Can you tell me your experiences of small/medium cell vasculitis?please

[nanny4]

My daughter has been told today that she appears to have vasculitis,which has damaged her heart valves,skin,had affected her vision,severe fatigue and much much more.she is on lots of meds for supposed systemic lupus,so she feels much better than she has done for a few years.she was told today it isn't lupus,but vasculitis,and that she had probably had it since a child,due to all the symptoms that she had.

She had to see a rhumey on monday,she has never seen one,even though she was very ill with suspected lupus a year ago.

What I really want to know is what happens now?she has been told to watch her heart issues and her eye issues(had nastygmus and tunnel vision gor a few years,also scarring of the heart valves.

Are there many here on the forum that have had major problems with small cell vasculitis.She hasn't been given a name for the type as of yet.

Many thanks in advance for your input.Sandy.

[LynneJ Vasculitis UK Volunteer]

It is good news that she has finally been diagnosed so now proper treatment can begin. Have you looked at the Vasculitis uk website. It has a pdf download called the Routemap. In it you will find details of all the different kinds of vasculitis and treatments etc. It is a very easy to understand document with all you need to know.I am under a Rheumatologist as I have MPA which is small to medium vasculitis and am lucky have got treatment before major organs were involved (I have just been left with fibrosis on one lung that doesn't really bother me now). I am sure there will be someone on this forum that will have more knowledge than me of the kind your daughter has. In the mean time do read the Routemap it really is useful. This is the link

vasculitis-uk.org.uk/routeM...

Good luck to you all. Lynne

[nanny4 in reply to LynneJ]

Thank you very much for your reply,I shall have a look at the route map now.At the moment she was. just told small cell vasculitis,I asked her what it was called she said the consultant didn't say what type.

Maybe when she sees the rhumey on monday she will be more help.

I am glad now she had a dxs that she can get the treatment she should be getting.

Thank you very much for your reply,Sandy.

[Hidden in reply to LynneJ]

Hi lynne

I was diagnosed with mpa vasculitis in December and currently having infusions of cyclophosphamide and on steroids. What I would really like to know is do you ever get back to your old self if you get into remission?

Johnny

[lismacb in reply to Hidden]

Hi Johnny. I too have MPA. Diagnosed Sept 2017. Also had cyclophosphamide and still on Prednisolone but down to 5mg. Tried azathioprine the mycophenolate for the immuno suppression but didn’t really do well on them. Switched to 6 monthly infusion of Rituximab which seems to suit me well. Was originally off work for 5 months but have since managed to get back full time. 12 hour shifts days and nights so I’d definitely say there’s hope to get a sense of normality back though of course it’s a new normal. Good luck with your recovery, a positive mindset helps too!

[Hidden in reply to lismacb]

Thank you so much for your reply, very positive. I’ve always worked and it’s hard mentally to deal with not having the physical capacities. Appreciate your positive message.

Thank you

Johnny

[Patriciaw]

My husband has PAN medium size cell vasculitis, it has affected his heart muscles which are now down to 55%, also he has lost 50% of the muscles in his voice box. It did affect his eyes and needed new glasses and of course the pigmentation on his skin. He has adjusted to living life in the slow lane and enjoys a good but very different way of life, even being able to get down onto the floor and play with his grandchildren, training his dog to walk with the mobility scooter and editing two magazines and producing various posters etc for many voluntary organisations. He has been fortunate that the diagnosis was very quick (within 2 weeks) as the rhumey consultant already had an interest in vasculitis and was very quick to get the correct muscle biopsies done and his GP is brilliant reading the route map. I hope you can get as much support as we have had and your daughter will be able to enjoy a full but maybe slower life.

[Wellsie]

I also have PAN, which as Patricia says is a medium cell vasulitis, but also effects small cells too. Whilst I have not had the "typical" purpura like rash, I have experienced ulcers and livedo. I have severe nerve damage to peripheral nerves in all of my limbs, experience GU and GI issues, and the disease is currently active in my bladder and bowel. I have had the nerve and tissue biopsies too, but am currently having a positive response to the standard methyl prednisolone and cyclophosphamide treatment.

Hopefully the rheumatologist will have some knowledge of the disease (fingers crossed) and will be able to assimilate quickly what tests and what action are required. Generally consultants are reluctant to start cyclophosphamide treatment until they have a nailed down dx due to the toxicity of the treatment regime (it is a chemotherapy drug after all). Your daughter will almost certainly have to have more blood tests to test CR-P and ESR (which identification inflammation in the body), ANCA (which might help differentitate between "PAN" and "MPA"), Liver Function, U&E, (kindney test to measure creatinine clearance rates) FBC (full blood count) and several others. If your daughter has any suspected damage to her peripheral nerves she may also be required to have some nerve conduction studies taken by a neurologist. They might also request an arterialgram to look at damage to internal blood supplies to major organs. There could be many other tests depending on the presentation of the sysmptoms, what tests have already been conducted and what the professional opinion (and, frankly, experience) of the consultant is.

Good luck on Monday, I hope it goes well.

[nanny4 in reply to Wellsie]

I would like to thank you all very much,I have just realised they said to her small vessel not small /medium.

Can anyone pleaded give me an idea of what happens with small vessel.

She always presented well after steroid infusions for suspected lupus,she. is on prednisilone 3 tablets maintainance dose,methotrexate 7.5mg a week was 70mg a week.plaquil and the usual anti inflammatories etc.

She see a rhumey on monday,she will hopefully get things sorted,as far as meds and what to look out for,I know her heart valves are damaged and the main thing will be keeping things at bay there,also scarring on het kidneys,she was told yesterday to watch her eyes,as she had bad nastygmus and tunnel vision for a few years,that finally went when she had steroid infusions.

I know 2 months ago a renal consultant she had seen once was certain she had multi system vasculitis,she had a body mri with dye,but from that scan they were not sure as there didn't seem to be enough damage.

I prefer to come here to the forum to get a realistic version of what vasculitis is all about,my daughter has lost the fight,she has had enough she says she just cent be bothered with it all anymore.

Any advice on the reality of small vessel vasculitis,I had read th

[AndrewT]

Daer nanny4,

I can't add much morer, to what's been said already, so I won't try! Good luck anyway.

AndrewT

[nanny4 in reply to AndrewT]

Hi Andrew, thank you so much for your input,very much appreciated.

Sandy.