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What are the next steps to take after IVIG has not worked?
Hello,
I am putting this out there in the hopes that someone has experienced something similar and could help.
A year and a half ago my sister ( 29 years old) went through chemo and radiation for her non Hodgkin’s lymphoma cancer.
After 8 months about being cancer free she started developing pain and tingling sensation in her right upper arm. It gradually increased to her upper back, then the right side of her face developed what the emergency room told her was ‘Bell’s palsy’. They gave her meds for that, and it went away but a few weeks later she has it on the other side. That hasn’t gone away till this day. Meanwhile the pain in her arm and hands and back continued to grow and it started also manifesting into her other side.
She went to emergency rooms, and specialist who couldn’t determine what is wrong. Meanwhile her pain and mobility came down rapidly. The pain started going into her legs and eventually making her unable to really walk. She finally was able to see a neurologist who performed some tests and did a lumber puncture or her. The neuro finally after 4 months with this pain and agony diagnosed her with CIDP (Chronic inflammatory demyelinating polyneuropathy).
I would like to note, that while this is going on her oncologist also did another lumber puncture because they did not take enough or the right fluids off the first time to rule out cancer. Although white blood cells were high they did not see any.
The neuro told her she is a special case as her CIDP was not consistent with others he has seen. They started IVIG (infusions) and to our dismay, it only exasperated her pain. She is to the point where she is almost unable to move or do anything and is not in a good place mentally. The neuro told her he has never seen where a patient got worse and was trying to figure out the next plan but he has not reached back out in a week and a half now. As her last ditch effort she decided to go to a university medical hospital to see if they can admit her and maybe get some more eyes on her issues with more experienced doctors, only to be told they have no clue what CIDP is, gave her some morphine and told her they would do a CT scan as she felt her throat was closing in. 7 hours later they still have not done anything for her and didn’t seem interested other than trying to help with the pain.
At this point in a span of 4 months she went from an independent person to someone who can’t even walk, or eat on her own or even shower on her own is in constant pain and beginning for round the clock massages, and no one seems to help or have answers. My elderly parents have been caring for her but they have their own medical issues and have reached their breaking points, I been traveling back and forth to try to help but I have a full time job myself.
My plea is to hope to find someone who knows what next step should we take, where to go from here. My sister has insurance through work, however with her condition rapidly deteriorating she is no longer able to work so the threat of loss of job is here. We tried patient advocate but they haven’t really called us back.
Anyone with experience with this or is able to help would be appreciated.
Thanks!
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You might try a rheumatologist. This could be way off base. Bells Palsy made me think of shingles. You can have shingles without the rash or blister that makes it easy to identify. Radiation and Chemo impair the immune systems ability to repress dormant viruses. Her primary could prescribe an antiviral to see if it might help.
Otherwise, I'd be thinking of autoimmune testing. Sorry for your sister's pain. I hope you find resolution.
I have CIDP but mine developed gradually over 10-15 years so I have had plenty of time to adjust. I can’t imagine how terrifying and devastating to change that fast and get few answers, little help. The IVIG dose can be adjusted to give her less plasma but more frequently. I was on full dose every 3weeks, now on 1/2 dose every week. She may tolerate the low dose just fine. IVIG can be given slowly, weekly, as a subcutaneous injection/infusion. plasmaphoresis might be next step if IVIG doesn’t work out. It is considerably more involved but can be effective in removing the anti bodies causing the CIDP.
She might benefit from a high dose steroid like Prednisone orally. Dr ideally should do a sed rate and CRP to see how much inflammation is present and that might help determine steroid dose. That could be in the 60mg per day range if neurology doc is aggressive. Her situation requires aggressive treatment.
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1 ReactionSorry got interrupted. She should be checked for ALL treatable causes of peripheral neuropathy in case contributing factor's exist. Also checked for other autoimmune disorders such as lupus or rheumatoid arthritis. These can all be checked by blood tests. A condition like those would contribute significantly to her pain and ability to move/walk. Also requires different treatment.
One other drug before/ after plasmapheresis would be Rituxan.
It knocks out anti body forming white blood cells, given IV infusion. Given for lymphoma as well. Can take a long time to work (months).
The fastest, easiest thing right now that works fast (1-7 days). Is an oral steroid. Neurologist could just call it in to pharmacy. It could feel like a miracle in terms of pain.
CIDP is a form of Guillian-Barre Syndrome and there are foundations for GBS/CIDP and others who can help financially for help at home, respite for everyone! You’re dealing with a rare disorder, not well known, severe rapid progression and no help! You might consider Mayo or other specialty clinic if her neurologist is not being aggressive and responsive.
She can get better, probably not 100%, but more comfortable and functional if she gets aggressive treatment. I’m so sorry you are going through this. Autoimmune and neurological disorders are very complex and scary to experience! We’re here for you!
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5 ReactionsYour sister's progression sounds a lot like mine. I have been living with it now for 3 years and I have really great days and really not great days. I have done 2+ years of IvIG. It cut some of the symptoms, but did not stop the progression. I have been 11 weeks on corticoid steroids and don't see any improvement. I am supposed to start the Retuxamab shortly. I was accepted into the Mayo Clinic program and have a fantastic team in Rochester. I just spent a lot of time doing research and reading about others with the condition. I also applied and got Social Security Disability (it took 2 years, but they paid me from the time I applied to when I was approved). It all is ardurous work, but worth it. Also check out The Assistance Fund. Lots of good avenues out there. You just have to dig a little bit for them. I have had a lot of doctors just look at me blankly when I tell them I have CIDP. They have no idea what I am talking about. I decided that I needed to be able to advocate for myself so that is why I spend a lot of time doing research. I fired my first neurologist, so if you are not happy with your doctor, don't be afraid to move forward with another. As I told him, my health is more important than his ego. The other issue that I have come up against is getting my family to understand the disease. Because I don't have stitches or a cast. I didn't have an operation, they (I have sons) don't have much sympathy. Good luck to you and this site is awesome!
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1 Reaction@salgasem86 It must be so difficult caring for your sister, especially from a distance. For a doctor, she might try these two organizations:
NORD - National Organization for Rare Diseases. https://rarediseases.org/
GARD- Genetic and Rare Diseases https://rarediseases.info.nih.gov/
Both groups maintain a list of doctors who work with these diseases. There might be one near you!
Let us know if you find a doctor and keep the group informed about your sister’s progress.
Different IVIG works different for everyone you have to try them to see which one works best I tried four different types and found one the works. IVIG takes up to six months to work every two to one weeks. Every week two doses mine is 35 mgs a day
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