Problems with IVIG
August 16, 2013 at 7:48 am
I have been getting IVIG about once every other month for over 15 years now. I get a meningitis type headache reation every time that lasts about a week, but until recently that has been the only problem. The last two treatments, I have had gross hematuria (blood in urine) starting the day after infusion and decreasing slowly over the next three weeks. I have had all tests run by a Nephrologist (kidney specialist) and no one can figure out what is going on. Everything comes back normal, but they have stopped my treatments because we are worried that I may go into complete kidney failure fomr the IVIG. It has been suggested that I go somewhere else in the US for a second opinion and possible alternative treatments, since it looks like I may not be able to receive IVIG anymore.
Does anyone out there know of someplace I can go that has the best doctors specializing in CIDP? I don’t want to waste time and money going somewhere just to find out they don’t know what to do either.
Thanks…would appreciate any help!
August 16, 2013 at 6:03 pm
I have had IVIG for 19 years. I have a kidney problem blamed on IVIG. This is what my neurologist and nephrologist have agreed upon: Max dlivery rate is 50. Pre medicate with hydrocotisone, and two hours before iv loratadine, zantac and singulair. Also two days prior to IVIG blood work (CMP) and if the creatinin level is above 1.8 we do not do the IVIG. Drink lots and lots of water for 3 days and do the test again.
August 16, 2013 at 10:00 pm
There may be expert second opinions available in your area, but you did not mention a location.
IVIG is not the only treatment for CIDP, especially when it is not well tolerated. Have you tried some of the other more easily tolerable treatments such as Plasmapheresis?
If your CIDP is not in some state of remission and your auto-immune system continues to produce the harmful anti-bodies, there is the Stem Cell Transplant option … if you qualify for the Clinical Trial and your insurance will cover it (Medicare will not).
August 17, 2013 at 1:34 am
Thank you for your response. I live in Oregon (the Portland area) and have been treated at Oregon Health & Sciences University. Plasmapheresis has not been offered and I have Medicare, so would not qualify for the clinical trail. =(
August 17, 2013 at 5:55 pm
If you are a member of GBS–CIDP Foundation you should receive the Summer issue of The Communicator soon (I just received my copy today). It contains a very good article written by Dr Saperstein about how to use IVIG for CIDP. The article addresses some of the issues you are talking about here in this forum.
The GBS–CIDP Foundation has a chapter in Lake Oswego. It is staffed by Dr John F Schilke MD, phone 503 636 0166. He should be able to refer you to a doctor in your area for a second opinion.
OHSU looks like a good place to get help for CIDP. I tried several searches on their website to find CIDP or GBS specialists and got zip each try. I guess this means none of their doctors have listed the diseases as a sub-specialty or interest. I did learn they recently completed the following Clinical Trial at their Neuromuscular Disease Center; this might be worth your investigation:
IRB00005176 Lipoic acid for Chronic Inflammatory Demyelinating Polyneuropathy — a randomized, double-blind, placebo controlled pilot study. Managed by Dr. Jau-Shin Lou
The purpose of this pilot study is to examine if alpha lipoic acid (LA) is an effective treatment for chronic inflammatory demyelinating polyneuropathy (CIDP). Lipoic acid has anti-oxidant and anti-inflammatory properties. It is naturally present in the body and often used as a dietary supplement. For more information about the study, please contact Diana Dimitrova at 503 494-7269 or firstname.lastname@example.org.
Here is the official listing: http://clinicaltrials.gov/ct2/show/NCT00962429?term=CIDP&state1=NA%3AUS%3AOR&rank=1
Hope this info helps.
August 26, 2013 at 7:53 pm
Thanks for the info! I have already talked to Dr. Schilke and he was helpful, but had never heard of this type of a reaction. He suggested I talk to the medical board at the Foundation and I called, but they have not returned my call.
I was aware of the clinical trial, and checked into it, but had no need to change treatments at that time. I believe it is now over, darn it! I have been treated at OHSU for the last 15 years and when first diagnosed, they had a neurologist on staff that specialized in CIDP. She left after a couple years, and since then I have just been followed by the MS clinic. It was my neuro there that suggested that I explore other parts of the country for a specialist that can see me and possibly find a treatment other than IVIG, since she didn;t know of any other options.
I guess I will keep searching….and hoping someone can give me a recomendation as to who I can see that is knowledgable!
August 26, 2013 at 7:55 pm
Do you mind me asking what kind of kidney problems you have been having? Are you getting Hematuria from the IVIG like me? Is the treatment proticol they have you on now working for your problems? Any info would be appreciated!
August 26, 2013 at 8:32 pm
I do not have a name. My blood work shows “high” creatine levels. The nephrologist required CMP blood tesyt prior to each IVIG. If the creatine level was over 1.8 then no IVIG. Other than the blood work results I have no symptoms of kidney problems that I am aware of. No hematuria or any thing else.
They do not really know if IVIG is the cause of the elevated creatine but think it may be. The elevated creatine level is an indication that my kidneys are not functioning a well as they should. They really do not know why.
August 26, 2013 at 8:43 pm
I will have to check with my Nephrologist, but I seem to remember that she said all my levels and kidney function were fine. That’s why they can’t seem to figure out what is causing the kidneys to bleed. I know the biggest worry is that IVIG CAN cause complete kidney failure without notice, so they are thinking mine are telling me to go easy…LOL.
Thanks for the info..good luck to you!
August 28, 2013 at 6:25 pm
Hi Karen (KK1954)
There are several good CIDP specialist choices in Seattle if you don’t mind a couple hours drive up the 5!
Earlier this year I researched CIDP treatment options in the Seattle area and have been in contact with some of the doctors and their assistants. I am aware of three facilities in Seattle that appear to have good GBS/CIDP specialists:
• University of Washington – Department of Neurology … Dr Michael Weiss http://depts.washington.edu/neurolog/divisions/neuromuscular-diseases/neuromuscular-specialists.html
• Swedish – Cherry Hill Campus … Dr Liou Lee-Loung http://www.swedish.org/Physicians/Lee-Loung-Liou?returnUrl=%2fPhysicians%3fSpecialtyType%3d%26AdultSpecialtyID%3d-1%26PediatricSpecialtyID%3d-1%26AllSpecialtyID%3d2258%26LastName%3d%26Keyword%3d%26Address%3d%26MaxDistance%3d10%26showHide%3d%26ClinicalInterestID%3d-1%26Gender%3d#axzz2dECm71Yb
• Northwest Hospital and Medical Center … Dr Marc Kirschner http://www.nwhospital.org/physicians/md_detail.asp?mdid=4329
Here is another GBS/CIDP forum thread about docs in Seattle: http://www.gbs-cidp.org/topic/moving-to-seattle-need-new-neuro
There are no doubt other choices that I am not aware of. Maybe others reading this thread can offer some more suggestions in and around the Portland, OR area.
I plan (after 1/1/14 when new Medicare rules go into affect) to undergo the stem cell transplant treatment being offered by the University of Seattle – Dr George E. Georges.
Good luck and let us know if you find a good CIDP Doc.
February 18, 2016 at 8:05 pm
Been a while and I was wondering if you got your stem cell transplant treatment and how it went. Did it work?
I have not had ANY treatment for almost 2 years now, but will be trying IVIG again in a couple weeks. I am very nervous because I had a minor stroke last year. We were going to do Rituxan, but they nixed that after a Melanoma diagnosis. Guess they don’t want to do anything that would supress my immune system. 🙁
So only option ( since I have gotten much weaker without TX) is IVIG.
February 18, 2016 at 10:51 pm
Hi Karen, nice to hear from you! The SCT is still considered experimental and would have bankrupt me at a cost of nearly $500K!
As an alternative, I have successfully used Rituxan to treat my CIDP and Lymphoma. You can search the forums and read my detailed results.
Rituxan doesn’t suppress the immune system, it applies a marker to cells that don’t belong (typically antibodies that are attacking “self” or arthritic conditions that are causing inflammation) then the immune system removes the marked cells like they would any alien invader.
There was a CIDP study made in 2012 and a very small fraction of the study participants (less than 0.5%) got melanoma from taking Rituxan. This raised a red flag to many neurologists. Then a 2014 follow-up article may have further stoked those that were on the fence about it:
What is needed is a comprehensive study to ascertain the risks of melanoma when using different infusion rates of Rituxan. The lesser of the two evils, on an individualized basis, may be what is needed to make the best treatment decisions.
Its unfortunate that our disease varies so much between people and treatment approaches vary amongst the medical profession. I think this is all related due to the rarity of CIDP and medical professionals experienced with it. This coupled with the fear of making a bad decision and being sued, has many medical providers procrastinating a decision.
February 18, 2016 at 11:05 pm
I have already had Melanoma, actually recently (one year ago), so I think that is why they are reluctant to give me Rituxan right now. My IVIG infusion is scheduled for the 19th, and we will see if I get the bleeding kidneys again, etc.
I SO wish I could continue without any treatments, but my quality of life has greatly gone downhill without them. 🙁
How did the Rituxan work for you? Did it resolve your CIDP and did you have side effects?
February 19, 2016 at 8:55 pm
I know that some patients had SCT at Chicago’s North Western University by Dr. Burt and that Medicare paid for it. Have you contacted them?
February 20, 2016 at 6:57 pm
Thanks for the advice JK!
With gratitude to Rituxan treatments, my CIDP is presently in recession. I don’t need to make myself as sick as a dog for 3-4 months in order to get the experimental HSCT that may or may not offer me additional benefits. It certainly offers me no benefits financially.
I’ve spent a large number of hours corresponding and talking to Dr Burt’s admin (Gozdziak), Dr George’s admin (McLaughlin), a face to face discussion with Dr Lewis about HSCT, and many more hours reading though and researching what Medicare will and will not cover.
Medicare section 2709 “COVERAGE FOR INDIVIDUALS PARTICIPATING IN APPROVED CLINICAL TRIALS” see http://www.hhs.gov/healthcare/rights/law/patient-protection.pdf went into affect 1/1/14. However, not all Medicare is alike! There are Medicare Advantage plans, HMO’s, PPO’s, and an array of Supplement plans. Most require a justification of medical necessity where you must have a life threatening condition in order to be considered for coverage. Most of the time you will be denied coverage and have to go thru the appeal process. Been there, done that…it’s not fun and took me almost a year before I had success getting reimbursement for a power wheelchair!
Medicare will not cover HSCT related costs for housing, food, supplies, most transportation (interstate and local), and caregivers. My uncovered HSCT costs would exceed $150K if Medicare were to cover the typical 80% of the total medical. Crowd funding isn’t as viable an option as it was when it first came on the scene (too many frauds looking for a fast buck these days). If you work for a government agency (as Alice Dicroce did at the time of her HSCT), you can get almost all the HSCT related costs covered.
My age disqualified me from Dr Burt’s program in 2013 when I applied (his cutoff is 65). Because I have been in a wheelchair since 2008, he was also worried that my muscles had atrophied beyond an acceptable level for HSCT to work. Dr George’s program in Seattle goes to age 70.
My Rituxan treatments are well covered by Medicare and working good for me. I can’t afford HSCT and my eligibility ends in a few months.
There are now four HSCT clinical trials running (Chicago, two in Seattle, Denver). There is also a good one in Tel Aviv.
February 20, 2016 at 7:11 pm
Looks like the link I cited has been removed. Try this similar one:
February 20, 2016 at 9:39 pm
Hi Jim, Thanks for your thorough explanation. No, the first link no longer works. And the link that does work goes straight to the Affordable Care Act (ACA) Private Insurance Tab.
It’s true that the folks I know about went to Chicago before the Affordable Care Act became law. However, the majority of the costs for HSCT, other than travel and lodging, are mostly Medicare Part A costs and are covered 100%.
The rest, if you only consider the original ‘retail’ price likely looks very high. A comparison. My friend, on Medicare, just went to the hospital for 2 days and had two stents put in. Total ‘retail’ charges $187,000. Medicare authorized all the charges and paid $11,000 leaving only the few days hospital out of pocket for the friend to pay. About $1,200.
I have read your postings and know you’ve done your homework. I’m happy the Rituxan is working for you and maybe you’ve won a remission reprieve.
For those still taking Rituxan and having problems, the HSCT is still an option, as you point out. And, if for some reason a reader is on disability and under age 65 (70 for Seattle) it behooves them to keep an open mind about using Medicare to have the HSCT.
At any rate, for other readers, do what Jim has done- always check with the providers. Request a Medicare payment determination. They may have alternative ways of helping out. For example, when I went to Cleveland Clinic Ohio they had a housing option available provided by volunteers who provided free rooms in their private homes.
I’m sure Paula at Northwestern has talked over all of this with you.
And, now back to the original poster and what can be done about Rituxan related illness and finding CIDP experts.
February 21, 2016 at 1:31 am
I did spend some serious time looking into HSCT. I had originally applied in 2013. Then learned about the new ACA law scheduled for 1/1/2014. Without the new law my chances of getting Medicare to cover HSCT were nill.
The ACA covers clinical trials, but only for life-threatening diseases approved in advance.
Standard Medicare part A and B coverage does not apply to clinical trials as of 1/1/2014 when the ACA redefined coverage. The new ACA section 2709 defines coverages for clinical trials where cancer or other life-threatening disease are present. GBS/CIDP is not generally considered life-threatening.
The new ICD-10 billing codes are to be used when applying for coverage on form CMS 1450. Codes such as 59992 lodging, 59994 transportation, 59996 meals are all excluded from coverage, as is the related cost of a caregiver.
100% coverage for items considered “covered” is still possible, but I think the net result will be closer to 80% coverage IF the life-threatening provision can be brought into play.
Thanks for your always thoughtful, unbiased, and helpful posts!
February 26, 2016 at 9:13 pm
Here is a better summary of what the Public Health Services Act Section 2709 says about coverage for Clinical Trials (like for HSCT): http://m.aaci-cancer.org/public-issues/pdf/ACA_Section_2709_FAQ_Final_2_3_2014.pdf
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