Cutaneous polyarteritis nodosa

[greg31]

just curious to hear from others who have cutaneous pan. And how they manage and what prescriptions work and how its affecting you. I'm recent diagnosis and am 31 living or was living an active lifestyle and now I'm realizing my body cant keep up. Just curious as to what others are going through.

[StevenD]

Hi Greg

Welcome to indeed a very rare club of C.PAN patients. I am 58 and was diagnosed late January 2016, and I have asked a few questions using this forum, with very helpful comments from forum members. Please scroll back the topics to have a look.

This is my understanding of Vasculitis C.PAN:

The bad news is only approx 5 or 6 people per million in the general UK population get/have what I have. As a result, there is no real historic scientific research (nor research projects done or planned) and therefore it is not well understood generally by the medical profession including GPs.

It has been confirmed that I am 'lucky' due to a reasonable early diagnosis, thanks to my physiotherapist who suggested that I didn't had tendinitis, but that I should see a reumatologist. Subsequently, the GP agreed.

First symptoms in October last year: an 'odd' increasing pain in calves, ankles and toes and subsequently funny spots popping up all over my lower legs followed by increased numbness and pain. NO known reason why I have it.

The good news is, due to early diagnosis, that the cocktail of medication and drip treatment (see below) that has been developed approx 50 years ago has a reasonable track record for our condition, and, therefore it should work and should contain the disease getting worse, but there is no cure.  

Unless there is a 'flare-up' - when I will go again through the six months' cycle, etc, in most cases the numbness will remain but, subject on how much damaged the nerves are; it may/will become gradually less, and (hopefully) be kept under check with a substantial lower dosage of steroids - Prednisolone - (preferred daily intake, once initial six months of treatment has stopped: approx 7.5mg a day). 

In summary: 

1. based on future blood test results, the steroids daily dosage should come down soon, but gradually every month, following the initial 60mg in the first month of the drip treatment. This FRiday, I am having my second drip. 

If this doesn't happened than to continue with the 60mg until it starts to work. If all else fails, there is an alternative immune suppressant drip stuff they could use for the drip. 

2. After the initial six month drip treatment, it depends. The best outcome is to wait four or five months to see how things develop on a substantial lower Prednisolone daily dosage. You will become a regular at your hospital - I am at Royal Free, in London - with blood test being taken every two weeks. The blood markers should give an indication on what's happening and whether the steroids dosage can come down during the six months. 

3. The steroids and drip treatment are indeed cumulative, so I will be at my weakest in the last few months of the six months cycle. This will/may increase the risk of catching all kinds of infections, thinning bones (Vitamin D tablets, to counteract that), possible face and neck deformation, increased diabetic and higher blood pressure risk, possibility of certain cancers, etc. 

To counteract, I am wearing 'bio-masks' when in public spaces, including busy streets,  (London), meetings, theatre, tube, bus, train and airplane. It works, as people are not used to people wearing mask - they must be very sick to do that -, so they step away. You may need to get used to explaining it when meeting people, that the face mask is for your protection. "I can't make you sick, but you can unwittingly".

I also suggest you find out were your nearest Vasculitis patient support group and join vasculitis.org.uk/

All the best, Greg.

Regards,

Steven

[greg31 in reply to StevenD]

thanks for the reply Steven. I will look back in the forums and I appreciate your advice.

[greg31 in reply to greg31]

hey Steven what do you mean by drip? I have just been to the hospital two nights in a row due to shooting pain in one foot and one arm from flares. I'm still waiting to see a rheumatologist on Thursday. But the hospital laughed when I said I was on 20 mg of prednisone. So they up'd it to 50mg. That was two days ago. Not much difference and I cant handle the pain. So now I have Tylenol 3's for that but they do little for me. And I've bought a cane lol. Fun times. Just curious. Should I up the prednisone to 60mg like I've read on here??? And what other drug could help me if there is one??

thanks

Greg

[StevenD in reply to greg31]

Here is the information on the six month 'drip' treatment I am having, Craig: hopkinsvasculitis.org/vascu...

[greg31]

so I'm kind of back to normal. Been on 50mg of prednisone for 8 days now. Still no one knows how to treat me? I would've thought more people would have responded but maybe cpn is that rare?

[StevenD in reply to greg31]

Here is info for C.PAN: hopkinsvasculitis.org/types...

[greg31]

this is also a problem. The fact I have cutaneous and not systemic PAN. They don't see it as life threatening because it's only cutaneous(skin). It really sucks cause im on high dose of prednisone and my joints are still hurting. Going to give it the weekend and hope I get back to normal. Appreciate the help Steven.