diagnosed oct 2008 flare jan 2010

[brocky99]

Hi just thought I would introduce myself. My name is Lisa I was 1st diagnosed in oct 2008 after the usual cyclophostamide and prednisolone and all the other cocktail of drugs i went into remission Jan 2009 and was put on aza to maintain remission. Unfortunately I relapsed in Jan 2009 and the pred was upped to 60mg (now 25mg) and started fresh course of cyclophostamide so was take off the aza. My problem is this time it has done severe damage to my kidney and i will shortly be starting dialysis GFR currently 7%. I saw the consultant a fortnight ago and they still havent put me on another maintanence drug the cyclophostamide finished 8 weeks ago, I mentioned this to the dr at clinic last time and she said she wasnt even sure if I was being put on a maintanence drug, I thought this was part of the course. My 1st Renal Consultant said I would have the cyclo then go on aza for at least 2 years then just before I relapsed he left the hospital so now under another consultant who I havent seen for my last 2 visits but hopefully will see weds. This last fortnight since visiting clinic I have had several mouth ulcers and a rash on my chest and arms, which I think is another flare, cos this is how it all started, along with what I thought ws flu. I mentioned the itching to the doc but she said end kidney failure patients itch, which i know because i am constantly itching my back and legs but this itch is different and I have a rash, I think she was as good as saying I was imagining it. On top of that my local GP's surgery is useless not my doctor just cant get past the receptioninst, they r always messing up my prescription order. Went to pick up a script this last week and they gave me a script for some tablets I know was asked for by my consultant a month ago which I chased at the time and they said they hadnt received the letter but the date of the script was the day I rang. This is just one of several examples, so this is stressing me out. I went today for my Hep B injection which they received the letter from my consultant once again 3 weeks ago explaining the doses etc, and lo and behold get there this morn and they havent got the right dose so they have had to order it and I have to go back in a fortnight. The problem is I am worried about the rash and ulcers I am extremely tired and this week is not a very good week mentally because of the worries etc., so dont need any more things going wrong. Anyway sorry for ranting but really dont feel great physically or mentally at the mo and just thought if I get it off my chest it may help.

Thanks

Lisa

[elephant]

Hi Lisa, sorry to hear this. Is there a doctor that will listen to you? Find that doctor and have him/her call the Vasculits foundation ( website) one of them is Cleveland Clinic and my Rhuematologist is Dr Carol Langford- phone is 216-445-6056 or 216-444-5632. I think your having a flare too. I had a kidney transplant and I know what it is like to be in renal (kidney) failure. I had itching but no rashes...hope I helped.

[DEE]

hi Lisa i understand were your coming from everything here in uk done in slow motion. i went to and appointment 27th may and a consult said she would order u sound of abdomen as soon as possible got appoint 26th june !!
the receptionists are a DIFFERENT bred its like trying to get passed a brick wall although they are better now since i appeared at the surgery quite ill with blood clots on lungs which i did not know i had at the time now they are all easier to approach
yesterday i went to get blood results i need for a hosp appoint today ive been asking for since last thurs not there
i got a phone call back to say could i go in they had taken bloods last week but needed more as they forgot to request some of the test i needed
i have all my med but on a repeat prescription and make an appoint to see gp after each wg consult incase they need changing that way you dont have to go through recepionist
i hope you get the help you need very soon as you say we dont always have the strength or will power to deal with added extra like receptionist
take care of you DEE x

[Jack]

Hi brocky99 and welcome to the forum.
It sounds to me like you urgently need to see a vasculitis specialist with Wegener's experience. This is a tricky disease that can not be handled by the regular consultants and the fact that you are not on a maintainance drug is just plain wrong!
Someone will be along soon who can advise you about finding a specialist in your area. Please follow it up urgently before more damage is done. I too have had renal failure and a transplant. Dialysis is not a great way to spend your life!

[JanW]

Jack is right; pred without maintenance drugs will simply not do, and in fact was how people lost their lives before docs discovered the necessity of immunosuppressants in the treatment of WG. I don't know anything about the medical system in the UK, but I'm sure there are many here who do!

[Jack]

Sorry brocky, I did not notice that you are in the UK. You could try contacting the Stuart Strange Vasculitis Trust and ask them for a recommendation -

John and Susan Mills
West Bank House
Winster
Matlock
DE4 2DQ
Tel: 01629 650549
e-mail: jandsmills@btinternet.com


Stuart Strange Vasculitis Trust

[brocky99]

Thanks for your responses. I know I have to be on a maintenance drug. I see hopefully my consultant tomorrow, a fortnight ago I saw a different consultant and it was her that said they might not put me on a maintenance drug. When I first had relapse in January it was another consultant but he was only a temp and he said i would have cyclophostamide and the mmf. I did mention this at my last visit and that was when she said I might not get anything. Like I said I think it is back with a vengence at mo so might have to have some more cyclophostamide and maybe up my steroids, either way I am definately going to get it sorted tomorrow. I have read quite a lot about wegeners and renal failure and have been reading this site for quite some time and a few others along the way. I was in touch with Stuart Strange Trust when I was 1st diagnosed, so I do know some of the dos and donts but as the disease is so bloody complicated you learn something new every month or so. I have recently had my fistula op so I am waiting for that to mature and then hoping to start dialysis in a couple of months. I am so tired at moment which of course is the renal failure and the wegeners, the problem is I think is they cant differentiate between the symptoms because some are the same for both diseases. I will keep you updated on what they say tomorrow.
Lisa

[brocky99]

Just got back from clinic have spoken to my consultant and she has put me back on aza so will start these again tomorrow, I told her what last dr had said and that I have been worrying about it over last 2 weeks, she apologised. She thinks the rash is another flare not that i am completely over the last one yet so wg has just got worse again back in 2 weeks and hopefully the aza might have took hold by then and things might of settled down a little, will have to wait and see. They are going to put me in the queue now for my nearest dialysis centre so I dont think I will be too long off dialysis now. We discussed live donors but she said I cant have a transplant until my wg has been in remission for 12 months so wont be for a while yet, but it gives me time to try and find one anyway.

Lisa

[Sangye]

Hi Lisa, it's nice having you in the group. I hope you start to feel better being back on aza.

[Col 23]

Hi Lisa
Welcome to the group. Hope your feeling better this week.
Col 23