Hi all, I'm hoping you can answer some questions for me or share some of your experiences... I'm newly diagnosed and had my first round of IVIg three weeks ago. My strength has been improving but I developed more numbness today. My doctor said it was too early for another round of IVIg (perhaps since it has only been three weeks?) but was wondering if I had felt any benefits from the infusion. Am I correct in understanding that it doesn't help with numbness only with getting your strength back? Has anyone had success with IVIg stopping the numbness from progressing? Do you have to have several rounds of IVIg to really get the full effect? I'm of course hopeful that I can get this into remission and not sure what to expect, especially since I seem to improve in one area but deteriorate in others, which does nothing for my anxiety. I'd love to hear from others what their experiences have been. Thanks!
I too experienced some improvement after my initial fiev day IVIG treatment , It last for only two weeks before the symptoms returning , Then I had another treatment four weeks later it was a one time treatment that time and have had a few more monthly treatments since with no improvement whatso ever . In face my CIDP has been getting worse with added symptoms , I Beieve everyone is different and it depends on how long you have had the disease , I read the sooner one is diagnosed the better the chances are for improvement . I was not diagnosed for about 10 years so I think that may be why I have not had great results with IVIG . I have oen more treatment before seeing my Neuro and will see what she suggests then
I wish you well
Mary
I had my first 5-day round of IVIg infusions about a month ago. I noticed my strength coming back after about a week. Also, the tingling in my fingers and toes improved. Now- it started yesterday- I feel markedly weaker in my legs, especially. Forgot to mention I was diagnosed with MADSAM Polynueropathy. The symptoms are similar to CIDP.
Based on my limited experience, both the strength in my legs and the tingling/burning in my fingers and toes improved because of the infusions. I have an appt. with my neuro at the end of the month. Based on what happens- if the weakness progresses, I'll call and see if he wants to order another round. The nerve pains are more frequent again, but mild compared to what they were.
I think I remember the doctor saying that there should be at least 4 weeks between infusions. I, too, would like to know others experiences with IVIg; how many and how effective.
Good luck, and I hope the numbness improves.
Linda
Hello There, My son has had five IvIg treatments so far at monthly intervals. The IVIG has completely resolved all weakness and other symptoms of tingling and numbness immediately. The symptoms however begin to come back after just 2 weeks and by the time of the next treatment he is unable to lift his arms up through weakness. We are hoping to try to extend the time between treatments gradually. I have notced that at each relapse the symptoms can be different. it seems everyones experience is different and not knowing does not help the anxiety but I am finding it helpful to hear from others. Brenda
Hi! My name is Therese and I have had CIDP for over two years.
Everyone reacts differenty to treatment and it can take more than one round of IVIG before you see signs of improvement. When I was able to take the IVIG treatments I was able to get sensation back in my feet, legs and arms but it took awhile.
It is important to remember during your journey that CIDP is different in everybody who has it. Just because something doesn't work once or twice don't give up hope!
I look at CIDP at this point as a journey... not one that I wanted but one I must follow. I am bad at listening to doctors as to what I can't do and will try my hardest to do the smaller things to possibly get to the bigger things. My neuro always tells me to keep moving no matter how slow or how hard it is. So far through Gods grace and her encouragement I have made headway no one expected me to make.
One thing to keep in mind with CIDP is that things can change at any time. That is to be expected and ok. On those days that are tough let your friends here know you need help and we will help you. Pray or meditate if you like and find different things that will help you relieve stress as that can help aggravate your symptoms.
I am glad you made some headway during your first treatment that is great!!!!! Keep up the good work and if you need anything please let me know and I will help you however I can
I am doing ivig plus solumedrol two days every three weeks. I think this combination helps me along with prayer
I am also newly diagnosed with CIPD. I had my first IVIg treatments two weeks ago. I had them my first series for five days in a row. Then I am off for two weeks and then have infusions for five more days next week. So I have treatments for five days every three weeks. I am having GlamunexC infused into me. These treatments will go six rounds like this. After the first round I gained all my strength back and the numbness in my tongue has vanished. My hands and my feet are significantly better. So far I am amazed by this and I have had no side effects. I have made sure I stay very hydrated and it has helped tremendously!!! I consider my self very fortunate so far!!!
That is greta news Lori ! I am so pleased for you:)
Mary
globug said:
I am doing ivig plus solumedrol two days every three weeks. I think this combination helps me along with prayer
Mary said: more great news Globug ! So happy for you too:)
globug said:I am doing ivig plus solumedrol two days every three weeks. I think this combination helps me along with prayer
I have had CIDP for about a year now. It was very hard for me to accept that I had this disease. I still don't want to accept it but after a year I am starting to come around. I started IVIG right away after diagnosis and have had it every 21 days now for a year. If I stay on the IVIG and don't go over 21 days I don't have horrible symptoms. But I do notice that towards the 21st day my legs start to ache and feel heavy and my hands burn ont he tops and I start to drop things. So I know I am getting help from the IVIG but it does not last very long in your body. I was hoping to get at least 4 weeks between infusions but every time I try to extend the period between I start to feel bad. So my doctor said, if it isn't broke then leave it alone for a while. I would love to go into remission but am told that most people on IVIG do not go into remission only halt the process of the disease. To try and go into remission my neurologist said I would have to try other treatments such as the cancer drugs to lower my immune response. I have not wanted to change anything at this point since the IVIG is working and I am able to lead a somewhat normal life. Has anyone been on one of the chemo drugs and went into remission?
Hi - I have not been treated with IVIG, but steroids instead. However from what I have read about IVIG there is a first course (in the UK for 5 days ish) and then 4 weekly/monthly follow ups. I am aware of a number of times patients said this wore off after around 3 weeks and they had to go back for a "top up". So your symptoms seem to tie in with this? This period can be extended after a few treatments (again from what I have picked up).
My experiences are in a blog: mycidp.blogspot.com
I have also set up an independent survey into GBS/CIDP to try and help others, this is just being published today:
http://gbs-cidp.questionpro.com
Please fill in if you want and pass on
Thanks to everyone for your replies. The last few days have been difficult and I appreciate hearing about what others go through and what's been helpful. I know everyone here understands the uncertainty and anxiety that this can bring so I appreciate the support:)
I would like to know if anyone knows of anyone who has been in a long remission or has recovered? Thanks Brenda
Mary may I ask when you say it took 10 years to be be diagnosed with CIDP. It must of been hard for you not knowing what was going on with your body.
I think I understand what it was because I been going thru what is wrong with me. When I think that this doctor knows another doctor says it's not so. It is so confusing.
My question to you how did you get thru it? and what did they look for to diagnose you? I have only had EMG and the needles thing I forget what they call it.
I am looking for someone Iknow I read here everyone is different...but I just hope that I find something?
Only reason I came here because the name of this diease is closes to what my Neuro doctor said to me.
I know you are not a doctor, but just wondering.
I haven't had NO treatments of the IVIG, and I found several of my doctors when I try to exlain what you all go thru look at me I'm crazy??? it is so hard....boy I think I understand what you went thru although I haven't been so far waiting 10 years.
I have to wait to get my health insurance going next month. I bit the bullet and purchase insruance...I had too.
I try to ask if they cover this IVIG just in case I find I need this type of threapy. They can't tell me so far.
it is all too much sometimes...............I give you tons of love for what you been thru and more.
I hope you are feeling well today.
I am so tired today and lately I have no idea my hurting is casue by any diease right now.
I hope your IVIG helps you
thank you for answering and reading my long post.
ruthie H
God be with you. Keep doing your research and asking questions. Dont ever give up
Ruthie , About 10 maybe even 11 years ago I felt as if there was something cought under my toe , Then Aftera while I had numbness , I told my Doctor who sent me for an EMG . The diagnosis was Peripheral Neuropothy . I was given the diagnosis but not told any more , I was having problems with my balance and tripping a lot , BUut did not know it should be checked further m I progressivly got worse untill about a yera ago I went to my GP with severe leg pain , He sent me for an Xray ! When I went for the results he said ' THERE ARE NO BROKEN BONES" I told him I knew I had no broken bones , ( The year befor eI fell and broke my wrist and that year I broke my foot and Ankle when I fell again ) The strange thing was I was able to walk as I was not in much pain after the break , I now think it was because of the numbness . I had to hold on to my husband every where I went ( and still do) to keep from falling . Anyway eback to my Gp . I told him I knew there was something terribly wrong so he sent me for another EMG and it showed Periferal Neuropathy , That Neurologist had me coem back for a second one because he was surprised at what he found , but he concluded the results were the same and told me I would have to live with it . Whe I wet back to my GP he again told me I had PN I tokld him I was not satisfie dwith the diagnosos and wanted to find out why ! He sent em to a different Neurologist who was horrifie dwhen he examined me , He looked at the first Neuro's written results and calle dthem "Dog Doo" He told me my muscles were wasting and sent me for multiple tests Cant even remember them all , He also sent me for a Spinal tap and when all the results came in he concluded I had CIDP He said I was very complicated! He in turn sent me for a second Openion to a Neuro Muscular Doctor ( up to this time he and the first Dr, were Neuro's and not muscular) I was given another EMG and she agreed with his openion . So that is how I finally got a name for it , Unfortunatly I am having no luck with my IVIG treatments and my symptoms are increasing , Probably because It took so long for me to be diagnosed , I would advise others to take charge and insist on following through after testing I waited untill my symptoms became intolerable , It seems it started off slowly but this past year it progressed faster .
I hope this answers soem of your questions Ruthie , Hnag in there I hope you get an answer from your Doctors soon , BTW The reason you may have been getting puzzling looks from your Doctors , If they are not Neurologists is because Many of them do not know about CIDP . I have had to explain it to several LOL
mARY
ruthie4bearz said:
Mary may I ask when you say it took 10 years to be be diagnosed with CIDP. It must of been hard for you not knowing what was going on with your body.
I think I understand what it was because I been going thru what is wrong with me. When I think that this doctor knows another doctor says it's not so. It is so confusing.
My question to you how did you get thru it? and what did they look for to diagnose you? I have only had EMG and the needles thing I forget what they call it.
I am looking for someone Iknow I read here everyone is different...but I just hope that I find something?
Only reason I came here because the name of this diease is closes to what my Neuro doctor said to me.
I know you are not a doctor, but just wondering.
I haven't had NO treatments of the IVIG, and I found several of my doctors when I try to exlain what you all go thru look at me I'm crazy??? it is so hard....boy I think I understand what you went thru although I haven't been so far waiting 10 years.
I have to wait to get my health insurance going next month. I bit the bullet and purchase insruance...I had too.
I try to ask if they cover this IVIG just in case I find I need this type of threapy. They can't tell me so far.
it is all too much sometimes...............I give you tons of love for what you been thru and more.
I hope you are feeling well today.
I am so tired today and lately I have no idea my hurting is casue by any diease right now.
I hope your IVIG helps you
thank you for answering and reading my long post.
ruthie H
Hi clb75. I am Joy from Canada. I had GBS in Feb.2011 which has progressed to CIDP. I recieved 40 plasma exchange treatments and then in Jan 2012 they decided to try me on IVGG once a month for 3 months and then revaluate how it goes. I have only had 2 IVGG treatments but I really noticed an improvement. I am much stronger,can walk further and do stairs much better. I had numbness and stiffness in both feet, numbness down my left leg,left arm and the left side of my head. I had tingling across my left shoulder and back . I would get "electric japs" in the bottom of my feet.All of these symptoms got much better. So ...yes it helped with the numbness. I have no idea of how this disease will progress.The doctors tell me that everyone is different. I am just really happy to be upright,walking,and to not have pain. Take care.
chirpybirdy said:
I have had CIDP for about a year now. It was very hard for me to accept that I had this disease. I still don't want to accept it but after a year I am starting to come around. I started IVIG right away after diagnosis and have had it every 21 days now for a year. If I stay on the IVIG and don't go over 21 days I don't have horrible symptoms. But I do notice that towards the 21st day my legs start to ache and feel heavy and my hands burn ont he tops and I start to drop things. So I know I am getting help from the IVIG but it does not last very long in your body. I was hoping to get at least 4 weeks between infusions but every time I try to extend the period between I start to feel bad. So my doctor said, if it isn't broke then leave it alone for a while. I would love to go into remission but am told that most people on IVIG do not go into remission only halt the process of the disease. To try and go into remission my neurologist said I would have to try other treatments such as the cancer drugs to lower my immune response. I have not wanted to change anything at this point since the IVIG is working and I am able to lead a somewhat normal life. Has anyone been on one of the chemo drugs and went into remission?
I was just told by my neurologist that I am in remission. I had IVIG and was also on immunosuppressants. It took awhile but through the grace of God I made it!
I don't know how long it will last but hopefully with proper diet, rest and listening to my body it will b a long while!
Don't give up. It took awhile to get here and many bumps in the road along the way.
If I can help you please let me know!
Tess