Reply To: Odd side effect

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!