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I am glad you have good family support Barry.
Oh the indignities of illness Geoff LOL
Jolanta
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Well I'm pleased to report the parcel has 'winged' its way from these shores, never to be seen again. In a more sensible manner I can report that of late I have been 'flaring' as I got my pred down to 5mg and the immunosuppresant (azathiaprine) at 150mg daily. Nothing to get out of my tree about, but just felt like I was dragging my knuckles on the floor and living about 1/4 of a life. Then I got the joint pain back and that was a reality check. The worst syptom I experienced (apart from coughing up blood) before my DX. Antway saw Dr Jayne today at Addenbrookes today and he has increased my pred to 20mg and perscibed a gradual increase of the Aza to 200mg and then 250mg daily. I started on MMF (Cellcept) and have been on Aza all year but he says that it the increase doesnt get my markers down then he will put me on Retiximub. He said that my Kidney and Lungs were going well and then after my blood work he sent me down to see the ENT guy (jonny) who is a real laugh. How anybody can maintain that level of humour whilst they peer up peoples noses is beyond me! He took some nasal swabs and then gave me the results of my recent sinus scan. Everything looks good and no 'perforations' etc caused by the Wegs. Dr Jayne doesnt want to see me until the middle of Jan (must be because of the Optician joke!) but wants an interim blood test to see how I'm going. Got to watch out for any tummy pain possibly attributal to the increase in Aza. It was good to see him today as he answered all those sort of questions that ping about your brain. They have over 250 Weggies on their books at Addenbrookes and so I feel reassured that they are working with practical experience and not from a guide book. So I am going to celebrate by letting off a couple of rockets in the back garden, well it is Guy Fawkes Night!!
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I´m allways curious to learn something new, and so I read that Guy Fawkes Night is the celebration of the anniversary of the failed Gunpowder Plot of 5 November 1605.
Hope you have a beautifull evening, with lots of great bonfires!
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He was a Terrorist driven by his religious beliefs. Nothing much changes does it?
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Nothing much changes indeed.
We 've all seen it before...
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Forgot to mention that when I went on friday I got chatting to Jane who does my blood work and she gave me an update on my DNA sample. I agreed to give this about 5 months ago as part of a research incentive being undertaken at Addenbrookes. As we know only too well, there is no one clinical test to correctly diagnose WG and also, from reading thru this Forum, it is apparent that an nearly diagnosis is critical to management of the disease. Adds have about 1,000 DNA samples from the UK taken from weggies and I think the other group was PMA? (not too sure about that, but apparently very similar in the vasulitus group). They are scanning thru the DNA to try and identify any common 'markers'. This will hopefully give the docs a chance for a quick but accurate diagnosis for anyone suspected of having the illness. They also have a DNA pool drawn from throughout Europe (1,000 samples) which they will use to hopefully ratify the earlier results. Who knows, they may even get an insight into the disease which may lead to even better things!!
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Thats amazing. And brilliant news for us!!
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Well I hit the 5mg Pred wall last week with the same results..AAAggghhhh! I couldnt finish 2 weeks at that doseage as I had very high Tinnitus, felt weak as a kitten and a 'Pressure Cooker' headache that would not go away. I stuck with it for 5 days and then called the Clinic at Addenbrookes. They saw me the next morning and although Dr Jayne was flying off to the States, he looked over my notes and made some recommendations.
My feet didnt touch the ground as I saw Dr Trividi, who said that it was probable that I would have to go onto Alemtuzumab (I will be admitted into hospital for the infusions shortly). I was then off to the next Clinic to see Jonny who 'scoped' my nose and checked out my ears. Evidence of some infection but overall not too bad. Had my bloods drawn, picked up a perscription, and then had a chest X-Ray and out of the Hospital in just over 2 hours...Hurray for the NHS!!!!
I have had to bump up my pred (now 20mg) as an interim thing which sucks but there you go.
I have been looking for some info on Alemtuzumab, anyone had any personal involvement with this drug?
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I have never heard of Alemtuzumab Geoff. Do you know if it is similar to Rituxan or Rituximab?
Phil Berggren, dx 2003
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I haven't heard of it either. Why didn't they go with the usual drugs?
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