I was diagnosed with CIDP in August and have undergone two lots of IVIG treatment and Prednisolone which has done absolutely nothing. I'm taking Nortryptiline and painkillers but am sure where to go from here. My consultant is not keen to give me Plasmaphoresis as he said it's a pretty grim procedure, so I'm feeling a bit stuck now. I will pretty much try anything I'm seeing the consultant again on Monday to discuss the future but I don't really think he is going have much to say considering the last time I spoke to him before the IVIG. If anyone has any ideas please help! I know these appointments are not very regularly dished out and I don't want to waste Monday but I can't carry on with the constant hideous feeling in the feet/legs and now starting in my hands. Please help!!!
HI,,,,WAS FINALLY DIAGNOSED IN AUGUST THIS YEAR.....NUMBNESS STARTED IN LEFT FOOT IN JANUARY.
MY NEURO PRESCRIBED IVIG AND HAVE HAD 4 THE FIRST TIME & 2 THE SECOND.....HAD GOOD RESULTS FROM EACH LASTING SOME PERIOD OF TIME......NEXT ROUND IS TOMORROW.....NEVER ANY PAIN, JUST LOSS OF MOBILITY......ALSO, HAVE PHYSICAL THERAPY ALONG WITH IVIG INFUSIONS.
NEURO SAID IT WOULD BE A 2-3 YEAR ORDEAL......STRIVING TO GET MY MOBILITY BACK.
SOUNDS LIKE "EVERYONE" HAS SOMEWHAT OF A DIFFERENT "RESULT"?????
Im sorry to hear things are not going too well for you. I too have had a similar experience to yourself. I started off with my consultant thinking I had CMT then CIDP even though none of the tests showed I had either for sure. Ive now done three courses of IVIG and one course of Steroids with no real effect. My consultant is not keen on Plasmapheresis.
So I feel theres no where for me to go and I feel abandoned. It just feels like if you dont fit what the text book say then your just left to make the best of things. It seems wrong to just give up and suffer in silence. But I dont know what else to do. No one seems to understand how difficult things are. I too wish someone could point me in the right direction as where to go next.
I now can only walk very short distances and usually have to use a wheelchair and again like you its now effecting my hands.
If you do find away forward please let me know.
I hope you have a good meeting with your consultant on Monday.
I'm not sure what you mean by "two lots of IVIG treatment. Last January, after multiple tests and rapidly decreasing movement control and increasing pain I was hospitalized for more tests and the beginning of IVIG treatment. I received 3 days of IVIG then began at home infusions every three weeks. I am currently getting the infusions every other week, but hopefully can return to every three weeks soon. Have you asked your neurologist how long it normally takes to see results from your infusions?Have you adjusted your activities to where you are not causing more pain by doing "too much"? Learning what is "too much" is a constant process, I am still learning. Having a neurologist that you have confidence in is so important. Peace Nancy
IVIG may need time to work. I have had plasmapheresis and it is invasive but can work for some CIDP patients. I am on Neurontin for burning and some are on Lyrica. Worth a mention to doc. There are other meds too. Cellcept , Imuran. Rituxan. Your doc needs to investigate these. See other docs if they are not willing to try other treatments.
hi nancy, i noticed that you said that you were having ivig every other week. is this for one day each time? my son is having two days every three weeks but symptoms return after two weeks. so i am interested by your experience. brenda
Have been diagnosed with CIDP. Didn't undergo IVIG nor Plasma procedure. My doctor gave me 16mg of prednisone 3x/day for the 15 days. Side effect of steroids gave me disconfort after a couple of weeks. However I felt that the progression of the symptom has slowed down or ceased. From foot drop I could finally move my feet. On the 3rd week the doctor lowered the does to 10mg 3x/day for another 15 days. I felt quite an improvement and could use the walker to move around. I found out that aside from physical therapy, exercising and walking in the swimming pool every other day gave me the best results. It helps shrink my swollen foot and legs due to water retention (side effect of steroids). After a month the doctor lowered again the dose to 5mg 3x/day. I am doing my regular routine and I am now exercising using a cane. Hopefully recovery will continue and be celebrating Christmas and my birthday before the end of the year. Prayer also works...........
be your own advocate-look things up on line-most important write your questions down-this keeps me from leaving the appointment and then wishing i remembered to ask about---be pushy if need be-the squeaky wheel gets the oil--after all you are the one dealing with it
everyone tells me to be pushy too. I think thats good advice. But doctors do have away of making you feel they know best
and you shouldnt question them. But as time goes by I realize the only one who really knows how I struggle and feel is myself. So Im going to push more and more. Sometimes its just knowing what to ask is the problem.
Thanks for the reply. It is a horrible feeling, not to sound negative for you but I'm glad I'm not alone with this. I know what you mean about 'textbook' status, it seems unless there is something totally specific then we are just left to coast along suffering. I've heard people say they get worse, do anything you can before it's too late but what can we do? I've also heard someone said they just grew out of it! Wow, I can't imagine what it would be like to feel normal and I haven't had it for too long. If I hear of any suggestions on anything to try I'll let you know!
ukfoto said:
Hi there,
Im sorry to hear things are not going too well for you. I too have had a similar experience to yourself. I started off with my consultant thinking I had CMT then CIDP even though none of the tests showed I had either for sure. Ive now done three courses of IVIG and one course of Steroids with no real effect. My consultant is not keen on Plasmapheresis.
So I feel theres no where for me to go and I feel abandoned. It just feels like if you dont fit what the text book say then your just left to make the best of things. It seems wrong to just give up and suffer in silence. But I dont know what else to do. No one seems to understand how difficult things are. I too wish someone could point me in the right direction as where to go next.
I now can only walk very short distances and usually have to use a wheelchair and again like you its now effecting my hands.
If you do find away forward please let me know.
I hope you have a good meeting with your consultant on Monday.
Thanks, I'll try and push him. He is very reluctant, seems to just want to stick to steroids. I'll see how it goes
Mashrub said:
IVIG may need time to work. I have had plasmapheresis and it is invasive but can work for some CIDP patients. I am on Neurontin for burning and some are on Lyrica. Worth a mention to doc. There are other meds too. Cellcept , Imuran. Rituxan. Your doc needs to investigate these. See other docs if they are not willing to try other treatments.
Thanks very much for your reply. It dose make me feel better to know Im not the only one who is not responding to treatment.Plus Im not the only one looking to find answers on where to go next.
If I find anything I think might be of interest to you I will let you know.
All the best,
G.
victoria said:
Hi,
Thanks for the reply. It is a horrible feeling, not to sound negative for you but I'm glad I'm not alone with this. I know what you mean about 'textbook' status, it seems unless there is something totally specific then we are just left to coast along suffering. I've heard people say they get worse, do anything you can before it's too late but what can we do? I've also heard someone said they just grew out of it! Wow, I can't imagine what it would be like to feel normal and I haven't had it for too long. If I hear of any suggestions on anything to try I'll let you know!
ukfoto said:
Hi there,
Im sorry to hear things are not going too well for you. I too have had a similar experience to yourself. I started off with my consultant thinking I had CMT then CIDP even though none of the tests showed I had either for sure. Ive now done three courses of IVIG and one course of Steroids with no real effect. My consultant is not keen on Plasmapheresis.
So I feel theres no where for me to go and I feel abandoned. It just feels like if you dont fit what the text book say then your just left to make the best of things. It seems wrong to just give up and suffer in silence. But I dont know what else to do. No one seems to understand how difficult things are. I too wish someone could point me in the right direction as where to go next.
I now can only walk very short distances and usually have to use a wheelchair and again like you its now effecting my hands.
If you do find away forward please let me know.
I hope you have a good meeting with your consultant on Monday.
I had 5 rounds (2 days each except the loading dose) of ivog and didn’t seem like it helped much. I have been on prednisone now for almost 2 months with ivig and just finished physical therapy and FEEL stronger but am now tapering the prednisone down. There are just so many factors affecting this condition that its so difficult to determine what helps nod what makes things worse. I’ve been trying to keep a journal and pay close attention but there doesn’t seem to be ONE thing or another that sticks out.
Good luck and keep us posted!
Julie
Well the meeting went well. I'm tapering of the Prednisolone and the IVIG has apparently strengthened my feet-all along I thought this would alleviate pain so I thought it wasn't working! My neoru can't work out why I'm in pain so I may have to have a biopsy-gaaaa. Apart from that he has given me capsacin cream but that's it. I'm worried that I will deteriorate but I can call up to arrange more IVIG if I like. I'm worried I'll have to do this every month but I suppose some people have to do this anyway?
Hi Brenda, I get infusions Tues and Wed every other week. I started at every three weeks, but like your son my symptoms were worsening before my next scheduled infusion. I noticed I was tiring more and had increased nausea so my Doctor prescribed anti nausea med to take prior to the infusion and it made all the difference in the world. I also agreed to a one time trial infusion of prednisone and that helped with my fatigue. For me infusions every other week has helped.
brenda said:
hi nancy, i noticed that you said that you were having ivig every other week. is this for one day each time? my son is having two days every three weeks but symptoms return after two weeks. so i am interested by your experience. brenda
I also was diagnosed in August and i am on gabapentin which has been a life saver since we dont have a normal pain like most we have nerve pain..i take 5 a day and almost maxed out on them asked for that to be added to your meds.. i also take nortriptiline as well as tylenolen 3 which helps with the pain. Try that as Lortab does nothing for me. I am doing my second set of infusions this coming week. Dont give up stay strong and know we all here are in the same boat and have the same pain. Big hugs...Amy
Its a very tough time for you and both the desire and need to have some answers and some pathway is understandable. I recall feeling quite shocked when there was "no pill" to "fix this/ fix me". So I could have my life back.
With two years behind me now i can only share my experience which is slowly slowly. There are a few options and finding one that works for you might take time. I find a gentle slow life - meditation - JSJ ( Jin Shin Jyutsu ) - plenty of water and good food ( organic if possible ) - helps both our mind and body. I work closely with a neuro-physio who again supports a slow but very constant physio plan - 7 days a week - doing the same exercise at the same time each day.
I recall the days and nights with crazy feet and legs and wondering if I would ever sleep again. I do now.
Most importantly take some one with you to your appointments - its difficult to take in ALL the information - or remember to ask ALL the questions. I've had a patient advocate at every appointment - helped me enormously.