Hi my son was diagnosed with cidp in May 2013 and has been treated with ivig after each relapse. This works really well and after only a week of receiving treatment he is practically back to full strength and his old self. Each treatment lasts a little bit longer, last one for 15 weeks of course the idea is that one time it will never come back!!
At his last appointment our consultant suggested using immunosuppressive meds instead because the ivig might not always work and despite my concerns of the side effects of this treatment the consultant wants to go ahead. We are not happy and feel this may be being forced on us due to the cost of the ivig, I don’t understand why we would change a treatment that we know works for him. We live in the UK and have National Health Service that pays for the treatment so we really feel the cost is the issue. has anyone else experienced this from their doctors? My son is only 11 and I feel would be very vulnerable with suppressed immune system, he wants to be ‘normal’ like his friends but I would feel I had to wrap him in cotton wool!! Sorry for bit of a rant.
IvIG sounds like it works. I'd fight for it until it fails, and it might fail. All meds/treatments are a gamble. Be prepared is what I think the neuro is saying.
I'm in the UK too and Im constantly under pressure to give up the Ivig and people are constantly ready to remind me that it cost £600 per bottle but I've been getting it every 3 months for the last 12 years you will have to push hard to keep it going but also you will have to face the fact that if it doesn't work (which it doesn't always) then the doctors may override you and stop it for an alternative treatment.
Don't go running off to spain just yet just state your case as forcefully as you can, try to insert 'quality of life' in the conversation that's about the only phrase that seems to matter
We are in Australia and having the exact same experience as you. Lots of pressure to stop ivig (the only treatment that has worked for our 14yo daughter for the past 2 years) due to costs which Medicare cover. I am fearful that if it is stopped she will get more permanent axonal damage (which happened last time he stretched the treatment out from 6 to 8 weeks). Unlike your son we have not been able to stretch out the treatments. I hope your son continues to improve.
Bill2503 I’m going to slip your “quality of life” quote into the conversation next time we speak or email her Neuro. Thanks for that!
Thanks guys its good to know we’re not alone in this. As with you Catherine I fear about more permanent damage if we stop the ivig. After my son’s 3rd relapse they tried him on prednisolone steroid tablets instead, he improved only very slightly and his personality really changed. He was due to take it for six weeks but we refused to continue and he was given the ivig, after a week he was practically at full strength and I had my son back! It seems to be a no-brainer really. I shall definitely be using the quality of life quote too.
Bill2503 no not dashing off to Spain for now, good one though!!