LMayberry,

Give this a try. Grifols is the parent company for Gamunex. They have an assistance program. Call (888) 694-2686 M-F 8a/8p EST

Worth a try.

Bryan

Finished up the IVIg treatment today. The slower infusion rate definitely made a difference in terms of how I felt after each session.

The faster rate I dealt with in early April, which was 2.5-3 hours, left me feeling drained and exhausted.

With the 4-4.5 hour sessions, I felt perfectly fine at the end of the treatment.

Now I’m hoping that I see some great results in terms of my symptoms by the end of next week : )

Thanks Jim for the link.

Jim,

I learn something every time you post. Thanks.

As far as exertion goes. This month is the “busier” season where I work. I went in at 3am and left at 2:30 pm this afternoon.

My IVIG treatment from April 2-7 finally started to kick in last week. If lifted the horrible feeling of fatigue and I regain a lot of stamina, but numbness and a bit of motor control issue still remain (hoping next week’s treatments work on these areas).

But after almost 12 hours on my feet, the numbness in my hands, calf muscles, and feet have been dial up to an 8. Walking and gripping right now are horrible. Over doing it is a bad thing. The problem is balancing that with the need for money and insurance ; )

I’ll probably hit the hay by 6:30 tonight and hope a good night’s sleep fixes things. Since the IVIG’s effects have kicked in, I do seem to recover quicker during the last week and a half.

Now that my new doctor is going to give me a maintenance dose of IVIG every 4-5 weeks, it will be interesting see how the disease and recovery now progress.

I can tell you that going without IVIG for 3 months definitely made me feel run down, fatigued, and of course the numbness and motor control issues came back with a vengeance.

Hi Buckeye55

I received my first IVIG treatment in early January when I was in rather sad shape. It helped immensely and I thought I was on my way to “full recovery”. My Dr at the time said prednisone would keep the CIDP at bay and no further IVIG were needed unless I had a drastic flair up.

By late February I thought I was starting to feel rundown, but he insisted I was fine.

By late March, I was extremely fatigued and started to have extreme weakness from the knees on down and had to pull out the cane again.

Finally he sent me for another round of IVIG from April 2-7.

It did lift the fatigue and rundown feeling and returned some strength, but….

I haven’t returned to my early February peak.

From the knees on down, I still feel semi numb and my feet hurt after a few hours at work. And I definitely have some minor motor control issues with walking. My knees feel weak and my right foot likes to catch in things causing me to stumble.

Additionally, my arms are semi numb from the elbows through my fingers and my dexterity in my hands is like 20% off.

I found a new doctor in the meantime. He is having me go through another 5 day round of IVIG next week and then a maintenance round every 5 weeks thereafter.

He said I had regressed pretty far when I had my IVIg treatment in April, but he seemed confident that next week’s round and subsequent maintenance treatments should bring me back to 90% of my former self.

I hope so. While I appreciate the increased strength and energy, the numbness and motor control issues make work an 8 hour ordeal.

Good luck and I’d be on the phone with your insurance demanding to know why your health suffers because of a clerical mistake.

Prednisone is a pretty much accepted first line treatment for CIPD.

The problem I had is that it has failed twice for me and the side effects are mounting. My original doctor ignored its failures and the side effects, including high blood sugar and swollen ankles and feet

The new neurologist had me tested for blood sugar, bone density and acknowledge prednisone doesn’t seem to be suppressing my immune system as it should.

So over the next several months he wants to taper down the doses.

I think I respond well to IVIg and look forward to seeing if 4-6 week treatments are the answer.

All I know is that this last relapse set me back and I don’t want to repeat that cycle again

As to results from last week’s infusions, today it feels like it finally kicked in! My legs feel a bit stronger and work is only semi-killing me :). So good 7 days to feel the effects….

Sandra

As Tom pointed out, CIDP affects each of us differently. It really depends upon how long you had it before it was caught and if it ate into the nerve proper.

First, are you being treated with anything to suppress your immune system? For instance I’ve been on prednisone since December. There are other medicines as well. If you aren’t, you need to have a conversation with your Dr.

In January I lost the ability to walk. IVIg was a miracle and I returned to near 75% of my former self by the end of that month.

Unfornately, about two weeks ago I felt myself regressing.

As I type, I’m getting an IVIg infusion. (I started on Monday and will finish Friday).

I already feel stronger. So give it a chance as it depends on your starting point.

I’m also seeking a second opinion this Tuesday. I do not think the prednisone is suppressing the immune system and its side effects are mounting, including painfully swollen feet and increased blood sugar.

Also, I concur with Tom on a number of things. Recovery from CIDP is not linear. It is like a rollercoaster. Ups and downs and progress as a result seems slow.

Also, if you exert yourself too much, I find I pay for it for days. Pace yourself. I know it is hard to do.

I wish you the best of luck and feel free to ask any questions and please update us on your results.

Here is the order for myself:

1) Numbness in the fingertips (both hands but right hand worse) and then numbness in my left foot (right foot has zero problems).

2) Problems walking up stairs and getting up from chair, bed etc

3) Loss of strength in my hands (again right hand much worse than left)

Funny how CIDP presents itself.

Numbness in my fingertips is distributed evenly in both hands.

But in my legs, my right calf hurts more and is weaker than my left. And, only my right ankle is weak. I have no such weakness in my left ankle.

And yup, I’m taking the stairs one at time again up and down.