Gamma globulin

[Daffodil]

hi Rrrr..that is amazing amazing news....and you are taking a small dose, too!

I have done only 1 injection. today was not good. I take another injection tomorrow.

xoxoxo

 

[Daffodil]

just wanted to report that even though I think I felt better after my first shot of gamunex 1 gram, I had no such luck after my second shot. I think I may even feel worse.
xox

 

[Rrrr]

just wanted to report that even though I think I felt better after my first shot of gamunex 1 gram, I had no such luck after my second shot. I think I may even feel worse.
xox

i felt pretty bad after most of my shots for the first 1-2 months. keep us posted!

 

[Daffodil]

thanks rrr! today was better
hope you are having a good day!
xox

 

[Daffodil]

hi all. just wanted to update. felt good after my first 1 gram shot, really bad after my second one, and again really bad after my 3rd one. most of my days are pretty bad now.
xo

 

[susank]

Dang it Daf - sorry to hear this.

What to think?

Did you take any pre-meds? Hydrate well?

How long did it take to infuse the gram? An hour? More? Less?

Perhaps the 22g "harpoon" you are using causes the infusion to go too fast.?
Even SubQ - some folks do better going very slow.

Last year I switched from Gammagard SubQ to Gamunex SubQ.

I was off Gammagard for 16 days when I infused the first gram of Gamunex.

That first gram of Gamunex made me feel better - energy-wise anyway. And I did not feel as bad as when I had been infusing low doses of Gammagard 2-3 days/week.

I thought - wow - Gamunex is going to be a winner.

Then as weeks went by - infusing low doses during the week - I started feeling less of the good and more of the bad.

Even though the doses are low - I have to wonder if the "too often" infusions don't work for some people?

Maybe our bodies don't want to see this foreign "stuff" so often?

Maybe that is why I did better on IVIG - getting infused at three and four week intervals?

As opposed to weekly and even more often than that? If not that then:

Also - consider you might be "herxing? You have more antibodies in you than you did before your first infusion.
You added more the second time - then the third.

Dunno - the dose is so low - how could that be possible?

I have also read that the sicker a person is - somehow the worse they feel on Gamma - at least for a while.

I am waiting for insurance approval for Gamma (insurance change).

If approved I will try IVIG again.

Dunno - maybe my body better handled being infused with 10-20 grams at once - with two "hangover days"
- and the levels decreasing over the 3-4 week period.

As opposed to doing it SubQ - where in some ways we are always increasing the levels.

(Thinking out loud here).

Also via IV - the antibody levels peak within hours. SubQ I think it is two days?

Would that make a difference? Do others have thoughts on this?

Dunno Daf - wonder how you would feel doing a gram every other week vs weekly?

For sure - this is something to talk to your doctor about.

xoxo

 

[Daffodil]

hi susan! thanks for your message. at present, my fog is too bad to read the whole thing lol

lmao @ harpoon

I have been reading different forums and it seems that it is normal to feel bad for the first month or 2....I will put it in my head that it's a good sign. certainly wont be the first time I have had to make myself believe that!

xoxo

 

[deleder2k]

When and how much gamamglobulines should one take? i know a doctor here in Norway has treated 50-60 patients with ME with Gammaglobulines. She gives 5 ml every week intramuscular.

 

[Daffodil]

hi deleder. my doctor gives 2 grams a week for 6 months. I am on 1 gram because i cannot afford more.

my doctor has confirmed that it is normal to feel bad on it for a while.

 

[Daffodil]

hi rrrr....any updates on your progress?

I seem to be getting worse and worse on the gammaglobulin. my head hasn't felt this swollen in a while...it is hard to tolerate. I have done only 4 injections so far.

my doctor told me to add some lyme herbals: samento, banderol, cumanada, and smilax. I have the meds but scared to start them. the protocol is a little complicated. I can barely remember my own name right now....not sure how I can keep track of what to take along with all my other stuff.

anyway, hoping for some reprieve from the suffering soon.

 

[deleder2k]

Why only a gram? I've heard dose regimes should be from 5 to 10 ml (not sure how many grams) a week.

 

[deleder2k]

You got ME and CVID? I suffer from ME and i may be starting with injections of gammaglobulines next month. 5ml/week. Apparently my ME/CFS doctor has 60 patients receiving it (Canada criteria), and 50% of them got better. Not sure if I got anything to loose by trying.

 

[Rrrr]

@Daffodil:

I too felt bad the first month or so. so that is to be expected, i think. then things took a turn and i started to do much better.

meanwhile, unfortunately my good stretch (and it was good!) seems to be over. i had a big family gathering (exceptionally rare for me!) at my place and due to the gamma globulin and antivirals i was amazingly present for it, even after not sleeping enough the few days before. in fact, a few days before i was amazingly well, able to do much more than usual.

and then after the family gathering was over, 2 days later, i went downhill. (PEM seems to come 2 days later for me.)

i think it could be the micro doses of GcMAF i had added in (1/20th-1/10th of a cc) and then did the night after the family gathering, so i'll drop the GcMAF for now, i think. not sure.

anyway, then after 3 wks of not doing great since the family gathering, i took another sudden big downturn this past wkend for no apparent reason. and now i am utterly bedridden. what the f***!

i so don't get this illness. could this mega crash be from the family gathering? from the gcmaf? from doing the micro doses of gamma globulin too often (as @susans-not-ok postulates in an above post)? or could it be from the fact that i seem to get good results and then slide back down from many treatments i try lately. who knows.

either way, i'm really bummed out.

i will switch from the generic antiviral i'm on (famvir) to the brand name version, because one fellow patient told me it made a big difference for him. and i have read this online from others.

sorry for the bad news. ::sigh::

 

[Rrrr]

You got ME and CVID? I suffer from ME and i may be starting with injections of gammaglobulines next month. 5ml/week. Apparently my ME/CFS doctor has 60 patients receiving it (Canada criteria), and 50% of them got better. Not sure if I got anything to loose by trying.

@deleder2k: it seems that different doctors try different amounts. i have one friend who was started on 10 grams (or was it 20 grams) via IV, for 3 days in a row (totally 30 grams in 3 days)! i started on 1/3rd of a gram.

i think the ml is not as important as the grams. find out how many GRAMS are in the 5 ml you will take.

but i don't think there is a set amount that all doctors use across the board. unfortunately, each patient has to find:
- the right amount for them
- the right brand for them (different patients do well on different brands)
- and the right mode of administration (IV vs IM vs Subq shots)

good luck!!!

 

[deleder2k]

Maybe I am wrong. Better to discuss the same thing

gammanorm®, Human Normal Immunoglobulin (SC/IMIg), 165 mg/mL, solution for intramuscular injection or subcutaneous infusion

One vial of 10 mL gammanorm® contains 1650 mg human normal immunoglobulin.

gammanorm® contains human normal immunoglobulin G (IgG) ≥ 95%, with a broad spectrum of antibodies against infectious agents.

So when I am talking about a weekly dose of 5ml immunoglobulin, I guess that is only 0.825 grams.

 

[Rrrr]

Maybe I am wrong. Better to discuss the same thing

gammanorm®, Human Normal Immunoglobulin (SC/IMIg), 165 mg/mL, solution for intramuscular injection or subcutaneous infusion

One vial of 10 mL gammanorm® contains 1650 mg human normal immunoglobulin.

gammanorm® contains human normal immunoglobulin G (IgG) ≥ 95%, with a broad spectrum of antibodies against infectious agents.

So when I am talking about a weekly dose of 5ml immunoglobulin, I guess that is only 0.825 grams.

let's ask @Ema or someone else, as i can't do the math. sorry!

 

[Daffodil]

thanks for the responses i dont have CVID that i know of, but have not been tested properly for several years. i'd have to travel somewhere and shell out too much money for those tests and I cannot do that right now...

most doctors do give a higher dose but my doctor uses 2 grams of immunoglobulin a week. I am on 1 gram because I cannot afford more.

rrr...how interesting..you really did have a good run. i wonder if you might have picked up some kind of bug? maybe as time goes on, the relapses will become less frequent and eventually disappear. maybe it is par for the course.

i rarely take GcMAF now, mainly because I just cannot remember to take any. its hard to make heads or tails of anything these days and i just dont even know if it helps or not.

susan thanks so much for trying to help. cannot explain but head is so swollen, its like i can never read your posts and process all the info so i cannot type you a proper response lol

ugh too fogged up

i was at my old workplace yesterday and ran into a few people i know who looked happy and were rushing around. they were dressed up and had makeup on. also saw an old friend across the st, talking to friends. i wanted to scream! blahhhhhhhhh. after 21 yrs, it still gets to me!

 

[Sushi]

...
my doctor told me to add some lyme herbals: samento, banderol, cumanada, and smilax. I have the meds but scared to start them. the protocol is a little complicated. I can barely remember my own name right now....not sure how I can keep track of what to take along with all my other stuff.

anyway, hoping for some reprieve from the suffering soon.

You need to have a calendar just for the herbals. In my experience this is the best way to do it.

Sushi

 

[deleder2k]

@Daffodil, can your regular GP do IGG tests? That shouldn't cost you a lot. In Norway every doctor can take blood to test for IGG with subclasses.

 

[susank]

Here is URL for the condensed version of the article:

http://www.ncbi.nlm.nih.gov/pubmed/11982967

The info I saved from it is five pages and much more detailed.