I can’t answer your questions about IVIG because I am doing Plaspherisis (sp)/Plasma Exchange. I also take prednisone 10 mg everyother day (increased from 5mg last week) and 50 mg of Imuran 3x a day. I can comment on having one of those CIDP days. I had one yestrday. I should never had gone to work but I did. I took a pain pill around 9 in the morning and put my head down on my desk and the next thing I knew it was noon–where did the morning go???? I should have gone home yesterday but I stayed at work. I could barely get up the stairs when I did get home. I went to bed around 830 and today I felt much better and according to my co-workers I looked better as well. What gets me is it seems like on the weekends I can not do anything both days–if I do anything on Saturday I usually have to rest for the day on Sunday–I hate that because it is starting to get warm. I guess I should be happy since this time last year I was in the hospital for the first of three relaspes. Good luck with your treatment.
MJ
MJ

I remember when my neurologist first put be back on IVIg he told me it might take 10 months to make sure it’s working. I was in shock, both my husband and I sat there with dumb looks on our face contemplating how it could possibly take that long to be sure it was helping. It didn’t take quite that long for me to be sure the IVIg was working – like maybe 4-6 months to be sure – but it finally became obvious when I started having more good days. Before the IVIg I’d have a good day about every 4 months, last week I had three good days in a row. That being said, yes, I still have days where I feel pretty poorly – things are numb, I’ve got foot drop again, my face droops etc. then the next day I’m better (lets not say ‘normal’ yet). Now that I’m almost at his 10 month mark I can totally see where he was coming from… it’s now obvious the IVIg is helping at least my peripheral nerves, I have all my reflexes back (or at least I did last month) and I’m starting to get some strength back in my legs. I can now walk to the barn and back twice a day without having to stop halfway, or fall halfway. However, we don’t have the dosage or timing down yet and it seems that some months I get meningitis from the IVIg. The most immediate thing I noticed with the IVIg was the little burst of energy I got on the third day, it took a couple of months before that translated into actually being able to do more but I’m slowly getting there – its just taking a lot longer than I would have thought. I suspect you are right, that you might not notice the energy part until you get off the prednisone, but you may be able to tell a difference in other ways before that. I wish I could share my IVIg with you – my pharmacy is a little bit nutty and they tend to send me more than I need per session. Right now I’ve got enough in my fridge to last me through the next four sessions. I call them before every session and tell them not to send anymore but sometimes they do anyway but forget little things like benedryl…

As for the bad days, it might help to think about other things that might be going on at the time not directly related to CIDP. Recently the amount of pollen in the air has had me all twisted up – I’m not that allergic but the sheer quantity makes me sneeze which sets off cramping and spasms – it gets stuck in my eyes which don’t make tears so they get irritated – nothing directly related to CIDP, just added annoyances that make the CIDP symptoms a little worse. The very very bright days have made my eyes hurt more trying to constrict the pupils which makes all those muscles work harder, which makes the nerve fire more, etc. etc. None of these have anything to do with a CIDP attack but in combination they can make it seem like I’m having another attack by calling on muscles and nerves that have been lying there quietly trying to heal and making them work harder than they have worked in recent times. A nap or a good nights sleep will usually hit the reset button and I wake up feeling back to the usual.

I’m so sorry you have to pay that much for the IVIg, I hope you start seeing some obvious results soon so you can feel a little better about your financial investment.

Take care,

Julie

Glad to hear that the ivg is working for you. After 4 months, it was determined that my condition was worsening, so off of ivig and onto 70 mgs of prednisone a day. After about 6 weeks, no improvement and maybe a bit worse, so now up to 100 mgs of prednisone a day. Condition getting worse – hard to walk without a cane now. Stairs seem to take an eternity to go up. Legs seem to be getting weaker despite the neurologist recommended P/T.
Next appointment with the neurologist is this Friday and maybe next step will be PE – we’ll see.
Anyway, sounds like you are making good progress – hopefully you will get all your former strength back.

I was just thinking about this and cannot figure out how to articulate this, but I will give it a try. Please jump in and tell me if it is a stupid idea. Here goes!
So doctors say ivig takes months to work in some, well if it only lasts 42 days in the best conditions, it must mean that: ivig given continuously continues to stop additional demylienation provided it is religiously given. If the demylienation is stopped, it takes months to feel better from the ivig because it takes months to start healing. So in essence, the ivig is not healing your body or making you feel stronger, it is stopping further demylienation and either putting out the inflamation (those who seem to have that sort of varient) and allowing the nerves to get the message to the muscles, or if there is actually nerve dmage, it is stopping the demylination, allowing the nerves to repair and then allowing the muscles to get the message. This varient would obviously take longer to see the affects, because more than an inflamatory process has taken place. So based on the damage amount and the varient and the duration of the damage it can be very different as to how long it takes to see a difference. The difference is in the healing of the damage, and the ivig just allows the healing to take place. So maybe when it seems like there is a lapse in its benefits(ivig) it is just because the healing has to take place now.

OK, so is this a realistic thought? Can anyone help me to figure out the mistakes? I think I just have to stop obsessing about cidp, ivig and just let Kevin get ivig monthly and forget about it. It just gets so hard when I see him wake up in the morning in pain from play the night before and I cannot answer his questions why it hurts and how much longer is this going to go on.
Dawn Kevies mom

For me it took about 6-8 months for the IvIG to “kick in” and I remember at the time thinking that the stuff wasn’t working at all. But when I started walking better and not falling down, I knew it was really helping. Now, I can almost walk like a normal person, though not as far. I still have a problem with stairs. Overall, I don’t regret the IvIG at all and I hate to think where I would be without it. My insurance runs out at the end of this month so I am getting my last bag of the good stuff on the 30th of April. We’ll see how I do after that wears off.

TX BILL!
PLEASE MAKE SURE YOU GET COBRA if you can afford it until you get other insurance. Are you switching jobs? A company with a group plan has to take you, but purchasing an individual plan is another story, they do not have to take you. Can your wife get a job at ups or walmart, or anywhere where there is group insurance if you are not able to work? You are only able to get insurance without being denied if you bridge between loss of insurance with cobra. If you are applying for medicaid ssi or whatever, can you afford cobra in the interim so that you can maintain your progress with ivig? Call up gammaguard, they have a program called gamma assist, maybe you could get them to bend the rules regarding keeping record of past ivig use. Have you been in the service? Good luck!
Dawn Kevies mom

[QUOTE=TXBill]For me it took about 6-8 months for the IvIG to “kick in” and I remember at the time thinking that the stuff wasn’t working at all. But when I started walking better and not falling down, I knew it was really helping. Now, I can almost walk like a normal person, though not as far. I still have a problem with stairs. Overall, I don’t regret the IvIG at all and I hate to think where I would be without it. My insurance runs out at the end of this month so I am getting my last bag of the good stuff on the 30th of April. We’ll see how I do after that wears off.[/QUOTE]

Hi TXBill!

I just read your post about your insurance wearing out. What will you do? I too live in Texas and often wonder what our options are when the insurance runs out. I’ll keep you in my prayers.

Many Blessings,
Kristen
[url]www.cidpandme.blogspot.com[/url]

Its been almost 4 years since I received IVIG…. with first treatment I could feel a difference in 3 days….. When I started receiving treatments every 6 weeks I could TRULY feel a difference the next day.. I was then put on every 3 weeks and stayed in good shape until the next treatement…. I lost my insurance and the Dr. and I decided to see How long, or if I could go without treatment…… Haven’t had one since…. I received treatment for about 3 years. I was on predizone for first five months…. took myself off and am SO GLAD I DID! – Hang in there – I am free of treatments…. Always pray for strength