POLYARTERITIS NODOSA

[MalcConwy]

Hi,

does anybody else in the UK have this virus i am 65 yrs old its affected my nerves and my lungs i am taking steroids at the moment but going on to methotrexate in June.had it since December 2018 ,

cheers

[zoe69 Administrator Volunteer Vasculitis UK]

Hi,

I have another type of Vasculitis (GPA).

PAN is rare and should be treated by doctors with Vasculitis knowledge. I hope you are under good care.

If you want to talk to someone or need some advice please don't hesitate to contact the helpline:

vasculitis.org.uk/helpline

[Prudencepig]

Hi I am diagnosed with Pan and although initially dreadfully ill for several months I am OK now. I am still on lots of meds but function really well. I am not the same as I was but cannot moan. I work full time and although often very tired manage well. 1 was diagnosed 6 years ago

[Theidealistrealist]

I got quite ill last august - and after an array of tests, trails and tribulations was finally diagnosed with PAN. I guess it might not be specifically PAN (as it's more of a tick box scenario from what I read) - but it's definitely a connective tissue disease, and vasculitus.

I don't really post in the forums here but have found them very useful - especially when I thought I was going out of my mind! I've also found youtube interesting with other people's experiences. I'm currently on steroids, which wow - they really really worked at first but less so now and am awaiting an immuno suppressive drug - but reluctant to take it.

PAN affects my lungs on and off (much worse with cold air), joints, testicles (everyday!), muscles, gastrotract and head.

One thing i've tried is looking into alternative (complementary really) medicine. I took an food allergy test, radically altered my diet, and I now follow an anti-inflammatory diet and juice alot! A lot of the support or help for vasculitus seems to apply towards PAN anyway - so the info on the forum is fantastic.

[philtw]

I had PAN when I was 21yrs old and now I have GPA at 51yrs.......

[DaveCop]

Good Morning MalcConwy, I too have PAN, I was diagnosed in December 2018 after having 6 months of hell. I couldn't walk for 3 months and was eventually put on morphine for the pain. I was prescribed Pred and despite one flare up I am recovering slowly. It has turned my life upside down, I lost my job, my debts have mounted up due to trying to keep a roof over our heads "BUT" I'm still here to fight another day and I will turn things around.

I have never heard it called a "virus" though, I have been led to believe that it was probably brought on by trauma or stress.

Please keep in touch MalcConwy, you can email me on [e-mail] you are the only other person that I have been in contact with in the UK with this affliction.

Take Care,

Dave.

[cclarke]

I was diagnosed with PAN in March 2017. After 2 years of dapsone and Pred, (assuming the diagnosis was accurate), it appears to have totally subsided. It was localised in my left lower leg and just below the skin surface. Although I have some marks (scarring I suppose) on the leg that never went away, I seem to be symptom free. I started shrinking my dose of meds down in August/September last year and came fully off both at the end of February. To date I have had no further issues, although I’m not oblivious to the fact that it may reappear and possibly in a different location/way. Having read some of the stories on here, I think I’ve been quite lucky and the diagnosis had little effect on me once the meds kicked in

[Samstew]

I was diagnosed with PAN in April 2018, soon after Easter.

I became seriously ill and was non responsive to various treatments, before diagnosis, with CRP peaking at 644, temperatures ranging from 40 degrees to 35 degrees, all within 35 minute periods.

I had pain in my thighs, of like I had never felt before, they felt like my femurs were going to explode!

I started to respond to IV steroid infusions and following various examinations and tests, polyarteritis nodosa was diagnosed.

There followed high doses of prednisone until I received 6 cycles of cyclophosphamide over a 3 month period, during the summer.

There were also infusions of steroids at this time also.

Since then I have been on continuous prednisone, all at various doses, I am currently on 20mg and the aim is achieve 10mg.

However each time I drop below 20mg, my CRP goes up!

I have been self injecting Methotrexate for 6 months now and will continue for the foreseeable future.

Having been on slow release morphine, MST, at an early stage for pain relief, I am now on Amitriptyline and Pregabaline for the neuropathy pain control.

After 12 months off work, my employer has now given me notice of termination of contract, so I will be retired through ill health.

I was 55 when this all started, I’m now 56, so retirement is all a little premature!

It does seem that everyone’s story is different, with the disease ranging in severity for each person.

I must add that many of my problems are separate to the PAN, but they have come on as a consequence and I was a fit healthy individual in March of last year.

If you have any questions, please feel free to ask, I am more than happy to try and answer what I can.

Btw, I am based in the Uk.

[Theidealistrealist in reply to Samstew]

Thanks for the detailed share Sam. Mine thankfully isn't too bad. Although when I got it in August it was horrific - I thought I was going to die. It seems to come on so suddenly for a lot of people

[DavidJB]

I was diagnosed with PAN in July 17 about 2 months after a dramatic start when I woke one morning. I had a very nasty pain which started like a hernia, but it moved from being on the left to the right over about 6 weeks. Then it moved up the chest area, by which time I was in hospital regularly as each attempt to sort it failed. I had very a painful eye on the right and then the left, but nothing showed up on eye tests. The common factor was a very high CRP, but no doctor could identify the source of the inflation or infection. The worst symptom of all was the headaches, only Paracetamol had any effect, but only for about 2.5 hours at a time. During this period which lasted until the end of April 18 I also underwent all sorts of scans, all coming back normal, (there’s nothing wrong). I also had a pacemaker installed in the middle of all this, but I am assured it is unrelated.

On diagnosis I started Prednisolone, which had an immediate effect, but

that dwindled the next day, so the dose was doubled to 60mg. I was on this dose for some months while the symptoms subsided. That’s all except the headaches which come unpredictability and stay from 2 hours to all day and nothing I can take makes any difference. Since then, over 12 months ago, I’ve been trying to get off it. It’s given me type 2 diabetes, osteoporosis, really accelerated my cataracts. I’m now down to 15mg having had 2 flair ups and just having a mini one, I believe. I have had 6 infusions of Cyclophosphamide, (I think to little avail), and am now on Mycophenolate for the foreseeable future.

I’ve never had any visible symptoms and I think this makes it difficult for others to understand. From the bright side I do go for daily walks almost however I feel. These are getting longer and I join in social events with the advanced notice that I may not be good at the time, I go to most, albeit a bit quiet at times.

I believe I have a good Rheumatologist, who I’m now seeing every 6 months down from every 3 months and who will always phone me back if I have a problem.

[Suzym2u Moderator Vasculitis UK]

PAN is an Autoimmune Disease not a virus although it can be triggered by one... it can be associated with the Hep B virus but not always. If you do have PAN you should be checked for Hep B and be seen by a doctor with knowledge and experience. PAN is extremely rare in the UK probably less than 100 recorded cases. This page on the VUK website has just been updated by Prof Salama at the Royal Free Hospital.

vasculitis.org.uk/about-vas...

[Kentish_Man]

Hi Malc,

Yes, I have Polyarteritis Nodosa (PAN) and am only aware of one other person with it in the UK. That is now 2 including yourself !! PAN manifests itself in different ways in different people. I was tried on Methotrexate, but reacted badly with it. I am now on Mycophenolate, Steroids (for life) and a whole host of other Meds. (22,000 pills a year) which are not all related to PAN.

I was diagnosed with PAN in 2006 and have been up and down with it over the first 5 years, but now it is almost tamed. I do have flare up's and these can be for no reason or from interventions on my body. For example I had a crown fitted 3 years ago and I went into a flare that lasted 4 months. I had replacement knee surgery in January and am just starting to emerge from a flare.

I have limited knowledge of the disease, but if you have any questions I will do my best to answer them.

Regards,

Pete

[Kentish_Man]

WOW, just read through the other replies - which I guess I should have read before responding - and co many more people with PAN.

I seem to have had it the longest from reading the other replies !!

Mine started after a Hep injection and a Flu injection at the same time. I had had them separately before and been OK. I had the injections on a Wednesday, the next day I felt achy and put it down to the flu jab. The following day I was mostly paralyzed down my right side. The side I had the injections.

My GP sent me to see a so called "specialist" privately. His main concern seemed to be writing out his invoice as soon as I went in the room. He had me on steroids and sulphasalazine. I was with him for 18 months during which I seemed to get worse rather then better. I demanded a second opinion and was sent to a proper specialist in London. Withing 5 minutes I was diagnosed with PAN. He did not paint a very good picture of my immediate future, but I left there with a smile on my face as I had now been correctly diagnosed.

After 3 months of Chemo, followed by a further 3 months of double the dose - which did not work - I was tried on various Meds.

Now, all these years later I feel that my health is probably as best that I can expect. It does not impede me too much except when I travel abroad, as I have to get permission to carry the various drugs into (and out of) the various countries.

[ianla]

I had numerous inoculations (for Hep B and other nasty stuff) while in the Armed Forces, but had also caught Chicken Pox from the kids a couple of years prior to diagnosis.

I was diagnosed with PAN in 2014 complicated by also showing positive for Antiphospholipid syndrome (APS).

Blood tests showed numerous false positives which made diagnosis very difficult. I was first tested for hormone deficiency and Leukaemia. As a last resort I was referred to a consultant who specialises in cases that are a “conundrum”. “If he cannot come up with a diagnosis, no one can.”

The first signs were severe leg pains but I put these down to over doing it with the running and cycling.

Severe pain in the bowel area came next . After a few days I was unable to keep anything I ate or drank down.

Emergency surgery showed severe necrosis of the small intestine. They were also concerned about my kidneys.

Chemo, Steroids, Blood thinners, strong painkillers and a long stay in hospital followed.

I have been told that the PAN is now well into remission.

Though the severe leg pains make a regular appearance.

My treatment now wholly concentrates on the APS. Though PAN is still checked for, when I have my APS blood tests.

I’m also on numerous different meds.

As Kentish_Man has stated there are ups and downs.

I have flare ups though it’s difficult to tell if it’s because of PAN or APS.

It can be life changing. A “normal” life is non existent. I just do what I feel I can achieve, rather than plan to achieve. I now think I’ve done extremely well if I have managed to walk for an hour. (Requires gritted teeth and “pig headedness”.)

Tiredness is a big problem. Go to bed very tired. Wake up just as tired. My body does not seem to be able to process sleep properly anymore.

Anybody else have the same problem?

Still, as long as I still get up in morning.

Regards to you all.

[greg31]

I'm in Canada and have had the cutaneous version of pan and it's been difficult to say the least. For everyone of us who are troubled with fatigue. Try eating more fruits and veg. I find our bodies cant process meats and junk food but sub in some greens and I think it will give you a boost. Wish I was older when getting hit with this hell storm cause it certainly changes your entire outlook on life.