Wegeners granulamatosis

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Since starting treatment of Cyclophosomide, prednisolone and other drugs I suffer from dizzy spells several times a day, sometimes they are so bad my legs give way and I fall. Does any body else suffer with the same problem. Fiona bruce

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  • Posted

    Hi Fiona

    Are you having 6 doses of intravenous cyclophosphamide given about every two weeks? This plus the prednisolone gave me similar symptoms to yourself, but not so severe. You should stick to the medication and hopefully you will come to remmission of this dreadful disease. I was diagnosed with it about a year ago, although I had not been very well for a few years before that. I posted my details on this website on December 5th last year and you may care to read what I have said. I am going towards remmission now, but got my fingers crossed that I don't suffer a relapse. I wish you well and sincerely hope the treatment works for you after your present difficulity, which I'm sure will pass once you get on reduced medication.

    Sincerely - Mo Grant

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  • Posted

    Hi Mo,

    I have been having Cyclophosamide 150mgs daily in tablet form plus 60mgs of prednisalone which has gradually been reduced, Im now down to 15mgs of prednisalone and 100mgs of Cylaphosomide, I started treatment over 4 months ago. Still having giddy spells.

    Fiona Bruce

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  • Posted

    Hi Fiona

    Just been re-reading our postings and wondered how you were getting on. I go to the vasculitis clinic every 5 or 6 weeks, where they attend to the Wegener's patients (I think I'm the only one!) and according to the consultants who check my bloods etc, I'm doing ok and the prognosis looks good. I've had treatment since June 9th last year and am now down to 5mg prednisolone, 2 x 1000mg of mycophenolate mofetil tablets, 2 tablets of Adcal-D3 and one 2.5mg bendroflumethiazide tablet per day, together with 70mg alendronic acid once per week. Generally, I feel ok, but get very tired when I try to do anything. Like yourself, I keep a sharp look out for any signs of this dreadful disease returning.

    I hope you are progressing well and would love to hear from you.

    Kind regards - Mo Grant

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  • Posted

    Hi Mo.

    Glad you ar doing ok, the dizzy spells have stopped at last, Im on 7 1/2 mg prednisalone 175mg Azathiprine , Septrin and the usual preventative osteoporosis drugs plus Felodopine and doxazosin for high blood pressure, I am much better although I have had a few ups and downs with infections-chest mainly, Ive had 2 cortisone injections in my hip for bursitis and recently had an infected cyst lanced but over all Im an much improved .

    Havnt much energy but hopefully that will improve in time.

    Nice to hear from you.

    Fiona

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  • Posted

    Hi Fiona

    Just read your latest posting and I'm glad that you are making good progress, so I hope you keep it up!. I went to the vasculitis clinic last Wednesday and the consultant said I was making steady progress towards remission, but that it would yet take a long time. So I will be on the same medication for ages.

    Like yourself, I feel ok most of the time, but occasionally get very exhausted and have to rest for a couple of days. But I have regained my interest in things that I used to do before the onset of

    Wegener's. I used to play classical piano and had quite a repertoire of music, Chopin, Schumann, Beethoven etc which I could play quite well from memory. Since wg, I can't recall them at all, but need to learn them all over again! Still, it keeps me busy and I read a lot and do DIY jobs around the house. I used to swim a lot, but I have not done so since I was discharged from hospital last year as I get so tired, but next year - who knows?

    Keep up the good work Fiona.

    Regards - Mo x

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  • Posted

    Glad you are getting on slowly, I was told it could take up to 2 years to go into remission, hope its not that long.

    Have you had a flu jab, I was told by my GP and one consultant it would be ok to have it and by another not to, I went ahead and had it without any problems apart from feeling even more exhausted than usual, I find Im a bit better as the day goes on, first thing in the morning is not so good. smile

    Have been going to the Renal unit every 2 weeks for 9 months now but now can go monthly which is a good sign.

    Hope you are enjoying the piano again.

    Take care.

    Fiona

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  • Posted

    Hi Fiona

    Just read your latest posting. Two years for remission? That's a long time, although I've been having treatment for about 17 month's so I could go into remission sometime next year.

    No, I haven't had the 'flu jab because the consultants at ** ****** advised me against it. And I have not had a the jab for many years now. I used to, but several years ago now I became so ill with it that I thought I may as well have the 'flu! I had this particular jab in the morning, but by the afternoon I was running a high temperature, shivering and felt awful, so I went to bed for a few days and didn't feel very fit for all that winter.

    Glad to learn that you now have to visit the renal clinic every four weeks or so - that's a very good sign. Regarding your tiredness, I think that is normal for most wg patients. As for myself, I feel ok in the morning, but by the afternoon, I'm so exhausted that I sometimes have te repair to my bed for a few hours!

    I hope you keep making good progress Fiona.

    Regards - Mo

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  • Posted

    Hi. I am 81 & was diagnosed with WG in May 2006, and have had very good treatment at the renal unit locally, I have been in remission now for over 2 yrs. and still on Cellcept, which I am told will be ongoing. But overall I am quite well, so my advice is keep taking the tablets, unless they have side effects, there is generally an alternative, eat well, I was told that I have to maintain a good body weight, or it could return. It is not good to have , but it is not the end of the world, and treatment is improving. Good Luck. Keep Smiling
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  • Posted

    Hi JuneK

    Have just read your posting. I'm 84 and will soon be 85! I was diagnosed with Wegener's early in 2009 and had aggressive treatment to start with and am now on 5mg Prednisolone and 2 grammes of mycophenolate mofetil (initially Cellcept but the pharmacy recently changed this to Myfenox), plus some other drugs. I go to the hospital clinic every 8 weeks now and wg is being kept under control. I don't think I am near remission at the moment, but your posting gives me hope that I may achieve this within a year or so.

    Best of luck to you and regards - Mo Grant

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