Hi, I have posted on this forum before but not for a long time as the last time I did, I was challenged and felt very intimidated, but I have a real concern with my husbands treatment and really need some help

My husband was diagnosed in 2013 with Clarkson's, his case was discussed and his records reviewed by the Mayo clinic at that time and he had an official diagnosis confirmed then.

He has been having his 4 weekly treatment since then with flebogamma, but we have been told that due to circumstances beyond our control, we feel it is cost, that NHS England are changing from flebogamma to one of the following:

Gamten

Panzyga

Privigen

Gamunex

I was wondering if anyone on this platform, should shed any light on any of the alternatives Eric has been offered as a replacement

Do any of you have these alternatives a part of your treatment, any known side effects

I would really appreciate any feedback you could give me

Many thanks

Helen 

I've been on Gamunex since day 1 (about 2.5 years now). I've only had minor or rare side-effects.  Mostly just minor fatigue the evening after the infusion. And 2-3 times a "Globus Sensation" like something stuck in my thoat, or like a pill went down the wrong way (not attributed to an actual stuck item).   I had only been taking a half dose of benedryl before the infusion. I recently increased to a full dose and haven't had any issues.  Just my personal experience though. 

I've been treated in 4 different places since my diagnosis in 2014, a different IViG product each time, and had no problems, seen no difference. I've had gammunex, gammagard, privigen and probably one or two others but I don't keep close track of these things. My original was gammagard and that hospital switched to gammunex for what seemed like the same reasons you're seeing. I had the same kind of concern at first, but it's been fine - have hope :)

I was on Previgen years ago without many side effects.  Mostly experienced a dull headache and was tired for the days getting the infusions. Otherwise, no issues.

thank you so much for your feedback, we really appreciate it and now feel less concerned about the changes

Many thanks again

Hi Dear Rareshare5050,
Since 2005, I have used various IVIG products (Redimune®, Octagam®, Kiovig®, Privigen®) with identical prophylactic efficacy. The side effects (headaches) were less severe with Privigen...
Yours sincerely Claude Pfefferlé (cn.pfefferle@bluewin.ch)

Helen, this is a question which has come up before in this community.  Most of us SCLS patients have been exposed to more than one brand of IVIG, and our collective experience has been that they all perform equally well in terms of preventing or minimizing our episodes of SCLS.  And that, rather than the side effects, is and should be our main consideration.

Besides, we usually don't get to choose the brand: the hospital or infusion center contracts with whoever has inventory and charges the least, and this usually changes every few years for understandable, market reasons.  Realistically, our choice is to agree to be administered, or to decline, the IVIG that's being offered.  Faced with that do-or-die choice, every physician I know will recommend that we should agree.

Now, it is a medical fact that unlike generic drugs, IVIG products are not interchangeable. Each IVIG brand has a slightly different composition (immunoglobulin concentration), undergoes a somewhat different purification process, and has a marginally different formulation (stabilizer, pH, osmolality, or sodium content), yet studies show that most of the usual side effects are seen in similar frequency among the various formulations.

For additionbal details, see, for example, https://ameripharmaspecialty.com/ivig/are-ivig-products-interchangeable/ 

hi
my treatment with ivig sometimes changing the brand but it's the end of the contract with the hospitals but I think it's not different maybe it's a side-effect like headache which has only problem but right now sometimes they change the brand