Just had IVIG

Hi – I had a first time series of 5 days IVIG 2g/Kg after being diagnosed w/CIDP. About 2 weeks afterward I could actually feel the wind on my skin and other sensations I hadn’t felt for many years. I wish I had IVIG when first diagnosed. I don’t know if there is a ‘normal’ but anything that results in ‘some what better’ is probably a good indicator. Cheers

You’ll here this again and again – everyone one is unique. Some people get fantastic results after one treatment; others have problems with the treatment itself and others need to be on the medication for awhile before full benefits are felt. I would say this, echoing the previous poster, any positive result is good, especially motor improvement. Having said that, beware if your husband begins to show overall negative change. That happened to me, and I finally quit after 6 months of IVig and continual slow progression of the disease. Prednisone and other immunosuppresants may be an option if IVig doesn’t work.

Good luck to you both.

Sharon

when first dianosis my Neuroligist told me she hoped to at least stop any futher damage with IVIg and not go down futher. Now I know what she was thinking. She was trying to be very cautious.For months each time I felt hororable I assmued IVIg was failing. After 14 months I now feel at least lousy but consistant. Now I begin seeing improvements each time and hope some day to feel pretty good. I read many post of people who have difficulty with the treatment. I have been blessed and no side effects and feel better after and now look forward to my time of relaxing for six hours as I let the benidrel work. My biggest issue with all of this was being grumpy and short of patience with my family when I didn’t feel well. It’s an issue to monitor. Good luck as you progress.

I agree, any progress is good.

My right arm was totally paralyzed from the shoulder, all the way down to fingertips (flaccid paralysis, had to wear a splint all time, etc.) when I started IVIG (7 years ago). It took a good 6 months to get back movement and function, but I eventually did!

My IVIG is always every 4 weeks — we have been unable to wean or spread out the interval due to my symptoms.

The next 5 years I would say I stayed pretty stable. The past 2 years even with monthly IVIG for 2 days in a row, I have been declining.

So, yes, ANY progress is good progress 🙂

edited to clarify

Yes, any progress is good.

It took me 4 months of once a week IVIG treatments before I saw any improvement. In the first 4 months I actually got worse. Since then it has been very gradual improvement.

For me things went bad in this order: motor nerves, sensory nerves, autonomic nerves and got better in the same order. It took much longer for my sensory nerves to start healing than my motor nerves and they are typically the first to go when I have a relapse. It’s more difficult to judge the autonomic part but I can usually tell via digestion and blood pressure. I should also note that my cranial nerves seem more reactive than the other ones as well – if I get sick and have a relapse they will be the first to start drooping and getting numb… then my arms and legs. My face was also the last thing to get numb in my initial toe to head progression and the last to get better. Its possible that sensory and motor nerves respond differently to IVIg, I remember reading somewhere years ago something about that but I did a search just now and can’t find the reference… possibly because I haven’t had any coffee and it’s 3:15 am. 😮

In any case it does take awhile for nerves to regrow. Initially I did not respond to IVIg and continued to go downhill for 5 days. My neuro at the time told my husband that it takes five days for IVIg to start working and if I didn’t show any signs of improvement after that they would have to put me on a breathing tube etc. Like clockwork on the evening of the 5th day I could move my left eyebrow and breathe better. After that the neuro continued IVIg for another 4 days and I continued improving until I could manage without constant nursing care and left the hospital. That neuro and all of my other ones have always emphasized that first you have to stop the attack and the inflammation, then the nerves will start to regrow… slowly.

You also have to provide your body with the right environment to regrow nerves. You need to eat good food, take lots of rests and naps, and avoid stress and plenty of fluids. Simple… right? :rolleyes:

It’s good that he is getting better motor wise, but keep an eye on the rest of the stuff – it may be that he needs a little bit more IVIg, or more often to improve more. I’ve been in that situation like your husband many times – motor nerves are improving, sensory nerves are not, or motor and sensory are improving and autonomic is going downhill. It’s a process to get your treatment optimal, as you can see from all these fine folks on here who are still working out their own. We’ve been tinkering with my Ig dose since about the second month I got sick back in 2005, at least once or twice a year we change the dose, the rate, the method of delivery and so on in our attempt to find the perfect match for me. We’re almost there. 😀

[QUOTE=Ottawa help]Thank you for this insight .,We will monitor the situation closely and hope that it improves for us. Did other treatments help you out after the IVIG was not working?

Kathy[/QUOTE]

I have tried prednisone and am now on cellcept; so far no improvement. In May I go to Northwestern to be evaluated for stem cell transplant therapy. I have the slow progressive form of the disease, which seems unusually difficult to treat. One of our regular posters, Alice from San francisco, had this done and is doing very well. Check Success Stories.

Sharon

Hi,
My husband has been on monthly (now q 3 weeks) IVIG since 2007. He has primarily motor symptoms and has an atophied and weak right arm, and foot drop. He had an immediate response with his motor symptoms improving, but I would say it is just in the last 6 months that he has commented that his hand feels so much stronger. In the beginning, he couldn’t use eating utensils or turn a key. He has occasional sensory symptoms with numbness and tingling and restless legs, but he tends to ignore those as it was the atrophy of the arm that devastated him and he is so grateful for IVIG. His arm looks like a shrunken polio victim’s arm so we know that without IVIG he would be in bad shape by now. Good luck. It all takes time. Hubby took early retirement due to his CIDP as he was an airline pilot and could no longer safely use the instruments in the cockpit–so we are lucky to have his pension.
Laurel

Hi Laurel:

First post on this forum. I’m an airline pilot also (59 years old) who was diagnosed with CIDP because I could no longer stand on my toes and my FAA doc wondered if I could press on the brakes any more (brakes are on top of the rudder pedals for other readers). Nerve conduction, spinal tap, etc resulted in diagnosis. Now on disability. IVIG every three weeks with only minimal improvement but no worsening. Now going on Cellcept in addition to IVIG.

Anyway, this is an extremely rare condition and now two airline pilots with it. Any more lurking out there? Always looking for some common thread… did your husband fly fighters in the military?

Also, for Anastasia, if you read this, how are the side effects from Cellcept for you? I get a feeling like low blood sugar and a little light headedness at times during the day. The first night after IVIG and full dose of Cellcept, I could barely get up to bed I was so tired.

This is not fun but at least my symptoms are very tolerable so far….. just walk like an old man with flippers on. I’m thankful for the no worsening part.. but of course, would like a full recovery.

Ron

Hi Ron,
Hubby was in the military and flew mostly C130’s out of Trenton (I met him when he was flying DC3’s in Winnipeg). He speculates that the radiation somehow impacted on him. He says to mention to you that he didn’t really have good effect from the IVIG until they increased the frequency from monthly to every 3 weeks and he was given 1 G per kilo of his weight. And it is important that you start with the loading dose of 2 G. per kilo of weight. He made one try of going Imuran and wound up in hospital with sepsis (life threatening). Neurologist wanted him on Cellcept but he dug in his heels and refused. In essence, he was afraid after the Imuran incident. For many years he has had minor diverticulitis and for people with some of these underlying infections, immunosuppressants can really trigger things like sepsis. Hubby is 62 yrs. old now and retired from Air Canada (but really was a Canadian Airlines pilot for most of his civilian career). I assume you are in the States as you mention FAA?
Best regards,
Laurel

Rdball, I have been on 2000 mgs of cellcept for around two weeks…started at 1000. I am also still on prednisone and I have noticed an increase in fatigue and lack of focus/motivation since the introduction of cellcept. In the absence of prednisone, I suspect I would be far more fatigued/focusless.

For Ottawa help: I still am able to hold down a full time job….also have long and short term disability to fall back on through my employer. So I am not struggling right now with financial issues.

I deal with the anxiety of a progressively worsening disease by pinning my hopes on stem cell therapy. I believe this is my best hope for killing the “bad guys” chewing up my myelin. Nothing else has worked and if stem cell therapy doesn’t help, I don’t know how I will deal with it. I frankly don’t picture my future in a wheelchair.

Also, if you are a person of faith, you can do what I do: get really, really mad at God for allowing you to have this ****sandwich called CIDP. Have a temper tantrum if you feel like it. I figure his shoulders are big enough to deal with it.
Sharon

Hi Laurel:
Yes, I’m in the DC area. Lucky to have Johns Hopkins here as they have a pretty good nuerology department specializing in this.

Pretty sure the flying days are over which is ok with me.

Sharon:

Thanks for the advice and info about your reaction to Cellcept and the stem cell info. Hopefully, the light-headedness will fade away as I think I’m on this for awhile.

How long do you think you’ll be on cellcept before you decide it is or isn’t working? I’m a full month at 2000 mg a day now with no change in status.

Cheers

Ron

[QUOTE=Ottawa help]Hi Laurel,

Since youu are in Canada can you tell us how hard it was to get provincial medical coverage for IVIG treatent? We had to go to NY for the initial diagnosis and first round of IVIG as no doctor here (Ontario) could see us for over 3 months.
My husband is scheduled to consult a rheumatologist in 3 weeks to set up more IVIG- Any hints to make it go smoothly?

Thanks ,
Kathy[/QUOTE]
Hi Kathy, I just sent you two long private messages.
Laurel

[QUOTE=rdball]Hi Laurel:
Yes, I’m in the DC area. Lucky to have Johns Hopkins here as they have a pretty good nuerology department specializing in this.

Pretty sure the flying days are over which is ok with me.

Ron, my husband says he doesn’t miss the flying either. He started out in the military at age 19 so he had enough by the time he got sick. I’ve heard only good things about Johns Hopkins. Our diagnostic services are rather iffy i.e. long waits and limited specialists in the field and second opinions are rarely sought and not encouraged.
Laurel

Hello fellow canadian!! I am in BC. Have been battling cidp since 2001. I am also a single mum of 4. I am on a cpp disability pension. Your husband may want to look into this. I was off work for a few years but was able t go back part time 4 yrs aqo.
I have been having ivig since jan 2002. I was in a wheel chair for 2 1/2 yrs. recently I have had to stop ivig due to worsening side effects. My symptoms are coming back rapidly. Be patient the ivig can work but it may take time. It is sad to say but you almost get use to the uncertainty. You learn your limitations.

best wishes

Laurel:

Ok this is weird. My wife has MS in addition to me having CIDP. Sometimes we think we should move out of this house or something.

Her MS is relatively tolerable and she lives a fairly normal life and I also live OK and am productive. She was a flight attendant so, like myself, was in the air a lot. Maybe your husband’s radiation idea isn’t so far fetched.

Cheers

Ron

rdball, I too have been on cellcept for about a month. Saw my neuro today. No improvement. It normally takes 3-6 months before you can expect results, but neuro doesn’t think it will work for me. I am mainly doing this to fulfill the requirements for stem cell therapy (have to fail Ivig, pred and another immunosuppresant — in this case for me cellcept). I noticed after posting a few days ago even more fatigue and crankiness and decrease in focus. Eyes feel dry and look tired. I attribute this to 1. the disease at work; 2. lowering of dosage of pred from 60 mgs to 40mgs and 3. introduction of cellcept. I am aware that I am losing my edge at work and that makes me feel anxious and a little depressed. My neuro and I agree that I need to work as long and as much as I can — without overdoing it (fine line there) — to avoid the risk of overidentifying with my disease. He has prescribed wellbutrin to deal with the anxiety depression. Sigh…one more drug to add to the mix.

I have family in the DC area and have been thinking of making a visit to Johns Hopkins…there is a dr. Ahmet Hoke there who is doing research on nerve regeneration with, I believe, mouse models. I understand that he has made some breakthroughs. I suspect that before too long human studies will show success. This is great news for all of us who have sustained axonal damage.

Keep me posted. You are welcome to send a pm.

Sharon

Hello Ottowa help,

I have had trouble since the the late 1970’s. I didn’t get a diagnosis until 2009. Since 1998 I have had repeated periods of big regression and small recovery followed by every worsening motor weakness. A 5 day IVIG treatment in late 2008 followed by 5 months of 2 days a month IVIG was stopped as ineffective.

However, I have maintained my strength fairly well since 2008. In addition, IVIG was re-started under different Drs’ supervision. IVIG therapy continues weekly following twice weekly for three months. This plan will go on for one full year, although the infusion frequency will decrease.

I’ve been to at least 43 doctors and to three different major teaching medical centers. And, no, they don’t all agree on a diagnosis….

No matter what, don’t give up. Have fun every waking moment. Do what ever you (your husband) can do and quit comparing to what you can no longer do. By the way, I receive my IVIG infusion at the local cancer center. You can get a good outlook on life there.

Financially I was lucky. I never did return to work. I paid for long term disability insurance at my former workplace. Now I receive SocSec disability.