June 6, 2017 at 7:39 pm
Anyone start IVIG slowly? I know loading dose is the norm, but I am wondering if anyone has any experience slowly ramping up. I have started with a very small dose with a plan to get to 30g bi weekly. I weigh 68kg. I am ok with not rocking the boat as I have had a long 2 years of trial and error with drugs and I have become hypersensitive to them, admittedly psychosomatic.
My symptoms are mild but the standards of this forum. Primarily sensory with significant balance issues and very easy to fatigue. I can’t say as its weakness per se, just significant stamina issues. I could complete a full workout with squats last year and this year a walk around the neighborhood produces major twitching, burning, dead no feeling, and fatigue for 2+ days.
Thanks again for the help. I am a newcomer but I have searched the threads for any advice in the matter.
June 8, 2017 at 1:23 am
I was prescribed a very typical protocol of 2g/kg over 4 days, then 1g/kg every 4 weeks. Perhaps ask your doctor why s/he chose this regimen for you.
June 8, 2017 at 2:14 pm
Thanks for the reply. He started with a test dose of 5mg. I had a major headache so he wanted to move carefully which I am glad for. I have had major crippling fatigue since my last 10g infusion on monday. It crept up on me, I felt pretty good the day after and now I am barely functioning and scared to death.
I find fatigue to be common on these sites but not of this severity and after such a small infusion.
June 10, 2017 at 5:17 pm
Something amiss with the math. 2g per kg. If you weighed 50kg, it is about 110 lbs. Therefore, for a 110 lb person, the ‘standard’ loading dose would be 100g. You say you got 5mg. 5mg= .005g
Somebody else help with the math, that is 100/.005 or 1/20,000 of a normal dose. nu uh. Something amiss if that little bit gave you a major headache.
Even a 10g dose is 1/10th the normal loading dose. Ask your doctor about infusion rates, how long does it take to get your infusion?
June 12, 2017 at 3:45 pm
Thank you for your reply.
I did start with a 5g dose. My understanding was that this was a test dose as I started with home infusion. I had a significant headache during and afterwards. I have been struggling with my health and trying to start a new job, I think the majority of my headaches are stress related. I was then to try 30g weekly. I had such a hard time with the 5g – combined with trying to stay employed – that my Neuro suggested 10g a week. I don’t know whats going on at this point. I am wiped out – I mean wiped out for 3-5 days after a 10g infusion. I have a very high tolerance for pain, have gone years with this pain with no meds, but this fatigue scared me. I am grasping to being an employed father and just scared to lose that grasp.
June 13, 2017 at 5:23 pm
Benadryl and Tylenol taken before IVIg can help mitigate headaches.
I’ve found if the IVIg is infused too fast, it makes me tired/fatigued for a couple days after the treatment. We tried a slower rate and I felt great afterwards.
Not sure that what you received is enough to do the job. I’d try the full dosage at a slower rate before you give up on IVIg.
June 13, 2017 at 9:02 pm
Thanks for replying. Yes at this point I really need to give IVIG a full trial. I do not have alot of other options and my legs are really getting weaker. I fit the mold to a T symptom wise, diagnostics are less compliant.
I am going to get with my neuro and ask why he chose a weekly regimen versus a higher loading dose. He is very well written and was the chief of a department at one time.
The headaches dont scare me like they did, just the fatigue. Wow that knocked me down for several days. Scared me.
June 13, 2017 at 10:09 pm
jk, I think the standard 2g/kg is for total loading dose which is administered over a few days. Five is typical, which was my regimen. So for your hypothetical 110 lb person, that would be 20g/day for five days. If Ryan’s dose was 5g in one day (not 5mg), then that would be 1/4 of a normal dose, which seems more reasonable as a test to determine tolerance of the treatment.
In my case, I was just given the standard dose over five consecutive days and had no problems with it. I don’t remember the infusion rate, but since I was in hospital there was plenty of time. It was a few hours per day.
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