Good luck on your journey of GBS. I am 5 months out of hospital and working 6 to 7 hours per day. Still have some numbness but overall doing well. Still need an afternoon nap. Keep a positive attitude and rest and heal.

hi necey

I got hit May 29 and started IVIG on June 12 and left the hospital with the help of a walker on June 21. Still feel at worst at times (hands and waist hit hard).But, every now and then I think that I feel something improve, usually after rest. I miss a lot of things and want them back.
Your attitude is screaming through your message, thanks. Please continue wih posts as you get better.

Cheers!:cool:

One thing I have to advise the newbies is that you will need a LOT of patience….you will want things better yesterday and it will take time and lots of rest. Believe me, I am not patient so this was very hard for me and still is. Try not to get discouraged and hold onto hope for better days when you have dips. It is an up and down recovery, but it trends upward.

Hi Dee – Welcome!

I’m wondering why the dx of CIDP first. Most people get a GBS dx then once they relapse they get the CIDP dx. I find it interesting that you got the CIDP first especially since the symptoms you stated could have very easily been associated with GBS.

I don’t have anything nice to say about Prednisone. I think it’s an awful drug personally & not really worth the side effects. If it were me, I’d be bugging the dr’s to get me off of it. But many people do get better with them & they have helped people live nearly normal lives. I’m glad that you feel it is working for you. You’ll find that most everyone has a different opinion of it – some feel like it’s been a life saver while other’s hate it. My advice is to just do what you feel is right for yourself and RESEARCH, RESEARCH, RESEARCH.

IVIG is scary at first but I think it’s safer than steroids. With IVIG there are many less side effects & most people can go on living their lives looking like nothing is wrong with them while taking it – as in there are no outward showing side effects like the puffy face & weight gain with ‘roids. With IVIG you just have to figure out the right frequency & dosage for yourself & then you take that one day to get your treatment & then your done until the next treatment. IVIG was our lifesaver!

My daughter has CIDP (dx’d at 4 – now 6) and had inflammation on her cranial nerves. I believe it was cranial nerves 6 & 7…but my memory isn’t so great with those details anymore. She had an MRI about 11 months after her original dx of GBS & her cranial nerves were no longer inflamed. Her right eye was paralyzed facing in towards her nose but is pretty much perfect with regular IVIG treatments. She gets 20 grams every 2 weeks now. Prednisone made it worse…thus the explanation as to why I don’t like it.

I wanted to comment on you calling CIDP a “hideous condition”. You know…it does sucks, I’m not going to lie. And I think as a mom of a child with it I can say it sucks big time! But you know, I try to tell myself that it’s not the worse thing in the world to have. There’s treatment for it & medical advances being made nearly everyday towards better treatments & hopefully a cure one day soon (my prediction is within the next 4-5 years or so). People do recover & can lead almost perfectly normal lives…it might be a different normal but at least it’s some sort of normal.

When Emily was first dx’d I kept repeating to myself “You are the mother of a sick child” until it sunk in. Once it was perfectly sunk in then I could face it head on & begin the fight. I think that’s the best way to accept it – you just keep repeating it to yourself constantly. One day, you’ll finally truly accept it & then you can move on.

We try to not let CIDP run our lives. Our mantra is “Emily has CIDP…CIDP does NOT have Emily.” That means that we want to control the disease and we want to control our lives, not the other way around. It’s easy to fall into the disease & the treatment running your life & it will happen in the beginning while you’re still figuring it out – but once the dust settles & you get into a treatment plan then you can really take hold of the reigns & live again. CIDP is not a death sentence by any stretch of the imagination! Remember that on the bad days…and there will be many – but you will get through them.

One of the great things about this site is that the people here offer TREMENDOUS amounts of support. If you need anything they are here for you. I know that I would have never made it through this the way that I have if I didn’t have these people.

Good luck,
Kelly

PS, remember GOOGLE is your new best friend. Anytime there’s something you want to figure out, go there!

Deem, As one newbie to another, welcome. I’m finding this is a great resource of people and advice, to those of us just beginning this journey.
I have learned so far, this is a really individualized disease. Everyone has basically the same symptoms, but, the extent and course of things are so different. I’m one who has been going the prednisone route. (my doctor also has me on a low dose of senemet for muscle spasms.) Many people can’t stand it (with very good reasons), but, for me it has been my only option. Yes, the weight gain has been very bad, and I’m working to counteract that. (Warm pool exercise doesn’t seem to take too much out of me.) My doctor tried a group of other things and medications that nearly put me in my grave! (one medication even caused me to periodically pass out, wherever I was.:eek:) And I know that the medication will never be a treatment, just hopefully, buy me some time. (I think we all wish for a few more of our “good days”) I hope you find your way through this, and can manage your problems too. – Busymom

Hi Deem,
I sent you a private message. You can locate them by clicking on the top right hand side under you name where it says private messages.
Dawn Kevies mom

Hi Deem,

I’m also new around here. I was dx with CIDP in Sept. and after the Dr’s. decided the IVIG wasn’t working the way they wanted it too have been on an exclusive regime of first high dose solumedrol and now high dose methylprednisolone twice weekly. Maybe I’ve been lucky but the side effects haven’t really been all that bad for me and the results have been nothing short of dramatic, when I was in hospital in Sept./Oct. I was paralyzed from the neck down and now am back to work full time with limited residuals.

I think one of the most important things (and also one of the hardest things to have) to have in learning now to deal with this illness both in recovery and the aftermath is a positive attitude…it’s oh so easy to just give up and give in to the depression etc. that comes with a chronic illness like this but once you can move past that and accept whatever your new reality is for the most part it’s not too horrible, just inconvenient as all get out at times.

Deem,
Welcome to the forum! I have had a severe case of CIDP for almost 6 years now. I was like you, I deteriorated very rapidly in the first few months & was at first dx with GBS. But when I continued to decline after IVIG infusions I was then rediagnosed with CIDP. I was in a power chair with virtually no use of my hands for almost 2 1/2 years, but now can walk with AFOs & use a cane when I go out. When I get worn out, at home, I always have the powr chair to fall back on. I still suffer from fatigue & find I need 10-11 hours of sleep to function (I hate taking naps.)

Are you on oral prednisone or infused solumedrol? I was just asking, as my weekly solumedrol infusions of 1,000 mg are what kept me functioning just enough to stay out of the nursing home. But I still had to have someone with me at all times. I gained 80# during the 21 months I was on steroids, which has been a real battle to take off. I also had to have cataract surgery in both eyes in September of 2004. I got a rash that did go away when I finally got off of them, but still have the scars. I would definitely suggest that you try IVIG if your insurance will go for it.

BTW I would be happy to correspond with you via email or phone if you would like. I know how one can feel so all alone with this illness…
Pam

Kevin felt that way, he would always complain he just did not feel right, he was icky feeling as he said. Headache and stomach aches and just wanted to be away from everyone. Glad you ivig arrived, hopefully after a few loading doses in conjunction w/the prednisone, you will be feeling better!
Dawn Kevies mom

I had frequent headahces, high BP, fast heart rate and feelings of extreme tiredeness….slowly, slowly, slowly they went away. Tiredness and weaknes are still around. I think a lot of my weakness is that its been 1.5 years in the making. Fortunately for me the pain/tingling is well controlled on cymbalta and neurontin. I have been on prednisone for over a year. I started out on the 6 week cycle but my body relasped each time we tried to wean it. Finally after every 3 week cycles of IVIG I am slowly getting off the prednisone and am down to 20 mg every other day…..its been a slow process.

Welcome to the forum, there is a wealth of info here for the asking. Good luck with your IVIG. 🙂

Hello Dee. I was dx with gbs. What sent me to the hospital the first day was bad headache ,and numb fingers and toes, and high blood pressure . The hospital checked for Heart attack, then cat scan ,then mri ,all came back negative. They said I could stay overnite or go home. I went home and on the way my legs started aching bad. Went home and jumped into the jacuizy tub then took tylenol and went to bed. Next day I went to get up, and I almost fell ,cause my foot and hands were gone (numb with no feeling).The headache was about three days before I went to hospital. The high blood pressure was also with it. I then went to another hospital( U of M). They dx right away with spine tap and started ivig 1 day later.
Take care
Ron

Welcome Ronda,

Glad you found this site. There’s a lot of good info and help. The Ivie will hopefully help.

I haven’t experienced an eye twitch. Perhaps some can answer that for you.

Jim C

Hi Rhonda

I’m in Vancouver, so we may have a few things in common, although the interior is so big, you might be far, far away from where I am. Where are you receiving your IVIG?

As far as the eye twitch is concerned, you are going through a lot right now, so it may be stress-related. I have gotten a lot of relief by doing relaxation exercises, especially deep breathing and visualization. You generally have to find out about these things on your own, as most doctors (especially specialists) don’t really have the time or experience to help you with the stress that comes from being diagnosed with, and living with, a chronic illness like this. The University of Victoria has organized a program called the Chronic Disease Self-Management Program, and I think they make it available in various places around the province — it definitely helps with coping strategies and emotional support. Info is at 1-866-902-3767 or on the web at [url]www.coag.uvic.ca/cdsmp[/url] .

I hope the IVIG gives you good results. I had very good results at first, and a remission of about 6 months. Now I am on cyclosporine and getting plasma exchange, and I am slowly climbing back in the direction of remission again. However, some people get sustained remission from IVIG alone, I hope you are among them.

My question is what is the next step? How will I know when I get IVIG again, Will I need IVIG again??

Rhonda,

I understand how confusing this illness can be in the beginning – the uncertainty just adds another dimension to deal with. I hope some of the following info, based on my experiences caring for my daughter w/cidp, can give you some direction and help to reduce the anxiety you are experiencing – for me, knowledge is a form of control.

You don’t give many details on your condition – you state that you have “just been diagnosed with CIDP” – I wonder how long have you had symptoms? In many cases, an initial diagnosis of Guillian Barre is made, and is often treated immediately with ivig (depending on severity of symptoms or sometimes, availability of ivig) in an effort to slow down or mimimise damage. When relapses occur, or your condition continues to deteriorate longer than 8 weeks, then CIDP is suspected. In our case, a spinal tap confirmed GBS, and later, a NCV test was performed when CIDP was suspected.

Now that you have had ivig, the doctors will be better able to judge by your response. Residual problems can hang on while your body tries to repair itself, but if you have reoccuring numbness, weakness, or continuing loss of motor function, then additional treatments should be discussed with your doctor. Many people with cidp maintain an infusion schedule, ranging anywhere from a few weeks to a few months apart. Administration of ivig seems to be an art, and it may take some experimenting for your doctor to find just the right schedule for you.

Use the search function to find posts on ivig – the info posted here by others was our lifeline as the doctors in our area had no experience with reoccuring relapses. You may find that reducing the rate of infusion, and pre-treatment w/Benadryl can help with the side effects.

Best wishes for continuing recovery
cd

Hi Cd,
My name is Dawn, and my son Kevin 10yrs. old was diagnosed w/CIDP in 10/06. One 5 day cousrs of IVIG was given, miraculous results by third treatment. Progress was so spectacular drs. were contemplating changing the dx. to aidp (also known as gbs) anyway in the last week we have noticed some tiredness and maybe some weekness. Currently we are going to try rest, better bed times etc. to see if he is just over doing it and these are in fact residuals of aidp or cidp occuring again therefore necessitating ivig. You seem to be on the same page as me regarding your knowledge of the illness (after reading your post to the newly dx person you wrote to today) I was wondering if you could phone me and answer some questions based on your experience and knowledge. The confusion and uncertainty make this a very unbearable illness for a parent. Thanks,
Dawn
630-663-0750

Hi Rhonda – welcome! I’ve had 3 different courses of IVIG treatment, having another two day course next week. I found that I, too, had the chills/flush/flu-like symptoms after my first inpatient 5-day course. I had a 5 day outpatient treatment with basically the same after-symptoms. Also, with the second one I had a roaring headache. I found this forum and it was suggested to keep track of the different IVIG manufacturers as some people had worse/fewer side effects with certain brands. I did this, and found that after my third course – outpatient for 3 days – the only problem I had was a 2 day headache and tiredness. I take 650 mg Tylenol pre-infusion. It is suggested that you also take a 25 mg Benadryl, but since I drive myself to treatment, I get too sleepy and wait until I get home for the Benadryl. This is a wait and see thing – and, believe me, you will know if you need IVIG again! But if you do, don’t wait until you are so weak. Start a journal (another idea from this forum) and write when/if symptoms start and what kind of symptoms you are experiencing. I have started doing this, and it really helps. Thanks to all of you in my new family for the great suggestions! This is a great place to get answers or just to know you aren’t alone. Good luck and good health!

[QUOTE=Rhonda]Got IVIG on Monday and Tuesday. Felt sick in the evenings after both days. Chills then hot red face flu like feeling at night. Is this normal?[/QUOTE]

Reactions like that are not unusual. Sometimes changing the brand of immunoglobin makes a difference. At VGH, where I was going for IVIG when I was on it, they only seemed to have two kinds: IVIG S/D from Canadian Blood Services and Gamunex from Talecris (formerly Bayer). The Cdn Blood Services product did give me flu-like symptoms for a few hours the one time I had it.

These reactions are uncomfortable but they go away. Some people pre-medicate with Tylenol (in case of headaches) and Benadryl (in case of allergic reactions like hives or a rash. Tell the nurses supervising your next infusion that you had this reaction. If they have administered much IVIG they should have some ideas about what to do.

There’s a chance that the symptoms will not recur after subsequent treatments, that you will somehow adjust to the IVIG. I had nausea and fainting after my initial two-day “loading dose”, but that was the only time.

[QUOTE=Rhonda]My question is what is the next step? How will I know when I get IVIG again, Will I need IVIG again?? Any help would be much appreciated![/QUOTE]

You need to be on a regular schedule of infusions. Possibly your doctor wants to know if the treatment has had any effect before ordering the next ones. The fact that you have felt a difference is really excellent.

I believe the “standard” interval between IVIG treatments for CIDP in the BC medical system is 4 weeks. In my case, after 6 months of IVIG alone I was pretty much symptom-free, and my neuro started lengthening the time between treatments.

Good luck with this.

BTW, I think the neurologist with the best knowledge of CIDP in our province is Dr. Gillian Gibson at the Neuromuscular Diseases Clinic of Vancouver General Hospital.

I never had enough pain to warrant using pain meds, only pins-and-needles in my feet. The course of this disease seems to be different for everyone. My main problems are weakness, lack of coordination, poor balance and fatigue. I also realized that these in turn give me tension (a lot of it from fear of falling) and more fatigue (fatigue is a vicious circle: fatigue -> lack of activity ->de-conditioning -> depression -> more fatigue).

Lots of people on this board have advice and experiences to share regarding pain meds.

I’ve found that keeping the flow of the drip slower on the IVIg can help with the flu like symptoms. Also I’ve had my doctor prescribe Dexamethasone to keep on hand when the symptoms got really bad, I’ve had to use it a couple of times and it helps with the killer headaches that can happen.
Good luck with the treatments and welcome to the site!

For the IVIg discussion on side affects after treatment…. The different types of IVIg do make a difference on the amount of side effect and in particular how it is administered. My partner Dave who has CIDP was getting to the point that he had such bad migraines he was just given demoral right off the bat to help fight the headaches. He started getting treatments in Alberta at the UofA hospital and we have now found out that they were throwing the IVIg fluid through at an insanely quick rate. If you are having problems with side effects discuss your issues with your health care worker and consider asking them to slow it down! Dave preferred getting done quickly but after a couple of nasty migraines lasting weeks after treatment he realized it was easier to slow down for the time of treatment and burn a day and have less affects. We’ve also been told that having Dextrose (otherwise known as D-5) put in simultaneously at the same time as the IVIg helps as well. Drinking lots of water before treatment has been stressed as beneficial as well. The biggest thing though is tell the doctor your having these reactions and discuss slowing the rate down or other options, as well as your getting ready for your IVIg discuss with the nurse who is taking care of you about the side effects – in reality it has been the nurses that have given us the most information.

Rhonda and Dawn…. I have been on the journey of helping my boyfriend deal with CIDP for the last 4 years and believe me it is a long journey but if you have questions or need someone to talk too you can email me at [email]rhodahan@telus.net[/email].

Rhoda