Breaking free of the cotton candy web of denial...

[Lola]

As far as I can tell, I've most likely had Wegs since I was 22 yrs old in 1972, - 38 years ago. That's when the bilateral elbow to fingertip pain, numbness and weakness began. I had always been a child who tired easily, needing to go to bed at 6pm on Friday nights and resting up over the weekends. The 1976 version of swine flu vaccine precipitated another round of forearm pain and weakness, a symptom which is still present when I flare. In 1990, when facing a staggering life change, I became ill. Symptoms: fatigue, bursitis of the hips, what I thought was pneumonia, severe vertigo, tinnitus, muscle pains, insomnia, facial pain, memory problems. (I had always had mouth ulcers and nosebleeds, but thought these were normal symptoms.) I went to 3 different GPs. One diagnosed Rheumatoid Arth. due to my very high Rheum. Factor. Treatment: Aspirin. Finally I was referred to a Rheum. who diagnosed Fibromylagia. He told me that there was nothing wrong, just that my body perceived a problem. Being a nurse, I am very aware of how the medical community viewed fibro at that time - with rolling eyes. So I went home, felt ashamed, and denied the reality of what my body was going through.
In 2000, while attempting a post graduate degree, I developed some attention-getters. Hot, swollen joints, fever and rash over my trunk and legs. I was referred to another Rheum. who began the slow, for me, process of diagnosis. I was initially treated with Plaquenil (Hydroxychloroquine), which alleviated my pain after 6 months. Dropping out of school seemed to alleviate the rash. Several of my symptoms never did stop, but I didn't recognize them as being outside of normal, so didn't report them. My mother had been ill when I was young. She had an elevated RF and was treated for R.A. with prednisone, aspirin and Plaquenil. I always thought she got a lot of mileage out of her illnesses, and had vowed at an early age NOT to emulate her. I became the master of denial.
I began having problems at work and had to change jobs in 2002. I have been a cardiac nurse since 1983 and loved working in the cardiac cath lab. I wore a lead apron all day, standing on my feet. When on call, I often worked 60-70 hrs./week - once per month. Very exciting work. I had to take a desk job.
Then I met my husband, and we married in 2004. More stress - I got sicker. I had been sero negative (no positive blood markers), and had a preliminary diagnosis of Mixed Connective Tissue Disease. The treatment was Plaquenil, methotrexate and NSAID. I had plenty of Wegs symptoms at the time, but was too uninformed to mention any of them to my Rheum. Plus, I did NOT want to be one of those whiney patients who can't even tolerate a hangnail. Finally, in 2007, I happened to decide to whine about my Sinus infection, drippy nose, sore, teary eyes, nose bleeds, etc. My PR3 came back slightly positive, and I was subsequently diagnosed with Wegs. I have been treated with methotrexate, which was not effective, CellCept and prednisone 5 - 10mgs. Then Imuran and prednisone 20mg. Finally, I had my first 2 infusions of Rituxan in January, 2010. I'll write more about that in the appropriate thread. I remain on Imuran 100mg daily and prednisone 15mg. I have tried to increase the Imuran, but just cannot tolerate the increased dose due to abdominal pain, nausea and fatigue. It has been 6 weeks since my 2nd and final Rituxan infusion, and I still feel terribly fatigued. I do have some good days, but tend to overdo on those days, then have to pay. After 26 years I had to leave the hospital and am now a triage nurse in a cardiology practice - 1/2 time. I don't know if I can even do this much longer. They are good to me, and allow me to work from home 4 hours/week. They have offered to let me work the entire 20 hours from home if I would like. I'll most likely take them up on the offer, but wonder if I'll have the strength to keep it up.
I appreciate you all very much. I have been lurking on this site since August, 09; when I finally came face to face with the reality of this disease. It has taken me this long to make myself known to you. Thank you so much for being so candid. I can't wait to look at Phil's crust specimens in his album! That, alone, will be worth the price of admission.

[JanW]

Welcome Lola! That's quite a story. I'm glad you came out of the shadows!

[elephant]

Welcome Lola! I'm a RN too and I understand what your going through. How are your sinuses? Did the WG affect your kidneys or lungs? I am glad the imuran is working for you. I love your title!

[moyan]

Main nagger is occupied today, but do as she says and before you know it the world will look different Nice to meet you!

[elephant]

Moyan, you make me laugh...you got a great sense of humor!

[Lola]

Thank you for the welcome! Most of my symptoms involve my head: full sinuses with drippy nose; headaches; left sided earaches, inflammation of the left parotid salivary gland; sore, red, swollen, dry eyes that began with copious amounts of compensatory tears; mouth ulcers; nose bleeds, right side more than left; inflammation of the left trigeminal nerve; and most disturbing - MRI which shows an increase of small white matter brain lesions in the right frontal lobe and right mastoid bone destruction per MRI. I don't remember ever having right ear aches or mastoiditis. I really feel for folks who cannot breathe at night. I always wear a BreatheRight strip and slather the insides of my nostrils with Ocean Gel before bed.
When flaring, I've noticed a certain raspy character to my breathing, and have had the infernal coughing at all hours. Both problems resolve when the disease calms down.
Now that I am paying attention and actually get my lab results, I see that my GFR is <60. Not good.
NO! I have not gone to see a nephrologist or a pulmonoligist yet. That is probably coming, but I am holding out hope that I can achieve remission.

[Lola]

Yes, I snuck in here while she's tied up elsewhere - to IV tubing.

[Sangye]

ROTFL-- you are so funny. It's hard to keep a nagger down.... You guys all thought you'd get a day off from hearing my shtick, huh?

Lola-- you're a great writer. I'm really glad to have another nurse in the group! We've had a run of them in the last few months, as you know from lurking. You also know what I'm going to ask, right? Wegs specialist yes or no?

Okay, I'm doing a lot of joking--mostly because I feel so incredibly lousy I have to distract myself or I'm gonna lose it-- but I truly feel great sorrow that you're having such difficulty and finding it harder to work. You'll find a wonderful support group here that will get you through anything. Even (especially) cotton candy webs of denial.

While I was posting this, I noticed your last post....

When did the CNS signs appear, relative to your beginning treatment? My #1 concern with CNS involvement in someone on immunosuppressants is PML (Progressive Multifocal Leukoencephalopathy). That's urgent and must be ruled out immediately.

If you have CNS Wegs and/or kidney involvement, I'm wondering why they'd only do 2 ritux infusions. They seem to be doing 4 for most severe cases and 2 for those with less-life threatening status. CNS Wegs requires the biggest guns--always. It's very hard to treat.

[Lola]

Hah! I knew I wouldn't get off scott free with you, Sangye. The first MRI was done just to look at my sinuses at the beginning of CellCept and Bactrim therapy in 2007. Prior to that, I'd used methotrexate for about 14 months. Doubt that it's PML.
My Rheum likes to start with the least amt of medicine, then progress if necessary - the hope being that I would find remission.

[Sangye]

Okay, not likely to be PML. (For those who don't know, PML progresses very quickly. It can be fatal within a few weeks)

Does your rheumy think the brain lesions are Wegs? Has a Wegs consultant read the films? That's a good place to start, if not.