Do any of you who received plasmapheresis live in the UK?
The IVIG treatment doesn't seem to have helped my daughter who is still paralysied from the chest down since onset mid-January 2015
hi
yes ,i was paralysied and my left side off face was numb .
I was in icu and had first IVIG for 5 days and straight after was lucky to get 5 days off plasma exchange treatment.my last treatment was in the afternoon and by the evening i started to move my fingers.
Hi XTine -
I am not in the UK but wanted to comment.
I was very glad that I was given the choice given how aggressive I was losing function, but please speak with your Dr on the risks. The procedure puts a port directly into an artery in your neck or thigh to exchange your blood. The port does have some discomfort and the actual treatment has some mild discomfort that you need to accept.
Given the choice again, hands down I would chose the plasma treatment over IVG. I wanted the offending antibodies out right away, rather than attacking them with drugs.
My best wishes for you and your daughter.
I'm in the UK. I don't receive plasmapheresis, but I know some people do get it at the National Hospital for Neurology & Neurosurgery. (Thats in queens square in London - near Gt Ormond St)
Email me if I can help - Jim
Hello Jim. I tried asking the Matron of ICU but she said the Immunogl.... was better for Karen, however,she is still totally paralysed from neck down. I asked if she had seen her consultant but she said not since she was in ICU. Under what circumstances is the plasma therepy given?
I'm in the UK. I don't receive plasmapheresis, but I know some people do get it at the National for & Neurosurgery. (Thats in queens square in London - near Gt Ormond St)
Email me if I can help - Jim
I'm not sure of the situations where they will move to plasmapheresis for GBS or CIDP, but I'm back in hospital next week and I can ask if you like. It may be that the hospital you're in doesn't have the machine, or the specialist people to run it.
They did offer it as a possibility to me, they said both are equally effective with most people. The reason they prefer iViG in the UK is that it has lower risk (only one cannula in the arm for iViG vs two big ones - groin and neck for plasma),it's less complicated to administer (plasma requires quite specialist machinery - some of it in the patient - embedded cannulas(ports) which can go wrong), and most people find iViG generally more tolerable. (I believe iViG is quite a bit more expensive in fact.)
They achieve a similar effect but in different ways.
Immunoglobulin is a normal part of blood - it's just another name for antibodies.With iViG, they infuse a load of healthy antibodies which swamp your crazy set, and this usually kick starts recovery in GBS. No one really understands why or how this works.... but it does.
Plasmapheresis filters the plasma (the liquid part which includes your crazy antibodies) out of your blood - and they replace it with health plasma.
There are two big parts to early recovery - stopping the body attacking itself (both therapies do this), and then the body must repair the damaged nerves.
Stopping the attack is fairly fast with either treatment, but plasma is said to be the fastest.
Nerve damage is in two main forms with GBS:
- Mostly it's demyelination where you can see recovery start fairly quickly - I have the chronic form of GBS, with most damage being demyelination - and I know to expect improvement to start 10 days after iViG. Thats when I know its starting, but GBS usually attacks the longest nerves (sciatic and ulnar) worst, and they take a very long time to repair fully - years for many.
- In bad cases the damage can extend to the nerve axons, and that's really slow to repair. It depends on age, general health, genes etc etc, but it's much slower to repair axonal damage, and sometimes it never quite comes back.
I understand your concerns at the speed of recovery, but this thing really damages those nerves and recovery just never seems to end. I'm close to a year now, and while I can see improvement, it's not exactly night and day - it's really, really slow.
Can I ask where you guys are in the UK?
Hi JameP! Were you diagnosed pretty quickly originally and receive treatment for the chronic form right away?
I was initially diagnosed with Guillain Barre, and given iViG when I started feeling the weakness in thr chest/diaphram.
The diagnosis of the chronic form (CIDP) only came when symptoms reappeared 4 months later. The treatment for both forms is the same mainly - the differences are to do with auxiliary drugs to extend your good periods between iViG sessions. Yhe other difference is that I was offered steroids as an option after they decided it was CIDP. They stressed that steroids are a bad idea for GBS, but sometimes work on CIDP. (but too many odd side effects for me),
My daughter is in Exeter, Devon
Thank you for your explanation, I didn't ralise the iViG and plasma infusions were to stop the attack. I think her attack was quite severe. She was still losing functions for a couple of weeks after going into hospital, jaw, tongue, eyelids.
Karen recently showed us she can shrug her shoulders and lift a thumb. Still can't spit so she has to be careful how she eats. Has a lot of pain, which I must admit the nursing staff are treating with great care and compassion, in fact, everything happening now is calm and dignified. I just needed to know that everything that can be done is... I understand now that it's a matter of waiting and the all important pt. Thank you for your description, beter than anything I've read on the internet.
Christine
JamesP said:
I'm not sure of the situations where they will move to plasmapheresis for GBS or CIDP, but I'm back in hospital next week and I can ask if you like. It may be that the hospital you're in doesn't have the machine, or the specialist people to run it.
They did it as a possibility to me, they said both are equally effective with most people. The reason they prefer iViG in the UK is that it has lower risk (only one cannula in the arm for iViG vs two big ones - groin and neck for plasma),it's less complicated to administer (plasma requires quite specialist machinery - some of it in the patient - embedded cannulas(ports) which can go wrong), and most people find iViG generally more tolerable. (I believe iViG is quite a bit more expensive in fact.)
They achieve a similar effect but in different ways.
Immunoglobulin is a normal part of blood - it's just another name for antibodies.With iViG, they infuse a load of healthy antibodies which swamp your crazy set, and this usually kick starts recovery in GBS. No one really understands why or how this works.... but it does.
Plasmapheresis filters the plasma (the liquid part which includes your crazy antibodies) out of your blood - and they replace it with health plasma.
There are two big parts to early recovery - stopping the body attacking itself (both therapies do this), and then the body must repair the damaged nerves.
Stopping the attack is fairly fast with either treatment, but plasma is said to be the fastest.
Nerve damage is in two main forms with GBS:
- Mostly it's demyelination where you can see recovery fairly quickly - I have the chronic form of GBS, with most damage being demyelination - and I know to expect improvement to start 10 days after iViG. Thats when I know its starting, but GBS usually attacks the longest nerves (sciatic and ulnar) worst, and they take a very long time to repair fully - years for many.
- In bad cases the damage can extend to the nerve axons, and that's really slow to repair. It depends on age, general health, genes etc etc, but it's much slower to repair axonal damage, and sometimes it never quite comes back.
I understand your concerns at the speed of recovery, but this thing really damages those nerves and recovery just never seems to end. I'm close to a year now, and while I can see improvement, it's not exactly night and day - it's really, really slow.
Can I ask where you guys are in the UK?
Glad to be able to help. Keep in mind that under the NHS, you can book yourself to see consultants here at the national hospital for neurology - prob best after your daughter is out of intensive care. This is not a common illness, and I can vouch for the difference it makes to be under the care of someone who sees this illness all day every day. I travel here from Berkshire - it’s further for you I know, but maybe worth considering a little further down the track.
All the best to you all. J