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Hello pwc51 thanks for your reply. Mark is on all that (calcium, folic acid alendronic once weekly). He'd agree with you that he doesn't feel very good for a couple of days after but better than the...

Hi Dirty Don, Thanks for your replies. Glad to hear you are in remission! Thats interesting, they never tried spliting Mark's dose to relieve the nausea. And its good that your rheumy is nice.

Hello Sangye, how are you? What treatment are you on? Was it ritiximab you were taking and it didn't suit you too well? Mark is in remission. He was diagnosed July 2010 and told he was in remission...

Hi All, sorry I've not been on this forum as much as I'd like to but I have trouble assessing it from some computers (don't know why that is), hence I'm on a computer at work that will actually...

I don't get on the forum very often. I'm very upset about Jack. Heart goes out to his family and to all the forum members who where close to him.

Rest in Peace Jack, you were a very special man...

Hi Chas

Just thought I'd give you the history of my husbands battle with the disease. He was diagnosed in June 2010 after 3 months being unwell. He had sinus only involvement. Symptoms were:...

Hi Barry. Thats great news that you are in remission and pred free. Long may it continue. :thumbsup: Yes, that sounds right, same as my husband - supposed to be 6 but he will be having 10.

Hi Marta

Sorry you are suffering so much and to top it off having such disgraceful treatment from the one you ought to be able to rely on to help you.

My husband's main symptom was the severe...

Hi Mickoko.
Thanks for your reply. Are you in remission?
Staystronglivelong.:biggrin1:

Hi ChrisTin@

My husband was diagnosed in June this year and he was put on cyclophosphamide and prednisone - he started on 60mg orally of prednisone but now he is on 10mg which has been being...

Mark also had no sense of taste for months leading upto his diagnosis and treatment and loss of hearing intermittently - he never went deaf but it would come and go like his ear felt blocked. Once...

Hi Marta. I read your blog yesterday and its very interesting to read. And well done with the clothing etc. I will definately be buying some items. I've just read the above post and thought I'd add...

Hi Sangye. My way of explaining things is confusing. I don't have waffle on :razz: Sorry about that.

Yes I'm sure they are not basing there decision on the ANCA - they know what they are doing.

He's ok thanks, he only had the diarrhea for 1 day. Blimey, you were only diagnosed 2 years ago. I hate Wegeners Granulomatosis and it breaks my heart when I read about children having it. The Pred...

Hi Jack. My minds happier now having heard you say 6 months is not unusual. I'm not questioning Mark's Rheumy ( not to his face ), just curious, I think we misunderstood when it was initally...

Thanks for your reply Geoff :biggrin1: I would say recalcitrant could be used to describe WG ! :thumbsup: Are you in remission at the moment? I just worry about him getting more chemo than is...

Hi Elephant. Are you in remission? He's not having wegeners symptoms. He always feels abit unwell after the pred has been lowered - the consultant says that is pred withdrawal. He's not had any bad...

Hi Guys. I went with my husband to his most recent infusion of cyclophosphamide ( his 6th infusion). Its good news as the consultant said he is very pleased with his progress. :w00t: He told us that...

Congratulations on reaching remission - hope you stay there for many years with no flares. x

Hi Malin

I'm by no means an expert but it seems odd to me that they want to put you on cyclophosphamide. How long have you been being treated? My husband started on cyclophosphamide intravenously...

Small world. Maybe one day if we came over from England on a holiday we might one day meet. :biggrin1:

Arr, glad that arnica is ok. Although a magic kiss ( and a cuddle ) is probably the best medicine. :thumbsup:

How are you today Sangye? I have been to maryland, usa, its where my husbands brother...

Hi Sangye. My husband also puts vaseline up his nose after he's used the NeilMed Sinus Rinse. Interested in what you said about vaseline being toxic stuff. Every time my little girl (who is 17 months...

Approx 6 months before my hubby's diagnosis with WG, his cousin was diagnosed with sarcoidosis. It seems odd - cousins both having autoimmune diseases. I do worry about my daughter and hope that Wegs...

Hi Freakyschizogirl

Sorry you've had to come and join us. We are a good group and you will find excellent help and advice on here from people.:thumbup:
I'm wishing you all the best and hoping...