Immuno Globulin IV

[perrier]

Has anyone used Immuno Globulin IVs to modulate the immune system? Would you recommend this? Thanks. Helene

 

[ukxmrv]

It wasn't of any help to me Helene. About 5-10 years ago I had 2 different sets of IVIG.

My ME is of the "acute onset viral type" and I was hoping that the IVIG would help with the viral symptoms.

 

[perrier]

Thanks for recounting your experience. A doctor is trying to convince me to do a series of these to modulate the Immune system. This is an old medication. And so I wondered if folks here might have tried it. It's also 1000$ a crack!

I'd be happy to hear from others who tried this too. Thanks.

 

[mellster]

Helene, might as well start with something new but cheap such as LDN, seems to be fairly effective and is roughly $40 per month.

 

[perrier]

Mellster, forgive my absolute illiteracy! What is LDN? I am new around here. )))

But I would like to know if Immuno Globulin has worked for some folks, or if the consensus is that it doesn't help in CFIDS. I did note in the thread about Dr. Peterson which Cort started, there was a link to Corinne's blog, and I think she said that she received Immuno Globulin mixed with some other meds. from Dr. Peterson

Thus, I am interested in this.

 

[mellster]

Helene, it's low dose naltrexone - see here:
http://forums.phoenixrising.me/showthread.php?379-Low-dose-Naltrexone&highlight=low+dose+natlrexone

 

[Legolas]

It definitely works for some people. KDM sometimes uses it, but not very often (and only for specific reasons). The price is a bummer.
I don't know how long the effect lasts...

 

[Hope123]

One thought would be have you had your immunoglobulin levels checked? There are blood tests for this and if you are abnormally low, some insurance companies will cover the cost. IVIG for some immunoglobulin deficiencies is standard treatment and if that is the only problem, works reasonably well.

There was at least one study on IVIG and general CFS, the details I don't remember, but the results were not positive. IVIG for CFS following acute documented parvovirus B19 infection is very successful in a few cases.

Also ask this doctor about risks. IVIG is made from the blood donations of hundreds of people per batch (unlike units of whole blood, each unit coming from one person usually) so it carries the risk of blood-borne diseases like other things made from blood.

Also, is this doc getting any kickbacks for giving you IVIG beyond the cost of his services? One of my biggest pet peeves are people making claims about CFS treatments without much evidence and charging patients exorbitantly for them.

 

[Vanguard]

Helene, I'm most likely starting it in the next couple of weeks. I'm not expecting a cure, but I figure if my insurance will pay for it why not try it? It has been documented to cure the parvovirus CFS in three cases so I guess for a small lucky percentage it can be the miracle.

 

[Ninni]

Hi Helene,
I recieved IV-immunoglobulins for one year, every third week. I have progressive severe ME. Even though it did not offer any cure in my case, it definitely halted down the disease progression. The year I recieved the immunoglobulins was the only year that my illness did not get worse. 3 months after stopping the IV my illness started worsening again.
I would recommend having a VERY slow infusion rate, to avoid bad side effects. The side effects usually lasted 1-2 days after the infusion.
Hope it works for you, if you decide to try it!

 

[dsdmom]

I've been getting ivig for a little over a year now - once every 4 weeks. I agree with Ninni - slow infusion rate is key. I've had to go much much slower than many other people but it works for me. the first time I had it, it was 5 days in a row and now it's only once amonth. the day after I sleep a lot and then it takes a couple days to feel more 'normal' but it's worth it in my case. It certainly has in no way cured me but it has helped with some symptoms and enough so that I think it's worht the few down days a month. Do you know how much you will be receiving? I receive 500mg/kg, which in my case works out to 25g. That's still a pretty small dose.

 

[snowathlete]

Anyone had this for parvovirus?
Seems about the only treatment for it, though equilibrant supposedly works on it too. The multiple donors for IVIG worries me quite a bit.

 

[Ema]

Anyone had this for parvovirus?
Seems about the only treatment for it, though equilibrant supposedly works on it too. The multiple donors for IVIG worries me quite a bit.

I'm doing SCIG, Hizentra, for all my viral and bacterial infections due to immunoglobulin subclass deficiency.

 

[ramakentesh]

If CFS is autoimmune then it should and possibly would help.

 

[Zach00]

I do not recommend IVIG unless you have a neuromuscular disorder or have tested positive for neurological antibodies and even then i would be reluctant to advise doing it. There can be some real bad side effects inlcluding aseptic meningitis which i have had several times from IVIG. You don;t want this!

You also run the risk of picking up weird infections that may be very difficult to treat or more so very difficult to diagnose which would mean you are not gong to get help for it. Plasma protein is also capable of transmitting all sorts of diseases, infections, viruses, ect.

Docs will tell you the IVIG is filtered and donors are screened but that does not mean it is true. These are the same folks that hand Cipro or Effexor and tell you there are no side effects. It is not worth the risk.

Any benefit you get will likely be temporary and subside after the IVIG leaves your system. You will put yourself at such great risk all for something that is generally not lasting. Unless you have Myasthenia Gravis, LEMS, Guilain Barres and other serious autoimmune disorders i would not do it.

There is no proof it will help chronic fatigue type symptoms. You need to figure out where your chronic fatigue is coming from, not mask it with IVIG. IVIG can also re-moddulate your immune system to attack you, which would basically be giving you an autoimmune.

Could allow opportunistic infections or viruses in your body to reactivate. The list goes on and on. I usually don't post here, but when i saw you were considering this i felt inclined to give you some perspective.

This is just my opinion but i think you should now what you are getting into. Docs don't always disclose all the risks, and more so they don't understand the risks cause they have not done it.

 

[Valentijn]

There is no proof it will help chronic fatigue type symptoms. You need to figure out where your chronic fatigue is coming from, not mask it with IVIG.

It's ME/SEID, not "chronic fatigue". We don't have chronic fatigue. We have neurological and immune dysfunction, with a lot of muscular involvement.

If you're going to come here just to fear-monger, at least try to pretend to understand the disease we have.

 

[heapsreal]

Yes we already have opportunistic infections and viruses reactivate in many of us which is one reason why ivig is used.

not sure i understand how ivig can treat infections but also allow infections to reactivate. Alot of contradiction.

 

[Zach00]

It's ME/SEID, not "chronic fatigue". We don't have chronic fatigue. We have neurological and immune dysfunction, with a lot of muscular involvement.

If you're going to come here just to fear-monger, at least try to pretend to understand the disease we have.

Not coming here to fear monger, i am simply giving people here something to consider before doing IVIG. There are some serious side effects. I am not saying it doesn't help some people, but it shouldn't taken lightly and i personally don't think it should be used for ME. If you suspect you have a true neuromusuclar junction disorder or have a very serious autoimmune you should try to get to a neurologist who can run tests for paraneoplastic and neurological antibodies. I would want to verify there is an actual antibody that is attacking or interfering with the way your muscles or nerves work before doing IVIG. I say this because of the risk. Its also better to know what you are treating than to just take IVIG in hopes that it makes you feel better... too risky for that.

Yes we already have opportunistic infections and viruses reactivate in many of us which is one reason why ivig is used.

not sure i understand how ivig can treat infections but also allow infections to reactivate. Alot of contradiction.

IVIG doesn't treat infections directly. It can "theoretically" aid in fighting an infection indirectly by modulating your immune system, but anytime you modulate your immune system you can also cause things that were previously being suppressed to reactivate. Its not necessarily a good "modulation". It depends on how your body reacts. Again, not trying to discourage anyone here if they believe it will truly help, but i felt inclined to give my perspective and inform on "some" of the risks so people don't get worse or cause problems they never had.

 

[SOC]

I say this because of the risk. Its also better to know what you are treating than to just take IVIG in hopes that it makes you feel better... too risky for that.

Do you know of anyone who actually gets IVIG "in the hopes that it makes you feel better"? It's extremely expensive and fairly tightly controlled. It's not like you can just ask for it and get it. Insurance companies don't pay for it unless you meet very strict criteria. People get IVIG because a responsible doctor (and it often needs more than one to sign off on the request) believes that the patient needs it due to immune dysfunction or other serious condition. They don't hand it out just because people want to try it in the hope it might make them feel better.

I think you are fear-mongering.

 

[Zach00]

Do you know of anyone who actually gets IVIG "in the hopes that it makes you feel better"? It's extremely expensive and fairly tightly controlled. It's not like you can just ask for it and get it. Insurance companies don't pay for it unless you meet very strict criteria. People get IVIG because a responsible doctor (and it often needs more than one to sign off on the request) believes that the patient needs it due to immune dysfunction or other serious condition. They don't hand it out just because people want to try it in the hope it might make them feel better.

I think you are fear-mongering.

This is exactly my point. That is what I am saying.... It's only used for a certain set of conditions, mainly neuromuscular diseases and for people with immune deficiencies. It's not used for ME and it's quite risky so unless you have a condition it is used for, I would not be looking to do it, especially when considering the risk and side effects.
I have done IVIG many times for an autoimmune neuromuscular condition so I do have experience with it. It's not side effect free and it can make you worse. I am genuinely trying to help and give another perspective so people don't rush into it.