Hi Kelly,
I noticed you said 2gms per kg. Is that per infusion or for the whole loading dose?
My two loading doses were done at .4gms per kg for a total of 40gms (I was 100kg). My fortnightly maintenance doses are also .4gms per kg.
I am curious as to the difference.
Regards Tim

My name is Tim McClure and I am from the Sunshine Coast in Qld. Australia.

I contracted CIDP in July 2009 and was not diagnosed until August 2010 – after several visits to many doctors and being hospitalized at several different hospitals – on many occasions.

I was finally referred to a neuroligist in Brisbane, who diagnosed my condition within 5 minutes, and referred me for electrical conductivity tests and a lumbar puncture to confirm his diag.

I seem to have coped the lot, autonomic, sensory and motor nerve damage, although I do not appear to be nearly as bad as many of the others on this forum.

I am currently on fortnightly IVIg (39gms in a 650ml solution) and take 20mg of Methotrexate tablets once a week. I have also previously had a loading dose of IVMP, followed by an oral weaning dose of steroid tablets. I do appear to be improving but the progress is painfully slow.

My fortnightly dose of IVIg takes approximately 3.5 hours.

Doug, don’t let any questions embarrass you, most have been through many problems, some embarrassing, but rest assured that everyone is affected by this disease in many different ways.

Bladder and bowel function can be impaired as can erectile function. My most debilitating symptoms throughout have been constant bad cases of dizziness and headaches but it appears that this is not very common. (I think I read a post from someone called Bethany in an earlier post who had the same problem).

I have also been through severe leg pains (hamstring muscles) earlier on but they went away only to return again a couple of times, but becoming less painful. Many other pains have come and gone – hopefully for good.
I cannot type much longer this time because it is increasing my headache and dizziness.

Keep your chin up – sometimes I know that it can be very hard and trying.

Tim

Sunshine Coast is about 900 miles from cylone “Yasi” hit land. The bad queensland floods were a further 50 miles down the coast from us.
We have been lucky other than about 40 inches of rain so far this year.

Other than travelling 10 miles across to the coast to the day hospitl for my IVIG treatment each fortnight, watching the rain has been my main activity.

Hello Lori. I do not notice when the IVIg starts or stops working – I sometimes wonder if it is doing anything at all. I am on fortnightly maintenance doses. Some of my symptoms have reduced but I believe that this variation could be just the flucuating nature of the disease rather than the IVIg.
I did have badly flucuating Blood Pressure (very high spikes) but this seeme to have moderated now and come down to normal level. My Neru suggests that I stick with the IVIg for now and see if there are any other changes.
Tim

I would agree with Rosemary. A common symptom of CIDP is fatigue so it would make sense that if you fatigue easily then it would leave you short of breath. It does in my case, even with mild exercise.
I too was diagnosed with having panic attacks, given breathing exercises then sent home.

Regards Tim

G,Day Linda and any other Aussies. My post is the one above your first one. The Neau that diagnosed me was Dr Paul Sandstrom in Brissy. Who are you seeing? You seem to be on a lot of different meds. My progress is painfully slow.
What are your main debilating symptoms?

Regards Tim (mceagle@gotalk.net.au)