Hi B – We resumed IVIG while she was still on the steroids & we noticed an improvement right away. She has always responded well to the IVIG.

Kelly

Hi there – My daughter was one of the few people with CIDP who got worse while on steroids. Her highest dose was 20 mgs a day & she went from relapsing every 12 days to every 9 or 10. We started a slow taper & resumed IVIG & she improved immediately.

I did extensive research on this topic years ago & you are correct that there is research stating that a small portion of CIDP’ers (mainly motor) do get worse with steroids. Here is a link with info on treatments for CIDP:

http://www.medmerits.com/index.php/article/immunotherapy_in_neuromuscular_disorders/P4

The paragraph explaining steroids states: Steroids are widely used for CIDP treatment. However, only 1 randomized, unblinded trial showed effectiveness at 12 weeks (Dyck et al 1982). Many randomized as well as uncontrolled trials and case series suggest that steroids are effective in CIDP treatment (Joint Task Force of the EFNS and the PNS 2010b). A recent randomized trial has suggested similar effectiveness and lower side effects when using pulsed dexamethasone, compared to standard steroid regimens (van Schaik et al 2010). This response is sustained in the long-term in a significant proportion of patients, some of them, as seen with IVIg, evolving to remission (Eftimov et al 2012).

A subset of patients with CIDP, particularly those with pure motor forms of CIDP, may worsen with steroids. This must be considered in case of patient deterioration while on steroid treatment (Mehndiratta and Hughes 2002).

My daughter had pain (numbness & “charlie horses”) and muscle weakness. She also had inflammation on her cranial nerves which caused her right eye to become paralyzed looking in towards her nose. In addition, she had inflammation on her spine from the lower lumbar area down. And she had autonomic nervous involvement – trouble swallowing & terrible digestive issues. Right before she was diagnosed & started on IVIG, she also experienced some urinary incontinence issues.

She was 4 years & 3 months old at the age of diagnosis. She is now almost 12 years old (in a little over a week) and has been off of all treatments for a few months now. We are hoping she has reached “the R word”. (KNOCK ON WOOD!)

Kelly

Some people with CIDP have nearly normal EMG’s. No one knows why.

Some other tests you should have are an MRI of your brain & spine. This should be done with & without contrast, a spinal tap to check the protein levels in your spinal fluid & blood tests for SED rate, ANA, and CPK.

It doesn’t hurt to have allergy testing done as well. Some people experience muscle weakness & tingling from different allergies – including food allergies. You may need to find a DAN (Defeat Autism Now) dr in order to get the appropriate allergy testing done – they seem to be the ones most interested & up to date on this subject.

I know it must be frustrating to know something is wrong with you but to not have answers. Keep searching for a dr that can help you. If you can, get yourself into a bigger medical center – like Mayo or John’s Hopkins.

Good luck,
Kelly

Hi there.

Your daughter’s symptoms sound an awful like my daughter’s symptoms. Emily was 4 was she was dx’d with GBS & then later on, CIDP.

She too had double vision – it’s called diplopia. And her relapses ALWAYS started with eye issues. Her right eye, at one point, was turned in looking toward her nose.

Has your daughter had an MRI with contrast of her brain to check for inflammation? Emily had inflammation on her cranial nerves (also along her spine from the lower lumbar down).

It took MASSIVE amounts of IVIG to get Emily back on track. She was getting around 200 grams a month for awhile. It’s been 7 years since her diagnosis & she lives life like a “normal” kid. We just stopped her IVIG to see if she can go without it (fingers crossed!).

When Emily was 5, she was getting IVIG every 10 days. We saw a specialist who decided to lengthen the time between treatments & give her Prednisone. After 2 months of the ‘roids, she went from relapsing every 12 days to every 9. I took her to another dr & we tapered her off the ‘roids. We found that she would need IVIG every 7-10 days, when she was relapsing every 12. We slowly lengthened the time between treatments but she always received the same amount (20 grams).

You said something about taking your daughter to Baltimore? Have you contacted John Hopkins Hospital?

Kelly

Hi Larry – My daughter is very well – thanks for asking. She has had CIDP for 7 years now & we are currently attempting to wean her off of the IVIG completely by the end of June.

Did you ever hear back from your brother’s dr?

Kelly

Hi Maddie – Some answers….

1) I don’t have CIDP but my 11 year old daughter does. I asked her how she distinguishes CIDP pain vs achy muscles. She said that when she’s just achy her whole leg (for example) will hurt. If it’s CIDP, she says she feels the pain in small random spots in the same muscle. She said, on her thigh, she might feel the pain in 3-4 different places & each spot is about the size of a quarter. She says it’s very intense & painful.

2) It’s hard to say how much the IVIG will help. It is different at each infusion. Some infusions would seem to help my daughter more than others.

3) I don’t really know much about pain meds as my daughter only took Motrin for the pain. Rx pain meds were offered but I didn’t like the idea of putting my, then, 4 year old on them.

You said that you get  monthly infusion but that you only have 3 weeks without pain. I would suggest that you get your infusion before that pain starts. The myelin is starting to get damaged before the pain starts – so I would say try to get treatments before the 3 week mark. Also, it might be a good idea to get a loading dose of IVIG and then change your treatment plan to more frequent infusion.

Kelly

I was advised to NEVER allow Emily to get a flu shot. Her CIDP symptoms started about a month before she received her only flu shot, back in 2005, &  within weeks of the flu shot she was in the hospital.  Her dr’s say she should not ever be vaccinated again for anything.

For your veins…have you considered getting a port? Emily had one for YEARS & it was great. She is a really difficult stick (she has very deep veins) and the port is so easy to access.

I’m sorry you were so sick. You might want to ask your dr about doing a loading dose or two to get you back on track. How long do you normally go in between infusions? If you notice a decline at 10 days then perhaps you should see about getting weekly treatments. Emily relapsed every 9 days for awhile & she was on weekly IVIG’s.  We were able to stretch them to every 10 days, every 2 weeks & so on. She’s now at every 5-6 weeks.

Kelly