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My wifes Experience

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Guest

In June 2009 my wife experinced severe joint and muscle pain. Red eye soon followed. The G.P.'s best guess was some arthritic condition and she was reffered to rhumatoligist and an an eye specialist. Shortly after she was addmitteded to the local hospital because her potasiun and phosshate levels were high.

She was discharge after three weeks.

One week later she was again addmited to the local hospital \"what is going on this isn'normal\". At this point she could hardly walk and was losing her mental faculties.

The G.P. phoned me at six thirty and told me that her Litihium levels were at toxic levels and that I should take her toi A.E immediately. (She was on Lithium for severe mental depression)

And so it goes on. She was transferred to the Royal Liverpool Hospital and for the first and a half week was pretty much unconsciious due to the Lithium toxicity. It wasn't for another two weeks when she started to cough up blood that she was diagnosed with Wegeners.

At this point she went into cardiac arrest and needed a trachiotomy to help her breath. One month in I.T.U and she was released to a ward.

Here she started her recovery.

Cyclophosamide and Prednisolone have controlled the problem. Too early to say yet if it is under control yet. Just about to start on azathioprine which I think is oral Cyclophosamide. Does anyone have experience of this drug? What can we expect. As with most of the comments on this pag e most G.P don't kow of W.G. Is there any way w can educate the educated?

0 likes, 3 replies

3 Replies

  • Mepper
    Mepper

    Posted

    Hi,

    I was diagnosed with Wegeners back in Nov 2009,had suffered with severe joint and muscle pain and red eye for months before hand......anyway regarding medication i think its pretty much standard for everyone to be on Cyclophosmahide 150mg(mild chemotherapy drug) for at least 3 months and all going well then change to azathioprine with keeps the immune system low.. also you will prob start with high dose of Prednisolone(steriods) about 60mg this will be reduced over the 3 months to about 10mg again depending on your response.As for me I had no side affects from the cyclophosmahide as its much lower than the dosage you would get if being treated for cancer,

    as for the steriods..well you will prob put on weight due to increased appetite and be full of energy......all of the above is my experience with the medication but it can be different for everyone as are the symptons of the disease.You can expect to be on medication for at least 2yrs and will prob attend clinic monthly for blood tests to monitor the ANCA etc.

    On a positive note if you respond to med the outlook is good and things will improve...as for me I'm doing good but just lack the energy i used to have...BUT all my joint and muscle pain is gone and my eye cleared up.

    Hope this was of some help and hope all goes well for you.

    Mepper

  • JANETS
    JANETS

    Posted

    Hi, I too was diagnosed with Wegeners @ The Royal Livepool in June 2009 - I must have been in hospital around the time your wife was there too, it would have been interesting to talk. I had developed acute renal failure problems as a result of the WG so was on the HDU renal ward for a while then in and out over the next few months due to other complications. I too was given cyclophosphamide and prednisalone and have this month transferred from cyclo... to azathioprine, it's suppose to be more of a maintenance drug and does not lower the immune system as much as cyclo...so you're not as prone to pick every bug up. So far I feel fine, been back at work full time since January and just need to get some off weight now. Hope your wife feels good soon, Janet
  • jill_stone
    jill_stone

    Posted

    I started with mild symptoms of w.g in feb 2008 by july i started getting really poorly with breathing problems and sinus problems then the red eye manchester royal eye hospital first picked up on w.g i had cyclophosphamide last year from feb to aug with no problems except i was on 40mg prednisalone which caused weight gain and all the other problems. no problems at all with the cyclophosphamide. i have now been on azathioprine since last sept with no problems with it at all i have my monthly bloods at at present i am now in remission im still on 7.5mg of prednisalone but its saved my life the biggest problem i have is very bad swelling of the feet im not as active as i wasd 2 years ago and get tired quickly. im diabetic and the steroids have played havoc with that i was diet controled i have not worked up to insulin but with all i have gone through i have kept working a 4 on 4 off night shift 48 hours a week to all w.g suffers out there keep going life could be worse smile smile
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