I’m new to this blog so forgive me if my question has been answered in the past.
Please let me start with a brief history. I started having problems with my foot/leg movement in March this year. After a few visits with my GP I was referred to a neurologist and after an EMG was determined to have CIDP. I received 5 doses of IVIG, one per day for five days in mid June. After no improvement, I received four more doses in mid July. Still no improvement, in fact my condition has got worst with my mobility extremely limited and it has now moved to my arms, wrists and hands. I am scheduled to have four move IVIG treatments next week
My question: Does anybody have an idea or experience when this medication will start to work? Or am I and my doctor heading in the wrong direction?
how much do you receive at each dose? I only get mine every three weeks, and get 1mg/kg of body weight. my neuropathy seems to have held steady, but now he wants to cut it to .4mg/kg. my concern is that this may not be enough, and you don't know until as you indicate, you loose more nerve. i asked a post earlier to see of anybody has come to a consensus of the minimum mg/kg dose while still having minimum side effects like the flu symptoms.
My son who was 15 when diagnosed with CIDP received two IVIG treatments while hospitalized initially. After he was discharged he received them monthly - each treatment was six hours - for eight months. He then received them every every six weeks and then every eight weeks. After two years of IVIG treatments, he is now only on Gabapentin. No more IVIG. He is doing very well. When he was diagnosed the pain was in his feet, legs and hands - he was in a wheelchair. After the treatment in the hospital he was able to use the walker - he also had six months of physical therapy three visits a week it was a long process but... he is doing very well now.
My sister has had CIDP for 15 years. She is now 62. She feels if it was not for her IVIG treatment every two weeks she would be totally immobile. She also is on Gabapentin.
For us the IVIG treatments are and were worth the time and the cost. My son and my sister noticed changes - less pain, less burning sensation and better mobility within 24 hours of the treatment.
But.. I do understand IVIG treatments affect everyone differently.
We wish you the best!
Keep asking questions, we learned more about CIDP and various treatments from forums and blogs then the neurologist.
After the initial loading dose of ivig for 5 days, it took my body three rounds of treatment every three weeks before I saw the first results. Hang in there.
I had 5 IVIG treatments while I was in the hospital,it took about 3eeks for it to kick in. I regained some feeling in the bottom of my feet, it did nothing for my hands. I had another series of IVIG 11 months after the fist series, that did not help. I can eat and brush my teeth so I am thankful for that, I can only type w/1 finger so I don't do much of it. I have had 1 month in a rehab center where I learned to walk w/a walker. I had 6 months of home PT 3 times a week, I am now back in PT 3X a week and that is what has been the most helpful to me.
Have had CIDP since 2001,IVIG did not work for me,nor did Plasmapherisis ,had Chemotherapy (Cytoxan) & that really slowed it down ,Still living with it , taking Gabapentin & Amitriptyline.
Hi! had CIDP now for 6years now took 4years to diagnose!!.. I have IVIG every 10 to 12weeks!!..the first infusions I had was called VIAGAM, worked really well for me… Then they changed it to OCTAGAM, no good what so ever it did’nt work made me very ill and put me back to square 1 again, now I am on GAMAPLEX, started to get back to how I was on VIAGAM, don’t know wether this info is any good for you? But it would’nt hurt asking your doctor about it… Good Luck!..
I am a retired RN. I became down with C I D P in 2007. Had plasmapherisis and IVIG,in th hospital for 6 weeks then rehab/MSG home 7 months… Initially I was completelty immobile. I credit the IVIG and plasmapheresis with saving my life. Am now using a walker or cane. Numbness and pain in feet and slight trouble with balance but feel blessed at 82 y.o. Hang in there and don’t be afraid to change docs
Give it some time. I have been having IVIG treatments now for 22 months.I have seen some improvements and saw them about 12 months into the treatments. Everyone is different and react differently to treatments and the levels of the CIDP. I understand the overall issues do not go away and can only be treated. Even though I have some improvements the pain and numbness in the legs and arms continue. Hang in there.
This treatment is not effective on CIDP in many cases, After #6 & you don'Amityt see any improvement There are other treatments,Suggest Plasmapherisis.if you have nor already done so ,nothing had any discernable effect on my case till Chemotherapy. This should be a last ditch effort ,it is unpleasant but it stopped the advance,as it temporarily interupts the immune system, I have been dealing with CIDP for 13 + years & handle the residual neuropathy with Gabapentin along with Amitriptyline which is great help, I am 82 & swim & work our daily,so hang in there & don't be afraid to talk to your MD as I have found thst many don't know all they should about CIDP!!
I have not heard any mention of Acthar. Is anyone else getting these injections? I have been getting IVIG Infusions twice a month since January 8th but an EMG in early July showed that I had gotten worse. For the past 4 weeks I have been getting Acthar injections twice a week and I think it is helping. No great improvement but I do feel a little stronger and my tremor is better so I am curious if it has helped anyone else.
I have not heard of that drug. They have a clinical trial for CiIDP in Jacksonville FL. I called but was told I was not bad enough to be eligible. I really feel for those who are worse off than I am.. I have a lot of pain in my hands & feet. My gabapentin was cut from 600 mg 3 times a day to 200 mg 3 times a day because of my kidneys so that and tramadol 3 times a day is all I have for the pain.
Sorry to hear of you increased pain level mamabear. I certainly know where you are coming from. Right now my forearms are burning so much I can barely type. Have you tried anything stronger for pain relief like oxycodone? Also, I don't know how you feel about meditation but it helps me. Blessings
I was on oxycodone and it didn't touch my pain, I try and keep my mind occupied and pray a lot. Nights are the really bad times. I can have more IVIG but it hasn't seemed to help after my initial treatment, so until the pain gets intolerable I'll skip anymore IVIG
Please do make sure that your neurologist is a specialist in peripheral nerve diseases. Get a second opinion if this does not seem to work and you are getting worse. It took me one and one half year to find someone to diagnose and treat me. Make sure that the diagnosis is correct.
I was told 6 years ago, when I asked a top neurologist in London, (world renowned professor) why some of his patients I had spoken to were in wheelchairs, who had the disease as long as myself. He said you have the slow kind. My starting treatment was identical to yours, except a year apart. They do not know enough about CDIP and my people admit it at all levels. IVIG prescribed is prescribed for all kinds of things, ie arthritis, respiratory problems and cancer of the blood. I think neuro people do best they can with the knowledge they have.
Sorry to hear the IVIG isn't helping. About 35 - 40% of CIDP patients don't respond to IVIG, but after about 3 months of no improvement your neuro should consider another option. Of course, prednisone and PE are the two most likely choices. Treating CIDP is a science and an art, so I hope you're getting the best care possible.
I agree with the advice already given and would like to add one thing. Please don't forget about Acthar. I think it has helped me a lot when combined with IVIG.. It is not often prescribed because of its expense ($30,144.00 for 8 weeks) but it has almost none of the side effects of oral steroids as it is a hormone that stimulates the adrenal glands to naturally produce cortisol. My insurance covers it at 100% and maybe yours will too. I think that it is at least worth inquiring about. Blessings
Just curious if anybody is experiencing swelling in their ankles. My calves have atrophied extensively and so my walking is like wearing a ski boot. mainly walking on my heals. i have had stress tests for the heart and radial BP tests on the ankles for circulation. all good , but ankles still swell during the day and go back down at night. just a side effect of bad muscles, or might it be something worse? any thoughts would be greatly appreicated