Wegener's & Shingles

[Sangye]

I had "uncountable" numbers of clots in both legs and both lungs when I first got dx'ed. My lungs were hemorrhaging when the clots formed. I was also on 1,000 mg IV solumedrol (equiv 1,560mg oral pred) when the clots formed, so it can happen to anyone at any time. Because of the extensive numbers of clots, I have to remain on coumadin for the rest of my life.

It's great to hear your heart is healing, WGrebel!

[wgrebel]

Sangye,
The lowest dose of prednisone that I have been on was 30 mg. It had to be upped when my shingles developed because my creatinine spiked to (2.3) May 25. My creatinine was (1.4) June 2. I take lisinopril which also seems to mess with my kidneys. I have to take breaks from the lisinopril periodically (3 weeks on and one week off). I am now on 2.5 mg lisinopril a day and full aldectone a day. The swelling is improving in my leg. I cannot sleep because my shingles are flairing and causing me just enough pain and irritation not to be able to sleep. It is different now that I have completed a round of Famvir. The shingles pain has went from severe, harsh throbbing pain to more of a constant wasp sting pain sensation. It is hard to sleep when you are experiencing what feels to be a perpetual wasp sting. The upped prednisone helps the shingles when I initially take it but when it wears off the pain returns.
What is your Coumadin therepy regimen? I take 2.5 mg for two days, 5.0 mg the third day, and then back to 2.5 mg for two days with a weekly INR check. You were on alot more solumedrol that I was when I was diagnosed. I was only on 120 mg when diagnosed. I was fortunate in my diagnosis. I started this journey with a "sinus infection" that began around 8/21/09 (on my 35th b-day) and after a week I went to the doctor who gave me decadron and an antibotic that helped for two days and then I was worse. I went to my local ER with my sinuses on 9/2/09 & was given more antibiotics, some type of sinus medicine I cannot remember, motrin for the headaches, & sent home. No improvement---and a week later I was in the hospital for a severe sinus infection. My sinuses were completely blocked on the CT scan & MRI. My lungs were X-Rayed and were clear. After three days in the hospital and massive antibiotic treatments I was released with a decadron pack & percocets for my sinus headaches. I had two severe sinus headaches and one ear attack the second day I was in the hospital and it took massive blasts of morphine to quell the pain. I was released from the HP on 9/14 or 9/15. By the next week I was worse than I was before and my hearing began to weaken. I went back to my doctor for my post discharge follow up & he sent me that day to one of his friends who is an ENT & after a second CT scan showed complete sinus blockage surgery was scheduled. I had sinus surgery on 9/30/09 & tubes were put in my ears to ease the "ear infections". I felt great for about three days to a week but by the end of the week (10/7) I was losing my hearing to the point of deafness and suffering severe pain in my sinuses and ears. I went back to the ENT and he looked at my ears and noticed tissue had balloned over my tubes. Well, he took local anasthetic & punctured the tissue in the office that day 10/10. That hurt like nothing you can imagine. I went home with loritabs and some nystantin because I had developed thrush. I went to a football game the next weekend (Ole Miss v. Alabama) with my wife and girl from our church youth group and my cousin who is about her age. My wife & I were playing Cupid I could not hear that Saturday at the game and by that Sunday was basically deaf. On Wednesday 10/18 I woke up with a fever. The fever intensified that day and by that night was 103 degrees & I was completely lethargic. My wife took me to the local ER and my lungs were X-rayed and the ER doctor determined I had phneumonia (sound familiar--if you read about WG phneaumonia is a common misdiagnosis). I was admitted to the HP and blasted with antibitics and breathing treatments. No improvement---by Sunday my fourth day in the hospital a CNA noticed my feet were swelling. She asked if she could wash my feet. By Monday they were swelled and my toes were turning purple. I had spurrs in my fingernails & was lethargic. I could not even feed myself. A new doctor rotated on who had practiced in Jackson, MS prior to her coming to the hospital in Corinth, MS where I live. (Corinth has about 15,000 people and is in NE MS about 1.5 hours east of Memphis, TN). She suspected immediately I had WG and contacted Baptist HP in Memphis and an infectious disease specialist and I was transferred. The doctors in Memphis shared her suspicions and I was put on the 120 mg of solumedrol and the clots were discovered. By the time I was transferred to Memphis three toes on my right foot were black and one on my left foot had been turned black due to the damage from the vasculitis. I eventually lost a toe on each foot due to WG but thankfully the others healed. Memphis did a lung biopsy and a c-anca test and I was positivly diagnosed with WG that Friday. I was discharged from the HP that next Wednesday. I was home over the weekend of Halloween and the next weekend for my wife's birthday but began experiencing stomach problems of un-imaginable pain. I was put back in my local HP on 11/12/09 and after two days and a doctor informing me that I was too complicated I just needed to go to Memphis I was transferred to Memphis for a nine day HP stay where I had every stomach test completed and was released Thanksgiving week. My toes were still black but I felt better. I had surgery to remove two of the toes that did not heal in February 2010. My rheumatologist around February 17, 2010 determined I was moving toward remission and lowered my preds and cytoxan for the first time. It threw me into a severe flair-----I began retaining fluid, could not take a breath, nodules back in my lungs, and the Friday before I went in the hospital (March 5) some of the fingers on my hand quit working. I went to the ER in Tupelo and was diagnosed with Congestive Heart Failure and after 3.5 days in the ER I was stepped down and released March 15, 2010. I made great improvements in March and while in the HP in Tupelo my wife & I contacted Dr. Cappezzi off the VF homepage and made an appt with him & after his examination determined I was in remission. I was doing great heartwise & WG wise until this bout of shingles hit me. Sorry I babbled but I cant sleep anyway so I might as well bang on a keyboard.
WGREBEL

[elephant]

I couldn't sleep either WGrebel when I was on 30 mg of prednisone, I slept two hours a night and then took a two hour nap in the day. I was a walking zombie!
Wow what a story! Thanks for sharing, you helped many people on this forum get a better picture of what you went through.

[Sangye]

WGrebel, I take 4 mg of coumadin every day. I eat whatever I want (vitamin K-wise). I started a thread not long ago called something like "Wegs and Blood Clots." I put a bunch of stuff I've learned about coumadin, and home INR testers, etc....

I went through the "It's pneumonia" numerous times. It's impossible to tell the difference between lung hemorrhage and atypical pneumonia on CT, and x-rays are useless. And if you take mtx and have the common allergic reaction of pulmonary infiltrates-- forget about it. I had that in 2007 and no one could figure out what it was. I didn't have Wegs docs then.

[Natalie]

hello , I got shingles back in the 1st yr I was diognosed with WG . I had a alergic reaction to Bactrium tablets first then a shingles out break that appeared on my boob and on my back , I didnt go to the doc for 4 days I was put on shingles medicine that you are ment to have within 24 hours (I think ) of a outbreak , they thought even thou it had been over that time I needed it because of my underlying WG condition . It cleared up ok with in a few weeks . Doc said It was because of the steriods that I got shingles ??.
I wonder if this is why by boob wound wont heal now ? I t was the same side a s the shingle out break ?? , thanks for bringing this up Tim , im going to reserch shingle damage now

[Sangye]

That's very interesting, Natalie. Let us know what you discover.

[jola57]

Natalie, I don't know if this will relate to your boob but I had surgery for removal of non malignant cancer 3 years ago with about 1/6 th breast removal. It went fine, stiches were taken out but this small little end part had a little scab that just would not go away. Then one year later it started to ooze. Back into surgery and a cyst was removed. that was 2 years ago and all is now nicely healed. I was on cyclophosphamide 150mg and 50mg pred at the time.

[Natalie]

Natalie, I don't know if this will relate to your boob but I had surgery for removal of non malignant cancer 3 years ago with about 1/6 th breast removal. It went fine, stiches were taken out but this small little end part had a little scab that just would not go away. Then one year later it started to ooze. Back into surgery and a cyst was removed. that was 2 years ago and all is now nicely healed. I was on cyclophosphamide 150mg and 50mg pred at the time.

hi Jola , thanks for sharing this , I had some more surgery on Wed just gone they were saying it was a fistula why it wouldnt heal .... so I have more missing boob now . They also did biopsy and other culture tests while I was out . I havnt got the results back yet of any of them . I was hoping to see the surgon after the surgery but they all went home .. .. hope to get the finding of the op and biopsy early next week .

[jola57]

Will be thinking of you Natalie.

[elephant]

Hope to hear good news Natalie. Take care of yourself.