Low Immunoglobulins In Cfs

[juliegee]

Hello All-

We've recently chatted about the fact that some of us have low immunoglobulins. I found this old study published in the American Medical Journal that does link hypoglobulinemia with chronic fatigue syndrome. HOWEVER, those treated with IVIG or replacement of the immunogobulins did NOT experience an improvement in symptoms

I know IVIG has been used to treat other conditions that also lead to autonomic dysfunction, such as small fiber neuropathy, etc. I'm not sure of the success rates in those cases.

In my case, my IgG is quite low, specifically IgG1 BUT I do make appropriate antibodies so I am considered an anomaly that "must be watched." LOL Sometimes I'm amazed my blood isn't green .

Volume 89, Issue 5, Pages 554-560 (November 1990)

A controlled trial of intravenous immunoglobulin G in chronic fatigue syndrome☆

Phillip K. Peterson, M.D.a, Judy Shepard, Pharm.D.d, Mark Macres, M.S.d, Carlos Schenck, M.D.b, John Crosson, M.D.c, David Rechtman, M.D.e, Nicole Lurie, M.D., M.S.P.H.a

Received 9 April 1990; accepted 22 June 1990.

Abstract

purpose: Currently, there is no established therapy for chronic fatigue syndrome (CFS), a recently defined illness that has been associated with a variety of immunologic abnormalities. Based on the hypothesis that a chronic viral infection or an immunoregulatory defect is involved in the pathogenesis of CFS, the therapeutic benefit of intravenous immunoglobulin G (IV IgG) was evaluated in a group of patients with CFS. Additionally, serum immunoglobulin concentrations and peripheral blood lymphocyte subset numbers were measured at the outset of the study, and the effect of IV IgG therapy on IgG subclass levels was determined.

patients and methods: Thirty patients with CFS were enrolled in a double-blind, placebo-controlled trial of IV IgG. The treatment regimen consisted of IV IgG (1 g/kg) or intravenous placebo (1% albumin solution) administered every 30 days for 6 months. Participants completed a self-assessment form prior to each of the six treatments, which was used to measure severity of symptoms, functional status, and health perceptions. Patients were also asked to report adverse experiences defined as worsening of symptoms occurring within 48 hours of each treatment.

results: Twenty-eight patients completed the trial. At baseline, all 28 patients complained of moderate to severe fatigue, and measures of social functioning and health perceptions showed marked impairment. Low levels of IgG1 were found in 12 (42.9%), and 18 (64.3%) had low levels of IgG3. At the end of the study, no significant therapeutic benefit could be detected in terms of symptom amelioration or improvement in functional status, despite restoration of IgG1 levels to a normal range. Major adverse experiences were observed in 20% of both the IV IgG and placebo groups.

conclusion: The results of this study indicate that IV IgG is unlikely to be of clinical benefit in CFS. In addition to the ongoing need for placebo-controlled trials of candidate therapies for CFS, an expanded research effort is needed to define the etiology and pathogenesis of this disorder.

[arizona girl]

Hi, Julie,

I would hate for others here to rule out a treatment that could very well help them, based on this post! I don't know how good a study that is 20 years old and only done on 30 patients is! Also it was only looking at patients who had low sub igg levels, not Total Quantitative. From what I understand there are newer trials being done with CFS patients and ivig, and not necessairly just those with low igg. IVIG products have come a long way in 20 years and are much better quality products now then they were then. They also know how to treat side effects better too! Also these were chronic fatigue patients classifed that way 20 years ago and you know the way they look at CFS now has greatly evolved since then.

So does this mean your Quantitative immunoglobulins are normal? If they are normal and you only are low in the sub igg panel, the use of IVIG is not standard treatment yet for that presentation of it. I know how scared you are to consider this a treatment for you, are you looking for reasons to not have to try it should your doctor tell you to consider it, as he has suggested before?

Truly I don't know yet if my IVIG treatments are going to make a difference yet, but I will be honest about how it turns out which ever way it goes. Also for me IVIG is not an end all for my symptoms, I still will need to treat any associated companion illnesses as per their protochol. You still can get infections even with IVIG. IVIG will just help me with frequency and fighting things off better. I will still need diflucan for yeast and antibiotics for infection, and what ever they decide is best to treat the autoimmunity.

There are a lot of illnesses that now, that they are finding IVIG is useful for, but many are still at the research stage with a big to be determined question mark on them. My cardio said that treating of all these immune type illnesses is comparitively still in it's infancy. We have so much to still learn.

We must not rule out a potentintially useful therapy based on one small 20 year old study. As always treatment decsions are between each of us and our doctors.

Julie, I hope that you continue to make progress with your doctor and your treatment choices. If I could wave my magic wand I would make all of use better. Getting better is what we all hope for, I think!

[sue1234]

I want a magic wand!!! But, I'll settle for a doctor who wants to use his knowledge.

[juliegee]

Hi, Julie,

I would hate for others here to rule out a treatment that could very well help them, based on this post! I don't know how good a study that is 20 years old and only done on 30 patients is! Also it was only looking at patients who had low sub igg levels, not Total Quantitative. From what I understand there are newer trials being done with CFS patients and ivig, and not necessairly just those with low igg. IVIG products have come a long way in 20 years and are much better quality products now then they were then. They also know how to treat side effects better too! Also these were chronic fatigue patients classifed that way 20 years ago and you know the way they look at CFS now has greatly evolved since then.

So does this mean your Quantitative immunoglobulins are normal? If they are normal and you only are low in the sub igg panel, the use of IVIG is not standard treatment yet for that presentation of it. I know how scared you are to consider this a treatment for you, are you looking for reasons to not have to try it should your doctor tell you to consider it, as he has suggested before?

Truly I don't know yet if my IVIG treatments are going to make a difference yet, but I will be honest about how it turns out which ever way it goes. Also for me IVIG is not an end all for my symptoms, I still will need to treat any associated companion illnesses as per their protochol. You still can get infections even with IVIG. IVIG will just help me with frequency and fighting things off better. I will still need diflucan for yeast and antibiotics for infection, and what ever they decide is best to treat the autoimmunity.

There are a lot of illnesses that now, that they are finding IVIG is useful for, but many are still at the research stage with a big to be determined question mark on them. My cardio said that treating of all these immune type illnesses is comparitively still in it's infancy. We have so much to still learn.

We must not rule out a potentintially useful therapy based on one small 20 year old study. As always treatment decsions are between each of us and our doctors.

Julie, I hope that you continue to make progress with your doctor and your treatment choices. If I could wave my magic wand I would make all of use better. Getting better is what we all hope for, I think!

Sorry, AZ, I didn't mean to suggest that IVIG wasn't ever helpful in CFS. I was more excited about the link between low IgG and CFS. (I think I pointed out that this was an old study). I've done a bit more research & see that CFS is related to BOTH a hyper immune response & a dampened response- most specifically low IgG3 and then IgG1. I'm trying to figure out WHAT my low IgG means or could indicate....CFS was one possibility.

Do you know of research that indicates IVIG is successful for CFS patients? I'd love a link. Many of the studies are old. The positive one that I see frequently cited indicates that IVIG is successful in CFS associated with parvovirus. I'd love to see more research.

I don't know what "quantitative immunoglobulins" are .... My IgG is low- 450, most specifically IgG1. Because immunoglobulins are primarily comprised of IgG- that makes my total number low. My antibody response appears good- no CVID. I know that is why you are doing the IVIG. There is a good record of success with that etiology. Are you feeling any better?

Sue, I want a doc with a magic wand too

[Noreen]

Sue, I want a doc with a magic wand too

I actually ask my doctors for a magic wand. Obviously I am not wrapped too tight - lol.