An update from me

[EmmieJayne]

Hi Everyone, I saw a Rheumatologist yesterday as I’ve been having a flare up of symptoms recently as per my last post.

I was a little worried as hadn’t seen this particular Dr before as mine was on leave. Lucky for me she was familiar with Bechets and had been on a talk on it the day before!

She was very good, spent a lot of time going through all of my symptoms. I took a list of all my records of headaches and mouth ulcers over the last 7 months, and it was clear things have got progressively worse for me recently. For my mouth ulcers she has prescribed me Colchicine 500 micrograms to take twice a day - this should prevent any mouth ulcers forming, but if they do I’ve also been prescribed Beclometasone that is an inhaler, this will coat the inside of my mouth and reduce any inflammation.

Something interesting came up at my appointment, I was asked if I’d had any blood when going to the toilet, which I had a few months ago - I saw a pathologist but they didn’t seem to think it was anything to worry about. At the time I didn’t link this with Bechets, but apparently bleeding is a symptom from the inflammation!

She is going to speak to my usual consultant when he returns next week, a decision will then be made to start me on any immunosuppressant treatment, or if I need to be seen by a specialist at CofE in London.

Just want to say how helpful this page has been for me. To know others are also experiencing this helps us all know we are not alone xx

[swalls48]

Good to hear you have made a positive connection with your doc! Careful getting into steroidal immuno-suppressants unless absolutely necessary. Make sure you are ready to stay on them for a longtime. I have a very hearty stomach and still have issues from my steroid regime.

[EmmieJayne in reply to swalls48]

Yes I understand and it isn’t something I really want to be on. My symptoms worsen for 1-2 weeks out of the month, for the other weeks I’m absolutely fine, apart from being tired all the time but I’m used to that and have long periods of sleep so I can function properly. I’m hoping I get referral to CofE and let them decide..

[swalls48]

If you have a brief description of your medical history I could weigh in on your treatment options. I will add some more input on immunosuppressive therapy when time is available. You are certainly not alone my friend!

[Jaxxi]

Very pleased to hear you are getting excellent support. Do give the colchicine time. It can make your stomach feel gross for a couple of weeks but it does wear off. It worked great for me for several years but it took about 3 months to get the full effect. It not only controlled the ulcers but also helped with joint pains, skin rashes and fatigue.

[Katgandy27 in reply to Jaxxi]

I was trying to take it but it made me feel like I had a stomach bug. Is that how it was for you?

[Jaxxi in reply to Katgandy27]

Yes, I did feel like I had a tummy bug - gurgly and nauseous and crampy with quite urgent diarrhoea at times. It settled a bit after a week or so but was still quite bad, so I cut back to one pill a day, then when my tum was used to that upped it to 1 and a quarter, then one and a half etc. It took 4-6 weeks to get back up to 2 pills, but I was able to get there without side effects.

[EmmieJayne in reply to Jaxxi]

Thank you for your reply. Today I have terrible joint pain. And I suffer with fatigue a lot so hopefully it’ll help me too xx

[rooser1]

Wonderful to hear you seen a good dr. I agree with jaxxi on everything about the colchicine. It did a lot on my stomach for months and Joanne Zeis actually recommended to me to eat one pill a day starting to help and then increase to two. Also I have blood and/or tissue bits in my Urine when I’m flaring and have diagnosed it as renal papillary necrosis. Vasculitis is a cause of it...surprise surprise.

Stay up on water and nutritious foods and anti inflammatory herbs. And of course stay well. Xoxo

[EmmieJayne in reply to rooser1]

Thank you for your reply. I’ll take onboard your advice and hope to feel better soon xx

[Polaris_Ab in reply to rooser1]

Hi rooser1,

I realize that this is an old post, and so you may not get this message. But, I'm just wondering how your renal papillary necrosis was diagnosed?

Were the bits of tissue in your urine sent to pathology? Were they white and flat, or coloured and/or more bulky? Did you have any back/side/kidney pain? Did you have any other tests (imaging, perhaps)?

Sorry for all the questions! I'm having lots of health issues, which include white flakes in urine, bright yellow urine, kidney pain (both sides), and much more. 2.5 years without diagnosis, and any info you can share could help!

I hope you are doing well.

[rooser1 in reply to Polaris_Ab]

Hi I got the notification. I brought in a urine sample with the white flakes of tissue floating about. They ran a bunch of blood work and I do get bw done every eight weeks and they saw no noticeable kidney function changes, they just monitored it and it went away with a few weeks. No ct scan. I can’t remember if I had flank pain. I want to say yes and that it was dull and I think I wasn’t sure if it was muscular or in the right spot.

As of today, behcets is pretty behind me minus an ulcer here or there or inflammation from over exercise or terrible sleep. Diet, sleep and stress management pretty much cured it all for me along with finding the right supplements for me. It takes time to calm the inflammation. Like months to years and it’s always two steps forward abd five back my friend.

Feel free to dm me or find me on ig (bitterbiologist) and I’m happy to listen and offer what’s worked for me.

Ps bright yellow urine sounds like a vitamin output but I’m assuming this is sudden change, but wanted to mention it anyways.

[Polaris_Ab in reply to rooser1]

Hi Rooser1, thanks so much for your reply - and so quick, too!

Thanks also for sharing about your experience with papillary necrosis. This is very helpful. I do have one question about the urine sample with white flakes that you brought to your doctor: I'm just wondering if those flakes were ever investigated under a microscope?

I've had my urine tested (machine/computer analysis) and the flakes never flag as anything abnormal. Completely normal urinalysis, and also normal kidney function as measured through bloodwork (egfr and creatinine). I really want a human pathologist to look at these flakes - and especially the larger chunks of thin white tissue which I sometimes shed (flat pieces sometimes 15mm or longer). Right now, I'm just trying to try to figure out if it will be worthwhile to fight for a pathologist's investigation, as every test that comes back negative yields another point in the "patient has health anxiety" column.

Interestingly, my urine colour change, from clear to bright yellow, happened suddenly and at the same time as I started to experience the flakes and pain. No changes to diet or vitamin intake. No dehydration, either (I drink tons of water).

I'm glad to hear that you are doing well. Success stories provide hope, even if they can take years as you say.

I have yet to join ig ... are you a biologist? (your ig name? )

Thanks again for your help. I appreciate it very much!

[rooser1 in reply to Polaris_Ab]

They never analyzed them but my urologist was very on my side and never dismissive so I trusted him to do whatever was needed or not.

I am a scientist, a sugarfree one 🙃

[Polaris_Ab in reply to rooser1]

Thanks again for the help, rooser1! I'm glad that you had/have a doctor who is there for you. I'm also glad you are a scientist, sugarfree or otherwise, that is cool!

[rooser1 in reply to Polaris_Ab]

Also yes join ig! There’s so many of us on there!! You just search for the hashtag #behcets

[SCMW]

Hi,

I’m also a fairly recent diagnosis (May). Fortunately I had a very good rheumatologist who recognised probable Behcet’s last Summer very quickly. I went on colchicine Dec time & was diagnosed at the COE in May. Colchicine has been positive for me, with ulcers, skin & joints all responding well. I’m on the same dose as you & triple mouthwash. You didn’t mention which (no 1 or 2!) when going to the toilet & bleeding, but I’ve had rectal bleeding. After investigation it was shown not to be anything nasty but interestingly stopped after going dairy & gluten free... Dietician commented she had a very complete list of symptoms from me for dairy allergy & it’s worked for me. I guess it’s calmed inflammatory responses. After the COE appointment, I was left a bit unsure as to whether I would be starting azathioprine but saw my local rheumatologist busts this week & am currently staying on the colchicine for now. Like you I found this website and looked at many posts, it was really helpful so try to contribute too. Good to know we are not alone. Best wishes

[EmmieJayne in reply to SCMW]

Hi, thank for your reply. Yes mine was rectal bleeding also, the Rheumatologist did say they may get this looked into to see if it’s a result of inflammation- it hasn’t happened for a few weeks now thankfully. Good to hear your medication and staying off dairy is working for you, I don’t have much dairy apart from cheese, I’ve been having soya milk for sometime now.

I hope to hear back from the Rheumatologist soon regarding possible referral to CofE.

Best wishes to you also xx