AnonymousJune 13, 2011 at 7:52 pm
New member here- diagnosed with CIDP in Nov 2010. Went through 6 months of IVIG treatments and didn’t respond to treatment. Recent EMG showed virtually no difference from a year ago. Off of treatments now, my Doc stumped, he is recommending steroids as next approach. I’m losing faith in him, plus he has a lousy bed side manner. Anybody have a recommendation for a doc in Phila area?
AnonymousJune 13, 2011 at 8:52 pm
Although IVIG is considered by many neurologists to be a first-line treatment for CIDP, there are a number of other options.
If you are losing faith in your physician, then it is probably time to seek out another opinion, at the least. I hear good things about the neurologists at the University of Pennsylvania in Philadelphia. Contact Penn and inquire as to who there takes on patients with CIDP. Best of luck.
AnonymousJune 13, 2011 at 9:42 pm
I have had 8 IVIG of 60g every 3 weeks and 2 of 20g am scheduled for 2 more than a vist to my neuor to check strenght etc. I have faith in him, but I was hoping to be walking and with out a cane and walking more then from the car to the store. I was hoping to be out riding the mower. My balance is horrible and I can not carry things. I go tomorrow for my 11th IVIG.
Would be happy to hear from you, need words of encouragement.
AnonymousJune 16, 2011 at 2:31 pm
I suggest you try Dr. David Cornblath at Johns Hopkins Hospital. He is an expert on CIDP as well as other diseases of the nervous system. I highly recommend at the very least a one time evaluation and recommendation, even if treatment is done closer to home. Hopkins is relatively easy to get to from Philadelphia.
AnonymousJune 16, 2011 at 4:49 pm
Does anyone know of a good neurologist for CIDP in Southern California; specifically, Orange County, California. I go to MDA center in Orange, CA, but I am not impressed with them. I have another neurologist who consults w/ the MDA MD in Orange.
I am only getting IVIG; now every 10 days as compared w/ every 2 weeks. I was on q2 weeks for 2 months only and I became weaker.”Weak” in the sense that I did not feel as “normal” as I did with the IVIG q10 days. I did not like to be on the “edge of weakness”. In your opinion, Does this constitute a valid reason for changing my IVIG back to q10 days? My doctor has tried the q2 week IVIG regimen twice in the last 8 months and I failed twice after 2 months.
Am i going to be on IVIG for the rest of my life? I get 25 gms now q10 days.
I feel like a guinea pig–the doctor was trying to lengthen the days of IVIG; if that worked, then he would decrease the dose. But apparently, this has not worked. Now I have to work myself back up to “normal” again. In the meantime, my muscles (leg) are starting to ache.
AnonymousJune 17, 2011 at 11:12 pm
My neurologist is very good. Unfortunately for you, he is with Kaiser Permanente and is in Bellflower.
Because everybody responds differently to treatments, there is no way for any doctor is able to create a protocol that won’t involve some trial-and-error. It is perfectly reasonable to try to lengthen the interval between infusions and to reduce the dose: there is no point in getting more medicine than you need. However, if you notice increasing weakness in days 11 through 14 after an infusion, a ten-day interval is reasonable. Once you recover to where you had been with that interval, it is reasonable to try reducing the dose, even if only by a few grams.
It might be time to consider other treatment options. You might consider plasmapheresis or adding an immunosuppressant. Immunosuppressants carry risk of longer-term complications, so you need to weigh your tolerance for risk and need for a longer interval.
Godspeed in finding the right interval/dose for you and a neurologist you are happier with.
AnonymousJune 24, 2011 at 1:33 am
To MarkEns–Thanks for your input on IVIG. I think if I continue every 10 days of IVIG, I will feel much better. The IVIG seem to work for me at this frequency. I am apprehensive about chemo drugs, don’t like steroid side effects, and I think Plasma Pheresis is too invasive. I guess there’s nothing else left. I don’t understand why my body needs IVIG q10days. I thought that half-life of IVIG was 42 days. Correct me if I’m wrong. Someone in the forum mentioned that IVIG does not induce remission. I am clueless as to how long I will be on this IVIG–I know it’s very expensive. I read somewhere that IVIG is a FDA approved treatment for CIDP, so hopefully medical insurance will always cover it. My doctor has never suggested any other treatment besides IVIG.
AnonymousJune 25, 2011 at 2:53 am
Nobody has a clear explanation of how IVIg works, so nobody can say why you need it every 10 days and others only every six to eight weeks.
Let me make sure you understand half-life. Let’s say that at the end of day 1, you had 100 g of Ig. Let’s also say that at the end of day 21, 50 g of the Ig is still active. This would mean that the Ig had a half-life of 21 days. It would also mean that at the end of day 42, 25 g of the Ig would still be active. Unfortunately, it is not that simple. There are hundreds of thousands of Ig-type antibodies, some of which have longer half-lives than the others do. So to say that Ig lasts for 42 days is a simplification, perhaps taken to extreme.
Whether IVIg induces remission is not clear. There are studies that suggest CIDP can go into remission, but the results don’t seem to depend on treatment. There are hints that pulsed steroids have a better chance of inducing remission, but I don’t think there are any rigorous studies. There is the clinical trial about autologous stem cells, and some other literature that suggests that high dose cytoxan induced remission, but neither of these is considered definitive as of now.
Godspeed in your treatment regimen,
June 27, 2011 at 9:19 am
My neurologist that I see at the University of MN (he is a specialist with CIDP) told me in my last appointment that he has had better luck with inducing remission with pulse steroid treatment other than IVIG. We were discussing what I want to do for my treatment going forward. I am currently on IVIG and was asking him about possible remission. He said that we should stay with the IVIG for now since I am seeing good response with treatment and the fact that I hated being on prednisolone in the past that he would be reluctant to switch me back to pred unless the IVIG did not work anymore down the way. But I would love to see this thing go into remission. I hate the thought of being on IVIG every three weeks for the rest of my life!:eek:
AnonymousJune 27, 2011 at 10:31 pm
I started my journey at the University of Iowa hospitals and clinics, first with plasmapherisis, then IVIG. Twice, I improved to the point where I was sent to PT in Cedar Rapids. But twice, I reverted. After the second time, the docs got me a bed at the Mayo Clinic. They put me on a much higher dose/frequency of IVIG, as well as prednisone. Up until that point, no one knew whether I had GBS or CIDP, because the indications were contradictory. I was sent home three weeks later with a schedule for IVIG decreasing over 3 months, and prednisone decreasing over 9 months.
I understood that responding positively to a steroid is associated with CIDP, but not GBS. But because I was getting IVIGs for three months, I guess one couldn’t say whether prednisone alone would be effective. Thus, I believe, it is not clear whether I have CIDP or IVIG, based on the steroid evidence.
The steroids ended 3 years ago, and the IVIGs 3 1/2 years ago. I still have pain in my legs, sometimes very bad. I take oxys, gabapentin, tramadol, and nortriptyline. In addition to surface-type pain, I have recently been experiencing (or noticing) burning in my leg muscles after standing or climbing stairs. My balance seems to be worsening and I am back using a cane after two years. I’m going back to Mayo in September.
AnonymousJune 29, 2011 at 12:17 am
I saw my neurologist yesterday. As my story goes, I got weak after 2 months of every 2 week frequency of IVIG (25 gms); now I am on every 10 days frequency (1 month now). My reflexes are still present (arms, knees,) and he felt I was pretty strong; except for my thighs (doctor said “hip flexors”). This “weakness” involves other symptoms too. I have difficulty walking uphill, I get fatigued after walking the dog for 1 hour, groceries are somewhat difficult to lift, hard for me to get back up after stooping down, my legs ached when I walked. Although the doctor thought I was pretty strong; I think strength is subjective. I don’t think I was “strong” because of the activities I mentioned. Therefore, I am back at every 10 days. I don’t have any severe kind of neuropathic pain; although I get painful electrical shocks several times a days. I don’t know when my doctor will try to decrease my IVIG frequency again–it doesn’t seem to work after 2 trials. My life revolves around the IVIG treatments and this terrible CIDP. I am still in the working force. How does every one cope with this? Has any doctor told you anything about remission from CIDP?
AnonymousJuly 1, 2011 at 4:04 pm
I can vouch for the Neurology Dept at the Hospital of the University of Pennsylvania in west Philadelphia, it is consistently rated one of the top neurology departments in the country. I have been a CIDP patient since 1992 and was referred there by my neurologist in Princeton upon diagnosis. Several doctors there serve on the Medical Advisory board for the Foundation. I see Dr. Mark Brown who is about to go on sabbatical, but they have multiple doctors there who are very experienced with GBS and CIDP. FYI prednisone was the first treatment we tried and I responded immediately, back then prednisone was often the first treatment attempted. Since I responded with great results, I have never tried another treatment. Good luck!
July 6, 2011 at 9:57 am
Hi skblaine. Did you have to be on the prednisone long-term? Did you get side effects? Were you able to get off the pred and or go into remission? I ask this because I have only been on IVIg and my neurologist said that usually with IVIg infusions a person doesn’t go into remission. The IVIg will hopefully keep helping me with my symptoms and keep my CIDP at the point it is at now without getting worse but that I will probably need it forever. But he said that i could try switching to pred and try and put it into remission…he said he has had better luck with pred and remission. But I don’t want the side effects and am afraid of the weight gain and round moon face in the long term.
AnonymousJuly 14, 2011 at 9:14 pm
Thanks all that responded to my original request. In another thread I found a few Doctor’s names to research (Dr. Shawn Bird at UPenn, Dr.Mark Brown also at UPenn). Anyone else have any experiences with either of these docs? Are there any other CIDP specialists to recommend in the Philadelphia area?
AnonymousJuly 14, 2011 at 9:47 pm
[QUOTE=exosurf] Although the doctor thought I was pretty strong; I think strength is subjective…. My life revolves around the IVIG treatments and this terrible CIDP. I am still in the working force. How does every one cope with this? Has any doctor told you anything about remission from CIDP?[/QUOTE]
Never got a word about remission from my doc. It seems I’m learning more from this forum than from him. When I was still getting treatments (I stopped in April because I wasn’t responding) it seemed that my life revolved around them. I’m still lucky enough to be able to drive and work, however I’ve used all of my sick, personal and vacation time. I’m now on FMLA leave at work- but when that runs out I’ll have to miss work without pay. Coping with this disease is very difficult, but when I read some of the other stories here I feel lucky that I’m still (mostly) mobile. I can get by without my cane for getting around the house and work. I need it for anything longer than that. My balance is shot. My thighs, ankles and feet are weak and certain areas are numb. I have foot flop on my right foot which has caused me to trip and fall a couple of times at work- totally humiliating- but so far I haven’t hurt myself. This disease completely caught me off guard. I’m 56 years old. I’ve never had to see a doc for anything more serious than a sinus infection before. Anyway-here’s hoping we can all find more answers and encouragement here. Cheers!
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