Microscopic Polyangitiis... and advice?

[JaneLE]

I'm currently in the middle of the initial treatment and finding it really hard to deal with this change in my life. Any advice welcome, especially on how to cope with the changes this brings in everyday life, I have two young children and a full time job!

[Wellsie]

Jane

The hardest thing to overcome is the fact that vasculitis does, during the disgnosis and treatment stage, makes a major change to your life and the way you live it. Whether it be MPA, WG, CV, PAN or any other other type of vasculitis, recognising your illness for what it is and its impact on you is one of the hardest steps. It sounds to me like you've made that step.

However, hopefully you are already well on the way to the right treatment, and your consultant(s) hopefully will provide you with the best route to recovery. I remember the feelings of shock, denial, and understanding I was no longer "bulletproof" when I received my own diagnosis and how devastated you can feel as a result. No longer was I looking at words of diagnosis on a page and thinking "it's not me"... it was a disease active within me. Make sure you give yourself all the time you need to come to terms with it.

The "coping" aspect will ultimately come down to your symptoms and treatment. For example, whether your major organs are effected or not, how bad any damage is to your peripheral nervous system, how tired you feel, and how you deal with self conscious issues when there is rashing or ulceration, or the dreaded shape and weight changes bought on by long term steroid use. Treatment can be tough, as is getting used to prednisolone and cyclosphoasphamide, if that is where your treatment goes.

I have 2 young children as well and have had to deal with the breakdown of my marriage in the last 18 months, so I know just how hard it is, and how low you can get. The disease and the drugs don't help, but rest assured, you will bounce back.

What sort of symptoms are you experiencing and what treatment are you on? I'm sure that will help those other sufferers of MPA tell you their own experiences.

[John_Mills Volunteer]

Hi Jane,

Yes it comes as a shock to all of us when we get vasculitis. Life will never be the same, but it doesn't have to be worse, just different. As a WG sufferer of many years standing, I can echo so many of Wellsie's comments above.

1) Do visit our website vasculitis.org.uk for more information. There's lots on there, including a big section on Living with Vasculitis.

2) If you would like to send us a private message givng your postal address, we'll put you on the Vasculitis UK mailing list. The Autumn newsletter is out in a couple of weeks time.

If you want a one-one chat, then call us on 01629-650549.

Very best wishes

John & Susan

[Mooka]

Hi Jane

I have MPA and am a bit futher along the line than you having finished my chemo about 6 weeks ago. Personally it took me so long to get a diagnosis I was just happy to know what was wrong and what I was up against. I find it really difficult to cope with working and living with the illness, so I can understand that having to cope with two young children must be really tuff. I have found that it is best not to push myself too much because I will suffer afterwards, I know this is difficult when you have children, hopefully you have some help with them. I am quite happy to chat further if you wish via private message, I am sure John and Susan can arrange this. I have also found that as I don't look ill people assume that I am capable of doing more that I say I can. A quick look at this site assures me that I am not 'putting it on'

Take care, Best wishes Mooka

[Chris-Bromsgrove]

Hi Jane

I have MPA and I am just coming to the end of my initial treatment. Like Mooka my initial feelings when diagnosed were that at last someone has found out what is wrong with me and they also know how to treat it. It is nasty medicine, especially at the start when you are on that high dose of Pred. I have found it a bit of a rollercoaster ride over the last few months but I kept telling myself it is not as bad as suffering the disease. I now have just one more chemo infusion to go and I am down to 7.5 mg of Pred. My kidney function has recovered sufficiently to be no longer a concern and thankfully I have no lasting damage to my limbs. If I could just get shut of the bouts of exhaustion I would be ecstatic. I know this disease does affect us all differently. My consultant says I should push myself but know my limits. That has not always been easy for me as it has never been in my nature to take it easy. I do feel for you with two young children and a full time job. I hope you get the support you deserve both at home and at work. However I’m sure you will soon begin to feel the benefits of the treatment as time goes on.

Best wishes Chris

[JaneLE Administrator]

Thank you all soooooooo much, its reassuring to hear that my experience is not unusual. I agree, with the relief at being diagnosed as I have had years of just not feeling right and not understanding why. Being exhausted for so long is exhausting mentally and physically. To have a name and something to fight was a relief, however I think within the last few weeks its hit me how long this fight might be and I've found that overwhelming.

I am struggling with the balance between pushing myself and listening to what my body says. I have always been very ambitious and driven to succeed, and this has made me feel a litttle lost - not a feeling I enjoy. Its made me question the value of the career I have created.

Reading your comments shows there is light at the end and it will get easier, I will probably re-read these comments many times.

Thank you again from My Family and I.

Jx

[ken13]

Hi janeLe, I was diagnosed coming up to 4 years ago. The initial treatment is quite hard to tolerate, what with cyclophosomide, then high does of prednisolone, as you travel along this road, you can feel the benefits, and gradually get a little better with dealing with it, i know

how hard it can be but the trick is only do one day at a time, and coping with vasculits becomes a little easier.

[Wellsie]

Janet; clearly you have a very positive attitude which will help your recovery immensely. Allow yourself permission to have the odd emotional wobble and deviation; its all part of vasculitis really.

We all accept it, live with it, and fight to beat its constraints to achieve remission, however long that remission may last for.

[tamidi]

My daughter has MP p anca positive and GBM also,she is 10 years old.She is on calcort 36mg second da,and Cellcept .She finisch 6 pulses of citoxan in June.She has lung(big) and renal involvement 16%.Her lung are 100% clear,but she still has 660mg protein in 24h urine and lot of rbc in urine.Her renal function are normal.Her hemoglobin was 56 and now is 148.Please is there anyone who can tell something from experience.I m sorry because of my Englisch.I m from Bosnia.

[John_Mills Volunteer in reply to tamidi]

Hi Tamidi,

So very sorry to hear about your daughter. 10 is unusually young. From what you write it seems that she has been given exactly the right treatment. It might be that the protein and blood in the urine are because of the permanent damage that has been done to the kidneys.

If you want any more information you can look at our new website vasculitis.org or to send an email directly you can write to [e-mail] or send me a private message on this site.

Best wishes - John