Just to have a nag

This is not a question so you don't need to answer, but when do we stop fighting this awful disease. I have once a gain got a call back from my doctor and after all my problems with pain and of course the horrible rash and fatigue, I have now been told the W.G. is affecting my kidneys as well as the rant I had about the prednisalone causing problems with my lungs. It seems like everyday now the doctors are finding something new and supplying me with more tablets. I honestly have a spare cupboard now which is getting completely full with medications.when does it stop and the shame of it all is I used to be such a fit and active man. I am now in the process of setting up a season ticket at my doctor's.

11 Replies

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  • So sorry to hear the WG is affecting your kidneys Dave...WG can have a habit of hitting you when you least expect it as John has found out over the years.

    John has WG too..he was diagnosed in 2001 and for 5 years he had to take oral Cyclophos after the initial infusions because nothing else would control his WG. Luckily his kidneys were not affected but the WG began in his lungs, and he has scarring and shortness of breath.

    After 5 years they tried John with Mycophenolate which seems to work for John and he still takes it today.

    In 2007 John had been taking the Mycophenolate for about 12 months when he was taken poorly and his leg became swollen...he was diagnosed with a DVT, after the initial treatment to control the DVThe was prescribed Warfarin. He still takes the Warfarin and will probably take ti for the rest of his life. The DVT was caused by the WG.

    In 2008 John was diagnosed with a carcinoma of the bladder this was caused by repeated long term use of cyclophos and he had to have an operation and chemo to follow the operation...

    Then in 2011 he had two more carcinomas of the bladder and two more operations.

    Over Christmas and New Year John had 2 UTI infections, a chest infection and tonsillitis which really set him back for about 8 weeks.

    The positive side is that after 10 years of taking prednisolone John finally came off them 12 months ago after tapering down very slowly. In March of this year he has just started to reduce the Mycophenolate. He still takes the high blood pressure medication and the Warfarin, so from taking about 28 tablets a day he is now taking 12 tablets a day.

    Like you John was very active, renovating our house and had only ever had 2 days off sick in his whole working life before WG.

    Unless you have any type of Vasculitis or live with someone who has it then it is impossible for anyone else to understand. That is why having the Vuk/HU group and the fb group is such a good place to have a rant!! Just take care and hopefully things will get better soon.

    Susan :-)

  • So sorry things are going badly at present Dave. It's a crappy condition and we're all justified in feeling a bit down from time to time. Looking on the bright side, a season ticket to your doctors could be better value and more use than a season ticket to Chelsea?!

    Hope things pick up for you soon. Best wishes (a Spurs fan!)

  • Dave, this is fairly new to me as-well! it has been a night -mare but think you just have to wok with it and live and enjoy each day as it comes. You are not the only one with a cupboard of medication. I have so much I have a draw in the kitchen where I have my used boxes of medication and weekly put all the tablets in a dossett box, as I feel we need to follow what the GP's, consultants have prescribed for us. Another tool I have is always to carry a printed out list of my medication and on the back the times that I take them - so if you have to get to hospital you have all the information you need. I use an iPad which I take everywhere with me and all my notes for GP's Doctor's Consultants, which I update and when you have an appointment you have what has happened, how where why etc... which I have found positive with my consultants, I bleed so have photographs of these to show them.

    UK Vasculitis has helped me greatly, as they seem to be the only people who know what this does to one! I was also a fit man Rowed for my country and did almost every sport, including running 20 milers, cycling home 90Km and now sometimes find it hard to go out.

    Keep fighting it but at the same time BUTT respect it?! as if you have to stop - STOP!!! it is just like that; you must continue to enjoy every day you can. Take care and hope there is something useful here for you??!

  • Sorry this is happening, Dave. Sounds like one of your bad days or weeks. I too have joined the patients at the pharmacy who collect large bags of medications each month. I used to wonder, pre vasculitis, how someone could possible need that quantity of drugs.

    Wouldn't we all love a miracle cure? I sympathise and wish there was more I could do to help. Keep smiling and keep us posted.

  • I too have asked why many times, there are no answers as to one day you are fit and working the next you are told there is no cure for you and hospital aapointments become your social life. Its ok to rant and rave be angry. If you took it in your stride you would not be normal. When people ask me if I am ok I alwas well I am still here, dont know how with two dosette boxes of medication, falling asleep at any time and some days just breathing is an effort. We are here for you to have a go at and I dont mind in the least.

  • Thank You all for your comments, I was having an unpositive day yesterday. I know I have to fight it but there are those day's when it all just gets you down and with locum G.P.s seeing me from my doctors surgery and not understanding or even knowing what vasculitus is you feel like banging your head against the wall and you just wish for the day you see your specialist (who in my case is an exceptionally good consultant), But anyway I have had a sleep and feel a bit more positive today. Thanks for being here guys and girls its good to know you have support somewhere and like Bigusg say's "Its better to have a season ticket to than doctor's than it is to Chelsea". Off for my bloods to be done catch you later everyone and once again thank's. :-)

  • Sorry to read you are having a bad time Dave. I'm also a WG sufferer and I, like the others who have commented above, completely understand how you are feeling. I'd never had any kind of illnesses either, other than the usual colds etc until I got WG which badly damaged my kidneys and like yourself, and everyone else, I feel absolutely dreadful sometimes :-( Other days are easier to cope with though :-)

    I believe it is totally acceptable to have a rant, I still have days where I cry in frustration of not being back to 'me' but I am alive and kicking, albeit weakly, so I am just grateful for that.

    It's great that we have this website and the FB page to let off steam, which we all need sometimes.

    Take care and keep fighting :-D

  • My blessings go out to you all who suffer from W/G i do not suffer myself, but have seen first hand what it is like, my father in law recently passed away to complication at only 54, he left behind a loving family and is terribly missed. You are all brave and the awareness of this disease is little a miracle is needed for you all x

  • Hi like your self I worked for 28 years . And can say in that time I would have been lucky to have a week sick in that time. So much so . Our health centre was open for 8 years before I had to visit and ask the receptionist who my doctor was as the one I he'd seen years ago had retired. On my 50th birthday I was rushed to hospital by ambulance and what's told I would have not lasted another day and a half . So happy birthday. As medication goes like yourself I have a box full at present I take 37 per day but that's good as it was 43 ya hoo.. Like. Your self ism so often at the health centre think might get invite to there xmass night out so your not alone . The only way to look at it every time they take a tablet off you that's a good day so keep up the good fight as remember you are not alone. And you never know might meet you at a xmass party ha ha

    Good luck Bill

  • Sorry to hear you are suffering Dave; in answer to your question.....I don't think this condition will ever 'get better' or leave you, sorry to be a bringer of bad news! Sorry to hear about your kidneys; I know all about that have been on dialysis for about three years now! However, on a brighter note, you are still alive. I know there will have been a lot of changes, to your life, with maybe more to come but try and be possitive; a lot of people 'worse off' and all that. I'm sorry that i probably haven't been much help but if I can be of any further help let me know.

    In the men time good luck and keep well

    Andrew

  • Well guys after goings for my bloods to be checked, I was rather surprised when the FOLLOWING day my surgery phoned to tell me they had faxed my blood test to my local hospital and I was to go to the urgent care unit had they wanted me admitting my red cell count had gone up to 21 and my white cell count had gone to 4. I arrived at the hospital was immedaitly admitted and sent for yet another round of X Rays a full MRI scan and blood cultures and a spiro thingy magiggy (can't remember the proper name of the test) all showed I had the beginnings of a chest infections and you know what its like I was booked in hospital for four days put on a round of aggressive broad spectrum anti-biotics and my bloods were again taken each day but, I am glad to say I'm back home now and the infection has nearly cleared and only a few more days of taking the anti-biotics so alls well and I maybe able to get out in the garden today seeing as how it is nice and sunny

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