Posted , 4 users are following.
I have been trying to join this site for some time but whenever I do I get connstant messages saying I have entered something wrong.
I just want to talk to people about Wegeners. How hard should that be???
0 likes, 3 replies
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fiona_bruce
Posted
Hope your treatment is helping, its a long steady course but we all benefit from it.
take care
Fiona Bruce
Mo_Grant
Posted
Just read your recent posting and Fiona Bruce's response. There are many people on this site who, I am sure will support you. As for myself, I was diagnosed with Wegener's granulomatosis during May last year. I was rushed to hospital suffering from pneumonia, as the doctor's thought. I was treated for this complaint, but got steadily worse until I was examined by a visiting renal consultant, who immediately diagnosed Wegener's. I was then transferred as an emergency to another hospital, where I was straightaway given a large intravenous dose of corticosteroids. Next morning, this was followed by a heavy dose of cylcophosphamide given intravenously and I immediately felt a little better, bearing in mind I was close to death when I was transferred to this particular hospital. To cut a long story short, I had complete blood plasma exchange over 3 days, followed by a blood transfusion, 5 additional doses of cylcophosphamide, a kidney biopsy, scans, x-rays plus oral doses of corticosteroids and other drugs. I was discharged from hospital towards the end of June last year, but have to attend the vasculitis clinic at this hospital every few weeks.
I am now going towards remission and feel very fit, although I do get very tired from time to time. This may be due to the drugs I still have to take and these are mainly 5mg per day of prednisolone, 2grammes per day of Cellcept (mycophenolate mofetil) plus several other drugs.
Once you start the correct treatment Dennis, I can assure you, as will other patients on this site, that you will feel much better. It is a long haul, so be prepared for that, but there is light at the end of the tunnel. Keep your chin up and think positive.
Sincerely, Mo Grant.
Debbie_Ley
Posted
Like Mo I too had Plasma Exchange but over 7 days. Was so cold after each one they had to wrap me up in foil blankets like a turkey. 3 transfusions Kidney biopsy, I had 3.5 months of Cyclophosamide. copious amounts of steroids which blew my face up so much that people didn't recognise me. I had not long given birth only 9 weeks previous. So my body had been through the wringer big time. nearly 2 years later I am as fit as a fiddle. I was trying to cycle 40 - 60 miles a week on my road bike and i cycle as hard as . I want to take part in sportive events next year. I am doing the moonwalk in Edinburgh in June which is 26.2 miles of power walking through the night. I work nights and am a single mum of two. I get tired but I do have alot on my plate but hey Im still here and to a certain extent WG has made me get off my butt and do more things as life has been put in perspective. I am a more empathetic person to others who have illness too. I am firmly in remission which didnt take me long and am on 5mg pred and 100mg of Azathioprine. I really am back to normal. good luck Dennis and chin up.. Debbie