first time on the cidp site

Hi, Donna, and welcome to the family.

I haven’t taken Rituximab myself, but know of several who have, and for whom it was a miracle drug. DocDavid is one (he’s been very unwell with other problems and may not be able to post himself, but you can probably find his responses here and on the UK forums by doing a search)–nothing had worked for him, and he was nearly bedridden before he took Rituximab.

Side effects are always a concern with any drug, but when weighed against the problems of CIDP it can often be the lesser of two evils.

Best wishes in the battle,

Deb

Hello Donna!

We have had at least two very interesting threads about this drug\treatment.

Click on “Search” on the blue line above and look for

[B]Cellcept VS. Rituxan [/B](started October 10th, 2006)
[B]Rituxanisms[/B] (started July29th, 2006)

Hope this will help you, if you need to find out more, we might be able to give additional information.

Good luck!:)

Donna, as Deb says, I was quadriplegic and had carers to wash, dress and feed me. I had nothing to lose. also my daughter instructed me to be able to walk her down the aisle some months later. ( I could hardly even sit up unaided). I had 4 rituximab infusions three weeks apart, the main side effect is sudden death from anaphylactic shock, it would have been a happy release from this prison. The crash trolley was standing by, I had I/V cortisone and antihistamine, on the first evening I could move my hand after the fourth I could stand so employed a physio to teach me to walk; I walked Jane down the aisle with her on one hand and a stick in the other both of us in tears. That must be three years ago and the CIDP is unchanged since, it must have burnt itself out,
Other diseases have taken over, I travel two hours to hospital three days every week for kidney dialysis, this has caused a rare complication of angiodysplasa causing me to bleed 6 pints a week from my guts and ransfusion at dialysis, thank God for donors, I have had over 130 pints transfused. Also my pleura and pericardium are calcified so instead of a fine flexible membrane my lungs and heart are encased in plaster of Paris making breathing very difficult so I have oxygen cylinders around the house.
The permanant heart failure has caused back pressure on the liver so I have cardiac cirrhosis making me vomit frequently,I have lost 25kg in weight.
CIDP still paralyses my hands and causes sensory loss with loss of balance, but it is no longer the major problem. DocDavid

Here is a picture of Doc David with his daughter.

[IMG]http://www.gbs.org.uk/iB_html/uploads/post-5-31224-bod_scottcol.jpg[/IMG]

[QUOTE=DavidBod]Donna, as Deb says, I was quadriplegic and had carers to wash, dress and feed me. I had nothing to lose. …CIDP still paralyses my hands and causes sensory loss with loss of balance, but it is no longer the major problem. DocDavid[/QUOTE]
i know this was not the original topic here, but … wow, i’m inspired and awed by your perserverance and modesty. perhaps its the stiff upper lip and the knack for understatement the brits have developed.

your recent in-law is one lucky fellow to marry into such a great family – nice photo courtesy of your northern dominion. may god bless you and yours.

i have met online another fellow in the southern uk – he’s a computer/biker guy, and just a wonderful human. must be something in the water or perhaps all the sunshine you folks get that the rest of the uk does not,
ferenc

May God bless and keep you, David. You are such a fighter, and you inspire the rest of us so often.

Suzanne