IVIG Questions regarding complications
 

Here' my situation: My husband's new neurologist (I went to him because I came across his website stating he specialized in neuropathy) prescribed IVIG. EMG/NCS findings were consistent with severe demyelinating sensory motor neuropathy as seen in CIDP. Necessary blood work was done and neuro prescribed the IVIG. He said the serious risks of stroke, renal failure, and aseptic meningitis were so low, and not to be concerned. IVIG has been just been approved to be done at home. My husband (77 years young, controlled high blood pressure, has Alzheimer's [middle stage],.) And I am now aware that a clinical trial, phase III is underway using IVIG for Alzheimer's)to be completed early 2011. So the IVIG may help the CIDP and or the Alzheimer's. So now there is a ray of sunshine in a realm of darkeness. Because of the deadly possible side affects we go back to our new regular neuro (this our third visit to her) for her advice on the side affects of IVIG. I could feel she was angry that we had the neuopathy testing done elsewhere and she said she wanted further tests - lumbar puncture and nerve biopsy - that could give her a better indication, before she would discuss CIDP and IVIG. I told her that unless the tests would give a conclusive answer I felt they were too invasive. So that visit was a waste of our time. And she just lost a patient. Not because we disagreed but because she was curt, rushed, and unwilling to explain and DISCUSS my concerns. So tomorrow we are going to a third neuro, and I directed the receptionist to inform the neuro that we are coming for his opinion on the safety of IVIG as it pertains to my husband and his medical condition. So I hope that goes well.
So thats my story. I am wondering if the IVIG would be better done in an outpatient hospital setting for the first few times? It was prescribed at home due to the neuro having priviledges at a hospital which is 1 hour 20 minutes away. Neuro says he felt home with the nurse was same as outpatient hospital. And I was wondering if anyone had or knows of anyone that had stroke, renal failure, or aseptic meningitis, from IVIG?
I want my husband to be pain free from his neuropathy, but I don't want to kill him. One minute I am so happy that I could cry with joy, that he could be helped and I am all ready to move forward with the IVIG, and the next minute I am crying with fear and despair because I am scared of doing something that might harm or kill him. I know I have to make a decision soon but I'm really, really scared. thanks for reading and any advice.

I have had IVIG both in home and at an infusion center. Either is fine. At the infusion center, they draw blood everytime, so I feel better monitored. I believe I have had aseptic meningitis from it, but it manifests as a very, very bad headache. In general, I don't have them very often. My kidneys are monitored monthly. During infusion, blood pressure is taken frequently. IVIG dumps a lot of protein into the system. The kidneys have to clear it. If kidney function is impaired prior to IVIG, then there is a higher risk of complications.

I am 57, and have to fight to get IVIG. I have had neuropathy since my mid 40's. I have autoimmune disease. I still have a 16 year old at home. I give thanks every day that I am privileged enough to get IVIG. Yet, I do have to fight to get it paid for. It costs roughly $8000 per infusion.

They are offering you a very expensive option, one that most people have to fight very hard to get.

I have had no major issues with IVIG, but each infusion is different because one gets antibodies from up to 10,000 people. I would hardly characterize IVIG as having 'deadly' side effects.

I am not sure what going to additional neurologists will gain you. No one can predict what the reaction to any treatment will be. IVIG is very, very hard to get. Most insurance companies fight you tooth and nail. Doctors have to substantiate why they are ordering it for you. Even then, many people get denied by insurance.

Unfortunately, there is little certainty in life, and no one can promise anything is risk free, however, IVIG, is certainly one of the safer options, and usually well tolerated. The big drawback is expense.

I would think your husband has more to gain than lose from IVIG.

I am also not sure if your husband will be PAIN FREE from IVIG. It may hold or potentially reverse the neuropathy, if indeed it is inflammatory. They must establish that it is inflammatory, and that is why they test.

I have been told that the lumbar puncture and nerve biopsy were just an indication and not always conclusive. That even if the results of these tests were negative, he could still have CIDP. So why do the tests if his insurance doesn't require them in order for him to be authorized to have IVIG therapy?

Thanks for taking the time and responding. The first time I event heard of the word CIDP and IVIG was fourteen days ago. I feel that six years ago when the neuropathy first manifested itself is when more should have been done. We were told that it was a neuropathy and quite often a cause is never found, live with it. So now six years later, when it is chronic, I am upset with myself that we did not have a second and third opinion over these years. I'm wondering why the possibility of GBS/CIDP had never been mentioned. . So this is why I want to be really, really, informed; this is why I sound so distrustful of any one doctor's opinion. Also, I have been told, that doctors often receive a "kick back" when prescribing medications. I don't know this doctor, have only met with him twice and don't want to be cynical, and yet I don't want to be naive.
Fortunately, obtaining IVIG treatment, without having to battle with the insurance company, hasn't been an issue here. So that is something I am being spared. NO ONE, should ever have to fight, for a drug that could help and I'm sorry you had to deal with that. Access to good health care and medicines should not be for some but should be for all.
Anyway, we are going to a third neuro this afternoon for his opinion. It makes me feel better. I appreciate you mentioning that you may have had aseptic meningitis (so sorry that happened to you.) This is something that, from what I have read, can be caused by a fast transfusion rate? And it makes sense that, when someone's brain is already in a weakened condition, the last thing they need is aseptic meningitis, because it could very possibly, cause a more rapid decline to one who is already on that path. And that would be something we do not want to happen. So, now I feel that infusion should be given at a slower rate, in order to take no chances. And this is something I will discuss today during the visit.
Because of prior misdiagnosis, non- diagnosis, and doctors who have made serious mistakes, concerning other issues in regards to the both of us, etc. I just have to gain all the knowledge I can in order to feel comfortable in making any medical decisions.

Thanks again, for your reply.

I can't say for sure, but, to substantiate continued IVIG, you may need baseline and then tests to show it helps. The other issue is they may want to find out what else is going on with your husband. Since he is 77, some of these tests may be hard on him. I don't know how healthy he is.

I can't say why they want those tests. I did have a lumbar puncture, and a skin biopsy for nerve density, not a sural nerve biopsy, tho, because my neuropathy was suspected to be small fiber. Sural nerve biopsy IS quite invasive, and in fact, is not done much anymore. What kind of biopsy are they talking about, skin biopsy for nerve fiber density, or actually taking a piece of nerve from the sural nerve?? Sural nerve biopsies are falling out of favor, because they do damage the nerve...so, yes, question that.

IVIG is a not a very threatening treatment. IVIG is a blood product. It is antibodies from many people, pooled, and subjected to a 'wash' to make it as safe as possible. I hate to say it is rationed, but, let's just say, it is hard for the docs to make a case to give it and they have to be on the ball to get you to keep it. IVIG, does carry a very minute risk of bloodborne infection.

If I were to go on let's say, Rituxan, then I would be more nervous. That has the capacity to really seriously depress the immune system for months if not years. It can activate the JC virus in very rare cases, and cause PML, a fatal brain condition.

Everything has its downside, but IVIG has the potential to help the Alzheimers for your husband. I don't know how advanced that is, but, gosh, if it would help, that would give him a better quality of life.

Given he has Alzheimers, I would give the IVIG a shot. It isn't approved for that, and the CIDP may in a way, be a blessing, if he can get IVIG...and it helps the Alzheimers, or both.

If you read the side effects of many meds it is scary.

I have had IVIG at home and at the infusion center. I currently have to travel an hour one way to get it, since they won't let me have it at home anymore. My husband has to lose a day of work a month to take me in to the city. He uses vacation time since he saves his sick time for retirement insurance...his job does that. However, he loses 12 vacation days per year for my medical care, and that is tough on him. He will be 60 this year.

Since your husband would likely get a loading dose, which is usually 4 to 5 infusions over a period of time...usually daily to every other day, until the loading doses are given, that is the most likely time he could be sick. Loading doses are not fun. I did get a bad headache and threw up. Once I had a low glomerular filtration rate, but it has been normal lately.

The loading dosees, you may want done in an infusion center if you are nervous about it. Then again, your husband could have to endure the ride home, sick. That is why they opt to give it in home for some people.

Make sure that they infuse slowly, take his BP, pulse and temp during the infusion, and adjust the IV accordingly. Most nurses are knowledgeable about IVIG...(some aren't). Ask the home care provider for a nurse who has given it before. Infusion centers are very experienced with IVIG...so are home infusion services (in general, but always ask.)

As far as getting IVIG for Alzheimers, I am wondering if insurance will cover it despite a positive clinical study? The demand would be so high and IVIG is in limited supply. It makes sense to me since Alzheimer's care is so expensive in the long run, but insurance companies don't usually care about that, because they don't pay for long term care, patients generally do. Most of them exhaust all their assets doing that. You may be lucky on this one, and get the benefit of IVIG for the Alzheimers.

If your husband starts to have any reactions, they will stop the infusion.

Most people that get IVIG, don't have any problems with it.

Oh if a home care nurse does it...make sure the IVIG is room temperature. During one loading dose, they ran it in cold....that made me puke...all over my couch. I felt miserable and got a horrible headache then.

That was my only real bad reaction and I think most of it was do to infusing cold stuff, too fast.

BTW, I do think there has been preliminary evidence that IVIG mitigated Alzheimers.

I would say my headache was migraine like. They can give an IV infusion for hydration and opiates to help the headache. Of course, it does mean a trip to the ER.

I do get really bad headaches occassionally and end up in the ER, but, I assume it was the infusion due to the onset during infusion and the immediate nausea.

This meningitis is not infectious but inflammatory. I imagine it could be a problem, but mine did pass.

Most docs avoid prescribing IVIG because it is usually such a fight to get it....no kickbacks. Most docs look for ways to get you off of IVIG...if there is any other option they try that.

There is absolutely no motivation other than patient care to precribe it. Now if it was one of the antidepressants or antipsychotic, well, then I would say be skeptical about kickbacks.

Oh, one more thing, they premedicate some people, usually with benadryl and tylenol. I can't use benadryl, so I just do Tylenol. Some people require hydrocortisone.

I am sitting here right now with immensely large nodes, (unshelled walnut size in my neck) which I have not ever had before...wondering if it is due to my last infusion several weeks ago, or due to not being suppressed, or what. Of course, I have a bad case of Sjogren's and other issues, so who knows??? One more thing to add to my alphabet soup of conditions. One side went down over night, but the other side is still big. Ugh. I look like a chipmunk.

Also, it is really HARD to catch neuropathy in its early stages. One doesn't know what is wrong with one. It isn't like it comes on all at once for most people....we grow into it and it seems normal until it gets bad.

Back from the doctor. Feeling confused. My husband and I went back to his neurologist we had seen for several years but not in the last year. He said:
(not in this particular order)

regarding the test results and the findings of the new nuro
1. not enough blood work had been done to decide if it is CIDP

2. he was not going to request a lumbar puncture

3. was not happy that my husband's feet were not warmed prior to the nerve conduction test. - gives a more accurate reading.

4. Even if my husband did have CIDP he would never reccommend IVIG at this stage. He said, yes he has painful neuropathy, that he would like to relieve with medications, and he want him to start on cymbaltan.

5. He said my husband's legs are very, very, strong, except that his left foot is about 20% weak. If that causes him to trip, that we can try a brace or some type of support (forgot his exact words)

6. He said that when he prescribes IVIG, he only does it (for instance when some one's legs are so weak that they can't walk)

7. He said IVIG is a very serious medication that he would not prescibe for my husband's situation.

8. He said that it has serious risks and he is aware of two people that had renal failure and died.

9. He said that I should be aware that when a doctor prescribes IVIG they recieive between $1000 to $1500 depending upon the manufacturer, from the manufacturer for each and every infusion.

10. When I mentioned that if it didn't help the CIDP that it just might help Alzheimer's. After looking at the paper work I supplied about the trial, he said: Phase II of this trial showed improvement which consisted of 16 people, Phase III consists of several hundred people and until those results come out showing that hundreds of people showed cognitive improvement he would never recommend it for Alzheimers's. I told him by the time the trial completed and the FDA approves it for Alzheimer's it could be too late for my husband to benefit from it.

11. He said he hopes that is not the case, but he still does not recommend IVIG for my husband. He kept saying that it's not an aspirin, and it carries risks.

So we left with a prescription for Cymbalta and an order to have some additional blood work done. I know this doctor is on the conservative side, and is on the neurology board at a world renowned hospital and teaches there one day a week at the university's medical school. So now I have two opposing opinions, one neuro saying very little risk the possible benefits totally out weight the very small risk, and the other neuro saying don't do it. I am so emotionally exhausted from this whole situation. I really can't think clearly at the moment, so I'm not going to think about it tonight. I am wondering if you know anything about cymbalta? I looked it up and it seems to an anti depressant? I wonder if it is similar to effexor, because my husband took that last year and after the fifth day he had to stop because it really, really confused him and totally affected his memory terribly. I probably should post this question about cymbalta on the nuropathy board to get feedback. Anyway thanks for listening and by the way at what stage were you prescribed IVIG, when you had neropathy pain only or when you had much muscle weakness too? thanks for your response.

What a trial for you! Sometimes waiting a week or so to let the information settle helps with making a decision like this.

I have no experience with IVIG, but I can comment on Cymbalta.
This drug is very similar to Effexor for pain. It also carries some risk to the liver, so tests should be done periodically while people use it, and alcohol is absolutely contraindicated for it.

The bottom line in any decision like this is :
benefit vs risk.

You might investigate supplements to try and determine if something is missing in your husband's diet and life that is contributing to the neuropathy.
B12 levels? (often become very low in the elderly)
Vit D levels? also critical and when low more pain is the result

Other things that may help are:
acetyl carnitine (for toxin or drug induced PN)
r-lipoic acid
CoQ-10

There is a supplement now for aging and neuro deterioration due to failure of mitochondria in the cells (these are the energy cells). The product is a combo of carnitine/lipoic acid
and their website has some good info on it.
http://juvenon.com/index.html?campai...FQUMDQod3Skt3Q

If you decide not to do the IVIG or even if you do, while you are debating you can read Dr. Ames' site, which is very interesting and helpful.
You don't have to buy his product, and you can choose your own sources for the nutrients. (Juvenon can be more expensive).

Many people feel better on a supplement which can help restore some lost functions. So do consider something along this line. Most doctors will not offer anything beyond the standard RX drug therapies, which today don't do much.

Joanne such is the state of diagnosis today for PN for many patients. There is a lot of trial and error and educated guessing. Im surprised the doctor wouldnt want to do a lumbar puncture to help maybe nail down or eliminate possible causes. It can show presence of markers for autoimmune antibodies, lyme, meningitus, bacterial infections, white cells, and more. I had it done and it really is not as big of a deal or as arduous as it is made out to be. A nerve biopsy on the other hand is invasive and usually leaves permanent numbness and or pain in the area cut.

A third opinion might not be a bad idea either. sometimes you have to get a few, research yourself and then decide. When my wife broke her leg and it wouldnt heal after 2 years, she had to go to many different orthopedists and get opinions on what to do which often contradicted each other. They ranged from continuing to wait to heal, to external fixators, to plates, to rods to amputation. Medicine to a large degree is still an art rather than just a science.

Joanne,

I think it is a matter if IVIG is the right choice for your husband. It sounds like the neurologist who knows him best feels it is not. Your husband is 77 and I guess you have to decide what you feel is reasonable to subject him to.

IVIG is reserved for people who have no other options to remain functional and stay alive. Age likely does affect the doctor's decsion. It is somewhat 'rationed' for cases that will receive the most benefit. The younger you are the better the chances of getting it. The more motivated you are, the better the chances of getting it. The more inflammatory markers you have, the better your case is substantiated, the more likely you are to get it. There are no formal panels like there are for transplants, but it seems the medical/insurance system, kind of 'self limits' IVIG.

IVIG is not likely to be given for Alzheimers. Keep in mind that IVIG costs minimally, $96,000 per year, not counting loading dose. This is at the cost of roughly $8,000 per month x 12. Loading doses add an additional $32-40,000.

The insurance industry or medicare would be bankrupted if it paid this. There seems to be some kind of unspoken agreement of when it is used and paid for.

I do understand the issues with Alzheimers, both my grandmother and mother had it. I am high risk for it. That is not why I get IVIG. I get it because I have an extremely high ANA (antinuclear antibody titer) and a diagnosis of autoimmune disease. I have antibodies that are essentially eating away at various organs, among them the nervous system. I don't expect to keep it my entire life. I suspect at some point they will tell me I don't meet their criteria and the disease will run its course. My system is so compromised that the doctors are very reluctant to put me on the chemo like drugs to suppress my system for fear of me going downhill from side effects. Prednisone would zap my bones and I am still fairly young. That said, they may still add small amounts to supplement IVIG. I wish I didn't need this, and I wish there were other options.


My neuro, like your neuro, is extremely reluctant to prescribe IVIG, and does so only when there are no other options.

It is akin to a transplant in some ways....not every one who could benefit from one, gets one. It it one of those treatments that once started, when does it end? It is a 'heroic' effort to stop inflammation. I would consider it as serious as chemo. IVIG is a last resort. It isn't given for idiopathic neuropathy.

You are right. It is serious stuff. It is basically a blood transfusion every month, more or less. With all the concern that a blood transfusion brings.

Yes, one can get renal failure, that is why they do kidney function tests monthy. The older one is, the more likely it is that this will happen. It is a huge amount of protein.

Most neuropathy is slow moving....often small fiber. Your husband could get a SKIN biopsy for small fiber, but, in general, they simply give Cymbalta or Lyrica to help the pain.

Cymbalta is an antidepressant, but a different one than Effexor. Cymbalta is duloxetine which resembles Prozac (fluoxetine) and Effexor is venlaxafine? MrsD knows more about this. She is very knowledgeable about drugs. True some people can't take these drugs, me among them, but, I am not typical.

Lots of people do fine on these drugs and their neuropathy progresses slowly if at all.

IVIG is not used for pain. It is used to try to salvage function and even life.

If you don't get IVIG, it will still be fine. There are other medications to control pain of neuropathy.

From what your doctor says, it sounds like the neuropathy is not likely to affect his function or lifespan according to the doctor that knows him best.

I wish you and your husband all the best.

Both Effexor and Cymbalta are combo antidepressants.

They work on two neurotransmitters...norepi and serotonin.

They are called SNRI's not SSRI's.

The only difference I can see in pharmacology between the two is that Cymbalta can cause liver damage. Cymbalta is being heavily promoted by Lilly, hence all the doctors respond to the diabetic nerve studies that are presented to them. But the same doctors do not really understand or compare the drug to Effexor.

If someone does not do well on Effexor, they will most likely not do well on Cymbalta, and in addition are placing their liver at risk.

Some dementia symptoms in the elderly can be due to low B12.
http://www.aging-parents-and-elder-c...eficiency.html

A blood test of 400-500 minimum should be done. Anything lower than these numbers should be treated. Some doctors call 200-300 normal, still in this country with our antiquated lab ranges. So make sure any testing done, the results are actually given to you. Another test which shows if B12 is not working in the body is called an MMA test.
I have an informational B12 thread on this forum at the top of the page. This supplement is pennies a day when done carefully, and can have life changing results if the patient is low.

Joanne the criteria for prescribing IVIG used to be easy to find?
 

Not so easily found now tho.
Things that make the case tho are as follows in terms of test results:
Whole slew of blood work - basic metabolic, full antibody blood workup, specialized autoimmune work ups, sometimes even cancer and other workups. Before I was diagnosed? I had about 15 vials taken prior to a preliminary diagnosis, with a recommendation of a spinal work-up for specific immune 'markers' and also blood work for anti-body action/reactions to some components in IVIG. So, at a date about 5 weeks after the first bunch of vials? Got a spinal work-up done in the neuro's office and then toted the vial to a near hospital for even MORE blood work [about 8? I think] which was sent off to area labs and the Mayo Clinic for testing.
Other tests that contribute to diagnosis are the trail of EMGs and NCV's [nerve tests -one with the probes the other with the topical sensors]; MRI and Cat scans w/&w/o contrasts to rule out skeletal issues such as spinal nerve compressions or who knows what else?
So, essentially Blood work for dietary deficiencies such as Calcium or B-12 or excesses such as B-6, nerve tests, X-rays, MRI's, cat scans, and spinal fluid tests. Leave it to your doctors to coordinate the tests, explanations and all w/the insurance companies....Always tho TRY and get copies of the tests being done? Just so YOU know what's being done. Depending on the conditions and diagnoses? There is a 30-60% chance it can help. - All everyone has said so far is right? - I'll post more later as you'll have even more questions! Take care in the meantime? Hugs to your husband too! - j