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!