Keeping positive

[charley]

Hi all just thought I'd put somthing positive on here instead of a question or sonthimg about a bad thing happening!
I used to be on privigen for cvid and felt terrible, 2.5 weeks of lethargy and aches, pains and head aches. I changed to infuse my self and didn't feel much better. The consultant told me I had chronic fatigue syndrome, I told him I did not, it was the medication!! He finally changed me to octagam and felt better with in days!! Now hardly have any side effects and am so pleased to be able to get on with my life! I'd just like to say thank you for finally being changed to a drug that works for me! But also, trust ur own body as I knew it was the medication but i was diagnosed anyway!

Keep positive, keep changing drugs unless you have found your one!!

[glowing]

Hi Charley.
Thank you for putting something positive for everybody to read. It certainly gives people a lift and hope when reading good news. I'm so glad you are feeling much better and long may it continue.

Glo

[s162216]

Hi charley,

It's great that you're feeling better now on Octagam, and that you're keeping positive. It may be an easy thing to say, but for anyone's mental state trying to keep positive is a much better attitude to have than being negative.

Hope that the Octagam continues to work well with you,

Sam.

[gillie]

Hi Charley. How nice to come on line and find a positive post like yours'. I was on Octagam for years, and found it worked really well for me. I'm infused with Flebbagamma-diff now. Works equally well, so I've been lucky.

[ladybug64]

Thanks for sharing that Charley . Could you explain the difference between Privigen and Octagam for me? I'm a newbie....

[s162216]

ladybug64 welcome to the forum.

Although Privigen and Octagam are both 10% intravenous immunoglobulin G formulations which contain IgG (antibodies) extracted from blood plasma they are made by differing companies, and because of this will have differing properties due to differing manufacturing processes in the fractionation, purifaction etc, and also in other agents required to stabilise, preserve etc the formulation. Between the two the major difference is that they both use differing preservatives, with Privigen using L-proline (an amino acid) whilst Octagam uses maltose (a form of sugar); both of these have good preserving properties, but Privigen is useful for those who are diabetic like me as it contains no sugar based preservative (which most formulations do, although more and more recent ones are not).

Beyond that though there is little difference, but as each type is prepared and formulated differently formulations are not interchangeable and they are considered as completely separate drugs. It is essentially impossible to know how your body will react to each product so the first time you have a particular product you will be given it slowly and be carefully monitored. As IVIG contains IgG from donated plasma, you're not getting the exact same treatment every time (unless they're from the same batch) as obviously it will contain IgG from different people, and sometimes your body may react against a particular antibody in the formulation - it's not like taking a conventional drug where it is manufactured to be precisely the same.

Mild side effects and reactions during/shortly after the infusion like headaches, feeling tired for a short time, feeling cold etc are common, and can usually just be treated with paracetamol or ibuprofen, wearing warm clothing etc; more serious reactions are not unknown, but they are extremely rare (to give an example, at the clinic where I used to infuse they had only had 1 serious reaction in the space of 10 years). This is why if your infusing at home you need to have someone with you at all times in case something goes wrong.

Hope you find this useful,

Sam (Admin)

[charley]

I also found there was polysorbate 80 which is a stabiliser or preservative, in the I infused subcut, which on is own had Known side effects of aches pains lethargy fatigue, and I had big red welts appear where I infused, which although went, they were a reaction that is known to be the same Polysorbate80. I don't know what's in octagam t preserve it, but I ended up thinking, if the reaction on the outside is large welts then wat is the reaction inside doing! They don't tell u about the other ingredients in the drugs but assume everyone should be fine with them, but I guess we're not necessarily.