Wegener's & Shingles

[wgrebel]

I was diagnosed with Shingles May 24, 2010. I have been in remission since April 5. The shingles have seemed to agrivate nerve damage on my right foot caused by the wegener's and have caused my right leg to swell like it did before I was declared to be in remission. My creatinine has also been elevated since I was diagnosed with shingles. I am taking Famvir to treat the shingles and Neurontin and Percocet for pain. The Neurontin is wonderful because it also helps my foot. The WG killed the nerves in the footpad of my right foot and before remission my foor would tingle and feel like it was rolling, Very Painful. Since remission the foot pain and swelling went away after a few weeks but have returned with a vengeance since I have developed this case of shingles. Have any of you had shingles and WG at the same time? If so, what di your doctors & specialists say? I am going to talk with my specialist Tuesday 6/1 after Memorial Day and see him June 7 because my rheumy wants me on imuran and off cytoxan since I am in remission.

[elephant]

Wgrebel, What is your creatinine now? Normal range is ( 0.7-1.2). Sometimes dehydration and medicines can elevate the creatinine. Glad your seeing your specialist, it possibly could mean you had a wegeners flare brought on by the shingles. Be persistent and hope your get your answers soon.

[Luce]

Doug's your man for shingles, he had a horrible case and left him with some damage - also had effects on his WG I believe.
Sorry you're suffering.

[wgrebel]

Elephant my last reading was 2.3 on Tuesday 5/25. It was 1.4 when I was released from the hospital in March & that was about two weeks before remission was declared. My preds have been increased from 40 to 60 mg & I am still on Cytoxan 200 mg a day. My rheumy is ready to switch to imuran but this case of shingles has thrown a monkey wrench into to process. 2.3 is what my creatinine was when I was released from the hospital in November 09 & it steadily went down until it was at one point normal while I was in the hospital in March 2010 to 1.4 but has crept back up now and the shingles really scooted it up there. The shingles have screwed everything up!!!!!!!!! My leg swells again and my foot is hurting again. I was soing so well to. Thanks for your info & have a good holiday.

WGREBEL

[Doug]

Yes, I lost hearing in my right ear (the shingles struck the right side of my face), have a scar that runs form my right ear to the cleft in my chin, have a scar that needs surgical remedy to allow my mouth to relax back into a more natural (and for me, physically comfortable) position.

A physiatrist put me on 600mg of Gabapenton four times a day, with a 60mg dose of Cymbalta at night to allow me to sleep. Though I feel much better than I did in 2007, I still have postherpetic nueralgia in my jaw, cheek, forhead, scalp. The drugs proved to be very helpful.

A couple months ago, I was out of Cymbalta, but felt I no longer needed it. I was starting to feel a bit buzzed with it, too, which may or may not mean I no longer had a medical reason to use it. I didn't ask my doctor to renew this prescription. The Gabapenten ran out, too. I felt pretty confident I could endure what residual pain came my way. I substituted a dose or two of aspirin when the pain really started to get me, but I stopped that within a week because of concerns with internal bleeding or stomach ulcers forming. I was taking quite a bit of it for pain, nmore than I thought I should.

I toughed it out again. The pain was constant, wearing, but not as bad as it was in 2007, when I was in so much pain I had to warn my visiting brother that he might hear screaming, but not to worry! Ha! And I did have bouts where I screamed, I was in so much pain.

The short of it, the level of pain finally wore me down to a point my church friends were planning visits to my house to pray over me, friends continually asked me how I was doing (because it was clear I wasn't doing too well with the pain). I missed funerals of two friends I dearly loved because the pain was over my tolerance limit on the days of the funeral, and I knew that being in a stressful situation, I would experience a jacked up level of pain: that's been my experience when stress comes into the picture as well.

Yesterday, I placed an order for the last bottle of Gabepentin I can get on that prescription. I took the final pill of Gabepentin this morning, felt better than I have since I stopped taking it. Yeah. I don't know if the pharmacy delivers on a holiday (Memorial Day, May 31st, in the USA), so it may be Tuesday before I see the medicine. I managed to get through the whole day, 6 AM to 10:20 pm, on the one Gabepentin, so I definitely will get with my doctor to re-evaluate my state of healing, and just how much of this pain killer I need.

Throughout all this, the WG has been in remission. I do feel it's a good time to establishing the state of my remission. For my peace of mind! Even though I haven 't had WG symptoms or have maybe I'b]ve been so preoccupied with the disaster on my face and the pain that I've missed them, but this August will be the first anniversary of the last time I had a doctor-established appointment.

[Sangye]

Wow, Doug-- that's awful. I hope you can find a good balance between fewer drugs and manageable pain!

WGrebel, am I reading it correctly that they declared you in remission even though you were still on 200mg cytoxan and 40mg pred?

[Lola]

Oh, WGrebel and Doug! I am so very sorry for what you are and have gone through with this dreaded scourge called shingles. It's just such a terrible double whammy to slap onto someone with Wegs, for sure.

I once had a very mild case which was arrested before it went berserk. My GP INJECTED each lesion with some lidocaine mixed with steroid. Who knows if that's a viable treatment. I think he was experimenting on me, but it seemed to work. I can't imagine the pain you've both suffered.

[wgrebel]

Sangye,

The specialist said I was in remission. My last SED rate was 4 and up until the shingles hit my creatinine was very low and close to normal. The specialist wants to take me off preds by August 2010 and my rheumy and specialist are conferring about removing me from Cytoxan to imuran. I go to see the specialist on June 7. That is what I have been told and I am hoping they get me off the cytoxan. I was doing well until the shingles hit. My foot pain from the numbness was down, no swelling in my right leg, no nodules in my lungs, creatinine was 1.3 & 1.4, no sinus problems. My hearing is improving and since the tubes come out I have heard much better than previously. When the WG hit I was nearly deaf. I take aldectone for my heart and lisinopril for HBP and have to move on and off both meds periodically when my potassium goes up. My creatinine was holding under 2.00 until the shingles hit. My foot pain has returned and my leg swells again. Swelling and pain is only on the right leg. I am ready to be off preds and cytoxan and from what I understand that is what the June 7 appointment and follow up with the specialist will address.

I have a question for you. Can you be in remission and be on Cytoxan. My first appt with my rheumy was quite interesting. Everybody, all the doctors, wanted to see the boy with WG. I felt like a circus animal :) My rheumy and his associate doctors came in the room to examine me and one of the doctors had his intern with him. So I have two rheumatologists and an intern examining me. My rheumy and the other rheumatologist at the clinic began to confer and the other rheumatologist informed me that I would probably be on Cytoxan for two years even after remission. Now they are looking at moving me to imuran. I have a co-worker who had Reynod's Phenomenon that takes imuran daily. The Reynod's turned his fingers black just like the WG did to my toes. THankfully he did not lose any fingers. Unfortunately I have lost two toes due to WG. Any info you have would be usefull & thanks.

Tim, WGREBEL

[pberggren1]

Wgrebel, one should not be on Cytoxan for more than 6 months at one time. It is very toxic.

I forget, you are from Atlanta, GA, right.

[jola57]

WGrebel. cytoxan and pred may put you into remission but once achieved you should be taken off cytox and put onto a "maintenance" drug such as methotrexate or cellcept and weaned off slowly from prednisone. While 6 months is the standard for being on cytox, it depends on your response to it and you may well be on it for a whole year. That is not you case though, it seems that you are close to remission and your doc wants to put you onto the maintenance drug. Usualy you should take both drugs for a month or so before totaly quitting cytox. Now as to being on cytox for two years, that would seem to me to be too drastic and unnecessary. Definitely ask why when all the literature points to 6 months to a year.

[elephant]

Many Specialist want to keep the Cytoxan under 6 months and move on to something else, because the high risk of bladder cancer and other cancers.
WGrebel, you should probably make sure you don't have a blood clot in that leg too.
My Rhuemy will use cytoxan for last resort....but most likely put me on the RTX.

[Doug]

CellCept and Bactrim were the maintenance drugs my doctors had me on once they felt I'd graduated to remission. Later, a year or so after, I was taken off CellCept as well, because the UCH-Denver weggie specialist told my doctor that was adequate to maintain remission at that point. It seems to be true.

[Sangye]

WGrebel, when you say you see a specialist, do you mean a VF Wegs specialist or a regular rheumy?

I've never heard of a VF doc keeping someone on ctx for 2 years. That's WAY too long. Like Phil and Jolanta said, 6 months is the usual. One year tops, but even that is becoming less common.

I also don't think they can call it remission when you're still on 200 mg cytx and 40-60mg pred. They can say the Wegs is responding well and becoming less active--better-controlled-- but remission? No. Remission is when you don't have active disease despite being off the Wegs drugs (pred and/or immunosuppressant) or on very low doses of them. For example, Wegs research defines remission as needing 5mg pred or less.

I really think you need to get a VF doctor on your case. Either go to a center or get one to consult with your docs. They're telling you some nutty stuff!

[wgrebel]

I have been on Cytoxan for six months. May was the sixth month. My specialist in Nashville, TN whom I learned of through the vasculitis foundation website is who declared me to be in remission April 05, 2010. I had labwork completed tonight to have numbers ready for the visit on June 07, 2010 to discuss mving from Cytoxan to Imuran and a reduction in prednisone. The specialist has already informed me that he wants me to be off the prednisone by August 2010. That is why I have been asking all the questions about Imuran, I am probably go to be on the drug soon and I want to know all I can about it. My lab numbers tonight were, Creatinine (1.4) & potassium (4.2). The creatinine was at (1.3) when I was in the hospital in March and stayed low until I developed the case of shingles I am presently fighting. The rheumatologist I see wants to move to Imuran but does not want to make any moves until he, myself, & the specialist discuss this on June 07, 2010. I am ready to get off Cytoxan. I hate being on chemotherapy and having to take a drug that can cause cancer and God knows what else. My SED rate was 4 the last time it was checked.

To answer the above question from the above post. I am from the American South. I live in North Mississippi. I attended the University of Mississippi (Ole Miss) and the Rebel is the mascot. I am an hour from Memphis, TN & three hours from Nashville, TN where my specialist is located. Pberggren1, you are from Saskatchewan, correct? Are you a fan of the Saskatchewan Rough Riders? A former Ole Miss quarterback, Kent Austin, played CFL football for several years with the Rough Riders before coming back to Ole Miss as the offensive coordinator. He has since left to coach at another school. This last part was off subject a bit but it is good to inject something other than medical speak into the conversation occasionally.

[wgrebel]

Elephant,
I have already been tested for blood clots in my legs. Back in October 2009 when I was diagnosed I was placed on Coumadin and presently take 2.5 mg three days then 5.0 mg then 2.5 mg again for three days. The clots are disappearing but I do not have any word on when I will be off coumadin. Are you on Coumadin and did you have blood clots? If so, were you on a blood thinner and how long were you on the blood thinner before being taken off the medicine?

[wgrebel]

Sangye,

I have a VF doctor on my case. The "nutty stuff" you are saying was told to me in December of 2009. Since that time I have contacted a speacialist through VF which is who has stated I was in remission. I am only doing what he said. My rheuamtologist in May 2010 has stated he wants to move me to Imuran after consulting with the VF doctor. The specialist is Stephen Capezzi, I learned of him throught the vasculitis foundation. He is listed on the VF website. THEY Want to move me from Cytoxan to Imuran and that is the whole point of the appointment June 07, 2010. The rheumatologist who told me that about the Cytoxan (taking it for two years) is not even the rheumatologist who is treating me. It took several tries for me to find the right combination of doctors to treat this and I have now done so. I first went to a pulmonologist who knen nothing about WG. I then went to a rheumatologist who managed my care until I went to see the VF specialist April 05, 2010 who based on my numbers stated I was in remission. I have also learned about medicine and literature over the last few months that what the book says does not always apply. I had a bout of congestive heart failure in March 2010. All of my doctor's have concluded it was the WG that caused the heart failure. None of the literature I have read mentions the heart as a target but it happened. Also, one thing I have learned about WG is that each case is different.

[Sangye]

That explanation helped a lot! I'm still confused about the pred-- what's the lowest dose you've been on?

It's odd that you've never seen heart problems listed for Wegs. It's usually on the list as "uncommon but possible." Heart involvement is usually silent, as you've learned the hard way. Our docs should be ordering an annual echocardiogram to check heart function--most know this, but some seem to skip it. Even my lousy original rheumy did it, though!

You're absolutely right that every case is different. Just look at this group-- a lot of the times it looks like we have different diseases altogether.

[elephant]

WGrebel, I developed a blood clot when I was 16 and at that time I was hospitalized with IV heparin for a week and then put on warfin for 6 months. I don't remember much. To this day my left leg will swell up and feel tight...had it checked out no blood clot.
I know you can still get blood clots even though your on coumadin, so you know your body....if something isn't right then get it check out.
I get yearly echocardiograms....

[JanW]

I got a baseline echo and will get yearly ones as well -- my rheumy has never ruled out almost any part of the body as coming under possible attack from WG. Sounds like you've really been through the wringer! My numbers are likely tons higher than yours (for instance, my last SED was 48 and last P3 was 98) but I seem to be clinically healthier than many on these message boards. You are absolutely right that the disease manifests in many different ways. I think I'm also one of the few here who have never been on pred (for this disease anyway), which was certainly controversial to some when I mentioned it.

[wgrebel]

I had an echo March 30 & another is schedule for July 30. My heart increased 10 percent in size from my hospital stay. I am taking aldectone, coreg, and lasix for my heart. The cardiologist informed me that my heart was making good progress and would heal but it would take 6-9 months and that a 10 percent improvement meant the medicine was working. I am going to ask for a sonnagram of my legs in July to check on the clots. So far the coumadin has held them in check. My ENT has said any organ in your body is fair game so any one out there reading this dont rule out your heart as a target. WG is an evil, sneaky enemy.

[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. :)

[Sangye]

I'm glad they figured out why it wasn't healing. I'm sure your biopsy results will be fine. :)

[Natalie]

thanks Guys and Yes I do belive the biopsy will be fine :) It feels fine just dosnt look very nice