Gamma globulin

[justy]

I made the trip and actually did very well. I think the antibodies from the GG were out of my system (more or less) by the time I was en route.

My Dr said a very interesting thing when I asked him about the awful side effects - he said it was a good situation for him, but bad for me! In other words it showed something was being stirred up (infections) which meant his dx is correct and also that the GG is helping to kill them off. He was very clear that I should continue, but must try tiny doses at intervals to suit me. He literally said I could play around with the dosing to find what suited me for now, but that even a tiny amount was better than nothing and would start to get the immune system recognising and fighting the infections.

He was pretty sure the awful reaction was not side effects but was a cytokine storm caused by the bacterial die off and debris and that I mustn't take so much to make me feel like this in future. He described my immune system as hyper but tired - so I said the GG made me feel like I have flu, but he said 'you probably never actually have flu though do you?' and I haven't for years (at first 7 years ago I caught everything going, now is the opposite).

I am willing to give it another try, but not sure what to do if I cause such a severe reaction again. Maybe start with micro micro dose?

To be on the safe side, we also did a full Immunoglobulin panel to specifically look at IGA and see if mine is low, in which case that could be causing the reaction as Gammanorm has a fair amount of IGA in it.

That's all for now - will report back when I try small amounts.

 

[minimus]

Justy, sorry to read of your suffering from the GG and I hope you are getting past the side effects.

My allergist was able to get my insurance to approve IVIG. I had a sub-normal antibody response to a Pneumovax vaccine and an earlier CT scan showed significant sinusitis. (My diagnosis was something like IG subclass deficiency with normal immunoglobulin, not CVID or another primary immunodeficiency.). This doctor is very effective in convincing insurance companies to approve expensive medications if he thinks they will work for his patients. Most other doctors would not bother, at least in my experience.

Last Friday, I received for the first time a drip of 35 grams of IVIG over the course of about 3 1/2 hours. I was told that the most common side effect was headache, sometimes severe, followed by flu-like aches. I felt a bit lightheaded during the infusion. Friday evening and Saturday I felt normal, at least by my very low standards, although my sinuses bothered me a bit more than normal on Saturday. On Sunday, I woke up feeling spaced out with brain fog and fatigue and then developed a severe headache, comparable to the headache I had from pneumonia about 15 years ago and probably worse than a migraine. I gave myself a B12 injection and a shot of magnesium, went to bed and woke up on Monday with no more headache or other side effects. My energy yesterday and today were a little better than usual. Nothing miraculous and hopefully not a placebo effect.

Time will tell whether this helps me. But so far -- knock on wood -- I am not in a crash from IVIG and definitely am feeling no worse than before the infusion. I may be lucky that I am relatively "stable" and am not particularly sensitive to medication or supplements at this point in the illness, as I have had it for 18 years.

The other medicine this doctor got approval for is Xolair, a monoclonal antibody injectible that binds IgE. It is used to treat asthma and hives, although I am getting it somewhat off-label for sinusitis. It has helped me with allergy, MCS and energy in the 9 years I have been on it. It may go off patent fairly soon, so it is another "unusual" medication for CFS that others might consider, especially if MCS is a symptom.

 

[susank]

@minimus
Reading this with interest. Glad your first IVIG went as well as it did - and that you were approved for it!

Your Mag injections - IM or SubQ? Dose? Anything mixed with it to help with the reported sting?

FWIW I just finished infusing a gram of Mag. IV - done by myself with a butterfly needle. No sting that way - but have been curious about injections. Pharmacists seems to think it's not a good way to do Mag. (Patients seem to think otherwise though?). Interesting about the Xolair - injectable? Will have to research that as well. The name sounds familiar - .. Thanks and take care, SusanK

 

[maryb]

@susank
I know only too well about the sting, I used to add licocaine to the infection first but don't think it did much. My biggest problem is the lump they leave. I massage like hell but still have bruises and lumps!! I do my legs rather than my belly. I don't know how diabetics do this twice a day for life.....

 

[susank]

@maryb
SubQ or IM? How many cc's? I think I read mixing the Mag with something like Taurine lessens the sting?

 

[maryb]

.5ml sbQ needle. I wouldn't take Taurine.

 

[Justin30]

Mary, why would u not take Taurine? Dr Cheney had this in his protocol since 2003.

My curreny Cfs specialist says yes to the magnesium injections. 1/2 cc magnesium sulphate and just over 1/2 cc taurine.

I was doing really good for couple of months on 1 cc magnesium and 1 1/2 ccs taurine. Plus 1g/cc methylcabalamin daily till i crashed 2 months ago. I havent had the illness for very long but have been housebound mostly for 2 months. Now cant do much....

I am waiting on a prorocol from my new CFS specialist who has just finished doing all testing.

 

[Justin30]

To add to this all injections are IM but now I am doing B12 SC.

I am playing with doses at this point.

 

[Gingergrrl]

Sorry to all for a stupid question and I have not read this whole thread. I was just wondering in as basic terms as possible, is IVIG and gamma globulin injections the same thing?

 

[justy]

Sorry to all for a stupid question and I have not read this whole thread. I was just wondering in as basic terms as possible, is IVIG and gamma globulin injections the same thing?

Yes, sort of, just different ways of getting them in the body.

IVIG stands for intravenous immunoglobulins.
SCIG for subcutaneous Immunoglobulins.

IVIG has a higher dose in one go and less frequent infusions. SCIG is smaller doses, usually done at home often once or twice weekly.

Gamma globulins is just another word for the human immunoglobulin product that people either have IV or SC.

Sommetimes it is also known by the brand name. I use Gammanorm, but there are many brands.

 

[Gingergrrl]

Thank you @justy and that is incredibly helpful and makes sense.

 

[minimus]

Just as an update to my last post, two weeks after getting the 35 gram infusion of IVIG:

The most noticeable benefit of the IVIG was that it improved my cognitive function enormously for at least 10 days. I also think my energy level has in fact been a bit better or more stable. Post-IVIG, I was able to do a research project at work that, in retrospect, I realize I could never have done before the IVIG. I presented the research at a company-wide meeting last Thursday and a lot of healthy people I work with did not seem to understand it or its implications. The ones who understood it were highly complementary. So, the IVIG temporarily raised my IQ, or something to that effect. Of course, it would be nice if IVIG had other beneficial effects. I would love to be able to do more than go to work 5 days a week and spend the rest of my time basically immobile with no energy for anything else.

The only negative side effect I noticed was that, after the IVIG, my appetite was a bit worse than normal in the first week post-infusion. Not dramatically worse, but not helpful given that I already am a bit underweight and rarely if ever feel hungry. Usually, the only reason I eat is that, without food, I start to feel symptoms of hypoglycemia.

 

[minimus]

Susank,

I use magnesium sulfate mixed with taurine, 0.2 cc's of each, and inject subcutaneously. I used to do 1 cc intramuscular injections of mag sulfate + taurine. Although it helped with functioning, it also created a fair amount of scar tissue around the injection site (upper butt). According to Cheney, low doses (0.1 - 0.2 cc of magnesium, 0.1 - 0.2 cc of taurine) seem to be just as effective as the higher doses he used to prescribe. Unfortunately, the injections are a bit painful, but I think the benefits outweigh the costs. They seem to improve sleep and my ability to function in the AM somewhat.

Regarding Xolair, I do think it is worth investigating for CFS. My brother used to work at Genentech, the company that invented Xolair, and he initially suggested I try it for fatigue and environmental sensitivity. According to some of the scientists he worked with, high levels of IgE and associated allergy causes fatigue, especially if the allergen exposure is prolonged or unavoidable. My doctor did a series of allergy skin tests in 2005 and basically found that I was allergic to almost everything he tested -- I developed itchy welts to something like 90 out of 110 potential allergens he tested. He then got approval for Xolair, although he had to jump through some hoops first. He said recently that insurers approve it much more readily now than when it was first arrived on the market. Although I didn't notice any dramatic benefit from Xolair, I did stop taking it for about 6 months in 2007 and my wife noticed that I seemed to deteriorate over that period. I then went back on it and my functioning improved again. I also no longer have MCS, or at least am less sensitive to chemicals than I used to be. I definitely would not call it a miracle drug, but it does seem to help me.

 

[Justin30]

Anyone out there has done 1 gram per kg of bodyweight with POTS and Neuro issues?

 

[justy]

I HAVE had to stop the SCIG injections due to allergic reactions once I got up to just 2ml. This had been happening about once every third shot, but this last reaction was just awful so I am stopping for now. This is bad news as even the micro doses were keeping me out of bedbound. The last two times I had a break from it I was Back to bedbound within about a month. Not really looking forward to that again... I also have 500 euros worth of it in my fridge - its a lot of money for me and would have lasted me a while.

I feel pretty bummed out about it all really.

 

[AndyPandy]

Sorry it didn't work out for you @justy

Best wishes Andy

 

[Gingergrrl]

Anyone out there has done 1 gram per kg of bodyweight with POTS and Neuro issues?

You and I have been discussing all this stuff for months so you know my dosages but sadly I really struggle with the calculations of milligrams, grams etc per kg of body weight. I had thought the 1 gram per kg dosing was the immune deficiency dosing vs. the 2 grams per kg was the autoimmune dosing but I may be really confused on this as usual.

I HAVE had to stop the SCIG injections due to allergic reactions once I got up to just 2ml. This had been happening about once every third shot, but this last reaction was just awful so I am stopping for now. This is bad news as even the micro doses were keeping me out of bedbound. The last two times I had a break from it I was Back to bedbound within about a month. Not really looking forward to that again... I also have 500 euros worth of it in my fridge - its a lot of money for me and would have lasted me a while. I feel pretty bummed out about it all really.

Justy, I am so sorry to hear this. Do you know what "2 ml" equals in grams dosing? I'm trying to compare your dose to mine but mine is in grams. I've had three IVIG's total and the first one was helpful except I got the killer headache. The second one was phenomenal with the three week remission from MCAS, increased BP and improved muscle strength. Then the third one was horrible (not in the moment but a delayed reaction) either from the increased dose of IVIG from 24 to 36 grams, the increased infusion speed which was needed to finish the 36 grams by the time the infusion center closed, or from the high dose of steroids given with it (both Solu-Cortef and Decadron).

I had many problems afterward which we suspect are from the steroids including tachycardia, a staph infection on my ear and feeling feverish, chills, and very sick almost like a re-activation of EBV. But both my doc and myself felt it was worth continuing and IVIG #4 will be postponed by one week, will be back at the lower dose (24 grams), at the very slowest infusion speed, and with no steroids. It's a little risky without the steroids b/c of my MCAS but my doctor feels that since I've already had three doses with no allergic reaction and I will take Atarax and the other pre-meds, my ANA risk is very low.

What allergic reactions did you have and what pre-meds do you take? I am still wondering if this might be salvageable for you? I thought I was done with IVIG but realizing that I can try it w/o the steroids and back to the lower dose gives me hope again. If it goes well, we will still try to increase toward the autoimmune dose but in a split dose of 24 or 25 grams two days in a row. My doctor thinks the individual dose of 36 grams might have been too much for me and that a split dose might actually be better. My insurance may not go for any of this b/c it is not what is approved in the authorization but that is a separate issue. And my next infusion in Oct is just the one dose of 24 grams which the insurance is on board with.

Am hoping you can still try it again and maybe there is something that you can modify (new batch, lower dose, different pre-meds, no steroids in case that is a factor, etc)? Am holding out hope for you .

 

[justy]

Do you know what "2 ml" equals in grams dosing? I'm trying to compare your dose to mine but mine is in grams

Its almost laughable, but I was taking less than a gram a month split into 4 doses (two a week at 165mg per ml) it really was a teeny tiny micro dose - even my Dr doesn't know how it is helping. I am prescribed only about 2grams per month, but have never been able to reach this dose. The first time I tried it I was dizzy for a month afterwards. The second time I had a really serious herxheimer reaction that left me in bed in severe pain for three weeks. So my Dr said to just take as much as I could tolerate and try to work up to the prescribed dose (of 2 g per month split over 4 doses). I started at just half a ml (just 82mg) and worked up to 2 ml over a few months. At any dose over 1ml (165mg) I start to get allergic reactions within 10 minutes of injecting.

Some vials seem worse than others for this, but sometimes I react to the same vial (I reuse vials). What happens for me is typical for what happens when I try and inject any drug (happened with local anaesthetic as well). I feel a bit 'weird' or off, then I get a very intense sense of impending doom, like something really bad is going to happen but its very strong. Then I feel like I have low BP - like I would pass out if I stood up. Often I then have to open my bowels, followed by limbs jerking and flinging around for a bit - all the while I feel like I am being tortured. I had a sense of intense pressure in my head as well. After about two hours it just stops and I feel 'normal' again, just very tired. This is quite similar to atypical anaphylaxis - I don't get the breathing problems or throat swelling usually - but often have this seizure like episode as an allergic reaction. It feels absolutely awful.

I had just been accepting this as part of the process, but last time was the most intense and scary and after talking to some masto people they have assured me this is a serious allergic reaction, and im not sure I should keep putting myself through that.

Am hoping you can still try it again and maybe there is something that you can modify (new batch, lower dose, different pre-meds, no steroids in case that is a factor, etc)? Am holding out hope for you .

One batch lasts me a number of months, so that isn't an option (cost as well, plus we have to travel to Europe to get it). I cant get the dose any lower - its already ridiculously low. I don't take pre meds, just my normal daily meds - H1, H2, VITAMIN C and Ketotifen. I don't take steroids as I react to them, also have lyme so not a good idea, my immune system is already supressed, which is why I take the SCIG. A, waiting to see what my Dr says about it all in a couple of weeks- but I think I will have to stop it.

Thanks for responding and for the hugs - really feel like I could do with them right now!

 

[Justin30]

@Jonathan Edwards there is so much talk about microdosing SCIG and IVIG.

Can you clarify for me if a person is given 1 gram per KG is this considered immune suppression or is it considered immune modulatory?

Or is it that the gamma globulin cleans the immune system at large or small doses.

I am confused as the research I have read suggests that the exact mechanism of action is not understood.

Like for example if 1 gram per KG of IVIG similar to Rituximab in its mode of action?

Thanks in advance.

 

[Gingergrrl]

Its almost laughable, but I was taking less than a gram a month split into 4 doses (two a week at 165mg per ml) it really was a teeny tiny micro dose -

I was just curious b/c I didn't know how to compare the numbers. I have tried things at teeny tiny micro doses too and back when I tried Valcyte, I finally cut the pill into 1/64th of a pill but still could not tolerate it even at that dose and had to give up.

At any dose over 1ml (165mg) I start to get allergic reactions within 10 minutes of injecting.

In this case, I do not think that you should continue. I am wondering though, can you try a different brand instead of Gammanorm? (I think that is your brand and apologies if I am getting that wrong)! I use Gamunex and thus far have not been allergic but my mast cell doctor said if I was, we would try Gammaguard as a second choice. Sometimes it is an additive or other ingredient causing the reaction and I wonder if this could be happening in your case?

Some vials seem worse than others for this, but sometimes I react to the same vial (I reuse vials).

This is why I am wondering about the brand?

What happens for me is typical for what happens when I try and inject any drug (happened with local anaesthetic as well).

Have you ever tried it in the IVIG form (vs. SCIG) to avoid the injection aspect of it? Am just wondering if this would make any difference?

I feel a bit 'weird' or off, then I get a very intense sense of impending doom, like something really bad is going to happen but its very strong. Then I feel like I have low BP - like I would pass out if I stood up. Often I then have to open my bowels, followed by limbs jerking and flinging around for a bit - all the while I feel like I am being tortured. I had a sense of intense pressure in my head as well. After about two hours it just stops and I feel 'normal' again, just very tired. This is quite similar to atypical anaphylaxis - I don't get the breathing problems or throat swelling usually - but often have this seizure like episode as an allergic reaction. It feels absolutely awful.

This sounds horrible and like atypical anaphylaxis just like you said.

I had just been accepting this as part of the process, but last time was the most intense and scary and after talking to some masto people they have assured me this is a serious allergic reaction, and im not sure I should keep putting myself through that.

I agree with them and I know we read some of the same Masto boards and these are some very smart and experienced people.

I don't take steroids as I react to them, also have lyme so not a good idea, my immune system is already supressed, which is why I take the SCIG.

I forgot about that part and that makes total sense. I do not have Lyme but I had several different bad reactions to the high doses of Solu-Cortef and Decadron. My 4th IVIG will be without any steroids which should be interesting but I am willing to attempt it back at the lower dose of 24 grams.

waiting to see what my Dr says about it all in a couple of weeks- but I think I will have to stop it.

I am curious to hear what your doctor says and my instinct is also that you should stop it unless you can try a different brand. Is Gamunex available in the UK or Belgium?

Thanks for responding and for the hugs - really feel like I could do with them right now!

Absolutely and sending more hugs your way...