"I believe that I have seen a negative attitude kill people, but I don't think that a positive one will cure you. However, I know that it Helps". Jack
That is interesting drz. I didnt even think about antibiotics or future infections. Let me now what your consultant says ongoing. I would be interested to know what the latests research says. I didnt tolerant AZA or Mycophenolate. I'm too young for Cytoxan. This latest round of RTX has knocked me out a but more than i was expecting although i worked out it was my 12th infusion in 6 years haha! So that might explain why.
"I believe that I have seen a negative attitude kill people, but I don't think that a positive one will cure you. However, I know that it Helps". Jack
Oh it is most definitely about money - a single round of RTX costs the NHS £3,000. £1,000 of that is just for me to sit in the chair for 6hrs. Its madness. I'm fortunate that i come from one of the bigger/ richer counties in the UK. Sadly lots of other people are less fortunate in other parts.
The Prof didnt seem too concerned about yearly infusions. Although i think his thinking has changed somewhat over the years as a few flares ago he did not like to overuse RTX but now its different.
"I believe that I have seen a negative attitude kill people, but I don't think that a positive one will cure you. However, I know that it Helps". Jack
"I believe that I have seen a negative attitude kill people, but I don't think that a positive one will cure you. However, I know that it Helps". Jack
maybe we can make our own poll: we have enough weggies who are on rtx for many years, we can make a poll asking: how many years do you have wg, how many years are you on rtx, in what frequency, what changes do you see over time - for better, for worse, do you think that the rtx is still as strong treating you as it was in the beginning ? etc. just need some technical help in building the poll. what do you think, my friends ?
Alysia
dx 2008
Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
"You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.
Alysia
really it is good idea, we should ask for RTX for remission induction and RTX for remission maintenance both.
first we need to think about all the questions that we want to ask. then we need to build the poll - where is andrew ? is it possible ?
thanks for your input nagesh.
Alysia
dx 2008
Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
"You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.
Alysia! Brilliant idea!! I LOVE it!
Andrew can we somehow have a way to create polls? That would be fabulous info to be able to access!!
Where do you get these brilliant ideas Alysia! Bravo!!!
Last edited by Gab122; 09-17-2016 at 09:35 AM. Reason: could be misunderstood
Trust in the Lord with all your heart
and lean not on your own understanding;
in all your ways submit to him,
and he will make your paths straight.
Proverbs 3: 5-6
Survey Monkey?
Ya know what i was wondering about today - (this could be a Poll) .... They say that GPA might be 'activated' by an infection or environment/chemical or such.... I wonder if any of you all recall an infection prior to your symptoms starting that eventually led to GPA diagnosis? I don't think I had any infection myself before my May symptoms started in my ears. I don't think I had any chemical exposure but have I used spray paint w/o fully following directions/ or cleaning products? yes... If we had a poll here, maybe we'd get down to the bottom of what activates this disease? Maybe we all had something weird in common like owning bearded dragons w/ fungal problems at some point prior to the disease starting. I did.
Maybe we could make some great contribution to understanding this disease!
Trust in the Lord with all your heart
and lean not on your own understanding;
in all your ways submit to him,
and he will make your paths straight.
Proverbs 3: 5-6
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