What are life-threating symptoms of CIDP?
AnonymousAugust 10, 2010 at 6:02 pm
[FONT=”Book Antiqua”][SIZE=”3″][SIZE=”4″][COLOR=”Black”]Right now my husband has been going through a fatigue stage for at least 3 weeks. Yesterday he has a very bad day with a fatigue level of 10. ( I ask him to rate his pain and fatigue so I know how bad that it is) I called the neuro and left a message with a nurse to see what I need to do and if he can get in to see her. This afternoon I still haven’t heard anything, so I called back and talked to another nurse.. I told her I don’t know what to do and she told me to take him to the closest ER if he has life-threatening symptoms, like having trouble breathing and unbearable pain. Okay are these the only life-threating symptoms? I feel very unsure of what to do, today his fatigue level is at a 7 which is about where it has been for the past 3 weeks.
I wished that I had a guideline to go by that lets me know what to do. My daughter has diabetes and we have a guideline for what needs to be done when various things happens ( low, high blood glucose, vomiting,etc.). I feel like we have been put off and put off and it is starting to get to me.
I am really upset because I feel like I cannot give the care that my husband needs by not knowing what to do. I have researched on CIDP but I still feel ignorant about this.
Thanks in advance to all who replies and sorry for thelong post.
August 10, 2010 at 7:35 pm
Are you guys on maint doses of ivig? If you are not, then yes go to the er, this way you could see another neuro that would hopefully admit and start your husb on a load and suggest a maint schedule. If you ARE on maint doses, the plan he is on is not enough, if there are NO breathing symptoms and it is only fatigue, I would probably not go to the er. But I would DEMAND to speak to the neuro tomorrow and I would demand a load and say that I wnated the maint. closer together. Please give a history of your husb. ivig schedule so I can more accurately respond regarding ivig and mistakes and lessons that we have learned from so that maybe it can be of help to you. My guideline is if there is constant and consistant pain/fatigue for more than a few days I call the neuro, he sees us immediately, usually that day. We check reflexes, clinical presentation and if need be, a comaprison ncv/emg from the last to diagnostically prove new demylienation or not.
AnonymousAugust 10, 2010 at 9:50 pm
I have been there where your husband is and i have also had a neurologist just like his. We called and said that i could barely move and was falling almost every time i walked. The nurse got me in right away and i was put in the hospital. A few signs to watch for are things like, barely being able to walk, or move, and even feeling so tired you have to take a few naps a day.
Remember IVIG is not the only choice he has to do. It does not work with all patients, i happen to be one of those patients, i also have had Plasma pheresis and steroids, this helped me a little bit but not very much because my cidp is very aggressive and i have a rare type of it that hasn’t even been named yet. I then went to chemo and this was my miracle drug, i hardly ever fatigue out anymore, and i am now walking all the time, and even doing pretty long bike rides (8 months ago i could barely role over).
Just remember you guys do have choices both with the type of treatment you want and with what neurologist you want, and remember the neuros do not know everything, it isn’t them going through it , it is you guys.
Good luck with everything, and i hope he doesn’t get any worse.
AnonymousAugust 10, 2010 at 10:11 pm
[FONT=”Book Antiqua”][SIZE=”4″]My husband had an allergic reaction to IVIG, he has not had any since then and that was back in 07. The only thing he takes is dilantin and gabapentin for pain. That is it. He stays in constant pain and now the fatigue is really taking a tow on him. He says he can deal with the pain,most days, but the fatigue, he can’t deal with. Most days are spent in the recliner playing games on the computer ( trying to get his mind off of everything) or if it is really bad, he goes to bed.
I think that the reason he doesn’t go to the dr much is the fact that he only has medicare and we don’t have any money for alot of dr bills. I do not work, so we are living on a limited income. I have tried to work but I have had my share of medical issues,too. So, alot of times we feel like we hit a brick wall at every turn.
Thanks for all the replies. I just want to take care of him to the best of my ability and ya are helping with that. That makes me smile.. Thank you!!
AnonymousAugust 10, 2010 at 10:16 pm
I forgot to ask earlier:
Does anyone know if medicare pays for any of the treatments for CIDP? I know when my husband tried to take IVIG we had personal insurance and they cost $9500 each bag. Since he is allergic to that I didn’t know if medicare would pay for other treatments? :confused:
AnonymousAugust 10, 2010 at 10:28 pm
This hot summer is really taking its toll on us, especially for those with GBS or other health issues. Sometimes all we can do is, keep on keeping on. You know your circumstances, and if there is anything else that can be done to help you to cope, I hope and pray you will both find it. I know what it’s like to have limiting circumstances and not have the means to avail myself of better possibilities. We do what we can with what we have.
And pain is a huge factor to deal with. I try to distract myself too, and that helps up to a point. Other things that help me are the simple tasks I do when I’m at my strongest every day, little things on my list of things I want to get done. I usually have an hour or two when the pain isn’t so bad that it forces me to rest. Sometimes the smallest accomplishment or change can be so helpful. A different position, a change of clothes, something different to eat, any little thing that makes the pain more bearable and life a little enjoyable again. I am sorry for your husband’s struggle with the hardships and pain of GBS and I hope for better days for both of you.
AnonymousAugust 12, 2010 at 12:43 am
I had serious reactions to IVIG but had to have it. Been on it for over 5 years and had 350 infusions. The reactions to it were tempered by administering predisone, benadryl and Tylenol before each infusion and then other medications on hand later for migraines, nausea and muscle pain it caused. Some reactions I just had to deal with but I have greatly improved.
Most of the people who go to the clinic I attend for IVIG are on Medicare and Medicare Part D. There are other treatment options for CIDP.There are medications to help with CIDP symptoms.I find my disease must be monitored by a competent neurologist. It seems like CIDP morphs over time and causes different problems.
Having someone to talk to is very important too.We all need as much support as possible.
Is there any way your husband will go see another neurologist to get help for his CIDP?
AnonymousAugust 12, 2010 at 10:01 am
I think you and your husband should look into IVIG’s again and find out if something (like limekat said) can be done about the allergic reactions because if it’s possible, when you need something you have to learn to tolerate what it does to you. Without the treatments like IVIG and PP (plasma pheresis) you’re not doing anything to CONTROL progression. And you should talk to the neurologist and try PP (plasma pheresis) or another treatment that will control progression. Pain pills will not do that. I have medicare and medicare paid for my IVIG’s (secondary insurance picked up what they didn’t pay), no out of pocket cost. If your husband tries to find out if he can work through the IVIG’s or PP is better, I don’t think you’ll have to worry about what’s life threatening.
Fatigue is a very big part of CIDP and we just live with it the best we can. I would only worry about fatigue if it became so severe you had no quality of life.
I would get to an ER ASAP if I could no longer raise myself up to a standing position and had to crawl to phone. If I no longer had the strength to turn over in bed or get myself out of bed. Or if I started having falls again where my legs buckle. Falls due to doing something stupid are just part of life.
AnonymousAugust 12, 2010 at 12:44 pm
[FONT=”Book Antiqua”][SIZE=”4″]Thanks for the replies. The dr’s office finally called after 3 days waiting…anyway that is another post.;) They cannot get him in any earlier and they cannot give him any other scripts without seeing him first. So we are just waiting and I told him that if he has another episode of fatigue level at 10 we are going to the ER.
I read somewhere on the internet that exercise is good for CIDP patients; how can you exercise if you don’t feel like you can move? Does anyone here have an exercise program that they follow? [/SIZE][/FONT]
AnonymousAugust 12, 2010 at 1:10 pm
Your husband has had CIDP for 3 years & has not been on any kind of immunomodulators in that time? Crazy! No wonder your husband is fatigued!
First off….you need a new neuro. There are other treatments that SHOULD have been tried back in 2007 when he had a reaction to IVIG. By the way, what was the reaction?
I don’t really know much about Medicare so I can’t help you with what they will pay. But just know that there are other options out there that should & can be explored for treating your husband. He can try plasmapheresis, steroids, chemo drugs & sub Q IVIG. People have reported success with each of these treatments.
I’m sorry but it really infuriates me when I see people not being treated for CIDP. It’s just stupid of dr’s to let it go especially since there are a few treatment options available.
Call the CIDP foundation & ask them if they know of any neuro’s in your area.
August 12, 2010 at 1:20 pm
I had a big reaction to IVIG 5 years ago. My neuro would not let me have IVIG anymore BUT after I did research though this foundation and at the semi annual seminars I got the info for my neuro that said “lower the rate to 50 ml per hour and go to a surcrose free immuno globulin” I am now back on IVIG, using Gammunex and running at 50 ML per hour and really doing great. I am once again basically symptom free.
AnonymousAugust 12, 2010 at 4:31 pm
[FONT=”Book Antiqua”][SIZE=”4″]I know we need a new neuro but my husband is tired of trying new nuero’s. It took 5 different ones to find one that would give him a diagnosis. We have been told everything from “I don’t know to it’s all in his head to fibromialgia”. We knew that that was wrong because we have a friend with fibro and he didn’t have those symptoms. When a neuro finally gave us the CIDP diagnosis, she would not put him on steriods because he is overweight (weighs about 250) and she didn’t want him gaining anymore weight. She is the one that tried the IVIG..but when that failed..( he had a fever and a severe headache(couldn’t even open his eyes) for 3 days) she kept telling us there was nothing she could do but treat the symptoms the best she can.
Then we found a new neuro that specializes in CIDP, she keeps saying she is going to do things but doesn’t.. The last time we saw her, she says that my husband has a “mild” disease..which made me mad and I stated “mild, he cannot do 1/2 the things he could before” and she said “when I have 2 patients on ventilators right now,your husband is mild” So she does nothing because according to her he is not sick enough. She is also making me nervous because it took us 2 years to get my husband on disability and I do not want him to lose it because of a dr thinks that I am overreacting to his condition. I know he cannot hold down a job..he does good just to feed the chickens we have. His memory/mond is not the best now. Does anyone else have problems with memory? I told the neuro and she told me I was overreacting..Overreacting..he has gotten lost in a town we know 2 times and he has to close his eyes sometimes just to concentrate enough to carry on a conversation. I am trying to convince him to go to someone else..Maybe I can. [/SIZE][/FONT]
AnonymousAugust 12, 2010 at 6:19 pm
I also have some memory problems especially when i am really fatigued, i even have problems trying to talk and pick words that i mean but they dont make any sense..this bugs me a lot and worries mew sense i leave for school in less then a week.
i really hope your husband gets a treatment soon. when is his appt? im surprised a cidp specialist isnt worried, and she should be. this kind of makes me mad, bc it sounds just like what happened with me, i got so weak i couldn’t walk or move. please just be persistent with this, i would hate to hear that he is doing as bad as i was.
To the point of this being life threatening, yes it can be. As your guys neuro said she has two patients on a vent, once the cidp gets bad enough it can work its way up to the central nervous system and effect the major organs, such as the lungs and heart. It can be very scary to think about, i mean im 21 and i was almost to this point almost a year ago. Is your husband in a wheelchair? or can he still walk? If you have any questions just ask.
good luck with this and please keep us updated
AnonymousAugust 12, 2010 at 11:20 pm
Don’t be afraid to try to find another neurologist. I went through 9 neuro’s, two were just for consultations. Neurologist #6 was my great keeper. One neurologist told me nothing but physical therapy could be done and that I was hopeless. Another told me IVIG shouldn’t be tried because insurance wouldn’t cover it, but what he really meant was that if I couldn’t afford to pay him, he wouldn’t get anything. I insisted that IVIG be tried because how could you say it won’t work when you don’t even try.
Talk VERY STRONGLY and VERY FIRMLY to a doctor and INSIST that a treatment be started and kept on a maintenance to CONTROL the progression.
AnonymousAugust 12, 2010 at 11:25 pm
Chelle – I had a long reply typed up & it just disappeared. UGH!
Here is the short version of what I wrote….
If your husband refuses to get a new neuro then you need to talk to this neuro again about IVIG. There are ways to help with the side effects he had, which by the way, are EXTREMELY common with IVIG.
1) Hydrate, hydrate, hydrate for 24 hours pre & post infusion!
2) Slow down the infusion rate (don’t go over 100 ml per hour)
3) Add pre-meds like Benadryl and either Motrin or Tylenol or Aleeve
4) Add steroids as a pre-med
5) Have infusion over a period of days with smaller doses each day
6) If all else fails switch brands of IVIG
I have been a part of this website for 4 1/2 years & I cannot tell you how many people have had the same exact story you have. Some people go on to find new neuros & they find out they didn’t have CIDP at all. Others are put on a treatment regimen & they go on to live (nearly) normal lives. And maybe some others stay where they are & get worse. But the point is that your husband’s story is common & it’s up to you to advocate for him.
I took my daughter to a CIDP specialist. She took her off of IVIG (which was a successful treatment) and put her on steroids. My daughter got worse on steroids & suffered all the side effects. Our relationship ended with this dr when I stood in her office & yelled at her for being ignorant. I don’t advocate yelling at your doctor but you MUST stand up & say there are treatments out there for him.
If the dr doesn’t want to try IVIG again then try plasmapheresis, steroids, or chemo. CIDP isn’t one of those diseases that only has 1 treatment. There are many!
Don’t worry about him losing his disability. Think about him getting to the point where he won’t need to be on it!
AnonymousAugust 13, 2010 at 12:45 am
[COLOR=black]Corticosteroids do have nasty side effects in the short-term, such as irritability and weight gain. However, if you know about the side effects, you can take steps to limit them. For example, the main reason most people gain weight from steroids, at least in the short-term, is that you just feel hungry. Knowing that, you can move to a diet higher in fiber and water, to help feel fuller. Your husband may not like such a diet, but he could probably stand it for a couple of weeks.[/COLOR]
[COLOR=black]Even with the side effects, it is worthwhile to try steroids for a brief period. If they work, then you can develop a plan on how to use them and limit the side effects. All this is to say that the neurologist should not have dismissed steroids out of hand just because your husband is heavy. Your neurologist should be more aggressive in treating this syndrome. First, it is immaterial how many patients are on ventilators. Second, it is unusual for CIDP patients to be on a ventilator. I consider it a red flag that your neurologist has two at the same time.[/COLOR]
[COLOR=black]You have gotten good advice on how to limit the side effects of IVIg. If I had fatigue so bad that I could barely concentrate, which is probably what is going on with his memory lapses, I would keep trying until I had exhausted all of the techniques to limit side effects. It is not fun and can be quite time-consuming. But it will be worthwhile in the long run.[/COLOR]
[COLOR=black]One member, Julie, suffered from severe IVIg side effects. However, it was effective enough that she continued regardless. However, she recently switched to receiving Ig via injection (it’s not quite that simple, but I’ll spare the details), with very good results. If IVIg does finally work for your husband, this SCIg might be another possibility.[/COLOR]
[COLOR=black]As to your original question, your neurologist gave you the same information my (very good) neurologist gave me. However, if he becomes very weak, such that he can barely walk or feed himself, rapidly, taking him to the ER would be warranted.[/COLOR]
[FONT=Calibri][SIZE=3]Godspeed in finding your husband an effective treatment.[/SIZE][/FONT]
AnonymousAugust 13, 2010 at 2:21 pm
Chelle, is your husband an ex-military person? I went to the VA with mine and most all meds are free, and so are the treatments that my neuro prescribes. He does not have to be retired to use the VA, just a vet of a war era. I know a lot of people don’t like the VA, but it is a lot better than nothing. Sorry about the double post, but it wouldn’t let me edit last one.
AnonymousAugust 13, 2010 at 5:22 pm
No my husband is not ex-military and I agree with ya on how his neuro is handling things. I am going to talk to her on his next appt.; if she doesn’t do anything we will go to another neuro. Ya have given me so much encuragement that we can overcome this obstacle. We have hear for the last 3 yrs. that nothing can be done but now I see there can be.
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