Dosage reduction

[dianesistern]

I had my ivig today and had severe rash come up across chest and shoulders my consultant has reduced my dose and transfered me to 3 weekly infusions from fortnightly, as i have thrombocytopenia also and my count is 23 at mo ime worried this will drop again and that i will be at more risk of infection because of reduced dose i have been having ivig for over 20 years and was on sub cut for 3 years, and a chest infrction with low platelets is dangerous for me as i have had lung bleeds in the past

[s162216]

Hi

Has this 'consultant' actually bothered to read any product literature from the manufacturer of the IVIG solution? Assuming 0.4 g/kg of body weight is the usual starting dose for most solutions and whilst it is possible to give less if needed, I don't see why you should all suddenly be having too much, I suppose all you can do is wait and see if your IgG count drops or not as that will be a pretty good wake up for the consultant.

20g doesn't seem very much as basing that on 0.4g/kg makes that effectively the dose that you would give someone weighing only 50 kg which I assume you weigh a bit more than as you'd be severely underweight if so!

Have you considered making a complaint/comment to the consultants superior (i.e the hospital management) over how you and others feel that this is affecting their quality of life because of the potential of having more infections etc and also how patients in other hospitals don't seem to be having their doses cut. It might be worth asking if they could get another immunologist from another hospital to review what this new consultant is doing and what her rationale for the decision is with appropriate evidence or if its just something that she's thought up.

Sam

(I've posted this both here and on the PIA forum as it was on both)

[mali42]

This sounds so wrong on so many counts, Has your consultant explained why he or she is doing this and if your your igg levels drop will they put your dose back up I agree with Samuel complain to a higher authority if you get no joy or even get your local councillor on the job,
I could understand changing your dose slowly to check your levels but not cut your dose and extend the time you have ivig,
hope its sorted soon.

[liz2mac]

Hi,
My patient advisory skills are very rusty, but I would advise as follows.
Every patient with a PID (primary Immune Deficiency) MUST be treate primarily by an immunologist specialising in Primary Immuno Deficiency. If you are under the care of any other type of consultant you need to get out from under. If you are willing to say which part of the country you are living in, I will find out which consultant it is best for you to see. The teratment you describe is incorrecr and is likely to make you more ill. You must gey yourself to another consultant as fast as possible, you do not need to lead this kind of a half life. I am able and willing to help you if you would like.
Liz.