Glad to be diagnosed

**Geoff** · 05-16-2011, 05:44 AM

I guess I will find out more Sangye when I get the call to go back in. We discussed Rituximab with Dr Jayne back in Feb and I looked set to go with that, perversly I then had my best run of health since DX in April 2008. I am guessing that they may want to keep RTX in the locker for if I get a 'big flare'??

Apparently Alemtuzumab (aka Campath) has been used with success from Addenbrookes from the mid 90's (apologise to anyone who knows more about this drug and I'm talking outta..) There is also the cost factor in that RTX costs approx £10,000 for a course of treatment and I would have to get the approval of my PCT.

And compared to so many, my involvement with Wegs palls into insignificence, this drug would appear to fit the bill, and I am of a mind that if Dr J says so, then thats fine by me!!! I'll fill in the gaps when I next go to Cambridge.

**Geoff** · 10-28-2014, 11:43 AM

I felt compelled to "go back in time" after all these years and revisit my first posting on this amazing Forum. It enabled me to weigh up the experience, the drug regime, the friends I made along the way (Some sadly no longer with us) and also gather my thoughts about my journey since DX in April 2008.
Reading my above post came as a shock as I was admitted into Addenbrookes to begin treatment with Alemtuzumab with the endorsement of the senior consultant who informed me that about 70% of the patients then go on to a drug free remission! what could go wrong? sadly I fell into the minority 30% and it was a very dark day when they informed me of the fact.
By this time, late 2011, I had gone along the top shelf of drugs available to us WG sufferers and repeated cyclo infussions and to say I was getting a bit scared would be an understatement. Fortunately I started RTX in the February of 2012, the same day as our first Grandchild was born, how poetic is that. I am delighted to report that 2 and half years down the line we are both doing well!! I have had to retire from work ( i am 63 now) and we get by on a couple of small pensions. Life is good and although the past 2 years have seen some ups and downs (3 chest infections at the start of this year), I was delighted to visit the Clinic at Addenbrookes last friday where they told me that they didn’t want to see me for another 4 months, the longest I have been between clinic visits. My ANCA is negative, I have tapered down to 6mg of pred ( In 6 years since DX I have never got below 5mg, but hey its only a number!).
We recently travelled to Greece to stay with my Son in Law's parents and I was shocked and delighted to swim every day and towards the end of the week, I managed to go round the buoys at the end of the bay, about 600ms in total. My aim now is to try and lose the 42lb that Mr Pred has kindly given me!
Its easy sometimes to slip into a dark well of despair with this illness but I have tried my best to keep a positive frame of mind for most of the time, and when I haven’t I have been fortunate to have had some excellent counselling and medical care, as well as the support of my family. How Lucky am I

**Debbie C** · 10-28-2014, 02:12 PM

And how lucky we are to have you here with us Geoff ( sorry the disease brings us all together ) but what a great support group we have. And so glad that your holiday inspired you to push even further. Now you'll have to join Pete's workout post !

**Pete** · 10-28-2014, 03:02 PM

Originally Posted by Debra C

And how lucky we are to have you here with us Geoff ( sorry the disease brings us all together ) but what a great support group we have. And so glad that your holiday inspired you to push even further. Now you'll have to join Pete's workout post !

The more the merrier!!

**marta** · 10-29-2014, 05:22 AM

Love ya Geoff! How lucky are we indeed!

**vdub** · 10-29-2014, 10:16 AM

Very good, Geoff! Its really nice to hear some good reports.

**Geoff** · 03-01-2015, 09:22 AM

Well here we are again, those of you who know me well will recall that I want to stay positive and upbeat, although sadly that cannot be the case 24/7.
Returned from Addenbrookes yesterday on Cloud 9. 12 months after my last RTX infussion and still going strong. The word Remission was thrown into the air and I grabbed it! Still on 6mg of pred but given the all clear to slowly taper. 7 years since DX and never been below 5mg so watch this space.
I make no apologies for posting an upbeat message as my wife and family have supported me through thick and thin and it would be an injustice if i didnt punch the air and celebrate my good news. Sometimes we put the Wegs dog firmly in its kennel and today, Rare Disease Day is quite appropiate that I do just that.