Change of product

[floopyjim]

Hi All,

Hope you are all keeping well.  I will be infusing the last 7 bottles of Subcuvia this coming Saturday and after that, will be put on a new product - not sure what though.  I was wondering, the 'strength' of Subcuvia is 1.6g/10ml - are all subcut products of a similar strength (or preferably greater)?  I was worried I might have to infuse more (I already infuse across 4 sites each week).  I really hope this stops the chronic fatigue and headaches...

Does anyone know what immunoglobulin products the NHS buys or does it differ across hospitals/regions?

Cheers,

James.

[john]

Hi James,
I think that classic subcut products are all of much the same concentration, but with the new products like Hycuvia and the "push" system coming along, concentrations may well be different. My clinic keeps its patients on the same product brand if it is well tolerated, and will change brands if the patient has side effects that they feel another manufacturer's product might alleviate, like your headaches. The fatigue, well that is something that almost everyone I speak to gets, regardless of product or delivery method,and is more likely to be due to the immunodeficiency than the therapy. No-one in the medical field seems keen to give me an answer on my own fatigue, except that I am currently undergoing tests for heart and liver possible causes!!
The whole concept of using donor antibodies is a pretty weird one when you think about it. With IV you have to dump a whole lot of buffer liquid into your blood stream every couple of weeks...god only knows what your body thinks about that, and with subcut you push a sticky foreign fluid into your fat cells that were never designed to accept it, and then wait for your circulation to wash it out into your blood!! Very strange, no wonder no-one on the outside understands what we have to do to stay alive!! Chin up James...nice to hear from you!

[floopyjim]

Thanks John - I have experienced the dreaded 'fatigue? Don't know why that is - get more sleep' responses from medical staff. It's a shame really - it's probably one of the worst symptoms I get (well, not being able to breathe is but that doesn't happen all the time!), although changing product would be worth it to get rid of the headaches.

James.

[s162216]

Hi Jim,

As far as I know all of the SC preparations licensed in the UK are 16%+ (excluding Hyqvia which is 10%, but that's essentially in a class of its own as it differs from standard SCIG) so you shouldn't need to worry about the volume. The individual NHS immunology clinics buy any of the 4 SC preparations available, and whilst they may try to standardise on a particular one, they'll offer others as an alternative in case it doesn't agree with you.

I think that john is right though, fatigue and tiredness is likely more down to the condition than the treatment; it probably doesn't help either that most people with PID also have other health conditions, so it can be very difficult to pin down a cause.

Sam.

[floopyjim]

Cheers Sam - I am very familier with other health conditions - I'm never sure whether it's down to PID or just me getting old!

By the way, I had my first infusion from the new product yesterday - I'm now on Gammanorm - no redness during infusion and the swelling has almost gone the day after! I feel horribly tired, probably because I have had two infusions in 4 days and the pharmacy couldn't get 10ml bottles in time so I was given a 20ml instead (a bonus 1.65g).

I have no headache either - a slight one during infusion but none after... I'm hoping next week will be even better.

The nurse called my condition 'borderline specific antibody deficiency' because I have more than one IG that is low - I thought that was CVID?!

James.

[s162216]

Oct 1, 2015 13:07:14 GMT floopyjim said:

The nurse called my condition 'borderline specific antibody deficiency' because I have more than one IG that is low - I thought that was CVID?!

James.

Semantics unfortunately, they'll probably "upgrade" you to CVID later if further tests point in that direction. Of course (assuming IgA is the other type?) you could just naturally have IgA deficiency (which is the most common genetic condition in the UK with about 1 in 400 to 700 people affected, although most don't know and it doesn't usually cause them any major problem).

Sam.

[floopyjim]

I have now finished week three of the changeover to the new product - I urge anyone who is having side effects from their scig product to change to a new one as the difference is noticeable. The headaches I had before were terrible - having had almost no headaches after changing to the new IG, I wish I had done it sooner.

James.

[glowing]

So glad it's working for you.

Glo