Protein levels in IVIG

General General CIDP Discussion
1

Hi

I have been told that IVIG is a protein. and when it is injected into the vein, additional pressure on the blood vessels can result and because of that the volume is enough to cause them to expand. Too much fluid in the veins can create problems especially if the IVIG is administered too fast. I have also been told to be sure and hydrate myself before, during and after infusion. I am looking for documentation that discusses the effect of infusion of ivig on the blood vessels in the body. I know that the kidneys are affected. But I am looking for what the protein's effect is. Anyone read or know where I can find this information.? Thanks Ethel

2



DazedandConfused said:

Hi Dazed and confused I asked these questions because I want to know all I can about my disease. There is no place to go and get definite information. The information that you receive depends on the person answering your questions and their education or training in the disease. What neurological problems are strictly CIDP? What words best described how you feel with CIDP? Different people with different explanations of what CIDP is doing to them. How do you described loss of quality of life caused by CIDP? Loss of movement?

I have read many articles about CIDP and the information is not consistent. In my opinion, I questioned if the information provided is true. I believe that if you go to different sources, ask questions, you stand a better chance of understanding what you are fighting.

How many get IVIG only, or IVIG and Cell Cept, or plasmapheris or stem cell procedure? What are the results of the different treatments? How long does it take to see improvement? Is there improvement? What are the side effects of the other medications? There are no answers out there to guide one in the right direction. It is a trial and error method of treating CIDP

I read all these discussions from patients who are bewildered by the treatment and information they receive .And I see over and over that the IVIG wears off before the next infusion. Information about the needed amount of IVIG is based on a few trials that were performed years ago and the doctors have not listened to their patients that the amount is inadequate to stop the progression of the disease. When asked, the answer given is that "that amount is the prescribed dose /kg." Add another pill. Maybe that will work. To me the body uses the IVIG for other problems and at times more IVIG is needed. IVIG WORKS and works within a short period of time for me. Not months like some of the medications that have been described to me.

I tried something (it was a slight change in the amount) and I saw improvement and I thought it worked for me, but was denied the possibility of using that method because it was not the prescribed treatment.

3

That was good advice from DazedandConfused but I think you might still be "confused" if not a little "dazed" by IVIg.

The problem you have is that peripheral neuropathy has a large number of variants. Even "CIDP" is a reasonably generic title for variants. If you add to that the complication that a number of people with the same "CIDP" might also have other and different complications, then you have a problem.

What does the patient expect to happen with a certain dose? I can give you a part answer only. How do you feel? Have things got worse or better? That is very difficult to tell as change is gradual. If you then add to that the problem that we are all just that little bit different you get how complex the problem can be. If you doc is on the ball they will listen to what you say and adjust accordingly but I suspect you need to be quite positive about what you think is happening to you. One way to better define what is happening and to describe it is to keep a daily diary for a few months (at least). Get used to writing down what is happening, things you can do, can't do, etc. Compare with what you used to be able to do.

More information about peripheral neuropathy? In general forget Google. BUT not entirely as there you can learn search terms to look for. The real source is Google Scholar. Just Google "Google Scholar" for the site. You will find it most frustrating as much of the material is in pay for view sites, but don't let that stop you - just keep looking and learning how to change search terms.

Good luck!

Ethel said:



DazedandConfused said:

Hi Dazed and confused I asked these questions because I want to know all I can about my disease. There is no place to go and get definite information. The information that you receive depends on the person answering your questions and their education or training in the disease. What neurological problems are strictly CIDP? What words best described how you feel with CIDP? Different people with different explanations of what CIDP is doing to them. How do you described loss of quality of life caused by CIDP? Loss of movement?

I have read many articles about CIDP and the information is not consistent. In my opinion, I questioned if the information provided is true. I believe that if you go to different sources, ask questions, you stand a better chance of understanding what you are fighting.

How many get IVIG only, or IVIG and Cell Cept, or plasmapheris or stem cell procedure? What are the results of the different treatments? How long does it take to see improvement? Is there improvement? What are the side effects of the other medications? There are no answers out there to guide one in the right direction. It is a trial and error method of treating CIDP

I read all these discussions from patients who are bewildered by the treatment and information they receive .And I see over and over that the IVIG wears off before the next infusion. Information about the needed amount of IVIG is based on a few trials that were performed years ago and the doctors have not listened to their patients that the amount is inadequate to stop the progression of the disease. When asked, the answer given is that "that amount is the prescribed dose /kg." Add another pill. Maybe that will work. To me the body uses the IVIG for other problems and at times more IVIG is needed. IVIG WORKS and works within a short period of time for me. Not months like some of the medications that have been described to me.

I tried something (it was a slight change in the amount) and I saw improvement and I thought it worked for me, but was denied the possibility of using that method because it was not the prescribed treatment.

4

Just a comment. I felt I wanted to get 2 treatments of IVIG every 3 weeks but my Neurologist said its to hard on the body.

5

I started with 3 grams per kilogram in August, 20 hours over 2 days. The nurses control the amount infused. I start at 55 and end up at 212, I think. The pressure and stiffness that I felt in my joints along with the headaches were too much to take after a couple of months. Doc cut it to 1 gram per kilogram but still infused at a gradual rate. They are constantly checking BP. The Doc says that the treatments can affect the kidneys negatively but to date I have not had any side effects but the stiffness in my joints and the feeling of being bloated. He too wants me to hydrate as much as possible.

Unlike others, I have not noticed any immediate improvement. Over all I seem to be getting better. Most of my motor skills are back to an acceptable level but the sensory nerves have yet to respond much. This was predicted by my Doc. I too have looked for info on the net and ask what to expect but very little is know and so much is individualized.

6

My neuro at Mayo told me that the risks of ivig at this point outweigh the benefits. I used it for 3 months in the hospital and at home, tapering off in the last 6 weeks. This was when I first became ill, in 2006.

7

That is most interesting. I presume you were given some very specific indication of the risks and why the IVIg contributed to those risks and how that might compare to the risks of different or no treatment.

The usual situation, and I presume this applies to most people where IVIg is used to treat peripheral neuropathy, is that IVIg is by far the safest alternative with the least possibility of complications (nasty side effects or adverse events).

It is important to remember that peripheral neuropathy (CIDP being in that generic group) has many forms and that not every case responds to IVIg, but most do and in most of those cases it is the safest generally recognised treatment.

Larry F said:

My neuro at Mayo told me that the risks of ivig at this point outweigh the benefits. I used it for 3 months in the hospital and at home, tapering off in the last 6 weeks. This was when I first became ill, in 2006.

8

I had all the procedures done that are required to prove that you have cidp . I have been on IV I G for about seven years I don’t remember the exact date. I have had no major problems with it until a couple months ago when I developed sores and a rash which I was told was not because of the ivig (but A cause was not found nor was a cure) in these years of treatment the numbness has slowly. progressed from my feet up my legs to my Knees. There are days when I feel better and then there are days when I don’t feel as well and it all depends on the IV I G I believe That a slightly larger amount of ivig would help me I have been told I can go on cellcept a pill that maybe will work in a month or 2 or 4 or six months . There is no proven results that it will work. It is a very expensive pill. I have researched every medication that has been suggested. I’ve been
Told that plasmapheresis and stem cell is not available or recommended for me. too dangerous for my healthThe side effects and the final results that could occur are too dangerous for me to experiment with. I know what the ivig does for me. I get 20 mg on Wednesday and I feel good until the next Monday when my condition deteriorates. Then i get my ivig on Wednesday and I start another good period I believe the cidp is affecting more parts of my body than my hands and legs But because what I need and want to try is not the recommended dose I do not get it I know what my body needs and i am tired of slowly becoming an invalid

9

A little background. The first diagnosis was GB, and I started on plasmapheresis. Based on some of the results, the docs changed direction and went with IVIG. At the time, they weren't calling my condition CIDP, although that name started to seep into our discussions more and more. The IVIG produced very good results, and I was sent on my way to a different hospital for physical therapy. After a few days, relapse, then back to the first hospital and continued IVIG. I got better, went to physical therapy, but had another relapse. Back again to the first hospital, and they were worried. Back to the IVIG. The docs referred me to the Mayo Clinic. There, they officially called it CIDP and recommended IVIG and prednisone. The IVIG doses were nearly doubled in size and frequency. I made very fast progress.

When I got home, I could walk with a walker, but was shaky. After a week, I didn't need the walker. I was still getting the IVIGs, which were done with a visiting nurse. These were tapered over 6 weeks. The Prednisone was being tapered for 6 months, I believe. While I regained strength, my pain worsened.

After a few years, I went back to Mayo, asking if IVIG would help. After tests, the doc said IVIG was not indicated, and that the risks outweighed the benefits.

Now, one would think that I would respond by saying, "what are the risks?" But he was a fast talker and acted like our time was done, and we're walking to the door. I'm a professor and am used to asking questions and thinking on my feet when I teach and give conference talks. Not to brag, but before this damned problem, I could be a dazzling speaker and wow the audience, even while ad-libbing. And the laughs. Boy, I get misty recalling the glory days at the peak of my powers. But I am diminishing. Leaving the house is a challenge, as I am exposed to all kinds of pain-increasing stimuli. Pain is front page news in my daily life. It's mainly what I think about and work around. I used to be funny, but my wife says not so much anymore. I am speaking less and I walk from point A to point B so many feet later. There, I stand at the table, kitchen counter, bathroom sink, or sit on the bed until I build up the courage to walk to point C, then D, etc.

With the difficulty I have communicating, it takes me hours or days to process what was discuss and how I should respond. So, I am ashamed to say that I don't know why the Mayo doc believed that there was a risk associated with IVIG. I haven't been able to figure it out online, either. That's because it hurts to do anything time-consuming and systematic. What happens is that I sit at the computer and do stuff, then pause from the pain. I feel that any stimulus at all, including looking things up in my files, books, or on the internet, hurts.

Boy, talk about over-sharing. Just a little bit of hell, here. I'm so sorry to unburden like this.

10

No burden at all - we are here to share and advise if possible.

A few points. Prednisone will have a result but as one neuro said to me - it is just temporary. Go off it and you soon go backwards. I am not at all certain that they advocate Prednisone together with IVIg these days.

IVIg has a "half life". And it needs to be built up. Typically you get the recommended dose/Kg every day for 5 days and then you get a maintenance dose (in my case about every 4 weeks) from then on because that "half life" is typically about that 4 weeks and the aim is to keep the level up in your system where it can do its job (if not fixing, at least stopping things going down hill).

I really advise you to get back to that neuro for a clarification and perhaps also look for a second opinion. Absolutely trust me on this - not all neuros are as well advised as others. Remember - we are dealing with something reasonably rare and not all manage to keep up with the latest.

As for the pain - I can relate! I am currently in a self imposed stand-down for a few days as I really over extended in the past few weeks. Part of my problem is bad knees - so the knee problem makes the CIDP problem worse (or perhaps it is the other way around????). Whatever - Bottom line is that I can keep going but it smarts! And that is because I really pushed the limits. The lesson is that pushing the limits might hurt - but it is temporary if you get a chance to rest after.

So - push on and don't worry about venting here - we totally understand!

11


There we are again, The recommended dose . The recommended dose that does not control but only prolongs the advance of the discomfort, nerve damage and and pain. How many medications are out there where you only get a reduced dose?

I fought this same battle for years. My sons were hemophiliacs. I grew up with a brother who had hemophilia. The only treatment then was whole blood and then plasma that was administered when he had lost enough blood. When my sons were diagnosed with hemophilia they received the same treatment , they had to bleed enough ..the pain was excruating. I listened to them scream and cry for days and they started to have damaged joints from the blood in their joints. I finally realized if I could get them earlier treatment, they would not have the pain and the bleeding would stop. I could not find doctor who would agree to give them plasma early so I lied and told them that they had bled the number of days that was standard procedure. I kept on telling the doctors that earlier treatment was needed to protect them from damaged joints that would make them crippled , keep them being productive individuals. My lying paid off. Their lifeimproved except for the bleeding episodes. And fifteen years later, the proscribed treatment became what I had recommend all those years before. Get a bleed , treat it that day. The cost of their treatment as an aside became a lot less. There were no prolonged stays in the hospital. They injected themselves.

There are many side effects to using IVIG. There are many hidden dangers in medicatons that the public is unaware of. All the hazards of blood transfusion were known to me and as they got older to them. They took better care of themselves. They did die early but not from a bleeding episode but from HIV contaminated blood. So I know the hazards of using IVIG.

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Proteins increase the viscosity of the blood making it slightly harder for the heart to pump the thicker blood, thus increasing the blood pressure temporarily. The hydration helps keep the blood thinner thus helping to minimize side effects like headache while at the same time helping the kidney filter and re-filter the serum (blood- the cells.