I made a chart to document my BD involvement

[Miataman]

So I'm quite nerdy and love organizing things. I have some good news, I'm on Cellcept 1500mg /day which to me has always seemed high but the DR I saw at Mayo and my current MDs think it will be ok. So after 2 years of this dose, it looks like I'm doing well enough to come down a bit. I was on 2G/day for 2 years. In the past 2 years I've had 2 flair-ups but they were quickly managed with 4mg of prednisone for 5 days. I feel very fortunate as I read stories of others here. Ulcers and these pimple like things that hurt a lot are my main issues. I also have had bad edema in my ankles but after finding some athletic compression socks, I've been able to clear that up.

Anywho, I'm moving to 1000mg/day on the Cellcept. My DRs want me to document my journey, I will follow up with them in 3 months. So I made this, its simple and to the point.

My question is, has anyone made something like this before? I was thinking it needed to be easy for my DR to read quickly while giving a pretty good view of my BD issues. I feel like maybe I should put on there if I worked out or meditated that day?

Maybe stress level?

[jzeis]

Hi Miataman,

I like your charting system, because it's daily. I'm guessing that people who want to try using it would customize it for the specific symptoms/issues that they usually have. The links I've listed below might help with ideas of other symptoms to include.

The only official charts I've seen are filled out once a month by either the doctor (the Behcet's Disease Current Activity Form - BDCAF, at behcetdiseasesociety.org/be... ) or by the patient (the Behcet's Syndrome Activity Score - BSAS, which patients fill out and bring to their doctor). You can see the BSAS in this article: clinexprheumatol.org/articl...

You add up the points on each form and get a total score for the month. The higher a score is, the more active your BD is -- so those forms are best for looking at your overall health over a long period of time. But they make it hard to keep track of individual things that might be setting off your flares each month (getting your period, too much physical activity, stressful times, etc.), and how long each flare actually lasts.

Anyway, good for you for setting something up! Once you've used it for a while, it would be great if you could post how it's working out for you... like is there anything you've decided to add/delete, or other changes you've made?

Thanks!

Joanne Z.

[Miataman in reply to jzeis]

I can't figure out how to post a pic of what I came up with. Here is a link to my Google drive where I have my 4 week chart and a daily chart I made. I really wanted to make one based off the BDCAF but it is rather lengthy as it covers the "box of chocolates" BD symptoms. The best I could do is a one page per day that way. For me, this is data collection on how to manage my BD. So I don't mind the routine. It would be really cool if there was an app that let you do this easily that would allow you to submit your symptom check boxes to the commonwealth of BD stats. I would be interested in how sleep, diet, and other factors contribute to BD.

Here is the link:

drive.google.com/drive/fold...

[lesleyg in reply to Miataman]

Thanks! I've downloaded a copy through Google. Great Idea

[Legomum]

I love this chart! Thankyou for sharing Please may I have a copy that I could adapt?

For me I would give a score to the different type of ulcers as they flare at different times in my body. Skin spots / folliculitis would also feature for me. Would be so handy to have this visual chart with the space to jot down my prednisolone dose then see response. The other thing I titrate is use of the Triple mouthwash: 2 x day increases to 4x daily if mouth ulcers

[Miataman in reply to Legomum]

Here is the link to my drive. Feel free to use and change them:

drive.google.com/drive/fold...

[Legomum in reply to Miataman]

Thank you so much!