I'm glad I'm not alone, and happy I found you!

**calfaro443** · 05-09-2010, 02:36 PM

Hi there everyone,
I'm so happy I found this support group. I've been reading some of your stories and I feel relief! I thought everything I'm feeling was all in my head.
I was diagnosed in March 2008 but it all started in Oct. 31,2006. Like mostly everyone, it all started with a sinus infection. Before that I was always in good health. The sickest I ever got was a simple cold and would go away on it's on in about three days. I never had to go to the doctor for that.
By the way, I was 30 yrs. old when all this mess started. The sinus infection continued for a couple of weeks when on top of that one morning I woke up with severe pain on one of my feet and then moved to my other foot. So in December when my insurance kicked in, I went to my fam. doc. and she put me on antibiotics for the sinus infection and said the pain on my feet was probably due to my weight. That didn't make any sense to me (about my weight) 'cause I had been weighing that much for over 3 yrs and felt just fine. In January 2007 I finally decided to see a podiatrist because the pain in both my feet was still severe. At work I sit down in front of a computer all day and the only time I would get up was to go to the rr. It was so embarrassing 'cause I walked like a 90 yr old woman and everyone would always ask what was wrong with me. I still hadn't got over the sinus infection but paid no mind to that since my major issue was the pain on my feet. So the podiatrist said I had plantar fachiatist ( i think that's how you spell it) and shot both my feet with steroids. That was sooooooo painfull. Then he said to come back in two weeks for some more shots. Yeah right! Never saw him again. Then by the end of Febuary I noticed the pain on my feet going away but then one of my eyes started getting red. The redness continued for two weeks before the pain in my eye came. My eye was red, sensitive to light, painfull, watery, and I had a hard time keeping it open. I went to a regular eye doc. and he said it was a bacteria so he prescribed antibiotic ointment and said to come back if it didn't go away. So of couse I went back because that didn't do anything for me. So then he noticed I also had a cold and said it was probably allergies. REALLY? In just one eye? So he gave me allergy pills and steroid drops. Then he said to come back if it didn't go away. So then I went back and was almost in tears from the pain in my eye. I mentioned to him that the only thing that would relieve my pain was Ibuprofen but then it would only last a few hours. He totally blew me off and said that Ibuprofen was not necessary and that I was wasting my time taking it. So he referred me to a medical eye doc. She was good. Although she went through the same steps he did, she also put me on high doses of NSAID's. That did the work but as soon as they would wear off, it all would come back again so she didn't undestand why. She said all her patients have always gotten better at just that. Not me! So she put me on steroids (prednisone) . She gave me one weeks worth and anyone who's ever taken steroids knows that they start you off with a certain amount of pills and the next day you take one less and you continue till you finish them all. So during that time I was feeling good but not completely 100%. Even my sinuses cleared up. She was happy too! But as soon as I finished my meds...BAM it all came back again. She was frustrated along with me. She then suspected there was something causing all this inflammation in my eye that wasn't any eye condition she had ever delt with. She then ordered blood work and gave me more steroids to keep my eye from making me miserable. When I saw her again, she gave me my results and said not to panic because it wasn't certain that I had what the labs suggested I had. The ANCA test came back positive so Wegener's was something to be considered. I had never heard of it and neither had she. She said " this is not an eye condition but that is what's causing it. Find a doctor that can treat you for that and continue to see me for your eye". O.K so I'm making this story too long so let me cut out alot of details. I went through two general doctors, two eye doctors, one podiatrist, three ENT's, one allergist and two rheumys to finally get me where I am now. My rheumy has me on 20 mg of pred. a day and 20 mg of methotrexate once a week. I currently see her and an ENT and an eye doc to keep my LIMITED WEGENERS under control. How I feel varies from day to day. I have good days and bad days. I get nausea, red faced and body aches everyday along with back pain but not as bad as I use too in the beginning. I now consider those pains as normal everyday feelings. All in all, I'm happy to still be here.

**beeinformed** · 05-09-2010, 06:11 PM

Hi!

I was just wondering if you see an ocular immunologist (eye doctor who specializes in inflammatory eye conditions) for your eye symptoms. The reason I am asking this is because I had seen several eye doctors (who did not give me the correct diagnosis) and then when I started seeing my current eye doctor, who specializes in ocular immunology, I was finally given the correct diagnosis.

In June, 2008, I had similar eye symptoms as yours: pain, redness, tearing as well as severe upper lid inflammation, could not look at direct sunlight without getting severe pain and very severe dry eyes (previously had "mild dry eye symptoms").

After having seen a zillion eye doctors, my current eye doctor(who specializes in ocular immunology) told me that I had a severe acute inflammation of my tear glands, where unfortunately within a period of twenty-four hours, I had lost seventy to eighty percent of my tear glands (lucky me!

) which is due to an underlying auto-immune disease.

If I had seen this eye doctor when I had this acute inflammation of my tear glands, he told me he would have given me systemic steroids and immunosuppressant therapy (i.e., cellcept). Unfortunately, I had seen him a number of months after this attack, so he was not able to prescribe this treatment.

If you're currently not seeing a ocular immunologist, you might wish to consult with one. There is a website called "uveitis.org", which has a directory of ocular immunologists (my current eye doctor is listed in this directory) and before I made an appointment to see this doctor, I had consulted with my rheumatologists, who said this doctor was a very good choice.

I hope this information is helpful for you.

**elephant** · 05-09-2010, 11:47 PM

Hi Calfaro, First of all Welcome! I was wondering if your seeing a Wegeners specialist? You have a great eye doctor, she really did a great job trying to figure out what was wrong with your eye. I can't tell you how many eye doctors I have seen that blew my off. I still have a little eye pain but I had all the symtoms you had ( left eye). I now have glacoma secondary to the prednisone. I even questioned one eye doctor, " Why this one eye?" This was going on for years!

**Sangye** · 05-10-2010, 12:40 AM

Nice to meet you, Calfaro. I'm sorry it took so long for you to be diagnosed and treated properly. I agree with Beeinformed and Elephant's suggestions about specialists. However, a Wegs specialist rheumy should oversee your care, not an eye doc (or any other specialist).

How long have you been on 20mg pred? That's a high dose to remain on for very long.

**calfaro443** · 05-10-2010, 03:39 AM

Thanks Beeinformed,
Up until now, I had never heared of ocular immunologist but will definitely look into it. Thanks for the info.

**calfaro443** · 05-10-2010, 03:46 AM

Hi Elephant,
thanks for the welcome. The rheumy I'm seeing now seems to be on top of things and tells me she is currently treating other Wegener's patients but I don't think she is a specialist. I live in Grand Prairie, TX. So far, she is the best I could find that's near by. Although I would much rather be seen by someone who specializes in WG. That way I feel more comfortable telling them my complaints instead of keeping them to myself. The times I have complained I always get told it's not related or that it's stress. I know it's not stress 'cause I have nothing to stress about!

**calfaro443** · 05-10-2010, 03:51 AM

Nice to meet you too! I have been reading post about you. I think you're so cool! I was mostly on 5mg all of 2009 but then this year in January I got a sinus surgery to open up my airway in my left nostril (for the second time) it seems to slowly scar closed each time. So anyway, that was enough to aggrivate it and started to flare up. So I've been on 20 mg since then. I have tried to ween slowly but with no success.

**JanW** · 05-10-2010, 06:00 AM

If you go to the Vasculitis Foundation's website, you can find many doctors who can consult with your via phone. This is certainly worth it, and frankly, your rheumy should be happy to do it.

**elephant** · 05-10-2010, 06:07 AM

Hi Calfaro, sounds like you need to go to the Wegeners specialist, she/he will let you know if it is wegeners or something else. Look at the Vasculits Foundation's list and you can call yourself. Tell your Rheumy that you want to see one, if your Rheumy says, " I can take care of this." That is a red flag....need to find another Rhuematologist. I have a local Rhuemy and a Wegeners specialist at the Cleveland Clinic in Ohio, I see Carol Langford. Of course, I think she is great!