Trial of very high "pulse-dose" dexamethasone corticosteroid for the adverse effects of IVIG for CIPD June-August 2018: As of June 1, 2018 I began I three-month trial of very high "pulse-dose" dexamethasone corticosteroid aimed at suppressing the adverse effects of IVIG for my CIDP in general. The dose is a mammoth 160 mg taken over four days (40 mg-day) taken in pill form (more than ten times the standard dose). I take the pills a week before by standard dose IVIG for CIDP infusion (70 g every four weeks). The trigger for this trial is the unusual lip-scabs I get day 9 through 20 of the infusion cycle. I have had this adverse reaction to immunoglobulin persistently since my first infusion 2012 and was troubled by the completely unpredictable long-term effects. While the lip-scabs was the trigger: my doctor is also hopeful I will have less pain and also potentially cut back on the IVIG dose. Pulse-dose dexamethasone suppresses or "re-sets" the immune system, as I understand it. The effect is that is the immunoglobulin-dexamethasone combination may have better outcomes for my CIDP* noting also that my last NCS nerve conduction study produced discouraging results. I am not a great believer in this theory but am reluctantly going along with the idea for now. (My CIDP doctor is world renown in this field and I am mostly trusting of her judgment. In the past I have rejected her suggestion that I take pain-killing drugs)..
» Trial started June 1, 2018 Protocol Development Day: I took 2 pills (8mg) just to test initial body response to dexamethasone corticosteroid. I did this test on my own instigation. Dexamethasone is known to be tough on the gut so prior to the dose I took 4 teaspoons of psyllium husks and an hour later oatmeal porridge. This food intake is pretty much my daily routine any way and I am also Gluten Free which helps too. So another hour later I took the dexamethasone pills. No major change to morning routine for dexamethasone taking.
» First day big dose June 2, 2018 Result: Through the day I felt no effects on my digestive system but by late evening I was fighting a strong cramping tenancy (especially in legs) which I successfully countered by repeated cycles of my usual daily stretching routine. I wonder what the full dose will mean for cramping!!
» June 2, 2018 Balance of daily dose of dexamethasone - I took the remainder of the daily dose 8 pills (32mg) in split two doses within two hours. Full glass of water after each dose. My day was better than first day although still increased pain and some elevated propensity for leg cramp. Definite high and sleep difficulty.
» June 3, 2018 Third day of full 40mg "pulse-dose" dexamethasone corticosteroid: I am feeling decidedly hyped start of the second day. As per my usual sunday eating regimen, I am first taking about one-and-a-half cups of freshly ground flax with a whole lot of liquid. Hour later large bowl of whole oatmeal cooked with milk: half way take 20mg (5 pills with milk), wait half hour rest of oatmeal then the remaining 20mg (5 pills with milk). Full glass of water after each dose and several more glasses of water throughout the day. Cut way back on coffee / tea caffeine for the day! Went for a 10km run at twelve - went ok but pace down somewhat.
» June 4, 2018 Fourth day of full 40mg "pulse-dose" dexamethasone corticosteroid: I continued the take protocol which works well on digestion and intestines. Bad sleep last night and woke up really wired and stayed wired the whole day. Otherwise not a bad day - pain okay and no above normal cramping tendency.
» June 5, 2018 Fifth last of full 40mg "pulse-dose" dexamethasone corticosteroid: With better sleep last night I followed my protocol as above for the last day to complete a 160mg pulse dose followed by IVIG (70g) for my CIDP. Again a whole day of uncomfortable wired activity: Clearly my days on this pulse-dose have been quite unpleasant compared to my usual state in my IVIG cycle.
» June 6, 2018 Day after last of full 40mg "pulse-dose" dexamethasone corticosteroid: Again,sleep disruption up now writing this log at 3:30 am! Disorientation throughout the day and increased propensity to cramp - a few minor cramps. Despite this I went for a very dazed 10km run and pace was okay. Afterwards high cramping tendencies (contrary to usual), disorientation and balance issues. Much increased fasciculations - perhaps double the usual. This day has been much more unpleasant than I have ever had at this time in a regular (non pulse-dose) IVIG cycle. Not at all encouraging!
» June 7, 2018 I was in for the Panzyga infusion in a an utter daze, then to boot infused at the high rate of 610 ml per hr. The weired dazed feeling stayed with me the whole day.
» June 8, 2018 - Day after IVIG infusion and, as a result of the lingering effects of dexamethasone, I am more tired than usual, continuing higher level of cramping as well as being in a daze (although somewhat dissipated).
» June 14, 2018 - During the week after IVIG infusion I had high level of disorientation and balance issues. Fasciculations, pain and cramping tendencies were significantly higher than without the pulls dose of dexamethasone. No sign of the lip scabs so far though!
» June 28, 2018 - I did have one small inconsequential laceration/ scab on my upper lip around day 18 of my IVIG infusion cycle. However, day before I take the the next pulse-dose dexamethasone tomorrow I can report that pretty much all of my symptoms were worse the first month of the pulse-dose. Most serious was very significant loss of balance and feeling of disorientation. My brain feels numb even as I write. Due to this I had a number of close falls. Lets see what happens in the next pulse-dose cycle.
» June 29, 2018 - First day of second pulse-dose. I had three cramps in the first night so yes cramping is a problem with this drug. However, by the forth day of the pulse-dose I am realizing that with proper management of my protocol (like caffeine restriction and frequent stretching) I am able to manage. This round I had a swelling of my neck and abdomen and my flesh became more sensitive with an increase bruised-all-over feeling. Still, I am prepared to continue and see if I get meaningful health benefits, such as improved NCS (nerve conduction study) results for my CIDP - I have that upcoming this week July 5, 2018.
» July 5, 2018 - Surprise no deterioration: NCS leg & arm motor test results stable!
» July 17, 2018 - My doctors stop the dexamethasone trial due to the above noted effects. They also will not even consider a lower dose.
» August 28, 2018 motor & sensory NCS show slight deterioration which my doctor blames on the two monthly doses of dexamethasone. Starting January 2019 I will try SubQ Cuvitru IG (replacing IVIG) as a potential solution.
» My last comment: pulse-dose dexamethasone was brutal and highly counterproductive in my case. My index of symptoms (shown below) climbed to its highest value since early 2015. The trial was too short to make conclusions on whether dexamethasone would permanently solve my IVIG lip scab problem either. Almost a year later May 2019, I suffer from a higher level of disorientation which I feel is a direct consequence of taking the pulse-dose dexamethasone in combination with IVIG for my CIDP.
Concepts for "pulse-dose" dexamethasone corticosteroid as CIDP IVIG Adjunct: How to take dexamethasone, predestine vs dexamethasone, dexamethasone effect on IVIG effectiveness in CIDP.
* G. G. A. van Lieverloo et al, July 2, 2018. "Corticosteroids in chronic inflammatory demyelinating polyneuropathy A retrospective, multicentre study, comparing efficacy and safety of daily prednisolone, pulsed dexamethasone, and pulsed intravenous methylprednisolone. See PDF download Dexamethasone-IVIG-Outcomes-CIDP-van-Lieverloo-2018-07-02.pdf
** Deterioration after corticosteroids in CIDP may be associated with pure focal demyelinating pattern Filip Eftimov, 2014. See PDF download Deteriorate-after-corticosteroids-IVIG-CIDP-2014.pdf;
CONCEPTS for My CIDP