What does remission mean to you?

[JaneLE]

This is more of a pole I think, it would just be nice to hear how people in remission feel and what if any impact their vasculitis has on their life whilst in remission.

Its a sunny day and I thought it would be nice to hear some positive views.

[John_Mills Volunteer]

John has been in clinical remission for 6 years now and been prednisolone free for 2 years. Had lots of ups and downs in the first 6 years, DVT and carcinoma's of the bladder BUT he has been working so hard for Vasculitis UK this last 4 years, enjoys holidays and has lots of fun with his two little grand girls, we have them every week. We even go swimming now with the girls. He still has days when he has to have his horizontality time in the afternoon, cannot stand for long periods and cannot walk up hills. BUT he is very interested in all aspects of Vasculitis, talking to doctors and listening to people talking about their experiences and problems with Vasculitis. On a sunny day like this you will find him in the garden making plans for the summer...

Susan x

[Annie-F]

After years of struggling to even get WG under control and suffering terribly with it I was finally able to enjoy a "normal" life after receiving Rituximab. 7 years of total remission - 6 of them drug free!!! I'm still in my 20's and although I feel very lucky to have the life I have, having a repalpse is always at the back of my mind. To be honest, it never drags me down though. The only time it really bothers me is when I think of one day starting a family. Would the pregnancy be ok? Would i relapse after giving birth? I treat this illness as a "bump on the road" in my life. I approach hospital visits and treatment as business trips almost. In and out - one of those annoying things that just has to be done! During those years of remission I still had to deal with having bad lungs but it never stopped me doing anything! Water sports, gym, swimming every day (I opened my own swim school so teach kids every day), work, traveling...! Perhaps my stubborn personality really helps though. I like to at least pretend that I don't have anything wrong with me

[prudence in reply to Annie-F]

Hi Annie I have had 2infusions of Rituximab as mycophenolate is not controlling my w.g in fact my consultant has stopped me taking them , how long did it take for the Rituximab to kick in for you ? He said I might have to be topped up every now and then if it works for me fingers crossed !!!

[Chris-Bromsgrove]

Hi Jane,

Like you, I have MPA and I have been in drug induced remission now for 6 months. So far so good; I can more or less live my life as I did before Vasculitis. I was mainly affected in my kidneys and to a lesser extent in my lower limbs. All limbs are now working fine and whilst there is some kidney damage they are functioning OK. The main slight impairment is the one that affects many of us; fatigue. It comes and goes at random. Sometimes you get it towards the end of the day, sometimes you wake up with it and sometimes you feel knackered all day. I try to ignore it and get on with things whenever I can. If my remission says that way I will be more than happy (when I think how bad it can be). My ANCA levels are still a bit on the high side but fingers crossed.

Hope this answers your question.

Best wishes

Chris

[Annie-F]

Prudence, for me it was instant. I had reached the point where I was so sick and there was nothing left for me to try but the Rituximab! I had cyclophosphamide, mycophonolate, deoxyspergualin and one or two other things over the space of 3 years. Nothing would settle it! At the time Rituximab was not yet licensed for vasculitis so we had to spend months fighting to get it. Everyone obviously reacts different but for me it was a real miracle drug - no exaggeration! From the very first dose I reacted great. No side effects at all. As I had been VERY ill when receiving it, it was probably only 6 months later, when I had the 3rd dose that I really felt great and bag to normal. After that I was fine - but still received another 4 doses despite being in remission.

I have heard (rumours) that it can take up to 16 weeks to kick in as its a very slow acting drug...

[JaneLE Administrator]

Thanks for the positive answers. I agree with the fatigue. I also agree with trying to get back to life.

[Llinos]

I'm 44 yrs young and have had WG for 13 yrs this year. I have relapsed once after a traumatic time 4 yrs after I came off all my meds. have not been on any medication for about 6 years now. Although I do get chronically exhausted I try to live my life the best I can. I trained for the race for life last year and do try to keep fit in a Gym ( although haven't been since Feb!!).

I work 29 hours a week as a nurse and have 2 teens that keep me on the go. There is life after WG, you just have to learn to listen to your body and do as I do- a brief power nap each afternoon works wonders for your energy levels.

Llin