http://www.mdjunction.com/forums/wegeners-granulomatosis-discussions/feed http://www.mdjunction.com/forums/wegeners-granulomatosis-discussions/feed en-us Copyright (C) MDJunction.com. All rights reserved. Thu, 23 May 2013 19:25:34 -0700 http://www.mdjunction.com/forums/wegeners-granulomatosis-discussions/general-support/10217466-wg-in-australia#10693383 Hello, I am an Aussie (47 years old) and was diagnosed in 1992 (age 26)...so have had the disease for a long time.I did go into remission for about 4 years and then the disease returned in 1997. I have had it since then till present. Pretty much every organ, except the kidney (thankfully) has been effected by this disease. If I can help in answering anything you may want to know, please feel free to ask. skwg... Sun, 19 May 2013 16:35:00 -0700 http://www.mdjunction.com/forums/wegeners-granulomatosis-discussions/general-support/10680630-relapse-this-week#10692521 Hi Gardengal, I’m sorry to hear about your relapse, but I am glad to see you’re getting treated at CC by some of the best doctors and have no major organ involvement; I hope it stays that way. I was diagnosed in January 2012, started treatment and after 6 months I started lowering the prednisone. I got down to 20 mg before having a flare in February, so I increased my prednisone to 50mg. I understand what you’re going through and hope you are on your way to feeling better soon. In regards ... Sun, 19 May 2013 09:19:34 -0700 http://www.mdjunction.com/forums/wegeners-granulomatosis-discussions/general-support/10686790-constant-back-pain#10686912 Hi! I experience the same thing whenever I have flare ups or an actual relapse. It causes severe joint/muscle pain everywhere, but the back pain is pretty prominent... especially in between my shoulder blades. Unfortunately, high doses of Prednisone is the only thing that has worked for me. Ask your doctor about that, if you don't already take it. The pain is caused from the Wegener's, though... which sucks, cause it makes it so hard to get under control. Hope you feel better soon!... Thu, 16 May 2013 15:12:32 -0700 http://www.mdjunction.com/forums/wegeners-granulomatosis-discussions/general-support/1932254-good-diet-during-treatment-for-wg#10669938 Would it be possible to get the food plan? My email is mmaddiga@gmail.com... Wed, 08 May 2013 19:54:11 -0700 http://www.mdjunction.com/forums/wegeners-granulomatosis-discussions/medicine-treatments/10660868-ritiximab-did-not-work-the-way-it-was-suppose-to#10666199 Thank you!... Tue, 07 May 2013 07:56:28 -0700 http://www.mdjunction.com/forums/wegeners-granulomatosis-discussions/general-support/10356614-rituxan-treatments#10640863 Thank you everyone for your feedback. My doctor ended up keeping me on Cytoxon for 6 months. He is now slowly taking me off and will use Rituxan as a back up if I relapse. He is going to put me on a maintance drug, but can't remember the name. I can't go on methotrexate because my system broke through the medication.... Wed, 24 Apr 2013 21:39:22 -0700 http://www.mdjunction.com/forums/wegeners-granulomatosis-discussions/general-support/10513236-new-to-wegners/limitstart/10#10627028 Hi jer, yes I am in a study and they do measure my B cells every six mos. I started in the program every 4 mos then after about 2 yrs moved to every six mos. It seems to be one of the largest collection of C-ANCA related pts that I'm told of. Dr. John Niles runs it. He is a nephrologist at Mass. Gen. Hosp. in Boston. If you are interested I could give you the phone no. of his head nurse who makes it all happen. I don't know anything else about this other than it was recommended to me by ... Thu, 18 Apr 2013 05:20:01 -0700 http://www.mdjunction.com/forums/wegeners-granulomatosis-discussions/general-support/10596382-lowering-my-prednisone#10621208 I have been through the mill with prednisone. My doc would only decrease a certain amount per week because of the side effects. i felt horrible when just going down. i cant imagine taking it every other day... i have a transplant and am on prednisone because of the weggies....... Mon, 15 Apr 2013 16:38:45 -0700 http://www.mdjunction.com/forums/wegeners-granulomatosis-discussions/general-support/10621116-wegeners-acting-up-again#10621116 I was diagnosed with Wegener's back in February of 2000 with a blood clot in my right leg nd kidneys working at less than 20%. For the last year have been dealing with open sores on right lower leg and ankles, lab work shows kidneys might be involved again... Mon, 15 Apr 2013 15:50:05 -0700 http://www.mdjunction.com/forums/wegeners-granulomatosis-discussions/general-support/10606968-biopsy-done-yesterday#10606968 Hi, my name is Hope. I've been chasing a disease that comes and goes like a thief in the night and leaves behind obvious signs of wreckage but can never be caught. In 2004 I was diagnosed with undifferentiated connective tissue disorder. After signs of damage to several organs, it became diffuse undifferentiated...Now I am maxed out on Imuran, but it's not working very well anymore and I drag my sorry ass everywhere I go. Yesterday, I had a biopsy of scabby tissue in the site of the nasal se... Tue, 09 Apr 2013 08:09:13 -0700 http://www.mdjunction.com/forums/wegeners-granulomatosis-discussions/general-support/10604357-subglottic-stenosis#10604357 I've been having trouble breathing for about 2 or so months now and when I told my Rheumatologist, he said it was bronchitis. Turns out it's something called subglottic stenosis that is caused by WG. I was in the hospital for 5 days after trying to go to class and experiencing the feeling of someone throttling me. It was the most terrifying experience of my life and all they could do was keep me on oxygen. They've boosted my prednisolone from 8mg to 60mg and are quickly decreasing it but I'm... Mon, 08 Apr 2013 01:21:19 -0700 http://www.mdjunction.com/forums/wegeners-granulomatosis-discussions/general-support/10416285-wanting-to-understand-remission#10604346 Hi Kayah, so sorry to hear about your daughter. I had a similar time 2 years ago when I was first diagnosed. I can't say for sure what would cause those symptoms, but the best thing to do is take note and discuss it in depth with her Rheumatologist. I wish the best for you and your Daughter. Stay Strong!... Mon, 08 Apr 2013 01:04:54 -0700 http://www.mdjunction.com/forums/wegeners-granulomatosis-discussions/general-support/10594734-lowering-my-prednisone#10595212 I have been on 2.5 mg per day for some time. It doesn't make sense since this is a very minimal dose, but if I skip a few days my shoulders get intense pains and I can barely lift my arms. I have never investigated this with steroid levels in the blood or some such studies, but I think what you are experiencing is very real. Hopefully you can reduce you dose slowly and get down to a modest level without side effects of joint pains, etc.... Wed, 03 Apr 2013 18:14:40 -0700 http://www.mdjunction.com/forums/wegeners-granulomatosis-discussions/general-support/10537208-hi-i-am-here-to-share-stories-with-you-on-wegeners-disease#10590928 Thanks for sharing your story! You sound like a positive person and I'm sure even though your feeling weak and frustrated you have still found purpose in life. We just keep moving ahead don't we? :)... Mon, 01 Apr 2013 19:43:53 -0700 http://www.mdjunction.com/forums/wegeners-granulomatosis-discussions/general-support/10576594-relapse#10588527 I know how frustrating waiting can be. Yes, my dx was made ultimately with an open lung biopsy, not a kidney biopsy which I think is more common. I have always been cared for by a pulmonary doc and a nephrologist so it sounds like you are on the right track and maybe they can catch this before it blows up. Twenty years is a long time. I thought I was doing well have begun my journey 16 yrs ago. Good luck.... Sun, 31 Mar 2013 16:43:26 -0700 http://www.mdjunction.com/forums/wegeners-granulomatosis-discussions/general-support/10584882-wondering-about-going-on-disability#10584882 Wondering about your story about applying for disability. Were you able to get it? Was the process grueling? It was suggested I check it out. Was hoping for some feed back. Thanks... Fri, 29 Mar 2013 18:42:06 -0700 http://www.mdjunction.com/forums/wegeners-granulomatosis-discussions/general-support/3647214-ribbon-color#10553528 its red, the ribbon for WG is red... Sat, 16 Mar 2013 13:44:07 -0700 http://www.mdjunction.com/forums/wegeners-granulomatosis-discussions/general-support/10533253-predisone#10535313 Never got off it completely. Down to 2.5 mg daily which is a pretty small dose. Agree with the joint pains and, in my case, overwhelming fatigue. Your adrenal glands are supposed to kick in and begin making your own but I also would be concerned that lack of the steroid would allow a flare up of the primary disease process. At least its not like taking 40 mg a day which I did at first and I put on weight, didn't feel right and it was pretty noticeable but the disease got under control. Been on... Fri, 08 Mar 2013 17:50:31 -0800 http://www.mdjunction.com/forums/wegeners-granulomatosis-discussions/general-support/10493642-wg-affecting-the-kidneys#10496016 Hi! Wegener's has mostly affected my kidneys, as well... Cytoxin is more toxic than Rituxan, long term, but it worked really well for bringing my kidney function up, when I was first diagnosed. I was good for over a year, but just had a relapse a few months ago, which did bring the kidney function back down. I'm now on pills called Cellcept, which help suppress relapses in autoimmune diseases. They take about a month or two to kick in, but taken with prednisone, it is helping (will slowly taper ... Tue, 19 Feb 2013 16:55:02 -0800 http://www.mdjunction.com/forums/wegeners-granulomatosis-discussions/introductions-personal-stories/2098505-who-has-been-able-to-get-off-dialysis#10489103 I was on dialysis for about 11 months and then I began to feel worse whenever I would be dialyzed, so my nephrologist suggested we skip a session, then skip a couple sessions and finally he thought we should try not being dialyzed at all. My renal function is not perfect but it acceptable for not needing dialysis (Creatinine 2.3) No explanation, was under treatment for about 11 months as I said, first with Cytoxin and Prednisone, then CellCept and Prednisone. That was sbout 16 years ago and st... Sat, 16 Feb 2013 16:48:06 -0800