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April 11, 2017 at 11:00 pm
Sandra,
I found a PT practice that specializes in neuro disorders. They are great and understand the issues we face. I do strength exercises based on their evaluation of all of my muscle groups and where I am weak. And during my most recent (and fourth) session, they started adding in several balance exercises. They explained that balance is sensory, visual and vestibular (ear). They can’t correct sensory, and presumably visual is ok — but they can help fine tune the vestibular system to help with balance. Perhaps there is a similar practice in your area?
April 11, 2017 at 4:37 pmSandra, it seems our posts crossed paths. I hope you see the one I just sent.
Your neurologist should be answering your questions to the point that you aren’t confused. Perhaps call his/her nurse or medical assistant to see if s/he can help with more information before your next appointment. And perhaps bring a family member or friend to your next appointment since four ears will hear more than two. I’ve brought my husband to some and my father-in-law (an MD) to another. It helps rehash things. I also bring written questions to my appointments and take notes during and after the appointments. Good luck with your journey!
April 11, 2017 at 4:33 pmSandra,
My understanding is that a standard protocol for IVIG is 2g/kg over 3-4 days for the loading dose and 1g/kg over 1-2 days for the maintenance doses. Given my weight, 65-70 g is appropriate. I’m only one day out, but I’m currently headache-free after yesterday’s maintenance dose.
My neurologist said that I need to receive IVIG for 6 months before really evaluating if it works. But I keep a daily spreadsheet of symptoms, and while self-reported and subjective, I do think that it is helping. My bad days aren’t as bad and my good days are better. And objectively, my chronically elevated WBC came down to normal and my elevated CRP cut in half (after just the loading dose).
April 10, 2017 at 3:25 pmSandra, I am currently sitting in my 3rd monthly maintenance dose after the loading dose in December. I had severe migraines with the loading dose but only standard headaches with the subsequent doses. And I can manage the headaches fairly well by alternating ibuprofen and acetaminophen. I also take Benadryl and my infusion rate has been slowed. Takes about 6-7 hours for 70g.
March 31, 2017 at 11:45 pmKing Soopers (Kroger) has Clicklist which is $5 and I get all of the sale prices and frequent shopper discounts. Instacart is more pricey and their selection is limited. Clicklist has your in store shopping history, so I can quickly order the exact products I buy frequently without having to sort through the product data.
March 30, 2017 at 11:42 pmI found a PT practice near me that specializes in neuro patients (MS, Parkinsons, stroke, etc.). At least they knew what CIDP is without having to google it. It seems that the PT regimen would be similar to MS — maybe call your local MS Society chapter and see who they recommend for PT?
March 30, 2017 at 11:32 pmHi Jim-LA. You post on here quite frequently and often help others, including me with questions (thank you!). You’re obviously tech-savvy, so have you tried online grocery ordering? Our local store allows us to order online, and then pick up curb-side. When I’ve had relative mobility problems, I’ve done that on occasion. They also can deliver. Just a thought — hope you don’t mind the unsolicited suggestion.
March 26, 2017 at 11:17 pmBryan F – I think one of the things insurance companies are looking for in order to approve IVIG is “tried and failed” treatments. Perhaps your issues with steroids will help demonstrate the medical necessity of IVIG. For what it’s worth, I was never on steroids — my neurologist wanted to avoid them because of the side effects.
March 25, 2017 at 11:01 pmMy doctor prescribed a 4 day loading dose of 2g/kg (so 0.5g/kg/day), then doses of 1g/kg every 4 weeks. My research shows this is a fairly typical protocol. Insurance approved every 3 weeks. My MD prefers every 4, but the approval at 3 weeks is nice because it gives me a day or two of wiggling room when scheduling. I’ve only had the loading dose and two maintenance doses, so I don’t feel qualified to answer how it’s working. But I can say I have side effects for 1-5 days after treatment, and the maintenance dose headaches are nothing compared to the loading dose severe migraines.
February 21, 2017 at 3:30 amWe slowed down the next infusion. Took 7 hours for 70g. My side effects were half the severity for half the time. Manageable.
February 21, 2017 at 3:27 amUpdate, was finally approved! Had treatment last Friday.
February 21, 2017 at 3:22 amMy one day outpatient IVIG was $19,000 last week just for the pharmacy! Looks like the contracted rate insurance and I will pay is about $5800. Wow!
January 23, 2017 at 12:22 pmThank you surfnyc. Are you saying that when you registered in the emergency department before being seen, the insurance company somehow approved the treatment?
January 20, 2017 at 4:33 pmAs for tests, chronically elevated WBC (saw a hematologist and cleared for cancer). Elevated C-reactive protein. Both of these show inflammation. Elevated GAD-65 antibodies. Grossly normal MRI, grossly normal spinal tap. Aug 2016 EMG/NCS of legs, one sural nerve response missing. Nov 2016 EMG/NCS of legs and one arm, missing F-response in one nerve of both legs and evidence of demyelination in right arm. Didn’t do other arm for some reason. Diminshed or missing reflexes. Balance/propioception issues. Numbness and weakness in limbs. Issues with temperature control, digestion, orthostatic hypotension and dizziness, periods of extreme fatigue.
January 19, 2017 at 11:24 pmThanks JK. I’ve been prescribed 1g/kg Privigen, around 65 kg weight, so 65g dose. I don’t mind the longer time, but not sure how long the nurse would stay (it’s only a 3-chair center, one nurse). Could you help with the math? Let’s say I average 2mL/kg/hr or 3.2 mg/kg/min how long would that take? I just want to have a way to gauge if I’m being slowed down enough after the intense side effects last time.
