Odd side effect

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.

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!

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

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 .

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.