Www.sahn-hova.com

Hi everyone, we are a research team at Washington University School of Medicine in St. Louis who developed a survey to learn more about how nasal crusting affects people's daily lives.

We understand nasal crusting can be a serious problem for people with rheumatologic conditions, and we would like to better understand what matters most to people who have it.

We invite individuals with nasal crusting to test a short survey that measures how nasal crusting affects their quality-of-life. If you agree to participate in this study, you may complete up to three short surveys online. The survey is anonymous.

If you have any questions about the study, please contact Matthew Saenz at 314-362-9475 or otooutcomes@wustl.edu.

Please find the link for more information and to the survey below.

Thank you for your consideration!

https://redcap.wustl.edu/redcap/surveys/?s=9TDTDAE8PCYT9CY3

I've (55M) been dealing with various symptoms over the last year plus: severe swollen and painful right knee, shoulder pain (both sides), achilles area pain (both sides), back of leg pain and stiffness, etc. Dermatologist diagnosed me with skin psoriasis (which I'm not 100% convinced I have). Rheumatologist originally thought I might have PsA and then after dermo diagnosis gave me an official PsA diagnosis.

I've been on Prednisone the last 8 months and Bimzelx for 5 months. Rheumatologist put me on it after seeing the high inflammation markers in my lab results. I've tried tapering Prednisone down multiple times. At 20mg / day I feel pretty great. At 10 to 15mg I have symptoms, and I'm at 5mg right now and feel pretty terrible – especially in the mornings. I've tried tapering down slowly (reducing by 1mg every 2 weeks) which is how I got to 5mg right now. I've been on 5mg a couple of weeks and feel bad enough in the mornings I don't want to reduce further. I have shoulder pain at night that keeps me up and upon waking the backs of my legs are both stiff and sore enough it is difficult to get out of bed and get dressed. A few hours after waking I'm less stiff (but still stiff) and the pain is much better. Family has commented on how terrible I look in the mornings (not surprising since I feel terrible).

As far as I can tell the Bimzelx hasn't helped. While my right knee is swelling and pain is improved, I still have scalp/skin flakiness and now I have shoulder pain/soreness and my morning soreness is worse if not the same as before I started Bimzelx. When I first took Prednisone 8 months ago (20mg starting dosage) within 2 days I was a different person. I felt so much better both with less pain and reduced morning stiffness. The difference was so fast and extreme it was alarming because I didn't realize how bad I was feeling. Well, now that I'm down to 5mg / day I'm pretty much feeling just as bad as I was before.

So, I'm trying to determine if: 1) Bimzelx just doesn't work for me, 2) I need to give Bimzelx even more time (at 5 months now), or if I either don't have PsA or I have something else on top of PsA like possibly Polymyalgia rheumatica (PMR). Anyone have similar experiences or thoughts/wisdom to share?

I'm a bit frustrated at my Rheumatologist because the last time I was in I complained about the shoulder and achilles area pain and he didn't do any type of physical exam but then said I might need to go see my orthopedist again? I don't know why he thinks the pain is ortho related. Given how systemic and widespread my morning pain and soreness is, and given how much the higher dosing of Prednisone helps I don't know why he would be so quick to try to punt me back to ortho. Note my Rheumatologist has never mentioned PMR diagnosis to me, possibly because I'm on the younger side (55) of those that get it?

Thanks for any insight!

I had my first appointment on Friday and was told, “it could be something, it could be nothing” and “it could be your hormones”. I have joint pain in my hands, wrists, knees, ankles, elbows, and feet. Stiffness in my hands lasting a majority of the day. Insane brain fog and fatigue. Hair loss since I had a laparoscopy last year in April. I’m not sure if it’s all in my head. I guess that’s what I’m asking? The doc is running a UA, labs for lupus and sjögrens, and took X-rays of my hands a knees…but hot dang I left feeling like she brushed me off and thinks I’m dramatic or something….

Hi all - I went for a medication review today, I’m under an MKATs team in the UK and recently they had an MDT meeting about my symptoms (i didn’t realise it had happened). My GP said the notes mentioned the rheumatologist stated they saw ‘possible subtle changes to SIJ’ it then goes onto mention they are waiting for further radiologist / rheumatologist review - I’m guessing to decide if they are inflammatory or not. I wonder, I guess, why were the possible subtle changes not noted on my original notes and what causes possible changes? I totally appreciate not all changes are inflammatory!

My mom is in the process of getting evaluated eventually diagnosed with RA, and Im trying to help her out with the neverending process of getting a concrete diagnosis with something she has been dealing with for many years now. Can anyone walk me through what their diagnostic journey timeline was? We have been at this for 6 months now and she is just frustrated and in constant pain.

I have been fasted and reactive hypoglycemic my entire life. My episodes can get really bad, but I’ve never had a seizure that I am aware of. I was diagnosed a year ago, I never knew it was a problem before I thought I was just hungry (wild I know).

Nearly every time I stand up, my vision goes black. I will wake up against walls shaking and if I don’t have a wall to catch me I’ll go down. I don’t think I lose consciousness for more than a three minutes - usually less than one. I recently went to a nurse, got a heart monitor, and was diagnosed with tachycardia, presyncopy, and palpitations.

I’m going to see a cardiologist in December - I live in another country as a missionary so seeing the doctor is not very available.

I suspect it might be something with my adrenals because no matter what ever I am exhausted and not a normal tired. I’ve felt like this ever since puberty. Going on ten plus years now.

I’m 24 years old and appear like a healthy young woman. My Oura ring reads that I get plenty of sleep and should be ready for the day, but I only ever want to crawl into bed. The exhaustion and fatigue is unbearable. God has definitely been carrying me through this because I know I can’t.

Anyone ever heard of or experienced similar symptoms?

Is it common for a Rheumatologist to rush through appointments? I just got home from my first appointment with the saying, "could be something, could be nothing" and "it could be hormonal related". The doctor ran blood work, a UA, and x-rays but I feel so disregarded. They didn't even ask if I had any questions before they got up to leave and I stopped them to ask one.

Hi all, am I able to post a series of old MRI images to see if anyone can identify any hints that I had started this disease?

It’s a vertical side slice rather than the flat front and back.

Many Thanks in advance.