AnonymousOctober 25, 2011 at 10:31 pm
My mum’s just been diagnosed with CIDP and they rushed her staight in for the IVIG but I saw somewhere that CIDP is eventually fatal and that it wont get any better. My mum’s my best friends too and I hate not knowing the truth about what’s wrong with her. Is the condition really fatal? And can she actually get back to normal after treatment? Plus, is it normal to get Dermititis after the IVIG? Sorry, that there’s so many questions but if anyone can answer them it would be a great help. Thanks.
AnonymousOctober 25, 2011 at 10:49 pm
I’m not a doctor but from what I’ve seen posted on the Forum CIDP is not usually fatal. As for the “getting better” part, each individual appears to react differently. Some go into remission with little to no residuals others have more residuals.
The most important thing to remember is that it is going to take time and patience. Your Mum is probably a little scared herself. She not going to die and she should improve, but it going to take time. Your have to be her cheering section to give her comfort and hope.
Other should reply with more advise. You sounded a little stressed so I help with the little I know. I was diagnosed back in 2005 and still running in circles. 😉
AnonymousOctober 25, 2011 at 11:05 pm
Leah – It’s going to be ok. I remember being scared for my daughter when she was first diagnosed. I know how you are feeling right now.
As Jim C said CIDP isn’t usually fatal.
Let me help you understand CIDP & IVIG better. I know once I knew a little about it I felt MUCH better.
CIDP happens when your immune system gets confused & sends your cells, which normally fight off germs, to attack your myelin sheath (which is the covering of your nerves).
Think of your nerves as an electrical cord. The myelin sheath is the plastic covering over it.
The “bad cells” create inflammation on the nerves – that’s what causes the pain, neuropathy, weakness, etc.
When IVIG is given the “good cells” from it go after the “bad cells” – which stops the attack on the myelin. Once the attack is stopped then healing can begin.
I want you to know your mom’s life won’t be the “normal” that she is used to. It will be new normal but that doesn’t mean it’s going to be all bad. There are MANY MANY people with CIDP who go on to live complete, fun, full lives.
It’s important right now to surround her with love & hope. She will be ok. It might take some time to find the right treatment & the right schedule. But she will be ok.
What kind of dermititis are you talking about?
To lesson the possible side effects of IVIG most people take either Tylenol OR Motrin AND Benadryl as a pre-medication. Is she receiving those?
AnonymousOctober 26, 2011 at 7:17 am
I think the doctor said something about contact dermatitis. He put her on steroid cream to clear it up and the he didn’t seem particularly worried but I was wondering if it was a common side effect to the IVIG or something different. Thank you so much for your help! It’s such a relief to know that she’s going to be alright eventually! When my mum came off of the IVIG she had a head ache, stomach ache and was really tired. When (I’m being possitive 🙂 ) the treatment works and she has to go back and have another session on the IVIG will she have to go through the same after effects or will her body get used to it? Sorry again for all the questions.
AnonymousOctober 26, 2011 at 7:31 am
There are a few things that can be done to cut down the side effects.
1) Make sure your mother is hydrated. This is VERY important!
2) The pre-meds. Make sure she is getting them! Ask about post meds too! That can help as well. Some people need to take Benadryl for 24 hours after the infusion too.
3) Make sure the infusion is starting off slowly & that the nurse is ramping up the speed every 30 minutes. When the speed is ramped up your mother’s vital signs should be taken at the same time. Ask what the max flow rate is – it may be too high for her.
4) What brand of IVIG is she getting? Make sure she is getting the same brand every time. There are times when hospitals will mix & match brands during a loading dose & that is NOT good!
How much IVIG is she receiving? And how often?
AnonymousOctober 27, 2011 at 10:11 am
So far she’s only been in once to get the IVIG. She was on 250g every day for five days. It was on a constant speed of 30 and they didn’t increase it until the very end of her stay there. I have no idea what the brand was but she has to go back to see her consultant in two weeks so we’ll ask then. I’ll also ask him about the pre-meds before the next session of IVIG. Thank you again 🙂
AnonymousNovember 4, 2011 at 7:43 pm
That is considered her “Loading dose” and probably from now on she will get less than that and in a shorter period of time (1 – 2 days not 4). I get my tx (treatment) in 1 day and at first was taking about 6-7 hours. This was since I began in Feb ’11. Now I am able to get it done in 4 1/2 hrs at a rate of 250. At first the max I could take was about 100-150, that’s why it took so long. But my veins just didn’t like it any faster and that’s okay, i wasn’t going anywhere 🙂
Most important is to drink a lot of water before, during and after tx. Day before get an extra bottle or 2 of water to help them get a vein easier, then as others said check about pre-meds. I don’t use them but may need to start as last couple tx I have had headaches for a few days. Maybe I’ll just take something at home myself, I just hate pills. I also take prednisone 15mg/day but don’t want to be on that very long due to the side effects. You will be able to get lots of info from folks here, very helpful and don’t hesitate to ask! That’s what these are all about!! God bless and keep praying!
AnonymousNovember 5, 2011 at 12:52 am
CIDP stinks, but is not usually fatal. It is a demyelinating Polyneuropathy. Demyelinating in the way that the immune system strips the nerve cell of its covering (myelin), and poly- meaning “in a lot of places.” It usually starts in the extremities and works towards the body center. But it only attacks myelin and myelinated nerves, so the autonomic and CNS is usually unaffected.
Sometimes it will attack the phrenic nerve which affects breathing, but not often.
Treatment is usually aimed at modifying the immune system so it won’t damage more tissue. Pain meds would be to treat those symptoms, but are not curative.
Yes, CIDP stinks, and can be scary. But as time passes, you will learn more and can share with your mum. Remember that she will have good and bad days. Some days she will be able to do more and other days she won’t. This is not necessarily an indication of her getting better or worse, just how the disease affects people. It seems like each day is a new adventure.
Love her and let her know you care. Let her do what she can, and what she wants to do. Support, not sympathy. And learn as much as you can about CIDP. Knowledge makes you a better caregiver, and her a better patient.
Thank you for taking the time to care for her. Caregivers are special and needed.
AnonymousNovember 11, 2011 at 10:10 am
The next several months or so will require a lot of patience from everyone (including your mom).
I started with the load dose (5 tx) of the IVIG, then went in one day every 4 weeks. I would feel sluggish for a day or so after the IVIG, then would get great energy, but lose it before the next treatment. So my doctor upped my IVIG to 2 days every 4 weeks – but again, had the let down before next tx cycle. So we went to one day every 2 weeks and that helped for a very long time to keep my energy at a steady state! It sometimes takes awhile to find the schedule that works best – once I was on a good schedule, I was able to work full-time, go dancing, do my gardening, etc … different people get different results, so be prepared to try different things until hitting on what works for your mom.
Also – a really big issue with CIDP (actually all autoimmune diseases) is chronic fatigue. It is so hard to explain sometimes, but I would feel like gravity had increased on me 20 times and every movement took great effort. I would spend those days curled in bed … a woman with Lupus wrote something called the “Spoon Theory” when she tried to get her friend to understand the fatigue. You can read it at: [url]http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/[/url] I hope this will help you both to understand the fatigue factor (I had trouble with it at first as I’ve always been very high energy!!).
This forum is a great place for learning – I hope you and your mother always get the answers you need!
AnonymousNovember 26, 2011 at 11:47 am
Hi again everyone 🙂 I’ve just got a couple of new quesions that I was wondering about. My mum complains of head aches quite a lot lately and I was wondering if it was related to the IVIG or the actual CIDP itself?? Oh, and my mum wanted to ask (she’d do it herself but she’s a bit of a technophobe, haha) is she still able to drink alcohol or is that bad for the treatment?? Thank you, again, for your help. It means at lot!
AnonymousNovember 26, 2011 at 1:01 pm
The headaches could be caused from either the IVIG or the CIDP.
When does she get them? Are they shortly after receiving her IVIG treatment?
To combat post IVIG headaches make she is drinking A LOT of water. Also, she should be pre-medicating with Benadryl and either Tylenol or Motrin. Some people also post medicate with both as well.
As far as the alcohol goes, I don’t think it will inhibit the IVIG treatment at all. I would be concerned with her drinking too close before or after her treatment with regards to 1) becoming dehydrated & 2) the alcohol mixing with the pre/post meds.
I would probably say don’t drink 3-4 days before or after a treatment but she should talk to her dr about it.
AnonymousNovember 26, 2011 at 1:31 pm
Thank you for answering 🙂
Erm, she had her last IVIG treatment about a month ago and she’s still got a constant headache and is tired all the time. We were told that being tired was normal but we thought it would get better after the IVIG.
The strange thing though is that the treatment seems to be working even though she’s getting headaches. The doctor said that her reflex’s have improved which I’m guessing is a step in the right direction but is it possible to regect IVIG and that’s why she’s getting side effects?
November 26, 2011 at 10:58 pm
I was dx’d with GBS in 10/2010 mostly better now but I had some skin reactions to the IVIG. It started with bumps or blisteres on my hands about 10 days after treatment, and then the skin started to peel off. I used cortosteroids, and after about 4 weeks it completely went away. I am not sure if the cortoseroids helped or not. Needless to say it was very concerning at the time. From what I have read it is one of the possible side effects to IVIG but nothing to be super concerned about. I wish I had known about it prior to the treatment.
AnonymousDecember 10, 2011 at 9:31 pm
Hi again everyone 🙂
My mum was talking to me the other day about how bad her headaches were. I hadn’t really thought that they were that much worse than a normal headache but she said they are constant and really painful. The doctors haven’t really given us any answers as to what it could be that is causing it so I was just wondering if anyone else is experiencing constant headaches? She hasn’t had any IVIG treatment for nearly two months, is it normal to still be having side effects?? She has another appointment to go look over how everything is going but that isn’t until March and I’m not sure whether we should go back and ask to see the specialist sooner or just wait until the appointment that’s been scheduled.
Thank you for any information you can give.
You must be logged in to reply to this topic.