Time to reach out.

Hello Dr Yazici,

I visited you in 2010 with an informal Behcets diagnosis manifesting in restrictive lung disease, ulcers and skin rashes. I'm 32 female without uveitis When I came to your clinic I had started on 100mg daily dose of Imuran after many failed attempts of Prednisone treatments. Dr Thuc Nyuegen is my Rheumatologist here in Washington State at The Everett Clinic.  I believe you had some previous correspondence with him regarding my case. When I visited you you changed my treatment plan to 175mg/day for two years. I have since been off the Imuran for over a year and just recently developed psoriatic arthritis in my hands, fingers, toes and feet. I'm currently on a 20mg per day, and a weekly increase taper by 500mg of Sulfasalazine. I'm on week 3, 1000mg in the morning and 500mg at night, the taper will be complete next week when I reach 1000mg in the am and 1000mg in the evening. I'm looking for advice on this treatment plan. My swelling and pain is extreme. I'm using a wheelchair in the mornings and I'm not feeling much relief from the medication. I understand that it can take time for the sulfa to work. I do not have any ulcers at this time, my lungs appear to be functioning well (I haven't seen my Pulmonologist yet) Do you agree with this treatment? Any suggestions? Should I come see you again? Thank you for all your help! Hope this email finds you happy and in good health.

Ps. I've cc'ed my mother in this email as well.

Raynauds...just kidding... Psoriatic Arthritis

Since my last post I have visited a podiatrist twice, cortisone injection and completed a 6 day #MethylPREDNISolone treatment. I had the prescription for a week before I decided to take, the shit is just plain nasty! It took me crawling to the bathroom in the middle of the night and having my mother bring me my grandmothers old wheelchair so I could get out of bed in the morning. I haven't worked in over 3 weeks, I'm depressed, angry and scared. The first podiatrist apt was typical of many Behcets patients visiting a specialist for the first time, I was his first. I received an informal diagnosis of Raynauds with a follow up in 1 week. The prednisone helped immensely but it was short lived. I've been off the taper for 4 days and its regressing back. It's in my feet, hands and left hip. The pain can be astonishing. Literally day to day, good days and bad days. At the second appointment not surprised to hear the Podiatrist retract his diagnosis (I'm guessing he did some homework) and contributing it to the Behcets (no follow up with him needed). Couple things said were "I'm sorry, I just didn't realize the severity of the disease" "Honestly I don't remember even covering this in medical school" and "you may just be a good candidate for a pain clinic". Hmmmm...okay, thanks and goodbye.

Rheumie appointment the following week was a success. I guess. Never fun when you have to go see the doctor that you only go see when something is wrong. But I have agreed to do a 30 day prednisone treatment while we wait for the Sulfasalazine to kick in and work. This blog was tough for me to get out. I should and will post more specifics later but for right now I'm done.

PS. Happy notes, I ordered a juicer and I'm excited about it. And I'm supposed to start classes in 2 weeks...scary!I forgot the best news of all! I was able to see my old Rheumie!! Didn't have to be auctioned off, but I did have to change insurance plans. :)

looking a little sick

"You don't look sick"...Pssht Unfortunately over the last 2 weeks I have developed a foot issue that has me limping, bracing and at times using crutches. It has resulted in me looking a little sick. Especially if you know me, as I'm a very active and at times somewhat of a theatrical type of person ;)

I've been to my GP and am patiently waiting for a referral to a foot specialist. Of course the question popped up, as expected "when was the last time you saw your Rheumatologist" ..."eh, a long time". Not because I don't want to (well maybe) but now that I have some kind of state crazy welfare insurance I can't go see the one that's been through it all with me. Which means I have to start all over with my story and that exhausts me just thinking about it. Oh yea! I have to actually pitch my case and wait to see who chooses to take me as a patient now. Yes, this is real life! Hoping for the UW. My old Rheumie graduated from there and is still very close to the Rheumatology Dept. Although who knows?! Is it the Behcets or isn't it? This seems to be the question I ask myself a lot when something strange starts to happen.

Oh wait! I have good news!!!! The CT Scan on my bladder came back normal, maybe cause I'm the queen of *normal test results with fucked up body parts*? Haven't had any infections lately either though...maybe it's moved from my bladder to my feet? ...maybe I'm getting old? ...maybe it just likes to play musical body parts? ..maybe maybe maybe???

That's enough for now. PS. I'm only 32 ;) ...not even close to old!

A note from a friend

Hi Linda..yes you guessed right. No news is good news. I found myself working too much and had to quit one of my 3 jobs. Trying to enjoy life as much as possible. Been struggling a little with depression but my babies keep me afloat. Wish life came with a manual and directions sometimes. Been trying to challenge myself...started playing the violin, talk about testing my patience, but it's a good thing. Also started working out with a personal trainer. Having a tween has proven to be difficult beyond what I ever imagined. My Behcets seems to be in remission but I've recently been having some bladder issues, been referred to a urologist. Bladder problems are a family tradition so I'm not really linking it to my Behcets. Took the girls to the beach this weekend and stepped on a piece of glass...has me hung up for a couple days but almost a blessing in disguise. Take care and thanks for the hug. :) Annie

2 yrs and 22 days

hey. I'm here. I'm alive. My life went from normal to not. I decided prematurely, to be done with my Imuran therapy. April was supposed to be my final month but I haven't taken one single dose this month. I have zero ulcers to report. My lungs seem to be okay but I'll know more at my next apt and months down the road. I wish I had the energy to elaborate more on my life right now but I just don't. The conclusion is that overall I was and am happy with my 2 yr Imuran treatment. That's all.

Once upon a time I had a plan and an angel...or three.

I had a really great plan. But then I changed it and made a new one, a better one? No, unfortunately the new plan turned out to be the worst ever, it included damage to myself, my children and the people closest to me. It was rot with disaster and took me to the lowest, darkest place I'd ever been. The plan lasted 1 year and will leave painful scars. Now I face the shame of having such a terrible plan, for going against my better judgement and for ignoring that voice in my head. All reasoning was gone.

The one good thing about this new plan is that it came with some angels (and knowledge). The last year of my life has been a battle that I didn't fight alone. These angels held my hand. Guided me. At moments I think they even laughed at me. But most of all they protected me, even saved my life a couple times.

I separated from that person I thought I loved and the plan that accompanied him...I'm looking up from that place. Actually, maybe now that my angels have some down time they can figure out a new plan for me cause I kinda need one...something fierce. I'm grateful for the patience and understanding of my daughters fathers during that time, they are indestructible rocks.  

What's Imuran?

It's January and today I reflected on where I was exactly one year ago today... On an airplane, with my family, on our way to Hawaii for a vacation. It was the most horrific flight I'd ever been on. Lucy at the time was 2 and completely miserable. My ex-husband David was experiencing some kind of self induced coma and was no help at all. But Hawaii was amazing, probably not as amazing as it could of been but nice all the same. It was the last big thing my family did together before everything changed. The kids are adjusted. David is good. A year later and he has moved on. He is a soldier and I'm sure will use the experience that was 'us' as a survival tool to fight off future heathens he might cross.

The point you ask...What's Imuran? My point is I haven't taken Imuran on a consistent basis for at least 4 months. Bad news: I've slacked severely on my meds. Good news: No major symptoms have surfaced that I can tell. I say "that I can tell" because these silly lungs of mine can be tricky.

Stay posted for more...I have an appointment with my Rheumie on Jan 24th, can't wait for that lashing.