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Has Anyone Else dealt with Nodular Prurigo in addition to your Vasculitis?

Posted , 3 users are following.

Mamaw
Mamaw

I have 3 kinds of Vasculitis, and recently was also diagnosed with Nodular Prurigo . It's extremely itchy and painful, especially in addition to the eruptions and sores of Vasculitis.

I was wondering how common it is to have both diagnosis?  Many folks in my Facebook support group also deal with both issues.

I also had a recent outbreak of Shingles. I am all messed up!  sad

2 likes, 5 replies

5 Replies

  • Poemsgalore
    Poemsgalore Mamaw

    Posted

    I was diagnosed with Nodular Prurigo in August, the Rheumatoid Vasculitis in September. I was started on very high doses of Prednisolone (3x1,000 mg infusions over 3 days) then 40mg tablets for one month, gradually reducing and now on 15mg daily. Also have 20ml Methotrexate injections and 20mg daily Leflunomide. when I first started on the new regime, all my itching stopped, it was wonderful. But there was a delay in me receiving the Methotrexate and the Pred was being reduced. Vasculitis itching has still not returned, but NP is rampant. Nodules all over my back, bottom and thighs. Some of the nodules now look like craters. I was hoping the Methotrexate would keep it under control, but I've only had 4 injections up to now and it usually takes about 12 to kick in!! Nobody can understand that it is impossible NOT to scratch when you have these diseases. That would be torture of the worst kind. 
    • Mamaw
      Mamaw Poemsgalore

      Posted

      Oh my..finally (But, so sorry!) someone like me!!!!!
  • jarvis36927
    jarvis36927 Mamaw

    Posted

    Thanks for your post Mamaw. I tried to reply but it keeps asking me for my details email and pass word again. I always have trouble with these sort of things. Jarvis. PS, Hope your feeling okay today.
    • Mamaw
      Mamaw jarvis36927

      Posted

      I got it!!!  I hope you're having a good day Jarvis...xx   .. Try another post!!!

      My NP's got extremelly itchy late yesterday.. so, the 13 on my right butt cheek, and my forearms and right calf got the 'brunt' of me sitting and scratching..then removing all the 'scabbing/hard skin'..washing and dressing them yesterday.

      They are 'raw' this morning,..and I cannot take a bath... I know they will hurt like @#$%^&**&^%!!! if I do!!!

      I see my Nurse Practitioner today..(It's been 4 months since my last visit.

      I need refills on the 2 antibiotics, prednisone, and hydroyzine. 

      I am enrolled in a Pain Management Clinic now, and doing "OK", but the pain patch has issues underneath it..itching and sore!!!.. It seems to be really bad when I have to take Acyclovie (for my re occurring shingles)..but, better once I stop that and increase the pred a little and "benadryl".

      I only have one large open wound on my back  now, at the base of my neck,..all others have healed!!! Only 3 open on my left calf, and many have healed ..all the way to flat Hypo Pigmentation scars , on my forearms..BUT..whew,..they are (Finally!!) at the stage (most) where when I have to remove the hard and itchy 'exudate' and skin, they bleed horribly...BUT.. they then (a few at a time) make a 'proper' scab,..which..IF I leave alone... does flake off and get smaller..to a 'pink' scar.

      The raised 'pink scars' will also itch though.. and I sometimes remove THEM and then it takes 4-10 more day to develop a 'scab' that can flake off and be flat.

      I am now using a Surgical Wash to clean them, and alternating from a (with painreliever..= benzocaine) antibiotic ointment and a paste (that is similar to diaper rash paste..but pink, because it has Calamine in it..with eucalyptus and tea tree oil too)..and '3M Nexcare brand" dressings (which keeps them m oist) and a "Bandaid brand - 'Comfort Sheer/quilted pad dressing..which keeps them covered (and not hurt so bad when raw/exposed) and allows them to dry out.

      It's a daily 'battle'... I know I won't 'win'... but, I see some improvement!!

      My kidneys seem OK... which is HUGE when you have any type of Vasculitis.

      I am still getting these tiny 'rice like' things in the NP sores..that seem to be a huge 'culprit' in the ITCH FACTOR, because once I can pull those darn things out..and bleed..the itch calms..(not the lind of calm that is relaced by pain..which we prefer over itching< and it insane!)

      my bottom is so, so, so raw, which i believe is due to the fact that we must use it to sit.. can't be in bed 24/7..or walk 247 either!!

      i also bought a burn ointment. it stings like *&^%$#$%^&!!! at first...makes me cry... but, it calms, and seems to really help!!!

      petroleum soaked dressings under the gauze pads help tons too.

      (with reducung pain when they --the dressings-- need to be removed for cleaning..and... big sigh..scrating!!!

      just trudging through..... super anti biotics (septra and doxycycline) also being refilled today..so i amready at the first sign of a staph infection or/and cellulitis. --i haven't had a ca-mrsa issue in almost 9-10 months!!! and="" it="" insane!)="" my="" bottom="" is="" so,="" so,="" so="" raw,="" which="" i="" believe="" is="" due="" to="" the="" fact="" that="" we="" must="" use="" it="" to="" sit..="" can't="" be="" in="" bed="" 24/7..or="" walk="" 247="" either!!="" i="" also="" bought="" a="" burn="" ointment.="" it="" stings="" like="" *&^%$#$%^&!!!="" at="" first...makes="" me="" cry...="" but,="" it="" calms,="" and="" seems="" to="" really="" help!!!="" petroleum="" soaked="" dressings="" under="" the="" gauze="" pads="" help="" tons="" too.="" (with="" reducung="" pain="" when="" they="" --the="" dressings--="" need="" to="" be="" removed="" for="" cleaning..and...="" big="" sigh..scrating!!!="" just="" trudging="" through.....="" super="" anti="" biotics="" (septra="" and="" doxycycline)="" also="" being="" refilled="" today..so="" i="" amready="" at="" the="" first="" sign="" of="" a="" staph="" infection="" or/and="" cellulitis.="" --i="" haven't="" had="" a="" ca-mrsa="" issue="" in="" almost="" 9-10="">

      my bottom is so, so, so raw, which i believe is due to the fact that we must use it to sit.. can't be in bed 24/7..or walk 247 either!!

      i also bought a burn ointment. it stings like *&^%$#$%^&!!! at first...makes me cry... but, it calms, and seems to really help!!!

      petroleum soaked dressings under the gauze pads help tons too.

      (with reducung pain when they --the dressings-- need to be removed for cleaning..and... big sigh..scrating!!!

      just trudging through..... super anti biotics (septra and doxycycline) also being refilled today..so i amready at the first sign of a staph infection or/and cellulitis. --i haven't had a ca-mrsa issue in almost 9-10 months!!!>

  • jarvis36927
    jarvis36927 Mamaw

    Posted

    Hi. Its Jarvis. When I was diagnosed with microscopic polyangitis in 2007. they thought that I may also have Churg Strauss also, but the tests then said as there was an absence of inflammamatory infiltrates ? on the chest exray it was less likely, though not impossible. I think this time It may be that I have. I was told by prof DM Carruthers of the City Hospital in Birmingham. England. Who specialises in this illness that it can jump in and out of the many dirent forms this illness takes. I got my consultant in Grimsby to refer me for a consultation on the NHS. He was really nice. I had a lot of tests and he confirmed I was on the correct treatment and also added amitriptyline for pain. Although I dont take it if I can manage as it gives you nightmares.

    I am going to see if i can get another consultation with Dr Carruthers as he is the leading specialist and has a team dedicated to this. They also do talks. We have ben twice and you can speak to him and his team. Regards. Jarvis

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