Polyartertise Nodosa
Hi is there anyone out there with this ,I was told I had PMR ,but recently changed diagnosed with polyaretise Nodosa PAN it Seems many people have PMR with lots of help and advice ,but I can find much on PAN although some of the symptoms seem the same .nobody knows much about this disease even the GP know very little .My grandmother died of this disease but that was about 20years ago
Hi kingsdax, What were your symptoms when you were diagnosed with PMR? And what caused the change in diagnosis? Symptom change? Blood result change?
How long since it's been since your first diagnosis of PMR?
Hi kingsdax, I was diagnosed with this disease in December after spending 4 months hardly being able to walk, my feet and legs covered in black scabs and a weight lose of two and a half stone within one month.
In December of 2017 my right foot had a bit of a swelling and was very sore, my doctor prescribed antibiotics which had no effect, I can't take anti inflammatory drugs due to blood pressure medication. Then in April I had an incident where I suffered several fractures in my legs, that's when it hit me hard. I worked in Germany and used to walk up to 10 miles a day. My fractures were hairline and weight bearing and so went undiscovered, I thought it was just another ailment of the swelling that was affecting my right foot, I was back and forth to the Hospital/Doctors on my leave home and the diagnosis went from Tendonitis to Sceptis that was in August. I had to leave my job in Germany because I could not get my work boots on never mind walk the distances that my job required, I struggled to walk 100 yards.
August to December I was virtually housebound apart from the appointments to the Hospitals/Doctors, seeing different specialists. I used crutches or my wife would push me in a wheelchair to my appointments. I used Google to self diagnose and kept telling my Doctor that it was Vasculitis that I had but it was falling on deaf ears, I don't know why but no one was listening. Then at one of my appointments in November I mentioned to the consultant about a pain in my thigh, he felt it and immediately ordered tests swell as booking me an appointment with a rheumatologist from a different health authority. I attended an appointment at Newcastle Freeman hospital with the rheumatologist who asked a dermatologist to attend. He told me that if I was not seen to by my local health authorities within two weeks I should contact his secretary and he would treat me. The earliest that I could see my local health authorities rheumatologist was 28 Feb 2019 ( this appointment was considered urgent and was booked in November 2018 ). I was seen at Newcastle Freeman 6th December and diagnosed with PAN, prescribed steroids and was walking within 3 days albeit unsteady and slow but I have gone from strength to strength each day. I go to the gym virtually every day to get the strength back in my legs and try to lead a normal life as possible, I am now looking for work again but also setting up a business for my wife and I to run from home.
You have to keep positive and set yourself goals, goals that are achievable!! I'm not saying that I don't have bad days or that the scars/scabs on my legs don't get me down or that I'm a lot weaker than I used to be or the weight gain from the steroids gets to me but it's a horrible disease, you are stuck with it for life so make the most of the bad hand that you've been dealt and live life the best that you can. It also helped me that I have a wonderful wife who has backed me in sickness and health!! ( Soppy bit at the end but true ).
kingsdax
Yes I have Polyarteritis Nodosa and was diagnosed Nov 2016. I’m 43 years old. It’s been a long road to returning to normal. I’ve had 7 treatments of Cytoxan chemo and 4 sessions of Rituxan. I’m still on Prednisone 10mg and I was just started on Cellcept to see if my inflammatory numbers decrease because none of the other meds (methotrexate oral and injection and Imuran ) did not work. I’ve had Physical Therapy for a couple months last year because I had a flare despite me being an Occupational therapist myself. I do still have nodules that are painful. However, acupuncture keeps me almost pain free and has allowed me the ability to walk again. Please feel free to inbox me if you have questions. Stay strong.
Hi Kingsdax
I was diagnosed with PAN in the middle of 2017, after a series of complaints around the body. These included hernia symptoms, other groin pains, chest pains, temporarily loss of vision in one eyes, sepsis with CRP very high, but worst of all we’re the headaches, which had me incopacitated for long periods. I have had no external evidence of anything.
The diagnosis was made about 3 months after these symptoms started, a day I remember too well.
I’m a load of drugs, Prednisone to start with. 30mg became 60mg within 2 days and the reduction profile has been down to 20mg, flare, up to 40, down to17.5 in 10 and 5mg steps, flare, up to 40, down to15 in 5 and 2.5 step. Now on 15 and 12.5 alternate days. This last step has not been smooth.
To help get me off Pred I have had 6 infusions of Cyclophosphamide, seemingly to no affect and am now on Mycophenolate.
Pred has caused me to be a Type 2 Diabetic, have Oustoporosys, vastly accelerate my cataracts, weight gain and I’m blaming it for the headaches I still have as a background and with increased intensity for at 2 week after a Pred dose reduction.
I understand symptoms of PAN can be individual to each patient. Now I believe PAN is the route cause behind 7 hospital administrations and a large range of scans in the first half of 18. I’m just hoping it is in remission, but am fearful of my next Pred reduction.
However I’m luck enough now to have a life outside bemoaning PAN, with the warning to friends that thing can get cancelled at the last minute.
If it means anything I’m now 70.
I wish you well on your PAN journey and hope it is smoother than my experience. I’ve not found any other comments to reference.
There is a new page on the Vasculitis UK website about PAN, it was written for the website last week by Prof Salama ( London Royal Free Hospital ) if you think it may help with a detailed explanation. PAN is extremely rare and seems to getting rarer. It is essential you are seen by doctors who have experience and knowledge. . vasculitis.org.uk/about-vas...
Hi everyone many thanks for your comments ,as you all know we have all sorts going on and have been like this for many years I think people think we are faking it all ,Iam on prednisone only for pAN as I have heart failure and pulmanary hypertention on a lot of Meds for that ,I was told by one doctor I had no signs of inflammation so I could ween myself off the pred I did this over a year lost 2stone ,then suddenly became really ill could hardly walk could not get out of a chair ,went to the GP told me to go back on pred couldn't believe the difference after 2days I felt so much better so back to the moon face ha ha ,but much less pain .Could go all day with all my problems as Iam sure you all have all theses complications ,one of the things that's getting me down is tinnitus its there day and night can't sleep because of it in my left ear the sound goes with my heart beat ,in the right ear it's just a noise ,I did google it said its to do with vasculitis anyone else have this.Many thanks for the info on the vasculitis web site I will have a look at that now
Best wishes to you all Jan
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