First treatment done. Now wait 1 month or 3?
AnonymousNovember 23, 2010 at 4:29 pm
My first post and feeling fortunate based on some of the things I’m reading. I was a healthy 54 year old woman until about 18 months ago when I started feeling numbness in the soles of my feet. I spent the next 15 months, give or take, trying to get someone (Primary Care Physician, Neurologist, Podiatrist!) to tell me what was going on as the numbness crept up my legs and into my thighs.
By the end of August, I was struggling trying to walk upstairs and my balance was off. Within another two weeks, I couldn’t step up onto a curb or walk without a cane as my balance was so bad.
Despite a visit to the neurologist last spring, I had no diagnosis until I finally couldn’t walk more than 10 steps and then with a weight bearing cane/crutch. I had to give up work because of the fatigue.
My primary care finally got me in to another neurologist’s office where I had an EMG/Nerve conduction study done. CIDP was the diagnosis from the local guy but, since I had already given up hope here on Cape (Cod) and had an appointment in Boston at MGH, I went there for a second opinion. He too said, CIDP.
Here’s the problem.
The Boston hospital prescribed 5 days of IVIg each month for 6 months while the local guy said they only prescribe 5 days initial treatment followed by 5 more in 3 months.
What gives? Frequency? Where do I go to find out about the side effects and best course of action? I no longer believe the medical community has any investment in the individual but I sure as heck do. I have a 13 year old daughter and a great job waiting for me.
AnonymousNovember 23, 2010 at 8:01 pm
I have found that treatment regimens for CIDP often differ depending on the doctor’s philosophy and experience. Sometimes different neurologists in the same medical practice treat CIDP differently! Usually, neurologists in urban medical centers such as Massachusetts General are more experienced and knowledgeable with rare illnesses such as CIDP. Is insurance an issue? As you may know, IVIG is very expensive.
The Boston physician is recommending a much more aggressive IVIG treatment regimen on a monthly basis. I’m no doctor, but it is my understanding IVIG must be infused at least every 30 days to remain effective, and it is not unusual for it to be administered even more often. I receive it every two weeks.
Speak to your physicians about the reasons for their respective treatment recommendations, and potential side effects. You can also go online and research side effects. This forum provides a wealth of information as well.
As for the best course of action, that is up to you to determine, sometimes by trial and error. You need to understand that every case of CIDP is different. Different treatments work or don’t work on an individual basis. Sometimes what works initially then stops working and vice versa. Stay as calm and focused as possible. Educate yourself. Don’t be afraid to demand answers from your doctors. Use the people on this forum for information and support. You need to take charge of and manage your treatment. You and you alone are responsible for your health. Do not rely solely on your doctors. You owe it to yourself and your family to be as pro-active as possible in fighting CIDP.
As far as advice, I cannot tell you what you should do. I can say only that my IVIG treatment regimen has been aggressive and effective. After initial significant side effects my body seems to have adjusted well. I wish you well. Keep in touch with us as you move forward.
November 23, 2010 at 9:07 pm
I started having ivig just every 12 weeks for my first year(standard dose 2kg per lb) I was able to do it in 2 days verses the standard 5 days–was told this basically depends on your age, health, kidney functions. I think a lot of the treatment plans really depend on whether your Dr. is conservative or aggressive in the treatment. I’ve done a lot of internet reading–i think insurance is a biggie in the ivig industry, how bad your cidp is—if its not as progressed seems it isnt treated as aggressively– plus it appears different antibodies respond differently to it. I read on one site that in some cases it is good to let the antibodies “settle” before each round of ivig?? So really its a hard call for us AND the Dr.s to know whats going to work. Each case is so unique. I was recently switched from every 12 to every 6 weeks, just had my first treatment that was 6 not 12 weeks apart and noticed a BIG difference in strength and energy. by the way— im treated in Ma too—at Lahey—excellent dr there. Dr srinivasan–neuromuscular dr. Hope all goes well for you, its hard to give advice with this type of disease as it is so different for everyone–so I’ll just share my experiences and read others experiences to learn–hope this helps : ) Lori
AnonymousNovember 23, 2010 at 9:14 pm
I can certainly relate to what Goodney is talking about and being proactive in one’s treatment.
I was told by my neuro in December of 2009 (after a severe regression) that he couldn’t do anything for me and I would just have to learn to accept that I had a “bad case of GBS” and refused to run any tests.
I told him to his face that he was full of BS and he was wrong. I couldn’t pinpoint WHY my condition had worsened but I knew it wasn’t simply a bad case of GBS.
I was then sent to a nursing home and got worse – much worse – and I was adamant and complained there was something wrong every single day. The staff hated me. I simply deteriorated there for 6 weeks to the point where I almost died.
As it turned out, my neuro finally got tired of me complaining and ordered another lumbar puncture and the results concluded that I had CIDP and not GBS.
Though my neuro obviously feels differently, I feel like I saved my own ass because of my big mouth more than he did. I was as stubborn as a mule and wouldn’t accept that he couldn’t do anything about it.
I’m fine now. I’ve recovered far beyond what anyone could have expected. But it was a very long and tumultuous road getting here.
Keep fighting. Nobody knows how your body feels better than you do.
Sorry. Got way off topic here, but Goodney’s comment struck a chord with me.
AnonymousNovember 23, 2010 at 9:32 pm
When I first started getting IVIG I had it every three months.
I would feel great and then toward the end I couldn’t do anything but lie in bed in pain, counting down the days until next IVIG!
After much reading on this site and talking with people I convinced my doctor to switch to monthly infusions. Boy am I glad I did!:)
I now go every month and I am stronger and can do more.
I would recommend the once a month idea. Talk to your doctors, tell them what you think and remember to drink lots for two days before IVIG. I also take Tylenol and Benadryl to help reduce any side effects!
Rhonda from Canada
AnonymousNovember 23, 2010 at 10:47 pm
My man emitch74 always tells it like it is. He literally pulled himself off his death bed in that nursing home. Until I got sick with this chronic and incurable disease, I had no idea how politics and money influenced the practice of medicine. Whether it’s insurance companies, pharmaceutical companies, specialty pharmacies, home nursing agencies, hospitals or doctors, the players in the health care system have an interest in protecting their turf, their profits, and their egos. I am certain that many physicians are genuinely caring and concerned for their patients. Some obviously are not. However, even the good doctors can’t make much of a difference in a perverse health care system that is only willing to pay doctors to treat us all like products on an assembly line. The system hates nothing more than a patient who’s difficult and EXPENSIVE!!! to treat. You’re absolutely right, the medical community is invested in itself and itself alone. All the more reason you need to look out for yourself and we all need to help each other…which we WILL do.:mad:
AnonymousNovember 24, 2010 at 8:56 pm
recommendations for docs who will FOLLOW THEIR orders!
I can only recall one other instance [ in the 7 years I’ve had CIDP] where, a doc orders a loading dose and then says ‘see you later in a while!’!!!!? Duh?
So either Try and make [right?] the neuro who’s giving you the IVIG on such as schedule to talk to Boston? Or simply have Boston call and say what the ‘fudge’? Boston probably sent a letter to your neuro’s practice…get a copy-ask for it! Having that helps YOU lay down terms in terms of how you should be treated- or agree to be treated. If your neuro isn’t following recommendations? Please, find someone else! The latter [Boston calling your neuro] mite be best, as little dogs want to be near or run with the big ones…. Peer status and all that!
While that sounds a bit crass? It’s reality. Sigh.
Are there any other neuros in different practices in your area? Worth a try, but let the big dogs lead the way!
By the way? Your onset, age and everything sounds like ME a few years ago! Please fight for the better treatment you deserve and get it while you can! That’s what I did and I’d been lucky. I hope and pray you are too! And soon! Hope and heart! Let us all know how it goes, please.
Keep faith and strength [what little you’ve got left] and go kick back ends! :rolleyes:
AnonymousNovember 29, 2010 at 1:27 pm
I got as few as none (hahha doesn’t count, does it?)
Ok, as few as two days in a row once a month for 5 months and then discontinued (the neurologist feared ‘infection and death’). His words, exactly. This was not enough, decline continued.
I was put on another plan several months later of twice a week for three months, and then started a taper of once a week for three months, then once in two weeks for a couple months. Once in two weeks was not enough, decline continued.
Now I get .4g/kg each day for three days every 3 weeks. And, that might not be enough.
However, I am also taking an immune suppressant with the doctors’ long term goal of tapering the ivig to nothing.
AnonymousNovember 30, 2010 at 6:18 pm
Please read other postings on IVIG scheduling. In upper right hand corner of this page is the “Search” tab. Enter IVIG scheduling or something similar–then lots of old posts will come up to read.
I have IVIG 6 times a month–going on 6 years. Neurologists differ with how often they will prescribe infusion. My neuro gives IVIG more than any other one in my city. I’m lucky to have found him. I was able to put my crutches in the closet with the walker. We’ve tried to lengthen out time between infusions but it didn’t work for me as I back slid.
You need to find the right schedule for you. Most here would say having IVIG more often than not is better.
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