Hi All
I?ve been diagnosed with Sjogren?s For 2.5 yrs. I?ve been managed pretty well with plaqunel, imuran and gabapentin for neuropathy. In April 2018 I got real sick, had pneumonia in both lungs. Since then I?ve been miserable. Body aches, joint pain and headache. My neuropathy pain is un manageable. My rheumatologist tried 2 doses of Rituxin, in April. I haven?t felt better. She wants to do IVIG. Does anyone have any experience with this? Good/bad? I desperately want to feel better. I?ve been out of work for 10 weeks. At this point, I can not function enough to return. 😢
I've had one go-around with IVIG a few years ago. I had no complications.
It didn't help me then. Now I'm having a much more intensive course, taking 6 months.
I like the summary on Medscape:
https://www.webmd.com/a-to-z-guides/immunoglobulin-therapy#1
Also, I had many opinions at the time. My main Rheumi did not recommend it, because its effect is so short-lived.
However it does have significant anti-inflammatory effects.
Best wishes
Do a search on IVIG on this forum. I have done IVIG for 12 years once a month and have a lot of posts on this forum. You can read my info and a lot of other peoples info that has already been addressed. We just went through this a few months ago with another guest so imagine the info is up to date. Good luck. Irish
Dear Bgfreyer,
I have IVIG every four weeks because I have an immune deficiency (Low in G and M).
Since I started 5 years ago, I have not had a serious infection. Before that I was constantly sick.
I do have profound PN and severe SFN, but IVIG that I have isn't for those conditions, and doesn't help. The PN was diagnosed in 2010, but began well before then. The SFN became unbearable in 2014, or thereabouts.
Keep us posted, and best wishes.
Elaine
Yes BG,
Every other Sunday, I give myself a Sub-Q IVIG infusion at home. It was one of the best medical decisions that I have made. It is nice to be well (autoimmune issues aside) and not constantly requiring another antibiotic.
Do some research and you might go to the Immune Deficiency Association site. They have a wealth of knowledge.
Good Luck!
SjoDry
Here's the IDF link.
https://primaryimmune.org
Regards, Elaine
I just had my first IVIG infusion last month. I've had Sjogren's for 17 years and took Rituxan for 8 years. It helped me a lot.
Little by little, tho, we started to notice deficiencies in my immunoglobulin levels in my blood work and I was getting a lot of infections. In 2016, I had to stop the Rituxan because I was IgM and IgG subclass deficient and my family doctor was concerned about my almost back to back to back infections. My immunologist thought things would improve a year after I was off the Rituxan, but it was worse. When I didn't create any antibodies to a vaccine he gave me, he was able to get the insurance to approve the IVIG.
It's to early for me to say it's made me feel great. But knowing how hard my family doctor and immunologist fought for the IVIG, I suspect it will do something good.
I hope this helps you feel better,
Tracy
Tracy, I have received the IVIG for 12 years. I started out on Gammagard and then Gammunex, then Privigen and am now on Octagam. I was originally prescribed IVIG for my myasthenia gravis but I also had a severe T-cell deficiency and some low IgG levels. I continued to have infections with antibiotics many times a year....almost monthly for the first few years and now I seldom have an infection and my blood work is much improved.
So, I wish you luck now and hope your blood tests convert back to normal quite soon. Boy, we just keep on collecting experiences don't we. Good luck. Irish
If you're on Medicare, as I am, it's a whole new world for managing Autoimmune Disease. Medicare coverage for IVIG or Subcutaneous Immune Globulin (SIG) is complex, and very confusing. Medicare will not pay for IVIG at home. A severe disability might cover home infusion.
There are a bewildering number of regulations, as is typical. Has anyone been successful in having IVIG or SIG covered by Medicare? If so, are there any warnings or advice that would be given?
Thanks so much.
I am on Medicare.
I have IVIG AT HOME, as part of a MEDICARE sponsored Home Demonstration project.
The object of the project is to determine if IVIG at home is safe and economical.
Before I began IVIG at home last Spring, I had IVIG at Duke Medical Center's large infusion center for FOUR AND A HALF YEARS.
All of the time I've had IVIG infusions I have been on Medicare and Medicare has paid for my infusions.
However there is a Medicare co-pay which amounts to about $500/month. I now have a form of Medicare Supplement (F) which pays the co-pay. The Medicare Supplement costs $240/Month, so it is clearly worth it.
Medicare covers IVIG. Your doctor must make a convincing case for IVIG, and reauthorize your infusions annually based on your blood work. YOUR DOCTOR will navigate Medicare regulations. The PATIENT has NO INVOLVEMENT with authorization for Medicare coverage.
Regards, Elaine
Hi Carolina
Physicians have a hard time getting authorization for IVIG, in my experience. Most of them give up.
The Home Demonstration Project that is mentioned, seems one of the best ways.
Medicare denied my IVIG when my Rheumatologist gave the diagnosis of Polymyositis, Polyneuropathy & Sjogrens Syndrome.
From my reading, one of the best (or only) ways is to use the ICD Diagnosis Code R77.1 (abnormality of Gamma Globulins). You must have had immune electrophoresis, with a detailed breakdown on Gamma Globulin subtypes. For me, I have a very low subtype number 3. Hopefully, this could work.
It would help your case if you added:
- G61.0, G61.81, G61.89 Inflammatory polyneuropathy
M35.9 Systemic involvement of connective tissue, unspecified
G72.89 Other specified myopathies
D80.3 Selective deficiency of immunoglobulin G [IgG] subclasses
I am in process of a Medicare Appeal.
There are three basic criteria for eligibility for IVIG.
Caveats:
1. IVIG is enormously expensive because it takes from 1,000 to 10,000 paid donors to make one IVIG treatment. AND because it takes 9 months of treatment of the donated blood to insure freedom from contaminants and infective agents. The charge for my IVIG, every four weeks in $14,000. That's $182,000 per year, for the rest of my life.
2. Therefore, the barriers to eligibility are very high. Those of us with a Primary Immune Deficiency Disorder will be receiving IVIG for the rest of our lives. Since I no longer get sick with infections, my life expectancy is much higher.
Three basic criteria:
1. Deficiency in at least two antibody classes: A, G, M, are the main ones. (Evidently G subclass deficiency is also included?) My deficiencies are G and M. IVIG only adds IgG to my blood. So my IgM stays low.
2. Failure to achieve adequate immunization to the Pneumovax vaccine. The vaccine contains 23 (or more?) viral strains of Pneumonia.
The prospective patient is administered the Pneumovax and then tested for Immunity a month later. For example, I had normal immunity to ONE strain, and very low but adequate Immunity to TWO strains. Immunity in only 3 out of 23 strains makes me eligible. I had this test TWICE to be sure.
3. A history of chronic, repeated infections. In my case I had fungal, bacterial and viral infections almost constantly in the years leading up to diagnosis. I was not, however, hospitalized with pneumonia, or on IV antibiotics, which is often the case.
On this forum I met one person who qualified on counts 1 and 2, but didn't get infections!
So she is NOT eligible for IVIG, even tho' she has deficiencies in two antibodies, and fails the Pneumovax screen. If and when she develops a history of infections, she will be eligible.
There is another way in which one is eligible for IVIG. A diagnosis of neuropathy which is determined to be the sort responsive to treatment with IVIG. In this case, the treatment is much more intense, and is not considered to be a treatment for life.
Now, I am not a medical professional, and I may have misstated the information above, and there may be additional information that I don't have.
PLEASE feel free to give me additions, corrections and anything else that will help.
The attending physician MUST fill out the paper work authorizing IVIG. The patient cannot be involved in this process. You MUST find a Immunologist who is experienced in filing for IVIG. My Immunologist is at Duke Medical Center, where she also does research on CVID, my form of PIDD.
I was offered a chance to participate in the Medicare Home Demonstration Project, and am delighted to participate. I have IVIG in my own home, with the same nurse each time (until she changes jobs of course).
Regards, Elaine