Pacific Northwest Newbie - long story

[KJsteps]

Age 17 – I first heard the word autoimmune during a routine eye exam at a local ophthalmology school where students were brought in to see my case of uveitis I had just been diagnosed with.

Continued eye issues: (beginning year 2000)


Conjunctivitis
Chronic eye infections
Chronic corneal ulcers
Map-Dot-Fingerprint Dystrophy
Chronic evaporative dry eye syndrome
Off white mucous drainage from tear ducts
*Multiple biopsies on eyeball growths showing abnormal cells which were never developed enough to identify. Ophthalmologist watching as he felt they were a precursor to a type of lymphoma. (or was it the Granulomatosis Polyangitis showing its ugly head?)


Other long term symptoms: (18-24 months)


Excess mucous production
Chronic cough with clear/white foamy mucous
Constant Runny nose




Recent History
October 2013


Diagnosis: Heart palpitations
4 day hospital stay for testing.
Diagnosis: Palpitations


March 2014



Visible blood in urine (cast offs?)




Diagnosis: Kidney Hemangiomas




Follow-up: yearly scans to monitor any tumor growth.





September 2015:


Diagnosis: Pericardial Effusion with AFib
Cause of inflammation unknown (4 day hospital stay)


Other symptoms during incident:


Excessive urination (every 15 mins during initial AFib)
Deep Pain running from ears to lymph nodes near throat
*Continued chronic cough with excessive mucous
*Continued runny nose
Prescribed Apixaban/Eliquis for AFib (blood thinner)




Rheumatologist brought in to look at possible cause of Pericardial inflammation. Tons of tests just showed a slightly elevated rheumatoid level. No follow up needed. I don't see results for an ANCA test, so apparently one wasn't run. Lupus, etc. ruled out.


March 17 2016


Cellulitis -2 rounds of antibiotics
Odd discoloration in lower outer calf on each leg
Follow up provider recognized the bruising not typical of Venous ulcerations, "I have no idea what that is."


April 1 2016


Outer lower calves on both legs turning dark, unusual bruising. Bruising rising to the surface, breaking though skin as Eschar/scab.


April 5 2016


Cardiologist visit to discuss possible blood thinner issue causing leg wounds.
Outcome: AFib risk still outweighing possible blood thinner reaction. Continue using Eliquis.
Test: ultrasound of lower extremities to check circulation. No issues found.


April 8 2016


Primary care visit
Leg wounds breaking open and weeping, draining.
Again recognized as not being circulation wounds, " I have no idea what those are"
Legs very swollen, started on a Diuretic
Wound care treatment started (3x week)


April 15 2016


Leg wounds need debridement - Stop blood thinner for outpatient surgery of wound in 3 days.


April 16 2016


Bright red mucous cough.
Headed to emergency room 100 miles away, where cardiologist is located.
Admitted to hospital - 4 day stay, countless tests
Diagnosis: acute kidney failure, Lung issues, possible Vasculitis. Released before test results returned.


April 22 2016



Test Results: ANCA Vasculitis
Started methylprednisolone for 3 days to get me through to OHSU admitting




April 25th 2016 (Admitted to OHSU)
Diagnosis: Granulomatosis Polyangitis affecting ENT, Lungs, Kidneys, Skin, (likely heart and eyes)
Admitted to OHSU for testing. Multiple tests including Kidney Biopsy to rule out various issues and to confirm diagnosis.
Start on 60 mg Prednisone
First In-patient treatment with Rituximab
“It appears to be a textbook case” – Really?! So happy to hear those words!
Kidney function has improved nearly back into the low normal range thankfully!
Still waiting on Kidney biopsy results.


Current:
Treatment has been approved and I receive second infusion tomorrow. After reading some of your stories here, I realize just how fortunate I am to have such a quick and positive diagnosis, although I honestly feel this issue has been plaguing me for much of my adult life.

I have had to stop searching the internet in the evenings for information about this disease… the steroids are making it difficult to sleep to say the least!

So that’s my story. Any advice happily accepted on how to get decent sleep while on the Prednisone.

I still need to learn more about how this can affect my eyes, and much more about the ground glass opacity in my lungs. Links/other information greatly appreciated.

Currently under the care of a Rheumatology, Nephrologist, and Cardiologist.

Regards,

Karen S

[drz]

If your routine allows it, nap a lot during the day and try to find some productive things to do when you can't sleep at nights like get on here and read and post away. I have often done that.

[annekat]

Welcome, Karen, from another Pacific Northwest resident. Wow, every case is sure different. Seems funny they'd call it a textbook case when it had been going on for 16 years, with various twists and turns. Mine was a little simpler, starting in 2008 with a huge, atypical ear infection in both ears followed by over 2 years of what was thought to be allergies and recurring sinus and ear infections as a result. I finally got diagnosed in 2011 when it went to my lungs. And there was joint pain off and on, and swollen, red eyes, but those things cleared up immediately with treatment. I was only in the hospital overnight for tests. Doing pretty well now, might not call it complete remission, but it has leveled off to a "new normal". I have heard great things about the vasculitis clinic at OHSU, and you are lucky to be going there. I don't have a specialist overseeing my case but am getting by anyway. Being in Olympia, I could choose between Portland and Seattle. As for the prednisone, well, I didn't have a lot of trouble with it but it would help to take it in the morning, or if that makes you too jittery, split the dose until you've tapered down a to much lower amount. I'm glad you found the forum and hope you will keep us updated as to how your treatment goes.

[Dirty Don]

Welcome Karen from a 'once' Oregonian...grew up in Portland...got WG/GPA almost 5 years ago, like you & others was thought to have had the disease for at least 2 years; that's not uncommon. I assume you're at OHSU for the uveitis as they have an expert in WG for eyes there...just guessing. My lungs were ground glass...docs didn't quite know how they cleared up, but presumed it was the heavy doses of pred. After about 4 years of protocols of drugs & rehab, I am in control of the WG & symptoms w/o drugs, knock on wood. Took time, patience, understanding & really good docs who knew what they were doing...lucky me. Now that you're in a regimen, do not let it go...keep at it, it will work. You'll get control, just gotta keep at it. Best to you.

[mishb]

Wow KJ, that's an amazing report you have there.

Welcome to this wonderful group. Sorry you have gone through all of that, but this is the place to be

Isn't it crazy, the different presentation of the same disease :sad: No wonder the doctors can't get it right :unsure:

I agree with Don, keep up the meds and let them work on getting you better.

Take care, and ........

[vdub]

I'm from the PNW, too -- very SE corner of WA. So sorry such a young person has to put up with this disease. I'll just add one thing.... On the doses of pred that you are taking, you will likely gain quite a bit of weight. You won't be able to help, so don't get too upset and you can tell your friends to expect it. Usually, the weight will disappear after the pred, but it might be several years from now. An excellent recent example is Carrie....
http://www.wegeners-granulomatosis.com/forum/general-wg-chat/5282-carrie-s-success.html

I hope things start getting better for you. Many of us had a long road to diagnosis, but your's seems longer than most.

[KJsteps]

Thanks everyone for the encouragement and feedback.

I realize I was so focused on telling my story, and getting all the various issues in, that I didn't give enough personal information. It felt critical that I listed everything, just to try to get it into perspective for myself, more than anything.

While I was 17 when I first learned about autoimmune issues, I turned 60 last August. Let me say, things went downhill almost immediately. First the inflammation around my heart which I never really felt I recovered from fully.. Always so tired and sleeping 8 to 10 hours per night. And I caught every cold, flu, sore throat (to the point of losing my voice which was something new for me) that cropped it's ugly head over the winter.

I am single, no kids, and live with my 80 year old mom. I moved 'back home' ( from the PDX area to the Northern Oregon coast) 8 years ago when we lost my younger brother to lung cancer at the age of 49. I am also morbidly obese, and have dropped 100 pounds in the last 4 years. I am not sure my body can handle the expected weight gains!

I am so frightened by this. It has hit so many organs, and created so many issues for me. My mom doesn't really understand just how serious things can get, or just how quickly that can happen and to be honest I am not sure I want her too. Losing my brother was devastating for her. My best friends life is in full blown turmoil as well and I am just unable to offer much emotional support to her, and she doesn't have much to give my way either.

During yet another bout of insomnia last night, I discovered a link to a spreadsheet someone made to track their Wegs issues, meds, etc. So grateful to find that, and plan to set one up for myself in the next couple days.

My lab work is now showing kidney function within the low normal range, which I am so thankful for! It is hard to think that less than 10 days ago I was being told I was in acute kidney failure!

My second Rituximab infusion went really well yesterday, with no noticeable side effects, which is another 'Silver lining' for me. I always try to look for the good that can come with any situation and have started journaling in what I am calling my Silver Linings notebook.

I find I am quickly approaching the 15 minute mark in which I allow myself to feel sorry for myself each day so I think it is time to say goodnight. I have so many questions, and as soon as I feel more confidence in posting to the correct forum topic, etc.. I will probably drive you all crazy seeking my answers!

I am so thankful that I have found this group!

karen

[Alysia]

Dear Karen.
Welcome to our family. I also had some undiagnosed sickness (today I know it was wg) at the age of 17 then quitely smoldering for years untill acute onset more then 20 years later.
Being on rtx means that you get the best treatment possible. It might take some time to fully working but it seems that you are already getting better. So its a good sign. And you have us. Hang in there and please update us.