Karen,

I do not have a name. My blood work shows “high” creatine levels. The nephrologist required CMP blood tesyt prior to each IVIG. If the creatine level was over 1.8 then no IVIG. Other than the blood work results I have no symptoms of kidney problems that I am aware of. No hematuria or any thing else.

They do not really know if IVIG is the cause of the elevated creatine but think it may be. The elevated creatine level is an indication that my kidneys are not functioning a well as they should. They really do not know why.

I have had IVIG for 19 years. I have a kidney problem blamed on IVIG. This is what my neurologist and nephrologist have agreed upon: Max dlivery rate is 50. Pre medicate with hydrocotisone, and two hours before iv loratadine, zantac and singulair. Also two days prior to IVIG blood work (CMP) and if the creatinin level is above 1.8 we do not do the IVIG. Drink lots and lots of water for 3 days and do the test again.

I assume you had plasmapheresis. My experience with PE is 5 days in a row every 4 weeks. I thought this was the standard for this treatment. For me it worked well and kept me basically symptom free. I am on medicare and they have always paid their % of the PE with my Medicare supplement picking up the rest.

I have been on PE and/or IVIG for 19 years at this interval. Has worked well.

I hope you get on a treatment plan that works well for you.

Glad to hear it is working. I never heard of it being used for CIDP. Of course I must admit there is a lot I have never heard of.

I am curious about your diagnosis. I understood that Gralise was only used for pain from nerves damaged by shingles.

Thinking about zingers. As I said I get them once in a while. I do get itching daily. Always a large area – e.g. hip – for a few months then moves to another. Nothing on the skin to show a cause. I think it is CIDP kicking up. However, itching is a lot better than a zinger!

Sounds to me like the IVIG worked well. Why don’t they keep you on it? It seems like they would try IVIG once every 3 weeks after the 5 day load and if it works then maybe try stretching out the time. I am scared of prednisone. My neuro said the end result of a few years on prednisone was worse than CIDP.

We don’t flush with saline as immune globulin “does not like saline” and calls for dextrose flush and we just flush with enough to clear the lines.

go to http://www.health.gov.nl.ca/health/bloodservices/pdf/guidelines_for_administration_of_ivig.pdf
Post Administration

5.5.1

Flush IV line with 5% dextrose in water (D5W) or co
mpatible
solution following the transfusion.

5.5.2

Disconnect the IVIG administration set.

5.5.3

Document post transfusion information on the compat
ibility
label/tag and recipient’s chart following completio
n of the
transfusion.

5.5.4

Return the laboratory portion of the compatibility
label/tag to the
Transfusion Laboratory according to policy.

5.5.5

Monitor the recipient for at least 30 minutes after
the transfusion.

5.5.6

Dispose of IVIG product bottles or containers and t
ubing in
compliance with standard precautions according to h
ospital policy
and procedure.

I have twice had “big” reactions to IVIG.  Once rushed to ICU and once kept overnight.  I was referred to an Allergist.  He said it was not a big deal and this is what he prescribed:  Flow rate not to exceed 50 ml per hour.  Pre-medicate two hours in advance with 20 mg loratridine, 150 mg zantac, 10 mg singulair and at time of infusion start with IV hydracortisone.   So far no side effects at all.