IVIG Help

Diane,

The IVIG doesn’t necessarily make you feel better, it is helping stop the attack on your nerves and myelin. Usually right after an infusion I am whooped for a day or so and then I get a lift for a few days. Give it time to work, each of us are so very different and also react differently.

Jerimy

Dianne,
Sorry I don’t remember your sig of Nails from the last forum. I went to your profile, but there is not much info there. Just what is your current condition? What do you mean by wanting IVIG to make you feel better? If you are talking about pain, IVIG will not do much for that. If you are talking about the ability to walk, use your hands, or other motor functions, IVIG will help with that, if you have the right kind of CIDP. How long have you had CIDP?

There are two kinds of CIDP, the relapsing/remitting & the progressive. For the first type, IVIG usually works fairly well. But for those of us with the progressive type, IVIG may not work at all. I think if I remember right, only about 60% of people with CIDP have good results with IVIG. But fortunately there are many different treatment options out there now. But I would need to know more about your invidual case. Please post more specific details.
Pam

I have found that 3 times a week every 2 weeks of 40 grams each has helped a bunch with pain and ability this past year. I felt sick from my infusions for 10 months but can tell I’ve improved. It’s been slow going.

Is your neuro well versed in treating CIDP? Are you his first patient?
My neuro hasn’t told me what type I have.

Keeping a detailed journal of IVIG brand, doses, how you feel doing and after treatments really helps chart your progress.Talking/sharing with others is so important-we need the contact-the support.

I’m new at this but this site seems very helpful. My husband has CIDP with diabetes and other health problems. We don’t much about this diease. He was talking the IVIG but it is so expensive 30,000 for each week taking it. My question is how can people afford this kind of meds. His sugar is uncontrolled and says he feels bad so much he don’t get out of bed much. I hope I can get some help finding out what this stuff is, does diabetes cause CIDP?

Susie

Dear Susie!

When I visited a neurologist for the first time to find out more about the mysterious and severe pain in my feet, he at once told me I had Polyneuropathy, and said that a possible reason for this could be diabetes. I did not have that, nor any of the other usual causes of Polyneuropahy, like alchoholism or B-12 vitamin deficiency. That’s when they moved on to try and find another cause, and what they came up with next was CIDP.

In fact, it turned out that CIDP was not the correct diagnose either, but that is a long an irrelevant story here.

I don’t really know much about it, but is your husband’s CIDP mostly painful or does he lose the ability to move his muscles, like they are more or less paralyzed? Because I think that if his symptoms of CIDP is mostly pain, it could be a connection between this and his diabetes.

Good luck to you both!
🙂

[QUOTE=susie]I’m new at this but this site seems very helpful. My husband has CIDP with diabetes and other health problems. We don’t much about this diease. He was talking the IVIG but it is so expensive 30,000 for each week taking it. My question is how can people afford this kind of meds. His sugar is uncontrolled and says he feels bad so much he don’t get out of bed much. I hope I can get some help finding out what this stuff is, does diabetes cause CIDP?

Susie[/QUOTE]

Hi Susie,

I need to address this issue regarding IVIG. My husband also had Diabetes and he had to have his IVIG without a sugar base to it. IVIG with a sugar base which alot of them are, can shut down a diabetic’s kidneys in short time flat. So if your hubby gets IVIG again, tell the Dr no sugar or sucrose based IVIGS. Also is he taking Prenisone? If so that will make his sugar go off the charts at times.
My husband had his IVIG paid for in full by his insurance company through Verizon. There are others who know of programs where you can get his meds for free or a low cost if you qualify for them. The programs are through the pharmaceutical companies.

If he has Diabetic Neuropathy and chronic pain, he can still take Neurontin for that.

How was he diagnosed? Did he have a spinal tap? If the protein numbers are over 45 that is indicative of GBS. How was he diagnosed with CIDP, my husband went on to have that, he had severe axonal damage to his nerves.

Wishing him the best:)

Hello, thanks for replying, it sure is nice to talk with someone who has experienced the same problems, most people don’t know anything about this sickness. Keith’s problem is chronic pain, he has muscle weakness but not parylsis. OOPS! He was dignosed with a spinal tap and a nerve conduction test. He is not on predisone, because of his sugar. He has alot of health problems, such as liver problems, problems going to urinate, digestive problems. Sometimes he gets to talking out of his head, does that go with this diease. I don’t know what to expect out of this diease, his sugars run in the 300’s all the time. He’s on 100 units of insulin twice a day and a sugar pill a day. He states he is depressed about his condition. We have 3 kids and he is only 39 years old. Can you give me any suggesstions on what I’m looking at. Is this usual health problems with this diease.

Susie,

Since no one really knows what causes CIDP, diabetes might have caused it. Most likely, though, it did not. However, diabetes does cause its own set of neuropathies, known collectively as diabetic neuropathy (clever name, what?)

Not all of Keith’s problems are necessarily related to CIDP. It would be unusual (although not unheard of) for it to affect urination or digestion. The liver problems are not likely to be from it either. It can have psychological effects, from the stress of having a chronic, debilitating disease, but the “talking out of his head” sounds more like a brain issue. CIDP, by definition, does not affect the brain or spinal cord.

I am not a medical doctor, but it seems like most of Keith’s problems are from his uncontrolled diabetes. I hope you manage to get it under control, and soon. I trust you and Keith manage his diet strictly, and medicate appropriately. While I don’t have diabetes, I am told that the timing of the medicines is very important. Make sure that you are following the schedule strictly.

That said, the symptoms he has, whether from CIDP, diabetic neuropathy, or both together, are real. Don’t let medical staff tell you otherwise. If the CIDP is causing the muscle weakness, IVIg is a reasonable treatment. However, if the weakness does not improve, and it is clearly from the CIDP, Keith can try plasmapheresis or some immunosuppressants. Neither of these are great choices for someone in generally poor health, but sometimes, you just have to try something.

Seek treatment for his chronic pain. There are several studies that show that untreated pain only makes one sicker. Also seek treatment for depression, both talk therapy and medicine. Again, studies show that depression only makes one sicker.

As to how to pay for it, I take it you don’t have insurance or that it is inadequate. I don’t have any experience here, so I will defer to Jerimy and others.

I pray that you and Keith will find healing.

Mark

Good to be back and read the posts again. Had a problem getting in, so I just reregistered. Thought I would let you know that the Auditor for the State of Ohio was diagnosed with GBS and I wrote a letter to the Columbus Dispatch tellling my story of dealing with CIDP for 22 years. Received a call from the local Public Broadcasting Station and that want to do an indepth interview with me. They are coming to my home on Wednesday. Maybe from this we people affected by GBS and CIDP can have our story told and those who dont know what we are dealing with can learn somethiing.

Ron:)

Dear Friend,

I’ve had 106 plasma pheresis treatments over the past three years. I’m finally to the point where I do not need this treatment to survive CIDP. I’ve also had I.V.I.G. for six months at a time. I found that the plasma pheresis treatments made me feel better over all. The I.V.I.G. gave me tremendous migraines. We are also having a shortage of I.V.I.G. in California.

I also found exercising at a gym built my strength back up. I was very weak, but now I can even climb stairs again. Keep working hard at taking care of yourself. Hope you start feeling better soon.

Keep the faith!

Hi Susie,

I can be of some assistance to you with help on paying for IVIG and meds. I was caught without insurance when I came down with this and didn’t yet have medicare or medicade. Anyways I will give you this site to start [URL=”http://www.needymeds.com/”]http://www.needymeds.com/[/URL], it has link and resources for getting help paying for the meds and in many cases getting them free of charge. For example I was able to get my Neurontin from Pfizer for free through their Connection to Care program, saving me thousands, every one of my meds was covered under a program, each Pharma company has one of some sort. My email is [EMAIL=”jerimyschilz@hotmail.com”]jerimyschilz@hotmail.com[/EMAIL] , feel free to email me if you need any help or can’t find a specific program for a medicine that he is taking and I will be happy to help.

Take care.

Jerimy

PS-I am 36 and had/have many of the other issues he is having too as far as depression etc, please tell him for me that things will get better. Hopefully we can get the medicine issue taken care of so that it is one less thing to worry about.

HI Ron,

Good for you with your letter and upcoming interview. On what day was your letter in the Dispatch? I’m from Columbus and my sister still lives there. I’d love to see your letter.
Peace,
Pat

Way to go Ron ! Since I live in Va. it is not likely Ill get to see the interview. But, who knows, maybe it will be on nationally sometime. let us know if you can.
Mary Ann