Hi my dermatology consultant has told me he believes I may have PAN,
I have no other symptoms other than a rash on my limbs. Apparently the pattern of the rash is indicative of PAN. I have also had a skin biopsy and numerous blood tests. My consultant says i may have a cutaneous version of this ( I am still booked for full body CT scan to check for other organ involvement).
Has anybody been told the same or actually suffer from PAN or cutaneous PAN? as I would love to hear from you, as I am unsure what to expect. My consultant seems to be really positive about a good outcome for this condition and says treatment could be discontinued in a year or so ( if all is well) but from what I have read it can be quite a serious vasculitis and some people have really had it tough. Scared
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Hi, I have PAN. I have the systemic version, and in all honestly, it's really not pleasant. At the moment, the only way they can control my symptoms is cyclophosphamide, and over the last 2 years I have spent nearly 18 months of it on chemotherapy. I have had organ damage, internal bleeding, and significant damage to the nerves in my arms and legs. Feel free to send me a message if there is anything you want to talk about, or ask any questions here.
Thank u for your reply. I am so sorry you are having such a difficult time. PAN sounds so scary. If you dont mind me asking, how did yours first start? what where your first symptoms? Did it take long for the doctors to reach a diagnosis?
Here's a summary, just message me if you want to know anything more specific, as this isn't the compete list of symptoms and outcomes:
Neurological manifestations rapidly formed (within 24 hours) conduction blocks in peripheral nerves, affecting motor, sensory or both. Confirmed by NVC and EMG tests. Monoeneuropthy multiplex, never polyneuropathy, following a distal to proximal nerve patten.
Unusually, my neuropathic symptoms started in my L ulnar in a block at the elbow (which lead to unnecessary ulnar transposition and decompression surgery, d'oh, it certainly wasn't cubital tunnel). Then I developed a compete block in the L radial about mid humerus. When admitted to hospital with severe arm pain and livido reticularis in both arms my R ulnar nerve collapsed. CRP and ESR spiked through the roof, and there strong evidence of inflammation markers from a lumbar puncture I had. ANCA tests were all -ve. I had lost 3 stone in 4 weeks, and developed acute night fevers, joint pain and intermittent temperatures. I was whacked with a lot of methyl pred and IV-IG with a possible systemic vasculitis diagnosis and discharged 3 weeks later.
4 months later, I relapsed developing leg pain, heavily swollen legs, and several punched-out ulcers on my legs and hands. At the same time I developed rapidly acute ochitis and lower bowel pain and found evidence of internal bleeding in my stools. At the same time, my L sural and peroneal nerves started to experience sensory deficiencies, and all it went downhill very quickly. When I was admitted to hospital there was lots blood and protein in my urine and my kidney function poor. End result = more time in hospital, sural nerve biopsy and 12 cycles of cyclophosphamide and methyl prednisilone, which were successful.
Discharged and placed on Azathioprine as maintenance. Felt better for 6 months, then started to go down hill again last summer, 6 months later. Massive joint pain, night fevers, maliase. Rapid weakening of lower joints, foot drop, loose L hip. NVC and EMG showed SNAP issues and lowered latencies across L and R Peroneal nerves and R sural now too (L sural already cut out). Placed back on chemo and current treatment plan is to continue on chemo once a month until June and then once every 6-weeks until September and then review again. Neurologist, Urologist and Rheumatologist want to be sure that remission sticks before reverting back to maintenance, and then make a decision whether maintenance is Methotrexate, Azathioprine or Mycophenolate.
I was diagnosed with pan early this year after spending three horrible months in hospital feeling like a pin cushion. I suffered a strange stroke which affected my eye which resulted in the diagnosis and thankfully the correct treatment. I am currently having chemo steroids etc but feeling back to normal thank goodness love being better having been so ill. Consultant a magician and has a special interest due to pans rareness the outcome is unclear but he keeps telling me that now we know what it is it can be treated early and with the right medication. I don't know what the future holds but I am going to enjoy what time I have left it is a good outlook. Hope all goes well would like to know how it goes for you please let me know
Thank you for your reply. I am so glad you are feeling better. The cases of pan I have read about seems similar to yours, with the sufferer being really ill and have a lot of symptoms before a diagnosis is reached.
This is what confuses me as I am very well other than this rash I have. Although the rash was very painful and I did have some joint pain in knees and ankles prior to starting on pred. Maybe this is why my consultant has mentioned a cutaneous version of pan. I suppose I will just have to wait until I have my ct scan to see if I have other organ involvement. I will keep you updated.
What were your first symptoms? Was it rapid or gradual onset? X
It's really good to hear other people's experience with this rare disease indeed! I have had this since last 4 years almost. Right after my second child.. I had severe nerve and joint pain on the onset of this disease for about 5/6 months and that all resolved by 80% !! Skin marks and reticularis nodules still persists till this day. I was treated with Cellcept at one point for about a year and half but nothing changed. So now I am not taking any immunosuppresants or other medications for this. I still see my dermatologist and rheumetologist every 3 months as they are observing this. I hope my experience helps others.. I have a few questions if anyone is interested to answer.. How long does it take to resolve? Does it ulcerate??
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