Pan and vasculitis

so I just found out today I have systemic polyarteritis nodosa. Finally got in to an actual vasculitis center. Shocked to find out only 22 other people are diagnosed with pan in north America. And I think it was like 120 with another form of vasculitis. Dont know what to say but i appreciate this forum and the people who run it and all the people who are on here. We are so few so it only makes sense to stick together and help one another out.

thanks again,

greg

14 Replies

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  • Hi Greg

    I know when i was first Diagnosed i didnt understand the seriousness of Vasculitis i never heard of it , i was a reasonably fit bloke who never even took a headache pill. Then suddenly one day you wake up in a crowded but lonely place. And realise things are not OK!!!

    People saying "you look well" and inside you feel life ebbing away. Very difficult times HOWEVER...... Like you say Forums like this are priceless, people in the same situation is helpful and its great to hear opinions and support one another when we hit the low times .

    UNITED WE STAND

    Cheers mate

  • I feel the same way you do sorefeetsoldier. People tell me all the time how good I look, if only they could know how bad I feel inside and all over really. If only they knew half of what we are going through, it would floor them.

    deebeau

  • Hello I live in the Birmingham area. And I also have PAN. and churg star three weeks ago I was also diagnosed with cancer of the spine.

    I have found this site very supportive.

    I have had vasculitis for 16 yrs now. If I can help I will do my best.

    Thinking of you

  • Welcome to our very exclusive club, Greg. Today having my third cyclophosphamide drip treatment.

    All the best

    Steven at the Royal Free in London

  • How are you doing Steven after your third treatment? I have had two treatments and can't tell it's helped me any. I pray that it does tho. My doc. says he has only treated one other person who is male, who has what I have. I have polyarteritis nodosa and Rhumatoid Arthritis. He said it is in my small and medium veins. My pain is debilitating at times, especially when the weather changes or it rains. I am on 20 mg of prednisone and 10 mg of pain medication, and sometimes I still have to get a pain shot. I was on 40 mg of prednisone, then 30 and now 20. He is trying to get me off of the prednisone. I just pray to God that the chemo works for me, and you.

  • Hi,

    It seems to work well at my end, at the moment. Following diagnosis, I was put initially on 30mg, which was doubled to 60mg Pred two weeks later- I was just too healthy. The Cyclophosphamide drip treatment is doing its work perfectly in four week cycles with being 'wiped-out' for a few days in week three (as predicted). The regular bi-weekly blood tests are showing enough progress that I am now down to 35mg Pred for the next seven days, with 30mg for the next seven days, etc. In general, I feel slowly getting back to getting control of my legs. Luckily my C.Pan (left leg) never got to any of my other organs, so the 'fight-back' is now centred below my left knee, and just above my right ankle. Though, most days, lately, in my left foot, when walking, it feels like walking 'on' pins & needles. I also try to cut back on the painkillers as these can become addictive and may have nasty side effects. Tomorrow, I am likely to have a 'lie-in', but than again after my second treatment, also on a Friday, I was tending my garden on Saturday. Fingers crossed. Best, Steven

  • SRY u had to. but happy u joined !

  • Hi greg31, I was diagnosed with systemic polyarthritis nodosa and Rhumatoid arthritis over 2 years ago. I am now taking chemo to put them both in remission. I have had two treatments so far, one each month. I can't tell that it has helped me any so far. My pain is so bad at times that I can't hardly stand it. It is in my hands and feet and left leg behind my left knee. I also get bad head aches and my sinuses hurt also at times. It seems to hurt worse when it is damp and rainy, and cool weather or changing from hot to cold or cold to hot. I love the warm tempature around 78 degrees. Can you tell me how it affects you? How bad is your pain? Where is it effecting your body? I had a rash on my arms, upper torso and my legs when I went to my Rhumatoligist. He ordered a kidney biopsy and it showed protein in them. He says my lungs sound clear as of my last visit to him last month. He said I have it in my medium and small vessels. He also said he only has 1 other patient with what I have and that it is a male. He said men usually get it.

    Where or what state do you live in? I live in Ky. I would love to hear from you.

    deebeau

  • hello everyone thanks for the replys. I'm Canadian and live close to Toronto. I'm 31 and am athletic and fit. Or so I thought I was. I frame houses for a living and am expecting my second girl on Monday. Lets just say my life is REALLY crazy as my pregnant girlfriend is being as understanding as she can. It all started two years ago with nodules on my right leg only. Docs said I hit my leg at work and it will clear up..... Six months later the nodules crept up into my thigh and then into my groin.only on the right side. It eventually went away but then my calf acted up and I had a superficial clot in my right leg. Now I have a cheetah looking foot and toes as a vascular surgeon as diagnosed me with chronic venous insufficiency in both legs. So now I wear stockings all day everyday. Pain in the u know what but they work. As long as I dont have a flare and can get them on. But all in all I know the beginning is the hardest and with a pregnant lady ready to pop and me walking with a cane lol I know its sad. I know Ill fight this and win its just so painful and debilitating when it takes over. So recently I just had a flare on my left foot same as it was the first time but other foot. I goto docs and get20mg pred. I could walk again but the next day my left arm was completely disabled and my right knee. To the point I was in tears if I moved an inch the wrong way. I was like that for three days and started 50 mg pred. It took weeks for my. Flares to calm down and I just went back to work and I feel like I'm in my sixties.... It sucks but you keep on trucking. So now this new specialist tells me that because its not just nodules and in my skin but in my joints and I also have raynauds and my arms fall asleep all the time. That I have systemic pan not what the biopsy shows which is cutaneous. Thanks again to everyone. And I will watch for the weather but as of lately I dont notice it playing a factor

  • Ooh Greg I am so sorry it is turning out much worse than initially diagnosed. The only thing I can say is that eventually it was recognised and you finally got a specialist rheumatologist diagnoses. No hoping that the treatment works but be careful for changing unilaterally your Daly dosage . Better to increase the pain killers than the Pred as the potential Pred side effects could be much worse both short and long term.

  • Sorry "....now hoping that ..."

  • pain is the same. Can barely walk or stand. My one wrist is also in limbo. I manage with Mary Jane but it only helps so much. I dont think the weather plays with my pain as much as trying to lower my prednisone does. Since having my kid I wasn't sleeping or eating properly and I know this is a huge factor for me when it comes to triggering a flare. Also alcohol. Has anyone had a superficial clot it dvt before??? Since my first flare second and third time around have been more painful. Hoping I get meds to control this soon. Any suggestions of med or how to week off pred properly would be nice. Is 5 mg a week too much too fast? To me my body notices it and then kicks me in my teeth. Also now I'm sick with some huge nose sore and stuffed up and coughing green stuff. And I got a 3 day old. Having fun over here... Just when you think things cant get worse lol glad Mary Jane is here.... Thanks again for the support guys and girls. You guys across the pond are friendlier than us canucks...

  • Hi Greg first of all congrats with the new arrival, that's wonderful news and should give you some support - a new life! You are the second person mentioning the weather and that having some impact. I am currently in Amsterdam having had some traumatic news with my elderly mother passing away last Friday when I had my third Chemo drip session. Yesterday was the first and last time that I saw here and that was traumatic - it clearly had an effect as the pain has increased the last few days. In addition better weather is finally kicking in in Western Europe with higher temperatures and again that may have had an effect. I have emailed my rheumatologist with these points asking him what to do in particular whether to stay on 35mg for the rest of the week - I should now go for 30mg for seven days or to increase the pain killer dosage or what. All the best, Steven

  • first of all. I'm sorry to hear about your mother passing. I know that stress is a big factor with this disease and losing someone that close to you would hurt more than anything. My heart goes out to you.

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