Thanks to all for the warm welcome. I have a question on the progression of the disease. My doc claims 1/3 get better, 1/3 get worse and 1/3 stay the same. Everything else I've heard/read indicates that CIDP only gets progressively worse. ( I have been diagnosed with the disease for over 5 years and that is certainly my experience.) Any experience to the contrary?
Hi Roserider, I was diagnosed in January 2010, but I had the symptoms going back to 2007 or 2008. I was started on Prednisone coupled with IVIg infusions. The prednisone did not help me and also caused "muscle myopia", so the docs wanted me off prednisone. I was told that prednisone works for 90% of the people but not for me. As they reduced the prednisone, they started me on Imuran. After 2 weeks of flu like symptoms I went to the ER, was immediately admitted for dehydration and an "unspecified" infection. I spent 2 days in ICU and 2 more inn the hospital,then they shipped me off to a nursing home for rehab, I was there for 5 weeks.
I have heard of similar percentages but there seem to be more people that get it and not be cured, or have it, get better and then relapse. I haven't gotten to read everyone's story here, but I don't know of anyone that has been cured, and to never have it come back.
If I go back to my first symptoms (2007 or2008), my CIDP has gradually gotten worse, not ANY better. I'm back on prednisone until they can think of something else to put me on (there was some talk about CellCept). I did get some tactile sensations back, after the IVIg infusions, but my Neurologists don't want to put me back on it, because it was making my Pulmonary Fibrosis worse, I'm on 3 ML of Oxygen when I'm up and exerting myself at all. I don't need it for sleep, but I do have a CPAP machine on all night.
So, I guess my CIDP is very much like yours, continually, slowly, getting worse. One other statistic I read about was that from 5 to 15 percent of people with CIDP, die of the disease because it must have affected the nerves of a major organ.
Good Luck & God Bless,
Henry
The author Sarah Manguso has CIDP which went into remission. If you want to hear her talk about this, you can click on the following link:
http://www.wnyc.org/shows/lopate/2008/sep/05/surviving-a-major-illness/
I have had the disease for about one year with acute active status.
Heading to Mayo in Minn. next week.
I will update with the latest information ....Its been a humbling year.
Note: I aquired this disease from H1N1 flu shot in Oct,2010...
Much blessed,
bobbie
I can relate to Henry. While there tends to be an ebb and flow effect. the general tendencity is a worsening of the overall condition. We need to face the facts GB is what gets the attention. Ever try to tell even someone close about CIDP only to have them tune you out, feels great. As rare as GB is, CIDP is 10 times more so. Better to say you have MS.
The good news is- the chances are much greater of dying from a "standard" disease like cancer. Before CIDP greatly affects any life supporting autonomous systems. From what I gather the transfusions and "chemo" are worse than the disorder. Though prednisone, methylpredisolone, and non-prescription treatments seem to at least offer some symptyom relief and nerve damage prevention.
I have been up and down since 2004. My first 5 yrs were relatively stable but still not where I was pre-CIDP. Last 2 years going downward. Each flare I come back weaker. I have tried Pred, Imuran,Cellcept, and IVIG. Now on IVIG with Rituxan but still continuing to slide. I have applied for Stem Cell Transplant clinical trial at Northwestern in Chicago. It has had good success with long term remission. They won’t say cure.
I too am getting progressivly wors e, My Neuro has decided to take me off the IVIG as it is not helping me , I , In facet developed more symptoms since starting the IVIG in December and I am really terrified as to what is happening to me , I am in constant pain and have trouble walking which has gotten worse over this past few months , I am in severe pain with my hip and neck ( not sure if it is pary of CIDP) will be getting an X Ray of my hip along with a Dextascan because of my posture recently , I again am not sure if these are other problems , When talking to my Neuro she said " well you know you are getting older " not sure in what context she meant it , I am almost 65 , but did not think that was considered really old these days . She said to make an appointment to see her after my tests , I was oreginally to see her in June , She is a very good Doctor but I am feeling really frightened as to what is happening to me
It sure can be frightening, Mary. I was diagnosed in quite a few years ago. It has gotten worse. For me, prayer works the best. I have so many other issues that CIDP is just the rarest one I'm contending with. I'm praying for all of us, and others like us. Bless you.
Mary said:
I too am getting progressivly wors e, My Neuro has decided to take me off the IVIG as it is not helping me , I , In facet developed more symptoms since starting the IVIG in December and I am really terrified as to what is happening to me , I am in constant pain and have trouble walking which has gotten worse over this past few months , I am in severe pain with my hip and neck ( not sure if it is pary of CIDP) will be getting an X Ray of my hip along with a Dextascan because of my posture recently , I again am not sure if these are other problems , When talking to my Neuro she said " well you know you are getting older " not sure in what context she meant it , I am almost 65 , but did not think that was considered really old these days . She said to make an appointment to see her after my tests , I was oreginally to see her in June , She is a very good Doctor but I am feeling really frightened as to what is happening to me
Thank youLori , I too believe in prayer . I had my first symptoms many years ago aboyut 10 years now and it is only last september I got my diagnosos when it got a lot worse , It has steadly gotten worse since then , I really should not be having a pity party because there ar eso many more worse off than me , I am usually very strong and Like you I have other issues too . What makes it worse is many people even family don't understand it at all
It hurts the most when people don't even think you are sick....even with reports from doctors...family can seem clueless. That does hurt the most. It's tough when you can't walk and nobody gets it.
Bill, you sum it up well. The complete tuning out when you have to say what you have, is just a drag. I have started just saying it's like MS but more rare. They still tune out or think a neurological disorder means you are NERVOUS and HIGH STRUNG! Ha! With the those responses I'm about to be! ha! Could someone tell me what kind of walk they have when in episode? My gait is wide now and my outer calf muscles feel like they are fused to the bone sometimes.
Bill7718 said:
I can relate to Henry. While there tends to be an ebb and flow effect. the general tendencity is a worsening of the overall condition. We need to face the facts GB is what gets the attention. Ever try to tell even someone close about CIDP only to have them tune you out, feels great. As rare as GB is, CIDP is 10 times more so. Better to say you have MS.
The good news is- the chances are much greater of dying from a "standard" disease like cancer. Before CIDP greatly affects any life supporting autonomous systems. From what I gather the transfusions and "chemo" are worse than the disorder. Though prednisone, methylpredisolone, and non-prescription treatments seem to at least offer some symptyom relief and nerve damage prevention.
Hi all,
I was dxed in Dec '10 after having symptoms for only about 3 months, that I was aware of. Other issues dated back a few years just not sure if CIDP related, but definitely Auto Immune related.
I am at this moment sitting in Northwestern Univ Hospital having just received my first round of chemo for my stem cell transplant. I have a blog if you are interested in reading my story. wendyssct.blogspot.com
My hope is to encourage others about this process for a great way to get rid of the the problems from CIDP. As I am rather new to the disease I don't think I have the nerve damage some others may have, and hope to heal and recuperate faster from the SCT and be back to "normal" in short order! Healing for others who have had it longer is very possible from the SCT also as testimony from others is available for you out there. Go to
www.facebook.com/cidpstemcelltransplant
for two very good reference points for this procedure!
My faith is a very strong part of my life and this plays a big role in my attitude and story.
Best of everything to all!
Wendy :)
I agree no one has heard of CIDP. I always just say, "I have CIDP, the first cousin of GBS/ALS."
Bill7718 said:
I can relate to Henry. While there tends to be an ebb and flow effect. the general tendencity is a worsening of the overall condition. We need to face the facts GB is what gets the attention. Ever try to tell even someone close about CIDP only to have them tune you out, feels great. As rare as GB is, CIDP is 10 times more so. Better to say you have MS.
The good news is- the chances are much greater of dying from a "standard" disease like cancer. Before CIDP greatly affects any life supporting autonomous systems. From what I gather the transfusions and "chemo" are worse than the disorder. Though prednisone, methylpredisolone, and non-prescription treatments seem to at least offer some symptyom relief and nerve damage prevention.
Wendy said:
Hi all,
I was dxed in Dec '10 after having symptoms for only about 3 months, that I was aware of. Other issues dated back a few years just not sure if CIDP related, but definitely Auto Immune related.
I am at this moment sitting in Northwestern Univ Hospital having just received my first round of chemo for my stem cell transplant. I have a blog if you are interested in reading my story. wendyssct.blogspot.com
My hope is to encourage others about this process for a great way to get rid of the the problems from CIDP. As I am rather new to the disease I don't think I have the nerve damage some others may have, and hope to heal and recuperate faster from the SCT and be back to "normal" in short order! Healing for others who have had it longer is very possible from the SCT also as testimony from others is available for you out there. Go to
www.facebook.com/cidpstemcelltransplant
for two very good reference points for this procedure!
My faith is a very strong part of my life and this plays a big role in my attitude and story.
Best of everything to all!
Wendy :)
Thanks to all for the useful comments. It seems that for most of you the disease is following a course similar to mine, i.e steadily worse with time. I also tried Cellcept and Imuran but neither helped. I will be curious to see how the stem cell treatments work; please keep us posted. I will check out your blog, Wendy. After reading many of your comments I feel very lucky that I have no side effects with IVIG. I take the maximum dose of 2g/kg of body weight over a 2 day span and never have had a problem. I was interested to see that Henry's doc tried pred with IVIG infusions because that is what my doc is thinking of now. I have been leery of taking pred because of the side effects but it may be worth a shot if it could slow down the progression.
Hi Roserider, when I was on both Prednisone & IVIg, I did start to get some sensation back in my hands and feet, but the Neurologist discontinued the IVIg because it was making my Pulmonary Fibrosis worse. They've also started to reduce the prednisone, because it was weakening my muscles. They went to a "non-steroidal immunosuppressant", (Imuran) but that made me very sick, as I've mentioned before. Now they are thinking about going to CellCept.
My side effects from prednisone were a 50 pound weight gain (I've since lost 23 of those pounds); vision changes and some worsening of my hand tremors, not to mention the muscle myopathy.
Although my physical rehab is helping maintain some muscle tone, it is not helping the CIDP. My feet are very bad (numbness, loss of sensation and some muscle cramping), so much so that I have fallen twice in the last 2 weeks. Fortunately, I got nothing worse than a couple of bruises. Today, my wife told me to "pick up my feet" while we were walking from the car to the restaurant (I was using the walker), because I was scuffing my feet. but I couldn't stop, because I couldn't lift my legs any higher.
GOOD luck & God Bless,
Henry
Henry
Thanks for the comments. I am very sympathetic to your situation. My doc extended the IVIG treatment cycle from my usual 3 weeks to 5 weeks, not believing I would go down hill much, and I really crashed in weeks 4 and 5. I cannot get around without a walker, having fallen 4 times before going over to the walker. As for picking up my feet, it is impossible as you know. It is like having lead bricks strapped to your legs. I cannot even lift my left leg from the floor when I am in a sitting position. I had infusions over the past couple of days and expect to get much better before long as we are going back to the 3 week cycle. Before the 5 week test between infusions, I was walking fine, exercising at the gym, driving, horseback riding, etc. so hope to enjoy a few more years of these activities before the disease progresses to the point where I am unable to do so.
Weight gain with pred seems very common but fortunately I am very thin now so a few extra pounds won't hurt. I haven't heard of the eye changes before nor the tremor problems. I am currently having a lot of tremor problems; I basically had none before this last extended cycle. Bone loss also seems to be a common. side effect for pred.
Good luck in living with your CIDP.
Roserider
Henry said:
Hi Roserider, when I was on both Prednisone & IVIg, I did start to get some sensation back in my hands and feet, but the Neurologist discontinued the IVIg because it was making my Pulmonary Fibrosis worse. They've also started to reduce the prednisone, because it was weakening my muscles. They went to a "non-steroidal immunosuppressant", (Imuran) but that made me very sick, as I've mentioned before. Now they are thinking about going to CellCept.
My side effects from prednisone were a 50 pound weight gain (I've since lost 23 of those pounds); vision changes and some worsening of my hand tremors, not to mention the muscle myopathy.
Although my physical rehab is helping maintain some muscle tone, it is not helping the CIDP. My feet are very bad (numbness, loss of sensation and some muscle cramping), so much so that I have fallen twice in the last 2 weeks. Fortunately, I got nothing worse than a couple of bruises. Today, my wife told me to "pick up my feet" while we were walking from the car to the restaurant (I was using the walker), because I was scuffing my feet. but I couldn't stop, because I couldn't lift my legs any higher.
GOOD luck & God Bless,
Henry
Well, I can tell you about myself, and three friends I have made over the last few years, who have CIDP.
1. Me. It is not quite three years since I was diagnosed, although I think I had it much longer than that. I went through three episodes in which I was hospitalized because I could not walk. I have been on regular IVIG for about two years, and Imuran not quite as long. I seem to be very stable: no deterioration in my strength for some time. I can walk easily without assistance, do most ordinary activities. I am noticeably weaker than I used to be, and get tired very easily. I sleep 9-10 hours a day. But, I seem to have reached some sort of plateau, and am not getting any worse, but also not much better. It is not clear to me if the stability of my condition is due to the medication, or just the fact that the disease has run its course. But, I have successfully stretched out the interval between IVIG treatments from 3 weeks to 8 weeks, which is encouraging.
2. Friend A. He has had CIDP for several years. He went through much the same course as me, including some very bad episodes, but also seems to now be very stable. He is now totally off IVIG, but still taking Imuran. He is trying to taper off the Imuran, to see if it is still needed. He walks well, but still has some weakness, a little bit of balance problems, seems to be very functional.
3. Friend B. Had a much milder case, many years ago. It caused leg weakness, but never really got to the point that he could not walk. He never took any medication except Prednisone, and has been off that for several years. (I think he contracted the CIDP before they knew about IVIG and Imuran, but not sure of the timing.) He now wears leg braces because he cannot keep his toes pointed up (foot drop) so he tends to trip. He also has some leg weakness, sometimes uses a cane. He seems to have been very stable in this condition for a number of years.
4. Friend C. A lady about my age. She contracted CIDP about a year ago, and seems to have had a pretty severe case. Has been hospitalized several times. She now gets IVIG every three weeks, but still has to use a walker to get around. She tells me that she is slowly improving, and I think I see slight improvement in her walking with the walker, but it is not dramatic. She is on a low dose of Imuran because she had problems with the higher dose. From my experience, she is still in the relatively early stages.
So, in my experience, people do seem to stabilize at some point, albiet with a certain deficit. But, it is hard to tell at times if people are stabilizing because the disease has burnt itself out, or because the medicine has finally gotten adjusted properly, or is finally beginning to have a delayed effect.
Bill
I really have a hard time dragging my feet, even when I think I am lifting my feet at times, I'm not. My right side is more affected. Is that your experience, folks?
roserider said:
Henry
Thanks for the comments. I am very sympathetic to your situation. My doc extended the IVIG treatment cycle from my usual 3 weeks to 5 weeks, not believing I would go down hill much, and I really crashed in weeks 4 and 5. I cannot get around without a walker, having fallen 4 times before going over to the walker. As for picking up my feet, it is impossible as you know. It is like having lead bricks strapped to your legs. I cannot even lift my left leg from the floor when I am in a sitting position. I had infusions over the past couple of days and expect to get much better before long as we are going back to the 3 week cycle. Before the 5 week test between infusions, I was walking fine, exercising at the gym, driving, horseback riding, etc. so hope to enjoy a few more years of these activities before the disease progresses to the point where I am unable to do so.
Weight gain with pred seems very common but fortunately I am very thin now so a few extra pounds won't hurt. I haven't heard of the eye changes before nor the tremor problems. I am currently having a lot of tremor problems; I basically had none before this last extended cycle. Bone loss also seems to be a common. side effect for pred.
Good luck in living with your CIDP.
Roserider
Henry said:Hi Roserider, when I was on both Prednisone & IVIg, I did start to get some sensation back in my hands and feet, but the Neurologist discontinued the IVIg because it was making my Pulmonary Fibrosis worse. They've also started to reduce the prednisone, because it was weakening my muscles. They went to a "non-steroidal immunosuppressant", (Imuran) but that made me very sick, as I've mentioned before. Now they are thinking about going to CellCept.
My side effects from prednisone were a 50 pound weight gain (I've since lost 23 of those pounds); vision changes and some worsening of my hand tremors, not to mention the muscle myopathy.
Although my physical rehab is helping maintain some muscle tone, it is not helping the CIDP. My feet are very bad (numbness, loss of sensation and some muscle cramping), so much so that I have fallen twice in the last 2 weeks. Fortunately, I got nothing worse than a couple of bruises. Today, my wife told me to "pick up my feet" while we were walking from the car to the restaurant (I was using the walker), because I was scuffing my feet. but I couldn't stop, because I couldn't lift my legs any higher.
GOOD luck & God Bless,
Henry
Lori
My experience is similar; lifting of the feet is a big problem. My doc prescribed a metal brace that fits in the shoe like an insert and then bends up and gets strapped to the leg. It is supposed to provide some spring to the step but I find it awkward and not very helpful. By the way my left leg is the weakest leg, although my right ankle is my weakest ankle.
Lori said:
I really have a hard time dragging my feet, even when I think I am lifting my feet at times, I'm not. My right side is more affected. Is that your experience, folks?
roserider said:Henry
Thanks for the comments. I am very sympathetic to your situation. My doc extended the IVIG treatment cycle from my usual 3 weeks to 5 weeks, not believing I would go down hill much, and I really crashed in weeks 4 and 5. I cannot get around without a walker, having fallen 4 times before going over to the walker. As for picking up my feet, it is impossible as you know. It is like having lead bricks strapped to your legs. I cannot even lift my left leg from the floor when I am in a sitting position. I had infusions over the past couple of days and expect to get much better before long as we are going back to the 3 week cycle. Before the 5 week test between infusions, I was walking fine, exercising at the gym, driving, horseback riding, etc. so hope to enjoy a few more years of these activities before the disease progresses to the point where I am unable to do so.
Weight gain with pred seems very common but fortunately I am very thin now so a few extra pounds won't hurt. I haven't heard of the eye changes before nor the tremor problems. I am currently having a lot of tremor problems; I basically had none before this last extended cycle. Bone loss also seems to be a common. side effect for pred.
Good luck in living with your CIDP.
Roserider
Henry said:Hi Roserider, when I was on both Prednisone & IVIg, I did start to get some sensation back in my hands and feet, but the Neurologist discontinued the IVIg because it was making my Pulmonary Fibrosis worse. They've also started to reduce the prednisone, because it was weakening my muscles. They went to a "non-steroidal immunosuppressant", (Imuran) but that made me very sick, as I've mentioned before. Now they are thinking about going to CellCept.
My side effects from prednisone were a 50 pound weight gain (I've since lost 23 of those pounds); vision changes and some worsening of my hand tremors, not to mention the muscle myopathy.
Although my physical rehab is helping maintain some muscle tone, it is not helping the CIDP. My feet are very bad (numbness, loss of sensation and some muscle cramping), so much so that I have fallen twice in the last 2 weeks. Fortunately, I got nothing worse than a couple of bruises. Today, my wife told me to "pick up my feet" while we were walking from the car to the restaurant (I was using the walker), because I was scuffing my feet. but I couldn't stop, because I couldn't lift my legs any higher.
GOOD luck & God Bless,
Henry