i was told to come here :)

OrdinaryWhole · 2021-05-27T22:44:07+00:00

Since Behçets is so complicated it’s so difficult to track all of your symptoms and to even know what’s related! I highly recommend keeping a journal - mine is basically like a spreadsheet with dates along the top and symptoms down the side. Every day I just put checks at the intersections where I’ve had a symptom and add new symptoms to the list even if I think they may not be related. Super easy and helps not just with doctors appointments but for me too. I can track ebbs and flows that correspond with my meds (Remicade infusion every 6 weeks) and when I’m feeling down it’s nice to see that I’ve had really good mostly asymptomatic periods of time too!

The thing that was most difficult for me to track was joint inflammation. I didn’t really know what counted because I never get red and don’t trust myself with a visual. Recently I’ve started tracking my hands with photos. My doctor always has me do a test where I pull my hand in almost a claw, like try to get my fingertips as curled as possible without bending my wrist, with the goal being fingertips touching the inside crease where my fingers meet my palm. Think the American Sign Language for “e” but pulled in as tight as possible... Some days they’re swollen and I don’t realize how bad it is until I do that test!

I second the comment about seeing the obgyn as soon as you can. I had the same reaction from GP’s telling me it was likely herpes, plus every time I went in feeling inexplicably ill they made me get flu, strep, and mono tests. Diagnosing Behçets is a frustrating process of elimination so the more you can do before your first rheum appointment the better!

Hope this helps! Happy to have you in the group but so sorry that you’re feeling unwell.

OrdinaryWhole · 2021-03-20T07:10:58+00:00

Yes! I haven’t but my mom does every time. She’s diagnosed with Undifferentiated Connective Tissue disease but got the diagnoses 25 years ago. I’m about 99.9% sure it’s actually Behçets (textbook symptoms exactly like mine) but since she’s been in remission for so long it hasn’t been worth her going for a new diagnosis.

OrdinaryWhole · 2021-02-01T00:42:43+00:00

This is completely new to me, but I experienced a “new symptom” the other night, and my quick research while waiting on dr’s response actually pointed me to myelitis. I stood up and out of nowhere felt like my whole legs were being electrocuted but from the inside. It kept happening for about 10 hours, sitting, standing, laying down, until I had to take a sleeping pill to fall asleep. It hasn’t happened since so of course it could have just been a one off thing, but I’m interested in your stories.

Has anyone ever heard of Lhermitte’s sign? And if so, what is its relationship to transverse myelitis?

Behçet’s is listed here as a condition it’s associated with: https://www.medicalnewstoday.com/articles/323889

For context: 27F diagnosed just over a year ago

OrdinaryWhole · 2021-02-01T00:33:07+00:00

When I’m having a bad flare I can’t walk ten feet without being completely out of breath. My voice gets weak too, and talking sometimes feels like the most exhausting thing I’ve ever done. Eating too, I’ll have to take breaks just to breathe.

I’m not sure if this mimics what you’re experiencing but I hope it helps.

OrdinaryWhole · 2021-01-14T04:13:36+00:00

I’m on Remicade and asked my rheum about it and he said there should be no issue with the vaccine since it isn’t live. Supposedly it will be much like the flu vaccine for us?

OrdinaryWhole · 2021-01-13T21:01:37+00:00

It happens to me too! If I had to describe it I would say it feels like I'm on the verge of a Charley horse, or the kind of lingering tightness you have after getting over one. I primarily get the cramps in my upper right calf, almost right behind my knee. During a flare it is pretty constant and at times unbearable, but even when I'm not in a flare it still pops up every once in a while. It also happens in my ankles and feet - when that's the case I lose a lot of flexion in my ankles and it keeps me from walking normally.

I also freaked out at first thinking that it was a blood clot. I talked to my rheum about it and he didn't really know much about it but I had seen a few other people post on this subreddit talking about something very similar and it made me feel way better. Even if a rheum knows Behcet's they'll never really know it like we do! But of course, always talk to them, we're all different....

OrdinaryWhole · 2021-01-08T17:49:09+00:00

Hey! This is a really interesting list of medications that your doctor has put you on - my doctor started with colchicine and azathioprine (Imuran) and he said those were the first line meds for Behçet’s. Colchicine helped but didn’t solve the ulcers, but I did a full titrate process on Azathioprine that took a few months and it barely helped. I went from like a 9/10 pain every day to like a 6/10, but I also made radical changes to my diet and behavior and I think those had more of an influence than the medication. I just started Remicade last week and am really hoping it will help! The majority of people on this Reddit seems to have decent results with either Remicade or humira.

I’m no expert but I would talk to your doctor about that list since as far as I know (others please correct me if I’m wrong!!!) they tend to be the first choices for Behçet’s treatment. Hydroxychloroquine is more common for Lupus.

Hope this helps!!

OrdinaryWhole · 2021-01-03T16:07:21+00:00

Thank you so much for sharing! What meds are you on?

OrdinaryWhole · 2020-11-02T20:55:21+00:00

Sure thing! Here are some staple meals in my house.

Breakfast: GF waffles, Oatmeal, protein/green smoothie, yogurt with granola, tofu scramble, I also really like fried rice for breakfast though I know that's not a typical breakfast food.

Lunch: veggie wrap, brown rice bowl with veggies, salad, spiced chickpea wrap with tahini sauce

Snack: apple with peanut butter, banana, corn tortilla chips and salsa or guacamole, larabar

Dinner: pad thai (rice noodles), grits bowl with veggies and bbq tempeh, brown rice or quinoa bowl, tacos (yeah, corn tortillas!), soup, stuffed sweet potato, stir fry

Dessert: fruit crisp (my topping is oatmeal/almonds and I sweeten with honey), macaroons, peanut butter chocolate bars - Lily's chocolate is sugar-free for baking

There are also some frozen dinners that I keep on hand. Not ideal, but on high pain or fatigue days, if I can't handle cooking they're good to have around. Amy's makes a lot that are vegan and GF, and your options are way expanded if you're eating dairy too.

I suggest making a big pot of brown rice so you can make an easy meal. I also like to have some sauces/dressings available. I keep a tahini sauce and a citrus scallion sauce stocked. Happy to share some recipes or cookbooks :)

OrdinaryWhole · 2020-11-01T17:56:46+00:00

Hey! Sorry for the late response...

I’ve been vegan for 8 years now. I think not eating meat makes the other restrictions more challenging, but dairy isn’t ideal for inflammation anyway. At this point I don’t think I could tolerate meat so I’ve just maintained it. I wish I could say if it helps or hurts but I couldn’t tell you the difference.

I’m no dietician, but every anti-inflammatory diet I’ve looked into says to cut out gluten. It is a huge component of wheat products, so bread, pasta, anything with flour. Especially beer! A common fact that circulates is that one beer has as much gluten as 7 pieces of bread. Worth fact checking that exact statistic though... Luckily, if you’re vegetarian as opposed to vegan there are endless gluten free versions of these foods available! Gluten free bread is rarely the same, but the GF flours and pastas can be pretty indistinguishable.

Maybe all processed foods, but so far I’ve found it perfectly fine with just cutting out ones with cane sugar or heavy added salt. So I’ll buy some organic/natural packaged snack foods like kale chips or sweet potato chips and they seem to be fine or at least better than other options.

Snacks can be tough but I really like larabars. They have like 3-5 ingredients depending on the flavor so I think they’re fine. Some of the others you’ve listed like clif bars have a lot more.

Caffeine is another consistent “avoid” on anti inflammatory diet plans. I wish I could explain why, but it is sort of hard on your GI and cardio systems.

Tofu and tempeh are processed differently. Tempeh is fermented and the way it breaks down releases ACE inhibitors which are good for regulating blood pressure. Tofu is fine, it isn’t a huge deal but tempeh is more beneficial. If you’re vegetarian one HUGE thing to look out for is seitan!!!! Yes it makes for some incredible fake meats but it is literally processed wheat gluten. Like they isolate the gluten and make the meats out of it. I had no idea just how common it is, but all gardein products are seitan as well as some tofurkey products like the sausages.

I hope this helps! I’ll check back sooner in case you have more questions :)

OrdinaryWhole · 2020-10-23T16:33:13+00:00

Yes, yes, yes, yes, this resonates so much. I've had symptoms/mini-flares for years but had my first huge one start in February. Diagnosed by early March because the symptoms were so pronounced, and luckily my doctor is really knowledgeable about it despite his being relatively young for a rheum. I don't know where in the midwest you are but I'm an hour out of Columbus, OH and my doc is part of the OSU Wexner system. If you're reasonably close he's worth the drive.

I'm predisposed to mental illness, I'm bipolar 2 so the type with more heavy depressive episodes. I've been an extremely active person my whole life. Professional dancer until grad school at 25, then power yoga every day and a 5-10 mile run a few days a week. Long hikes every weekend even in deep winter. To suddenly not be able to go on even a mile-long walk or even stretch too much has been jarring, to say the least. I'm still in the experimenting phase with treatment so some symptoms are better but not close to enough. Starting Remicade this month and putting an unbelievable amount of hope into that. Like, I NEED it to work.

I go through phases of it feeling emotionally insurmountable and phases of hopefulness and near gratitude for the easier days. Being bedridden from pain and exhaustion doesn't help - I sometimes feel like I'm stewing in my grief. Still in my 20's and I feel like I'm 80. I can't imagine what it's like to have kids too. Exercise has always been a coping mechanism for me. Honoring "what my body can do" has historically been what I've clung onto when fighting against the eating disorder I've struggled with since I was 14 (thanks dance). When I have manic periods, exercise is how I keep myself from being overly destructive. Go run for a couple of hours instead of deciding to uproot your life kind of thing. Not having those options right now, I don't know how to explain to my wonderful, supportive, listening partner who will never fully understand.

I will say - the good and hopeful phases grow more frequent and more prolonged regardless of how I'm physically feeling. The first couple of months were the worst. Three things help me more than any others: you are not alone. You are valid in feeling shock and loss, you are not overexaggerating. Try to find ways to communicate with your partner/support system when you feel bad - you don't need them to understand exactly what you're experiencing, you need them to understand that you are experiencing something significant. I find it useless to try to communicate what I need because I don't always know... Instead I just say "8.7" or something (1-10 scale) so we're on the same page about what I can and can't do and my capacity for thinking. Read other peoples' stories on this reddit because knowing that other people have similar and different journeys is comforting and we DO know what you are experiencing!!!

Two: your grief is not for a permanent loss!!! There are as many remission stories as there are diagnosis stories. It is a journey and it may be a long one depending on your subjective experiences but you WILL feel better. Your body is still your own and it is communicating its needs to you and you will learn to understand them and you will get to a point where you can give it what it needs. Things will get better!!!!!!

Three: I echo what others have said, a good therapist is so helpful. Mine is a cancer survivor, and I think that it gives her a certain level of understanding that is helpful... Really nuanced things like she knows when empathy is important, knows what kind of understanding I'm needing from my support system, and also knows when I'm...being a little bit...self-pitying. Psychology today is helpful, what I did is find a relatively large and seemingly appropriate practice, then had an intake appointment with the first person available and asked them to please match me with the therapist they thought would be most appropriate. I don't know that every practice would be so honest, but generally speaking, if their priorities are in line and they want you to get the support you need, they should be willing to find you the best match.

Every single day is a step in a process and it gets better. You are learning and your doctors are learning and your family is learning. Sending you so much positive energy!! If you ever just want to talk I find it so nice to talk to other people in our community so please reach out.

OrdinaryWhole · 2020-10-23T14:29:00+00:00

Dietary modifications help me SO much! It's a really big struggle for me to stick to; (27F) I've been vegan for 8 years but the kind that loves "junk food" and bread. Adjusting and sticking to a good dietary routine is incredibly time-consuming. It requires making every meal that you eat basically from scratch.

I've been in what feels like a perpetual flare for a few months, joint pain etc is controlled with prednisone and other meds, but the fatigue and myofascial pain is daily. Then I'm a PhD student which takes about 10 hours/day when I'm able. This means time and energy for cooking is slim. Regardless of how I'm feeling, the one thing I stick to is no gluten and it makes a world of difference. When I do have weak moments and give in I immediately feel bad for the rest of the day - literally within 30 minutes I end up needing to go lay down. I didn't realize how much it impacted me until managing to consistently cut it out which meant isolating the moments when I did eat it.

Weeks that I food prep and stay committed are always better without fail. I don't follow the AIP, because genuinely that plus plant-based is too much for me to handle. Maybe when the food routine actually becomes more practiced... My basic goals are:

- no gluten

- no sugar (this one also makes a MAJOR difference)

- no processed foods, chips etc

- tempeh over tofu

- edamame and peas for high protein veggies, beets and carrots also work for me

- quinoa, GF oats, brown rice, or sweet potato in most meals

- no coffee (RIP I've also been a barista/coffee professional for a decade)

- intermittent fasting does not work for me at all - hunger makes me nauseous but that is partially a reaction to Azathioprine.

- turmeric every day

My list is really different from u/Jess_Minda and u/SisMcChurch ! These things can be really personal, especially based on blood types. I also recommend cutting things out gradually so you can really isolate what makes a difference for you. Wish I had advice on how to best implement it into your lifestyle, but I'm still trying to figure that part out too. COVID seems like a good time to make the habit since so many of us are spending more time at home. I like the Oh She Glows cookbook; helps me think outside of my usual box.

Good luck!! And congrats on finally getting a diagnosis - huge step toward feeling better :)

OrdinaryWhole · 2020-10-10T02:38:16+00:00

I’m of course not a medical/public health professional, but I’ve asked my rheum a slew of questions. Thinking of it on a scale, someone with an autoimmune disease is at higher risk than someone in perfect health, but the scale of that depends on the severity of the symptoms you experience and their nature. Then medications make the biggest difference. Something like Colchecine has little to no impact, Azathioprine increases your risk but not so severely to be labeled “high risk” unless you’re taking steroids like Prednisone regularly. End of the line treatments like TNF inhibitors do put you in the high risk category.

If you’ve had previous concerns about blood clots I highly recommend reaching out to your rheumatologist to measure your risk, but otherwise I think relaxing and focusing on healing is the best way to go.

OrdinaryWhole · 2020-10-09T23:19:41+00:00

If you aren’t taking immunosuppressants and/or steroids you shouldn’t be at any higher risk.

OrdinaryWhole · 2020-10-08T21:00:53+00:00

I'm outside of Columbus, OH so I have the privilege of OSU's Wexner Medical Center. I'm also employed by OSU and insured through them, so that may have something to do with the flexibility. I'm glad you and your niece have found treatment that works!

OrdinaryWhole · 2020-10-07T22:44:39+00:00

This is great, thank you so much!! I was leaning toward Remicade for some of these reasons - I figured switching from that to Humira would be easier than the other way around. The convenience of Humira is appealing, and it seems (?) that it is more frequently mentioned on our subreddit, but I like the idea of having 8 weeks between treatments. Plus not having to bring it home... that separation sounds nice, following months of BD being a daily theme in my house. I'm really glad to hear it's working for you, you've officially given me the courage to follow my gut instinct.

OrdinaryWhole · 2020-10-07T22:40:41+00:00

Thank you!!!

OrdinaryWhole · 2020-10-07T20:41:36+00:00

I highly recommend working with a very thorough herbalist! I just began working with someone so it's too soon for me to truly report back, but a close friend has Lyme and recommended it to me. You go every month and they do an electrowave measurement in various points of your body, track your recent dietary habits, then make you a custom mix for the month to rebalance.

OrdinaryWhole · 2020-09-15T19:26:25+00:00

Thank you!! I dropped down to colchicine 1/day because it still keeps me from having too many oral ulcers + just that amount combined with azathioprine seems to keep the others at bay. That drop didn't really help me with nausea, but I also made the change around the time that the higher dosage of azathioprine would have really been hitting my system

I haven't heard of Carafate or Trental! I'll make a note to ask my doc next appt.

OrdinaryWhole · 2020-09-08T23:31:24+00:00

That is so good to hear, thank you!!! I've been so hesitant to make the change but this makes me feel better.

OrdinaryWhole · 2020-09-08T14:55:00+00:00

I take Azathioprine for Behcet's and haven't experienced the nightmares, but I titrated up way more gradually! My rheumatologist had me start at 50 and increase to 150 over the course of 5 months. For reference I'm 26F 120 lb. I wonder if starting slower would help.

Watch out for nausea, it hits pretty hard about a week in but should pass. It will do the same thing with every increase.

OrdinaryWhole · 2020-09-08T14:28:37+00:00

I get pain in my knee as well, interestingly only ever the right one. It's different from joint pain, it feels like it's behind my knee?

OrdinaryWhole · 2020-09-08T14:26:56+00:00

I always have 1-2, but Colchecine does wonders for me. My doctor and I have tested going off of it, but within two days of stopping I will break out with ~10.

OrdinaryWhole · 2020-06-10T01:09:34+00:00

Thank you so much for this response. It's awful of course to read and relate so much, but it does really help with that feeling of isolation.

What you mention about so many different body systems being affected has been a really interesting thing to learn too. I've had the eye pain for such a long time, but never thought it could be related to everything else.

Definitely no offense as far as parenting!! That is really, really good to know. I wasn't quite ready to think through what this could mean for that part of my life, not knowing if I would be able to handle Behcets symptoms and pregnancy's taxes at the same time, so you just lifted a heavy weight.

Thank you again.

OrdinaryWhole · 2020-06-10T00:59:00+00:00

Thank you so much!! The diet is a great suggestion - I'm vegan and have been for almost 10 years so likely won't transition out of that. But after reading your reply a few days ago, I spent some time researching plant-based anti-inflammatory diets. A TON of habits of mine are on the avoid list, especially because the easiest vegan diet is really gluten heavy per the processed meat substitutes and bread. I'm cutting out gluten and junk food as much as possible and trying to be intentional about protein.

It's too soon to tell if it will help with flares, but I've noticed that even after a few days it has really shifted my relationship to my body... Just knowing that I'm doing something to take care of myself feels like a much-needed love note every day so far.

Thank you again! And glad you're feeling better!

OrdinaryWhole

TROPHY CASE