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.