Saw my regular dr and he was wondering how long I should be receiving IVIG treatments. It will be a year for me next month. He believes it is all about money. He suggests getting a second opinion from a research hospital like Boston's Brigham & Young. However, I believe the treatments have helped w/my strength. Not sure what to do. Suggestions?
i'm in canada so not sure how much this helps. sorry but we don't have to worry so much about the cost here. however my neuro was concerned with over-doing it when my ivig infusions were every 4 wks. i've had a couple of relapses & they have been increased from every 4 wks to 3 to 2 since last fall. now i'm tempted to ask for 2 days in a row every 2 or 3 infusions because i find i dont feel as strong as i think i should after ivig. last fall i had a relapse when my neuro was away on vacation & the "team" looking after me (as an in-patient) gave me a 5day loading dose then 5 days after the end of that they gave me 1 day dose. i immediately felt like a million bucks. better than i had since months before i got sick. my neuro then returned from vacation & put me back on the 3 wk schedule. but he could see from my test results that i started going downhill again. thats when he put me on the 2wk schedule. we both feel i should continue having ivig as long as i feel some benefit from it.
If you stop one week after your following dose should occurr you will be asking for something to help. If you are in complete remission maybe not you may be fine. Until you relaps. I would follow the advise of a good numerologist that has experience with CIDP.
Hi Laurie -My CIDP is left hand/right leg & foot. It's referred to as asymmetrical. I've been getting IVIG for two years now. Started off monthly, then every 3 weeks, now every two weeks. At one point during my 3 week term I had a bacterial infection (unrelated to my CIDP) and had to delay my infusion by 2 weeks (so now a total of 5 weeks in-between). At week 4 I lost my left foot and part of my left leg and experienced severe neuropathy. That's when my Team (neuro & infusion RN & pharmacist) recommended 2 weeks. It works perfect for me. My symptoms don't return till 2/3 days before my next infusion. In all of our opinions it doesn't get much better than that. BTW my IG is Gammunex-C, fyi.
My neurologist is just outside of Boston - her name is Marjorie Ross @ Newton-Wellesley Hospital. When I first met her I asked for a 2nd opinion (which she encouraged) and on her recommendation met with Dr. Anthony Amato @ Brigham & Women's Hospital in Boston (Vice Chairman of Neuorolgy) he was a complete jerk - very dismissive and demeaning - extremely full of himself and gave me no direction. Dr. Ross listens and tweaks & responds to emails almost immediately.
I guess my point is, with no offense intended to your reguar doctor, he really shouldn't speak of what he does not know. You are the only one who knows your body - trust yourself first always as you are your best advocate - and as mdolich suggested get a neuro who is familiar with CIDP. Best of luck!
I would get a second opinion. If he isn't willing to listen to you saying they have helped and thinks its all about money then its time to move on. I am in the same boat. My neuro moved and the office assigned me a new one. He says because my CIDP has axonal damage then its not CIDP at all. He thinks it is a zinc deficiency. I was taken off my IVIG and my cellcept and put on Zinc. My feet have already started going numb again and the pain is terrible. I have asked for a new doctor. I am afraid that the insurance will get wind of the new regimen and not restart my IVIG. I wish you Good Luck!
I have to agree with your Dr, based on my own experience. After a year of IVIG, based on a diagnosis of CIDP, it seemed to become less effective. Through a series of events, I ended up in the hospital and during a thorough, in-depth study, the diagnosis was changed to something much different, and even more rare, called POEMS Syndrome. CIDP occurs in 8 of 100,000, I believe, while POEMS, being so rare, is diagnosed somewhere in the neighborhood of 3 in a MILLION!
https://rarediseases.info.nih.gov/gard/7411/poems-syndrome/resources/1
Suggestion, Drs are human and all want to be supported in their opinions. A Dr may be inclined to refer you to an organization or a specific individual that will corroborate his or her diagnosis. I believe that is what happened to me. So be sure you are entirely comfortable with the Dr you see.
I live within an hour’s drive of a big city, so I could look at several places to find a non-connected Dr. who might give me a separate opinion.
Study, learn, be proactive!
All of my Drs say it’s likely that I never would have received this correct diagnosis were it not for the relentless questioning by my wife and me.
Be positive, and keep pushing for answers. Unless your Dr. specializes in CIDP alone, or is open to considering POEMS, he/she may not be as familiar as one would like.
This is not like treating a cold, or the flu.
If you are his only patient with this dx, consider how much time he has for study and research of your special case!
If he sees 15 patients a day, 4 days a week, and sees you once every 6 weeks. That is pretty limited time to “bone up” on your type of illness, let alone your specific (read unique) issues. You need to be a TEAM! Asking questions and SHARING things you have read!
Best of luck with your second opinion. I advise you to have your dr study, test for, and rule out POEMS Syndrome.
Thanks to all for your input. So grateful for this site & the caring, positive people. Laurie
Laurie, If you mean your GP Dr as regular Dr I would suggest not to get to excited, as i Learned the hard way a GP most likely doesn't have a clue about CIDP or it's treatment's. If your Neurologist is up on CIDP stick with him. Do your homework and ask questions,
I've been on IVIG for two years, 90 gr every 4 weeks. Do to an insurance foul up I missed three treatments. I started going down hill after about 45 days. I was so happy when my treatments started back. It was the first time I was actually looking forward to a treatment.
God Bless
I'm so glad you got the correct diagnosis. POEMS is so rare! My bother-in-law was going down hill fast because he had plasma pherisis in Texas. It removes the marker for POEMS. By the time he got to Mayo Clinic, it had been two weeks since he had his blood cleaned and the marker was there again. After he was seen at Mayo Clinic, he was transported back to Texas with strict directions on how to treat POEMS. Good luck! Now you will get the help you need.
Capt001Mike said:
I have to agree with your Dr, based on my own experience. After a year of IVIG, based on a diagnosis of CIDP, it seemed to become less effective. Through a series of events, I ended up in the hospital and during a thorough, in-depth study, the diagnosis was changed to something much different, and even more rare, called POEMS Syndrome. CIDP occurs in 8 of 100,000, I believe, while POEMS, being so rare, is diagnosed somewhere in the neighborhood of 3 in a MILLION!
https://rarediseases.info.nih.gov/gard/7411/poems-syndrome/resources/1
Suggestion, Drs are human and all want to be supported in their opinions. A Dr may be inclined to refer you to an organization or a specific individual that will corroborate his or her diagnosis. I believe that is what happened to me. So be sure you are entirely comfortable with the Dr you see.
I live within an hour's drive of a big city, so I could look at several places to find a non-connected Dr. who might give me a separate opinion.
Study, learn, be proactive!
All of my Drs say it's likely that I never would have received this correct diagnosis were it not for the relentless questioning by my wife and me.
Be positive, and keep pushing for answers. Unless your Dr. specializes in CIDP alone, or is open to considering POEMS, he/she may not be as familiar as one would like.
This is not like treating a cold, or the flu.
If you are his only patient with this dx, consider how much time he has for study and research of your special case!
If he sees 15 patients a day, 4 days a week, and sees you once every 6 weeks. That is pretty limited time to "bone up" on your type of illness, let alone your specific (read unique) issues. You need to be a TEAM! Asking questions and SHARING things you have read!
Best of luck with your second opinion. I advise you to have your dr study, test for, and rule out POEMS Syndrome.
POEMS is a different “animal”! Regular IVIG treatment kept me from losing as much function, but did nothing to help me begin recovery. And SCT is not a guaranteed long term solution for everyone. First we need a carefully confirmed diagnosis, the begin with the best, most foolproof treatment. If that is not effective try something else! Don’t give up! Keep striving to make progress!
JanD said:
I’m so glad you got the correct diagnosis. POEMS is so rare! My bother-in-law was going down hill fast because he had plasma pherisis in Texas. It removes the marker for POEMS. By the time he got to Mayo Clinic, it had been two weeks since he had his blood cleaned and the marker was there again. After he was seen at Mayo Clinic, he was transported back to Texas with strict directions on how to treat POEMS. Good luck! Now you will get the help you need.
Capt001Mike said:I have to agree with your Dr, based on my own experience. After a year of IVIG, based on a diagnosis of CIDP, it seemed to become less effective. Through a series of events, I ended up in the hospital and during a thorough, in-depth study, the diagnosis was changed to something much different, and even more rare, called POEMS Syndrome. CIDP occurs in 8 of 100,000, I believe, while POEMS, being so rare, is diagnosed somewhere in the neighborhood of 3 in a MILLION!
https://rarediseases.info.nih.gov/gard/7411/poems-syndrome/resources/1
Suggestion, Drs are human and all want to be supported in their opinions. A Dr may be inclined to refer you to an organization or a specific individual that will corroborate his or her diagnosis. I believe that is what happened to me. So be sure you are entirely comfortable with the Dr you see.
I live within an hour’s drive of a big city, so I could look at several places to find a non-connected Dr. who might give me a separate opinion.
Study, learn, be proactive!
All of my Drs say it’s likely that I never would have received this correct diagnosis were it not for the relentless questioning by my wife and me.
Be positive, and keep pushing for answers. Unless your Dr. specializes in CIDP alone, or is open to considering POEMS, he/she may not be as familiar as one would like.
This is not like treating a cold, or the flu.
If you are his only patient with this dx, consider how much time he has for study and research of your special case!
If he sees 15 patients a day, 4 days a week, and sees you once every 6 weeks. That is pretty limited time to “bone up” on your type of illness, let alone your specific (read unique) issues. You need to be a TEAM! Asking questions and SHARING things you have read!
Best of luck with your second opinion. I advise you to have your dr study, test for, and rule out POEMS Syndrome.