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Update & another one goes to Addebrookes
Hi,
Thought I would do a little update, I have just come back from an appointment with the vasculitis center at Addenbrookes hospital at Cambridge, got to see Dr. David Jayne!I also ended up seeing two ENT specialists (jonny and marcos) as they had asked the nurse specialist to "look out for any weggies with ENT involvement" today
It was such a good experience, all the doctors and nurses were brilliant, friendly, nice and very very good! It felt so weird but sooo good to be in a place where everybody knows about Wegs for real (not just what they heard on study day or read online... you know what I mean).
Since my flare this summer my kidneys have been improving but Dr Jayne was wondering why my doctors hadn't done a biopsy and he said I will most likely need to have one done, so he can get a better idea of the damage done etc I suppose. He did say we should monitor it for a bit longer to see if the creatine levels go back to a normal range, at my last blood test it was around 138 and I think it should be under 90? If it does go to a normal range then I might not need the biopsy, at the moment.
Also, I am currently on daily: 40 mg pred, 50mg Aza (imuran), 30 mg lanzoprazole and 480 mg bactrim (3 times a week) + had 2 x 1000mg rtx infusions in july/august.
The doctor said I should stop the Aza straight away and he wants me off the steroids at the end of the year, if possible. I am also going to have more RTX, I think infusions every 6 months or so for about 2 years.
I might need to change antibiotics as I am having some issues with my sinuses, they took swabs and would be in touch. Other than that, if things go well, I might be "tablet free" at the end of this year!
The ENT's were great and I've got to use daily sinus rinses, an antiseptic cream (can't remember the name), nose drops for 3 weeks and then a nasal spray for a while, to clear any infection/inflammation. They did say my sinuses were a bit irritated - red raw-y looking and very sensitive so they didn't want to do anything too "strong".
I can't stress enough how good it feels to know that I now have a proper good place "to go to" if I ever have any questions, have a flare, need to be seen quickly etc. I am not really that unhappy with my local renal and rheumy but they just don't have the same knowledge or facilities available. We are going to keep my local doctors and Dr Jayne said he would get in touch with both my renal doctor and my ENT to "establish" a relationship and then I will probably be seen locally most of the time and maybe twice a year at Addenbrookes, unless something pops up of course.
Will be interesting to see what my renal doctor and rheumy has to say, as I have an appoinment with renal on Monday and then Rheumy not long after, my rheumy has even said several times that he thinks I will have to be on a low dose of steroids "forever"!
All in all I am very happy and sooo glad I finally asked for and stood my ground on getting the referal, being able to get the input of a specialist is invaluable, if it wasn't for him I would have ended up taking Aza for years for perhaps no real benefit or reason.
That's all I can think of at the moment
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Originally Posted by mishb
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