I am learning tons of info here. Keep it coming. My neuro is going to get an earful at my next visit------ if I can get an appt.
missbeth said:
Hey Sunshine -
They use your own stem cells. I am accompanying my son right this minute into the first phase of Dr. Burt’s treatment at Northwestern. It is called mobilization and it is where they stimulate stem cell growth for harvest in about 10 days. Seriously look this up. Hopefully insurance will eventually come through for you as it did for my son. He was accepted into the program 13 months ago and just now getting it done. Good luck.
Sunshine said:
Whose stem cells do they use for stem cell transplantation?
stadem06 said:
If IVIG isn’t working you could always look into a stem cell transplant with Dr. Burt in Chicago out if Northwestern Memorial Hospital. I had my transplant in March and all of my symptoms are going away, I’m no longer on any medications or treatments and I’m gaining my life back.
It happens to me but it's manageable.I prefer a regular 4 week calendar so I can travel around.I have to get to Vietnam and back from the UK to see the new grandchild.You have to remember the risks too associated with IVIG and more regular treatments.
So,I happily prefer to manage my "come-down" by impersonating the young layabout I once was and do a lot of dossing for a day or 2 .Then,my next trip comes up-riding around on European trains and more dossing about.I guess CIDP isn't too bad for an old dude like me.
Timing and dosage depends on the individual. We are each an “experiment” despite what we’d like to think. That said keep working on the variables, dosage, timing. I stopped feeling a boost so my dr slowly transitioned me onto cyclosporine an oral drug while continuing the IVIG for several months.
Something else to try or at least look at.
By the way, when I moved to this dr., I had interviewed him and when I asked he said he had about 25 patients with CIDP under his care.
What all is involved in a stem cell transplant and does anyone qualify?
stadem06 said:
Wh@hdanhakl, I just noticed your comment. Dr. Burt is a miracle worker. So glad to know there are others out there. There are support groups on Facebook for Dr. Burt's protocol. You can find me on Facebook under Stacey Turley Dematos. I can get anyone who is interested linked up to one or both of the support groups where you can gain more information.
What all is involved in a stem cell transplant and does anyone qualify?
stadem06 said:
Wh@hdanhakl, I just noticed your comment. Dr. Burt is a miracle worker. So glad to know there are others out there. There are support groups on Facebook for Dr. Burt's protocol. You can find me on Facebook under Stacey Turley Dematos. I can get anyone who is interested linked up to one or both of the support groups where you can gain more information.
What all is involved in a stem cell transplant and does anyone qualify?
stadem06 said:
Wh@hdanhakl, I just noticed your comment. Dr. Burt is a miracle worker. So glad to know there are others out there. There are support groups on Facebook for Dr. Burt's protocol. You can find me on Facebook under Stacey Turley Dematos. I can get anyone who is interested linked up to one or both of the support groups where you can gain more information.
I have been with my doc for 8 yr now but this is the first year that he Dx CIDP and prescribed the IVIG ! Time to move on but not so easy in Knoxville TN. Also mis-spoke about Dr. Burt and IVIG, instead of stem cells.
Capt001Mike said:
Timing and dosage depends on the individual. We are each an “experiment” despite what we’d like to think. That said keep working on the variables, dosage, timing. I stopped feeling a boost so my dr slowly transitioned me onto cyclosporine an oral drug while continuing the IVIG for several months. Something else to try or at least look at.
By the way, when I moved to this dr., I had interviewed him and when I asked he said he had about 25 patients with CIDP under his care.
My son has been keeping a video blog on U-tube of this journey. Just plug in coloradopaco in the search box on you tube if you are interested.
Geepster said:
I am learning tons of info here. Keep it coming. My neuro is going to get an earful at my next visit------ if I can get an appt.
missbeth said:
Hey Sunshine -
They use your own stem cells. I am accompanying my son right this minute into the first phase of Dr. Burt's treatment at Northwestern. It is called mobilization and it is where they stimulate stem cell growth for harvest in about 10 days. Seriously look this up. Hopefully insurance will eventually come through for you as it did for my son. He was accepted into the program 13 months ago and just now getting it done. Good luck.
Sunshine said:
Whose stem cells do they use for stem cell transplantation?
stadem06 said:
If IVIG isn't working you could always look into a stem cell transplant with Dr. Burt in Chicago out if Northwestern Memorial Hospital. I had my transplant in March and all of my symptoms are going away, I'm no longer on any medications or treatments and I'm gaining my life back.
There is a generic form of Imuran, called azathioprine. It is the same stuff, works just as well, and less expensive. If your pharmacy has a hard time getting Imuran, ask about azathioprine.
My doctor had me try prednisone at one point very early in my treatment. It did nothing for me, and the side effects were not good. But the IVIG worked great! Everyone responds differently.
Bill
Missy said:
Hi Bill good news. I take Imuran, prednisone, and IVIG infusion. The infusions every 8 weeks. However, with Imuran the manufacturer has a difficult time keeping up with demand. So I went without for about 10 days. About 2 days before my infusion. Once completed, I thought I would bounce back. Not!!! I did not have as much fatigue, but burning pain and neuropathy in my extremities. I took pain meds at night to help with sleep. Also no Imuran in my system also affected my digestive system. Now I have the medication for 3 days and I'm feeling the difference on all fronts. As far as the prednisone goes, my neurologist cut me back and then discontinued the med. I've been on prednisone since 2008. So I understand his logic. However, big mistake. I stopped dosing in November and by Christmas I was in sooooo much pain. Nothing help. By New Years I could not walk without help. I was miserable. After my neurologist saw me, he was shocked at my condition. He was using is other patients as a benchmark for me. Which does not work for all. He thinks being on for so long, my body as adjusted to having prednisone. After two days at 20mg per day, the pain subsided. I was due for my infusion in January and with 10mg of prednisone now scheduled I was better. Not perfect but much better. So for now, my neurologist and I think infusions, prednisone, and Imuran are continually in my future.
Robin
Uncle Bill said:
I also did IVIG every three weeks for quite some time. Like you, I felt the effects wearing off a few days before I was due for my next infusion. In fact, a couple of times it was bad enough that I had the infusion moved up by a few days. When I talked to the doctor about moving it up on my own initiative, he said, "That's fine! There is no test for the effects of IVIG. You are the test. If you feel like you need it, then you need it. After all, no one says to themselves, 'Gee, I sure would like to go in for several hours of infusion today.'"
(I wanted to contradict him on that last part - when I was feeling really down, I did wish some times that I could go get a booster.)
Then, my neurologist started me on Imuran, in addition to the IVIG. After several months, I noticed that I was feeling pretty good after three weeks, so I lengthened the interval to four weeks, then five, then six, and eventually stopped the IVIG altogether. It is about a year and a half now since my last infusion.
My neurologist is very forthright about this. It may be that the Imuran took over, and that is the reason I no longer need IVIG. But, it is also possible that the CIDP just burned itself out, as they say, and I would have been fine without the Imuran. He has mentioned the possibility of stopping the Imuran, to see how I do, and I have just about worked up my nerve to try it.
She will direct you to the person who handles all of he CIDP patients. This is the best thing I have ever done. Its expensive, but my insurance paid for it. If your insurance wont pay then there are others who did fund raisers.
Sunshine said:
Whose stem cells do they use for stem cell transplantation?
stadem06 said:
If IVIG isn't working you could always look into a stem cell transplant with Dr. Burt in Chicago out if Northwestern Memorial Hospital. I had my transplant in March and all of my symptoms are going away, I'm no longer on any medications or treatments and I'm gaining my life back.
In the beginning, it completely melted away my symptoms and I could make it to the 3 wk point, but now it doesn't seem to completely eliminate my symptoms and it doesn't last as long. I am so frustrated beyond words and it's cold and flu season so it's a very busy time of year. Gert said:
Hi. it takes some time for the IVIG to work. I had it for 5 years on and off. It take some time. A bigger dose won't necesarily help, it's more about time....
Sunshine, I have 400 mg of IVIG every 7 weeks over a 48 hour period as an out patient. I usually go in on Friday noon and get out on Sunday. My neuroligist has dealt with CIDP patients over the years and thinks that large amounts at a time are good. So far I feel good until the last few days prior to treatment and then the fatigue and pain start coming back. This last time I did way too much between treatments and had to get 600 mg and then had to get a port put it. It has been three weeks since treatment and I’m back to exercising and working part time. I also take medication for the neuropathy pain.
I have decided to retire because I have finally come to realize and accept that I can’t do for my family and fight this disease. For the first time in my life I plan to put me and my family first. Thankfully I will qualify for full retirement in April, so I’m taking it real easy until then.
Thanks, Jan. Blessings to you and congratulations on your upcoming retirement. :) Jan said:
Sunshine, I have 400 mg of IVIG every 7 weeks over a 48 hour period as an out patient. I usually go in on Friday noon and get out on Sunday. My neuroligist has dealt with CIDP patients over the years and thinks that large amounts at a time are good. So far I feel good until the last few days prior to treatment and then the fatigue and pain start coming back. This last time I did way too much between treatments and had to get 600 mg and then had to get a port put it. It has been three weeks since treatment and I'm back to exercising and working part time. I also take medication for the neuropathy pain.
I have decided to retire because I have finally come to realize and accept that I can't do for my family and fight this disease. For the first time in my life I plan to put me and my family first. Thankfully I will qualify for full retirement in April, so I'm taking it real easy until then.
I get ivig every 3 weeks. I could not get through the 3 weeks either but I was working a lot and doing way too much. I have changed it up in the last few weeks and I see major improvements. less is best. but don't stop completely. the other suggestion is telling ur neurologist to move iit closer. for now.
I have been treating with IVIG for 11 years, 1 x every 4 weeks. 5 days before my treatment, depending on stress levels, my legs start to get weak. So yes it wears off and it takes a few days after my treatment to get it back again. It stinks but it could be worse.
My 14yo daughter struggles to make it to 6 weeks between ivig’s and her nurse said she should be having the ivig before symptoms occur. She said to ask the neuro to bring the ivig back to 5 weekly and he has. So we will see how it goes.
That's good that the neuro is letting you titrate her dosing to a more frequent basis according to her needs. When I wrote the question, I wasn't sure if my neuro was going to go for me wanting a higher dose and on a more frequent basis, but he did. The day I saw him, I was so miserable with the CIDP on top of gastroparesis and a terrible head cold that he spent well over an hour with me. Last week when I went in for a follow up, his receptionist said that I looked so much better and that Doc was really worried about me the visit prior. I can already tell a HUGE difference since getting the higher dose and am finally starting to get some energy back that I am even considering joining a gym to try to gain back some muscle. I hope your daughter gets better soon. :)
Sounds like a very cooperative neuro and infusion center. Where do you get infusions on the weekend? That would solve my booster dilemmas. Good luck with your retirement. Take care of yourself first b/c you’re no good to them unless you’re at your best, whatever that turns out to be.
Jan said:
Sunshine, I have 400 mg of IVIG every 7 weeks over a 48 hour period as an out patient. I usually go in on Friday noon and get out on Sunday. My neuroligist has dealt with CIDP patients over the years and thinks that large amounts at a time are good. So far I feel good until the last few days prior to treatment and then the fatigue and pain start coming back. This last time I did way too much between treatments and had to get 600 mg and then had to get a port put it. It has been three weeks since treatment and I’m back to exercising and working part time. I also take medication for the neuropathy pain.
I have decided to retire because I have finally come to realize and accept that I can’t do for my family and fight this disease. For the first time in my life I plan to put me and my family first. Thankfully I will qualify for full retirement in April, so I’m taking it real easy until then.
It seems that wearing off is par for the course for most of us. Finding a neuro you can communicate your concerns to and yes, your thoughts on the subject, is a far more difficult task but necessary b/c he’s the only one that can add meds, increase Ig doseage, or it’s frequency according to your response and not according some preset doseage “guidelines” which don’t really mean much to those who are suffering premature return of symptoms following IVIg. I hope I can find a neuro and a center that will individualize my treatments and a center that can give me the infusions when I need them not when it’s convenient for them. I needed a booster but they couldn’t get it for three weeks!