usually the benefit is transient (1–6 weeks) with 50% of patients relapsing within weeks to months and subsequently requiring regular infusions to maintain maximum improvement. Patients with a progressive course or predominantly sensory deficits with tremor may be less likely to improve….Improvement was noted as early as 10 days after therapy.”

      When I did not improve and my local neurologists stopped IVIG, the Mayo clinic Dr stated- “You probably did not have enough IVIG often enough.”

      Referring to the above, 30-50% of patients do not improve. You may be one of those for which IVIG is not helpful.

      Moreover, in some studies, it has been demonstrated that some patients respond better, or worse, with certain brands of IVIG.

      I agree with Jim-LA’s suggestion- Ask your doctor about lower infusion rates and about using a different manufacturer of the IVIG.

      Some people find that pre-loading with water the day prior and continuing to intake a lot of water as well as benadryl on the day of infusion to be helpful. My doctor ordered the benadryl to also be given through the IV prior to the start of the IVIG as part of my on-going prescription.

      I did not find ‘talk therapy’ to be helpful because the talkers all dwell on their problems, not on solutions and positive thinking. Do what you can to get treated, study all you can to know your condition better and above all, focus on happy things and things you can do. Figure out adaptions to help you do what you need to. See an Occupational therapist for help with Activities of Daily living (ADLs). Dwelling on what you’ve lost is a slippery, never ending downward spiral.

      Two frogs jumped in a pail of milk. On, no! After a while one frog said. ‘that’s it, I’m tired, I quit’ and that frog drowned. The other frog never gave up, kicking and swimming until- lo and behold, some curds formed and she hopped out!

    • October 19, 2016 at 10:34 pm

      Thank you jk! I found it neat that you used a frog analogy since that’s been my family nickname since childhood so on that note this frog is hopping out!! Thanks for the encouragement and more knowledge after all knowledge is power! Peace…

    • October 19, 2016 at 11:03 pm

      I think JK is an amazing contributor and at times is…. clairvoyant!

    • October 22, 2016 at 8:14 pm

      CIDP does cause back, neck, shoulder pain maybe a coincidence of timing with IVIG? Many frustrations thru the entire process. My situation, I was new to area and had very hard time getting into a Dr in a timely manner. In 8 months I saw many many Doctors and had lots of lab work, MRI and scans. I had never heard of CIDP. In May, 2016, my ex Doctor said first available Neurologist appt for new pt was 1-17-2017…… Told nurse I would be totally disabled by then she responded that she tried her best. After 8 months of every changing painful symptoms I was Dx CIDP 4 months ago.
      I have learned the hard way, find a good Neurologist who has treated CIDP AND GET 2nd and 3rd opinion. Every persons body reacts different to medicine and treatments. Keep a journal . Communicate with your Doctors nurse if you have questions. I was given many nerve prescriptions mentioned by others that helped them , but made my condition worse. Medicine is to make you feel better not worse .

    • October 22, 2016 at 8:32 pm

      Thank you for your response. I’m sorry you have had such trials but I am glad that you at least know what it is. Do you walk at all? I have been on IVIg for 2 months now and it took me 3 years to get the diagnosis. I am pretty hobbled at this point. After less than 10 feet my legs give out. I will have to start a journal; that is a FANTASTIC idea! I pray each and everyone one of you healing!! God bless 🙂

    • November 7, 2016 at 7:23 am

      I totally agree with jk:

      Some people find that pre-loading with water the day prior and continuing to intake a lot of water as well as benadryl on the day of infusion to be helpful.

      Drink plenty of water, I also take a couple of benadryl before the infusion and it has helped me.

      Best wishes to everybody here.