Subcutaneous immunoglobulin therapy

[Gingergrrl]

in people symptomatic with Parvovirus, IVIG is used to heal it, even when the patient has normal IGG levels. Why isn't this approach used for other infections like EBV, CMV, HHV6 etc?

I am wondering the same thing as my ME/CFS doctor said that IVIG is *THE* treatment for Parvo virus but not for the others. Does anyone know why this is? I am low IgG positive on Parvo but am negative on IgM and PCR and do not believe that Parvo is the cause of my problems vs. newly discovered auto-antibodies.

We tried for 6 months to get insurance to cover. But all of his other IGG levels were normal. so not covered.

Hi @Billt Am sorry to hear this and am sorry I am so slow at present to respond via PM but will do soon and you and your son are always in my thoughts. I have no idea if insurance will authorize IVIG or SCIG for me but I would very much like the opportunity to try it.

I was prescribed 3 ml twice a week of Gammanorm.

@justy, Is Gammanorm the same as Gammunex or Gammaguard? Am wondering if there are different names in Europe or there are really three brands with similar names!

IVIG at high dose has anti-inflammatory effect for diseases that clearly have autoimmune basis.

I have heard this, too, that IVIG for auto-antibodies or auto-inflammatory conditions starts with a high loading dose but I already know this will be impossible for me. If I attempt this, I will start with the very lowest dose and slowest infusion speed possible until certain I am not allergic and build up vs. the other way around.

@RYO Did you ever end up starting this treatment and if so, how did it work for you? Do you have auto-antibodies or were you guessing that you did without testing?

 

[justy]

@Gingergrrl Gammanorm is another, European brand. Used for IM and SUB Q injection only, from northern European blood donors (not UK because of the risk of VCJD).

 

[Gingergrrl]

@Gingergrrl Gammanorm is another, European brand. Used for IM and SUB Q injection only, from northern European blood donors (not UK because of the risk of VCJD).

What is VCJD? I didn't realize different ones used blood donors from different countries although that completely makes sense when I think about it. How are you doing with the injections now?

 

[Billt]

Hi @Billt Am sorry to hear this and am sorry I am so slow at present to respond via PM but will do soon and you and your son are always in my thoughts. I have no idea if insurance will authorize IVIG or SCIG for me but I would very much like the opportunity to try it.

One day we will find the answers my friend ! Maybe you can this this covered and will help you. For us anyway, insurance is as hard to deal with as the symptoms !

 

[RYO]

@Gingergrrl
I tried SC Gammagard for last 2-3 months. I started with weekly 2.5 grams infusions for the first 4 weeks. I did not notice much difference. Perhaps minimal improvement in my chronic leg pains. My rheumatologist and I decided to up the dose to 5 grams weekly. After 6 doses, I had to stop treatment. I felt wiped out (more than usual) after infusions and it didn't help much with leg weakness, chronic pain, muscle fasciculations or fatigue. I did not experience any infusion reactions although I felt "internal agitation" (hard to describe) with higher dose.

Overall, I am disappointed. I am trying my best to keep working part time but life is pretty miserable...

 

[Gingergrrl]

One day we will find the answers my friend ! Maybe you can this this covered and will help you. For us anyway, insurance is as hard to deal with as the symptoms !

Yes, one day we will find the answers and I agree that dealing with insurance issues is a huge part of the battle and wish this was not the case. Thanks for being a good friend. If I do try IVIG in future, will definitely keep you posted.

@Gingergrrl
I tried SC Gammagard for last 2-3 months. I started with weekly 2.5 grams infusions for the first 4 weeks. I did not notice much difference. Perhaps minimal improvement in my chronic leg pains. My rheumatologist and I decided to up the dose to 5 grams weekly. After 6 doses, I had to stop treatment. I felt wiped out (more than usual) after infusions and it didn't help much with leg weakness, chronic pain, muscle fasciculations or fatigue. I did not experience any infusion reactions although I felt "internal agitation" (hard to describe) with higher dose.

Overall, I am disappointed. I am trying my best to keep working part time but life is pretty miserable...

@RYO thank you for that update and am sorry that the SC Gammagard did not help. I honestly have no idea what would be considered a typical dose for my situation (trying to decrease auto-antibodies) and all of this info is helpful. I suspect the dosing varies from brand to brand too? I hope you find the right thing that allows you to feel better and there is so much trial and error with all of this. I know the disappointment when you think you have found the right thing and it turned out to be a waste of time. Am glad you did not have any horrible side effects though, that is reassuring. Best wishes to you.

 

[Justin30]

@Gingergrrl
I tried SC Gammagard for last 2-3 months. I started with weekly 2.5 grams infusions for the first 4 weeks. I did not notice much difference. Perhaps minimal improvement in my chronic leg pains. My rheumatologist and I decided to up the dose to 5 grams weekly. After 6 doses, I had to stop treatment. I felt wiped out (more than usual) after infusions and it didn't help much with leg weakness, chronic pain, muscle fasciculations or fatigue. I did not experience any infusion reactions although I felt "internal agitation" (hard to describe) with higher dose.

Overall, I am disappointed. I am trying my best to keep working part time but life is pretty miserable...

Hi Ryo,

Sorry to hear its not working out for you. It could be cleaning up stuff causing the sick feeling. I have know clue though....

Did you have an Igg Subclass deficiency to get it covered or did you.private pay?

Thanks

 

[justy]

What is VCJD

variant creutzfeldt-jakob disease - thought to be from eating cows contaminated with 'mad cow disease' (casued by feeding cows dead cows). It was a big problem in the UK in the 90s I think - UK residnets cant give blood for GG.

How are you doing with the injections now?

Having a break after I kept reacting to one batch - I now realise I was having atypical anaphylaxis. I never managed to get the dose up high enough either as it caused bad herx if I did. May restart soon.

It could be cleaning up stuff causing the sick feeling

Yes this happened to me - herxed hard for three weeks until the GG was out of my body - felt like I had the worse case of flu ever, without the runny nose, sore throat etc. This was on a tiny dose of Sub Q.

 

[ErdemX]

I've been on Gammanorm for 3 weeks. 10ml / 1.6 grams per week SubQ.

First dose made me extremely fatigued afterwards, but then actually I had some improvement.

During this 3 weeks I'm a bit better in terms of energy and muscle strength, but I think its early to say if it's because of GG (although I've had no improvement for 4 months). I will report back in next weeks/months. If it goes OK, I would like to double the dose, if my doctor (KDM) approves it. When I asked him about his experience with GG, he said it helps some patients greatly and has no effect for others.

When bought from Belgium, 10ml per week costs approximately 330 Euros per month, and that's quite a low dose. Its effective dose for serious diseases are between 4-8 times more.

 

[Gingergrrl]

variant creutzfeldt-jakob disease - thought to be from eating cows contaminated with 'mad cow disease' (casued by feeding cows dead cows). It was a big problem in the UK in the 90s I think - UK residnets cant give blood for GG.

Sorry, I did know what this is but it has a slightly different name in the US.

This made me think of two other questions:

Do people do better with IVIG that is made in their own country so it is the same exposures as what they are used to?

Also, are there different types of IVIG so they match the persons blood type or are they all type O (universal donor?)

Sorry if dumb questions!

Having a break after I kept reacting to one batch - I now realise I was having atypical anaphylaxis. I never managed to get the dose up high enough either as it caused bad herx if I did. May restart soon.

How did you figure out it was an atypical anaphylaxis vs. something else?

 

[RYO]

Hi Ryo,

Sorry to hear its not working out for you. It could be cleaning up stuff causing the sick feeling. I have know clue though....

Did you have an Igg Subclass deficiency to get it covered or did you.private pay?

Thanks

I was able to get it approved based upon viral myopathy diagnosis. It was still expensive...

 

[Gingergrrl]

I was able to get it approved based upon viral myopathy diagnosis. It was still expensive...

@RYO Does viral myopathy mean mycocarditis or any type of muscle pain? Is it more difficult to get it approved for autoimmune issues vs. viral issues? I have IgM+ viral titers in addition to the auto-antibodies and am curious how my doctors will get it approved since either could really apply.

 

[RYO]

@Gingergrrl Not myocarditis but lower extremity viral myopathy. When I first got sick 4 years ago, I could barely stand up during my acute viral illness. I have constant leg pains and weakness. I suspect any person that wants to try immunoglobulin therapy will have a tough time getting medication approved by insurance company. My doctor had to write appeal letter and send copies of office notes.

 

[Gingergrrl]

@Gingergrrl Not myocarditis but lower extremity viral myopathy.

I have constant leg pains and weakness.

@RYO Thanks for clarifying and how do they test for viral myopathy? Is is something that always involves leg pain and weakness or could it involve other body parts besides the legs?

I suspect any person that wants to try immunoglobulin therapy will have a tough time getting medication approved by insurance company. My doctor had to write appeal letter and send copies of office notes.

Agreed and if I go this route, I know it will not be easy and certain insurance codes will have to be used (and hoping the doctors will know how to do this without it getting dragged out for months.)

 

[newbie1985]

I am wondering what is the proper way to inject gammanorm.

They said "You don't need a pump. You have to give as slow as possible". Now does that mean 30 seconds or 10 minutes? How slowly you put it?

Also what kind of syringe did you use? I guess insulin syringe should be fine, correct?

Tnx!