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View Full Version : Breaking free of the cotton candy web of denial...



Lola
03-10-2010, 08:33 AM
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
03-10-2010, 08:53 AM
Welcome Lola! That's quite a story. I'm glad you came out of the shadows!

elephant
03-10-2010, 09:55 AM
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
03-10-2010, 10:09 AM
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
03-10-2010, 10:17 AM
Moyan, you make me laugh...you got a great sense of humor!

Lola
03-10-2010, 10:42 AM
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
03-10-2010, 10:42 AM
Yes, I snuck in here while she's tied up elsewhere - to IV tubing.

Sangye
03-10-2010, 10:44 AM
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? :D

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
03-10-2010, 11:11 AM
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
03-10-2010, 12:37 PM
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.

Lola
03-10-2010, 02:05 PM
Yes, he does believe they are Wegs related.

moyan
03-11-2010, 12:52 AM
Moyan, you make me laugh...you got a great sense of humor!

Ditto, elephant!

Sangye
03-11-2010, 01:09 AM
Lola, I can't emphasize enough how serious CNS Wegs is. I used to belong to another support group and there were 2 people with it. It can progress very quickly and become life-threatening. Also, like Wegs anywhere, the damage caused is often irreversible. Blindness, paralysis, loss of coordination, loss of speech, mental impairment, etc...

Please, please get a Wegs doc involved immediately. Once they know you have CNS Wegs they'd be on the phone the same day. It's that bad. There is a different protocol for CNS Wegs.

Brooke
03-11-2010, 03:13 AM
What is CNS wegs?

JanW
03-11-2010, 03:16 AM
Wegs in the central nervous system.

Brooke
03-11-2010, 03:24 AM
Thanks Jan, what symptoms would that be?

JanW
03-11-2010, 03:31 AM
Ironically, I communicated with a woman who had this variant the day before I had my surgery (scared me to death, I tell you). For her the first symptom was blinding, searing headaches. She had been in remission for several years and avoided thinking about her symptoms. When she went to the emergency room for the pain she had tons of lesions on her brain. She quickly became disabled (she's a writer but she couldn't even do that, or get out of bed). She eventually lost her hearing (permanent) and acquired a saddle nose (although she initially had sinus involvement so that was probably related to that). I would say that if a Weggie starts having weird neuro symptoms (tripping, loss of balance, unexplained weakness) they should totally get that checked out. It's rare, but probably not much rarer than SS, I'd bet (15 percent of WG patients).

Sangye
03-11-2010, 04:14 AM
(Jan, good timing for that conversation! The day before your surgery....)

In addition to those symptoms: dizziness, vision changes, confusion, memory problems, etc.... With Wegs we can never think "Nah, it's so rare it won't happen to me." I'm a walking collection of rare complications. Gotta thoroughly check on anything that's out of the norm.

JanW
03-11-2010, 04:17 AM
I know, right. Turns out that my surgeon had been her ENT at one point so there's that...but her story was extremely frightening and brought home to me how we can never be in denial even if we have been in remission for a long time. Her headaches went on for months before she sought help.

I think WG is one of those things where when the doc says, "anything at all, give a call." -- You do.

Lola
03-11-2010, 04:20 AM
OK, now I'm getting scared. I just talked with my husband - how does one have a visit to JHU, for instance, paid for by their insurance co? Will ins. pay for a non provider like that? I've been reading the posts, but don't recall answers to these questions.

Also, does anyone know what the protocol is for treating CNS Wegs?

elephant
03-11-2010, 04:24 AM
I have United Healthcare and I never asked to see a Wegs Specialist.... I just set up the appointment and saw the WG specialist ( no pre cert). I go to Cleveland Clinic in Ohio. I see a local Rheumy also. I think once you establish a Wegs Specialist they will be able to help you. Like Sangye said, if your having symptoms of CNS Wegs ..your local Rheumy should be making calls to the Wegs speicialist stat.

Sangye
03-11-2010, 04:33 AM
Yes, stat stat stat stat. Lola, you've seen me do some major nagging, but it's nothing compared to what CNS Wegs will bring out of me.

Jack
03-11-2010, 07:53 AM
With Wegs we can never think "Nah, it's so rare it won't happen to me."
I have a private little saying following my experience with Wegs, "Things are never so bad that they can't get worse!"
Sorry. That wasn't very positive was it? ;)

elephant
03-11-2010, 08:00 AM
I remember going through nursing school and reading everything about the body ( disease's). Everytime I finished that chapter I wonder if I had that disease....now I am wonder hmmm...do I have CNS Wegeners too???

Lightwarrior
03-11-2010, 09:02 AM
I remember going through nursing school and reading everything about the body ( disease's). Everytime I finished that chapter I wonder if I had that disease....now I am wonder hmmm...do I have CNS Wegeners too???

LOL,,, it is a nursing curse. I read all of the CNS posts and see a bit of myself in each one

moyan
03-11-2010, 10:26 AM
Can't find the abbreviations, what is CNS?

Sangye
03-11-2010, 10:39 AM
CNS= Central nervous system (brain and spinal cord)

Jack, I thought your comment was hilarious. I always answer people truthfully when they ask. The longer I live with Wegs the less I care if they view me as negative. Since I stopped caring so much, I have far fewer people judging me (outwardly, at least!). Whether they see me as positive or negative, it's a reflection of their own mind.

Jack
03-11-2010, 06:06 PM
I'm glad the Neurologist ran his tests on me (they try to electrocute you!), I can rule out CNS involvement for the time being. :)

renidrag
03-11-2010, 08:53 PM
Thanks for the laugh Jack. I never knew what CNS was, thank you all.
Dale

elephant
03-11-2010, 10:39 PM
Jack what kind of tests did the neurologist run on you?

onatreetop
03-11-2010, 11:31 PM
I can relate to all these sysmtoms as well. My sinus checked out good though. headaches have always been an issue. The vision and hearing ups and downs I always related to the wegs and meds with a bit of allergies. I am going for five tests on friday. CT of pellvis, abdm. and chest. Two mris of spin lower and middle. Still getting the pain in my side on the left which was kidney stones before but Soloway doesnt think thats the case now. The neurologist I saw did the EMG on my hands arms and legs feet. But came back ok.

elephant
03-12-2010, 01:31 AM
Good to hear Onatreetop. How about a Echo cardio gram- they have you walk on a treadmill and take pictures of your heart. Or they don't think it is the heart? Glad they are doing the CT's need to rule out why your having chest pain.

Sangye
03-12-2010, 01:33 AM
Onatreetop, glad you're getting checked out. I don't know if you've had MRIs before but they're much longer than CTs. Make sure you move around a lot and stretch and walk between the CTs and the MRIs. They'll do the 2 MRIs without letting you out of the MRI tube. You'll be in there for at least an hour, unable to move at all, laying on a hard surface, etc... They'll tell you exactly how long. It always seems much longer. You might want to take some tylenol beforehand, if you have any pain.

Sangye
03-12-2010, 01:34 AM
Elephant, I've never had an echocardiogram done while moving-- just like a regular ultrasound. Is that a special type? Do you know what it's called?

JohnL
03-12-2010, 05:05 AM
Lola - I was giveen an IV of Bicarbonate of soda during one of my stays in hospital. It made me
feel much better and i still take a teaspoon -level- every night. Something about acid build-up
and my kidney - I only have one foe some unknown reason- unable to cope.

Sangye
03-12-2010, 05:14 AM
John, you only have one kidney?

elephant
03-12-2010, 05:16 AM
You can have a regular echocariogram without moving. Last year when I had severe chest pain they did that too. A couple of months ago they did the treadmill echocardiogram to check the strength of the heart and check the valves and thinkness of the chambers and such....They just want to to see how my heart was after exercise and used a ultrasound (pictures) of the heart, they also do it with Dopamine I think....not sure. I recently had a CT of my heart to check for calcium build up. Insurance did not pay for it. It was 100.00 dollars.

elephant
03-12-2010, 05:20 AM
John, sounds like you in kidney failure? Your electrolytes and acid/base were off ....Sangye and Lightwarrior can help you on this one. I use to work on a kidney floor, long time ago and can't remember the correct medical term they use when the give the bicarbonate. Acidosis? Alkalosis?

Doug
03-12-2010, 05:49 AM
I have a private little saying following my experience with Wegs, "Things are never so bad that they can't get worse!"
Sorry. That wasn't very positive was it? ;)

No, but it is cogent! Anyone familiar with your WG trail has to respect how much misery there is behind that statement, and how important it is to address symptoms as though they are the signs of what will kill you. That's not too positive either, is it!? But the outcome of ignorance and failure to bring up the "whiney" patient in you (to paraphrase the new and wonderful contributor, Lola!) is too serious to trivialize.

Doug
03-12-2010, 06:01 AM
Onatreetop, glad you're getting checked out. I don't know if you've had MRIs before but they're much longer than CTs. Make sure you move around a lot and stretch and walk between the CTs and the MRIs. They'll do the 2 MRIs without letting you out of the MRI tube. You'll be in there for at least an hour, unable to move at all, laying on a hard surface, etc... They'll tell you exactly how long. It always seems much longer. You might want to take some tylenol beforehand, if you have any pain.


Sangye's comments of the stretching and moving around are very critical, I think, and I wish I'd done such things before I had mine. I'm fairly large by human male standards, so the narrowness of the opening did cause some concern for who would pay the price if I got stuck in the dang machine! Seriously, the procedure can be uncomfortable, so the moving around and light painkillers before hand always are a good approach to an MRI.

onatreetop
03-12-2010, 11:52 PM
Thank you all for the good advice. I have had more mris and catscans then I can count or remember. I can and have fallen asleep in the tube. I can relax that much even with the very loud noise. It has taken years of practice and alot of testing but yes I can block out that noise and tight feeling and fall asleep snoring like a chainsaw!!! It usually scares the techs. and they have to wake me. Funny right! They told me most likey three hours. They asked if I can lay still for 45min at a time and my reply was without a problem I just dont get the chance very often! So today is the day. Then from there I am going to a pampered chef party. Havent been to one of those in years. Should be interesting. Free food!! Really amazing cook this lady is that is hosting! I am bound to gain ten pounds tonight.

Sangye
03-13-2010, 01:02 AM
I'm glad you know what you're "in" for. :D

jola57
03-13-2010, 03:06 AM
mmmmm, I would love to attend one of those. I can just imagine the food. Do let us know what you had

elephant
03-13-2010, 04:17 AM
Me too, cause I'm hungry and want to eat off your plate. :)

onatreetop
03-15-2010, 09:01 AM
She made these amazing cresent rolls with cream cheese and chipped beef rolled inside. Not diet food but soooooooooooooooooooooooooooooo tasty. They have come out with some cool new gadgets. Fresh salsa, fruit and dips. Oh coarse lots of wine.

elephant
03-15-2010, 11:59 AM
Sounds good Onatreetop. I can taste it! So good...hey onatreetop look over there...just grabbed your crescent roll. :)

Lightwarrior
03-15-2010, 12:19 PM
I'm shutting my eyes and pretending that the rice cake my daughter who is doing Pilates as we speak says I have to eat as a snack so I won't put on more than Pred weight is really one of those crescent rolls covered in creme cheese. Proud and annoyed that all the tough love lessons I used on her when she was a teenager are now being used on me. (lol) Oh wait, I can taste the creme cheese, sometimes an active imagination pays off.

Sangye
03-15-2010, 01:16 PM
Oh, so funny. Man, we are REALLY driven by pred. We're actually even stealing virtual food!

Rice cakes are a good idea. Hmmm. Wonder if they'd hold much cream cheese. :D

onatreetop
03-17-2010, 12:23 PM
To much is never enough!!! I want all comfort food at the moment. I am nursing the flu or cold. something not fun. This is my 6th day dragging with it. Called the doc he called in 3 weeks of antibiotics. Yeapy!!!!! Now I am craving veryyyyyyyyyyyyyyyyyyyyyyy bad food. Wish that I could lose weight like the side effects said I would!!!!!! What a myth!!! For me anyway! I going to hit the fruit loops!!!

Sangye
03-17-2010, 12:32 PM
Onatreetop--the weight gain side effect of pred trumps any weight loss side effects of the other drugs we take (by a long shot).

onatreetop
03-17-2010, 09:49 PM
I am walking proof of that. Just frustrated with the current roundness of myself. I put a swimsuit on to go in the pool at a hotel we went to for one night to get thekids out of the house and I almost couldnt squeeze into my fat suit!! Once I got in the water i didn't care but holy whale of a mom!!!! Scared myself. It was almost as bad as trying on jeans. The kids had fun thats all that matters. The fruit loops were just as I remember.........sweet, crunchy and very tasty.

Sangye
03-18-2010, 12:41 AM
One of the few things about living in Maryland that's made it easier than Arizona is that the majority of the population here is hugely overweight. Northern Arizona has overweight people of course (it's still America, after all), but fitness and outdoor activities are very popular there. The majority of people are in good shape.

When I go to the pool here I'm not very self-conscious because I'm surrounded by people who are my size or bigger. I don't stick out like I would in AZ at this weight. (Which is so big that if I put the number here it would cause all your computer screens to tip to one side.)

renidrag
03-18-2010, 01:53 AM
Pred weight does go away. 36 days off and have dropped 17 pounds and a pair of suspenders. 4" gone from my waist.
Dale

Sangye
03-18-2010, 02:01 AM
Wow, Dale! I'm glad you could drop the weight like that-- it must feel incredible. :)

I was off pred for 2.5 years and could only drop 10 lbs. I couldn't change the shape of my body back, either. Being back on pred, those 10 lbs came back and brought their friends. I've also been completely unable to exercise for several years so obviously that made a big difference.

My endocrinologist said it's extremely hard to get pred weight off for most people and the pred shape is usually permanent even if you do (ie rounded shoulders, thicker neck, upper body and abdominal fat distribution). I wasn't shaped like this at all before pred. Even if I'd gained the same amount of weight I would have looked completely different.

But as we know all too well, everyone is so different. I'm always glad to see someone out of the pred weight pile, though. :)

coffeelover
03-21-2010, 01:56 PM
You know...I attend a weight wtcher meeting weekly, weigh and and lose one pd, then the following week gaine one..ahhhh its a losing battle, but I am choosing to do this as it keeps my diet in check. Besides that I do a very limited weight lifting 20 minute exercise 3 days a week and a cardio of some sort (usually a walk with my dogs) 3 days a week. i rarely lose and do gain...but if I didnt do this...I could be much, much heavier. So I continue this losing battle. (no pun intended)
coffeelover (skinny lattes)

moyan
03-22-2010, 12:58 AM
Hi. Somewhere along the way I got tired of trying to keep my weight down, threw the scale out and started adding a little. Not much, I had how to diet in my head. Over the years I became bigger, but my mood and selfesteem raised like a coffeebread dough. No more feeling hopeless, no more always hoping that I lost some grams. All traded for laughter and joy.

Sangye
03-22-2010, 01:38 AM
my mood and selfesteem raised like a coffeebread dough. No more feeling hopeless, no more always hoping that I lost some grams. All traded for laughter and joy.
LOL-- Moyan, you sure are a delight. :)

elephant
03-22-2010, 02:53 AM
Moyan, I love your attitude! You go girl!