PAN

[Wellsie]

Hi; new here and great to find this place. Recently been diagnosed systemic vasculitis, which both Rheumatologist and Neurologist think is PAN. I wondered if anyone has ant good references material and experience of Cyclophosphamide pluse therapy in the treatment of PAN?

[LynneJ Vasculitis UK Volunteer]

Welcome Wellsie

Have you checked out the vasculitis-uk.org.uk/ the is a copy of the route map in pdf format? It is a mine of information to start with. I have MPA and I did not have any really bad problems with cyclo. In fact it did me the world of good eventually.

Best wishes

[John_Mills Volunteer]

Hi Wellsie, welcome to the site. You are a bit of an exotic species really, with rare type of a group of rare diseases. So you are Special! But we do have 26 people on our mailing list shown as having PAN.

As Lynne says, if you go to the Vasculitis uk website vasculitis.org.uk (This is a new link that works just as well as the link Lynne gave you) you will find the Vasculitis Routemap as a pdf for free. If you want a hard printed book version it's yours for £10 inc p&p. Just let us know. There's lots of helpful info there. You will find a link to a paper on medium vessel vasculitis which covers PAN and its treatment very well. The Vasculitis Foundation of Canada (not the US Vasculitis Foundation site) also has some good information about differential diagnosis if your docs are a little uncertain about it).

Best wishes John

[Wellsie]

Thanks guys; I have got copies of these documents and have read them

With a mixture of interest and horror. PAN does seem quite exotic, so finding literature is difficult, and normally quite scary. In term of diagnosis, it took six months to reach leg nerves before they could take a sural nerve biopsy to confirm diagnosis. I think I'm still taking it all in; but good (if that's the right thing to say) to know there are 26 others here.

Thanks for the welcome John and Lynne.

[nannie]

Hi, I have w/g but have experience with cyclo. They gave me tablets which made me really sick. then on to infusion once a month. that really did the trick. so if you feel something isn't working for you, do tell them as there are lots of different ways of treating this. You just have to find out what works best for you.

[Ziggy]

HI! the only thing that put a holt on my Vasculitis was Cyclophosphamide! unfortunately I was only allowed it for 6 months!! I had no side effects and I was on tablets. I do not know what they will do next week as Myclophenlate sure is not working, for me!! desperate to see my Rheumatologist.......

[AndrewT]

Hello Wellsie,

I was on Cyclo., for a while, about two years, after being diagnosed. I am now, and have been for years, on a cocktail of drugs; which seem to keep me 'stable'. I am also on dialysis, three times a week, which is, I'll admit, a bit of a 'bind' but it keeps me alive (and concidering relativly 'fit').

I like you have strange type of vasculitis, mine is 'uncaractorised; about five overlapping strains, never quite 'tick' any of the 'boxes'! I'm sure that you know what I mean by that.

Good luck anyway, do let me (us) know how you get on, will you?

AndrewT

[MiaTilehurst]

I have CNS Vasculitis, originally treated with hig dose steroids and Azathriopine with only moderate success. Cyclophosphamide was then used for 8 months in tablet format. I can honestly say that the improvement I noted was immediate. I felt better than I had done for the previous 8 years. I now take Methotrexate to maintain stability.

Good luck with your treatment and I hope that Cyclo gives you the control over your condition that it has given me.

[Wellsie]

Really encouraged by all these comments; thanks.

[Chanel101]

Hi guys I'm new to this vasculitis I'd never even heard of it until my mum was diagnosed with it about a fortnight ago. (wellsie) thank you for recommendation of this site.Mum is on her second cycle of chemo, she still has no feeling in her hands and feet I was wondering if she ever will ? The doctors don't know a thing about her condition they just tell us its rare and we will see ! ( helpful !! ) she is feeling helpless understandably and as her family we feel helpless !

[Wellsie]

My symptoms exactly the same. Unfortunately they thought mine were orthopaedic problems and operated twice instead. Nerve damage is troublesome to repair. She will have had tests called NVC and EMG in neurology; these will have identified where the nerve has occluded.peripheral nerves typically regenerate at about 1mm a day, so a conduction block high in the arm or leg will take more than 2 years to attempt to fully repair. The level of damage already caused will determine how likely the nerves might repair. If there is a full conduction block, some permanent damage can be expected.

The cyclophosphamide and methyl pred infusions should hopefully start working (ask if the blood rest results for ESR and CRP are reducing).

Does your mum have any other symptoms, such as kidney, heart, GI Tracy or Internsl organ?

Rest assured cyclophosphamide is the best treatment for PAN according to what I've read; so whilst the consultants might appear unsure she's on the right stuff. Keep strong and keep in touch if you want to know more.

[Chanel101]

Hi Wellsie,

Thank you so much for your advice. The hospital have just transferred her to Epping for rehabilitation so we are hoping they will try and get her to feed herself with special cutlery. I've noticed that her feet and fingers have started to swell a little is this normal ? Once again thank you for your help.

[Wellsie]

Yes, if the disease is still active; this will show in blood tests ESR and CRP and they may increase steroid dosing. Plus chemo is a very powerful drug with some unwelcome and unpleasant side effects. Seek advice by ringing the day clinic who give the infusion if you are unsure.