Hello from Lexington, Ky

[Thinker]

I was recently diagnosed June 13 and will post more details in Weggies Stories. By the time I was diagnosed, it had affected my left eye with anterior uveitis, left ear and sinus blockage and crusting, neuropathy in both legs and somewhat in both hands, kidney involvement and severe migratory joint pain, and drenching night sweats. At my lowest point, I got so debilitated I had to use a walker to walk, and I had so much pain and difficulty getting up I had to get a lift chair and elevated toilet seat. I initially started treatment with 60 mg prednisone only the end of May prior to getting an official diagnosis, then bumped up to 80 mg prednisone after being diagnosed, was waiting for all my lab tests to come back checking for underlying infection to start the cyclophosphamide, when my kidney function dropped by 50% with a creatinine reading of 1.57, so admitted to the hospital July 1-4 for IV 1000 mg burst of prednisone for 3 days and kidney biopsy. While there, I started oral cycylophosphamide 150 mg, and have been tapering down my prednisone by 5 mg per week, currently on 65 mg. I'm also on Dapsone 1x/week and Prilosec 40 mg daily. My left eye was treated with steroid drops, and thankfully is much better with the ophthalmologist only seeing 2 inflammation cells on my last appointment. My joint pain and night sweats are gone, my left ear unblocked, and the ENT said my sinuses looked good with no damage. I had been using the NeilMed sinus rinse bottle the past year so I guess that may have helped. My creatinine reading at my last labs July 9 were 1.32 so kidneys are improving. The neuropathy, unfortunately, is still there. I did have an EMG test and neurology consult last week. I declined any kinds of additional meds at this point, but did get a referral for physical therapy. We have an HMO insurance and I'm currently seeing physicans at the University of Kentucky which is a teaching hospital and clinic. I did change my rheumatologist from the one I was initially assigned and feel confident with my current ones.

I was planning to join sooner but the day I got admitted to the hospital I broke part of my tooth/filling so had to get that fixed when I got out, then a few days after I got home we got sewer backup from the toilet in our finished basement, so had to deal with our homeowners insurance and restoration company, then I got called up for jury duty so had to deal with that. Oh yes, then got a mouse in our house from the plumbers having to keep the basement door open while cleaning the sewer line, but we caught it fairly quickly. I also felt like I lost a month of my life when I was at my sickest, and have two children ages 10 and 13, and two dogs, so was trying to get caught up and now getting ready for the next school year which will start August 13. I have gotten so much good and useful information from searching the message boards that has been very helpful. I'm looking forward to joining your community for support and friendship!

[mishb]

Hi Thinker and welcome

Gosh you certainly have had your hands full in the past month - have you scared a black cat lately :tongue1:

I'm glad you are confident in your specialists and also that you are starting to reduce your pred.

Keep searching on here and we welcome your input

[Thinker]

[/QUOTE][/QUOTE]
Thanks, Michelle
Yes, I think I went beyond just scaring a black cat, I was waiting for a plague of frogs next! I don't know why everything bad happened at once, but it did. It was very stressful which is just what we don't need. Fortunately, things have settled down this past week. There was some uncertainty if our homeowners insurance would cover the sewer backup damage in our basement, but it will, so I am very grateful for that. I'm trying to take things one day at a time and focus on getting through the day. If I overdo it, I seem to feel worse.

[Debbie C]

Hi thinker, its funny you are talking to Michelle about a plague of frogs. ( Look at her avitar ! ) Glad you are starting to see some improvement and hopefully nothing else breaks !

[vdub]

You have indeed had a bad go at things. Sounds like the wegs really hit you hard and suddenly. I'm glad they caught it when they did and you didn't have any more damage.

Welcome to the forum!

[annekat]

Welcome, Thinker! You've been through a lot, but I must comment that you are lucky your ENT says there is no sinus damage. Some of us, including me, are past the point of no return on that one. Keep doing the sinus rinse, multiple times in a session is done by many on here. I'm glad you are excited about being part of our community. It is a great one, and I don't know what I've had done without it these last 3 years. I look forward to hearing more from you.

[Thinker]

Thanks so much for the warm welcome! You're right Debra C, it is funny about the frogs! Ha! I have such brain fog I didn't even notice that, I think it's because I haven't slept more than 3 hours straight since starting the prednisone! Thanks for the welcome vdub, most of my damage now seems related to my kidneys and neuropathy, I'm hoping they both keep improving, but as I've learned with this disease, it's unpredictable and yesterday I was having a lot of cramping pain in my right toes whenever I walked. Seems better today though. Thanks also for the welcome annekat, I'm sorry about your sinus damage, I was very relieved after the ENT checked my sinuses because one of my symptoms this past year (that I didn't connect to my other roaming joint pain symptoms until I was diagnosed) was I started having more sinus problems this past Fall with bloody noses and crusting which I thought was just chronic sinusitis. In retrospect, I may have started having symptoms of this disease many years ago, as I have had chronic sinus infections for the past 8-9 years, and they always started and were worse on my left side, which is where the Wegeners affected me now, including my left eye and ear. I had so many antibiotic resistant sinus infections 7 years ago that I had surgery to fix my deviated septum and straighten my nose that had been broken as a child. Fortunately, for me now, they didn't do anything surgically to my sinuses. I had used the Neilmed sinus rinse when recovering from that, so started using it again a couple years ago, and I think it helped this Fall when I started having crusting, to flush them out of my sinuses.

[lag713]

Welcome! I've often wondered when the symptoms really started. I think the disease may have been smoldering for some time before my joint pain began and I sought treatment. It sounds like you were likely dealing with the disease for some time. I'm glad you have a diagnosis and are being treated. I look forward to hearing more about you.