Newly Diagnosed and Feeling Overwhelmed

[Lubyluboo]

Hi all,

After years and years of symptoms and feeling as though I am going crazy, I have been diagnosed with Behcet’s. Of course I feel relieved to finally put a name to my health concerns and to know it’s not my mental health causing the symptoms (as suggested by my GP) but I also feel so confused not knowing much about it - I had never even heard of it before. I have been struggling more with my symptoms recently and cannot seem to find any self-help advice online. I am starting on Colchicine this week and am feeling nervous about this. Any advice, support or guidance from you all would be much appreciated. I hope you are all well.

Thank you,

Lucy

[Lettie999]

Hi, sorry you have this disease, it can be horrible at times.Definitely ask to be referred to a centre of excellence, the help and support they provide is brilliant.

colchicine is a good drug but very harsh on your stomach so if you are on more than one tablet split your dose between morning and night, also try to avoid taking it on an empty stomach. Colchicine doesn’t suppress your immune system so on its own it may not be enough to treat your illness, just the ulcers and joint pain.

It’s scary being diagnosed but lots of us with Behcets still work, have social lives, kids etc so please don’t panic, you will be ok.

[Lubyluboo in reply to Lettie999]

Hi Lettie,

Thank you for your lovely message. I spoke to my GP who said the Centre of Excellence only like referrals if there is a specific element to the Behcet’s that’s different. I have been asked to wait for my MRA results first.

I am really struggling to wrap my head around it all at the moment but hearing from others, like you, is definitely helping to not feel so alone with it.

I have been referred for an MRA in 4 weeks and to see the Opthamologist at the hospital. Currently in a flare up so not feeling great.

Been taking the Colchicine for 5 days now so hopefully it won’t be too long before it starts to kick in.

I have a lovely Wife and twin boys but sometimes feel like such a burden on them! It’s horrible.

Hoping to find some support from other Behcet’s sufferers over time to try and stop feeling this way.

Thank you again for reaching out, I really appreciate it.

Lucy

[Flora_Fauna in reply to Lubyluboo]

Hi 😊 how are getting on with the Colchicine? I hope it's starting to work for you..I too am taking it, I take it 3 times a day, at first it gave me tummy issues & nausea but perseverance paid off & it's been my best friend over the last 7 years 🌷 It helps dampen down (in terms of severity) my flare ups & reduce the length of time suffering. Unfortunately I have been advised that due to more frequent gastrointestinal & eye issues that I will now have to try Azathioprine 😔 I'm fearful, but also sad that I may have to say goodbye to my colchicine friend.I have had to wait for my second Astrazeneca vaccination (which I had yesterday) to start the Azathioprine.Colchicine doesn't cut it for everyone but I really hope you find a friend in it too.

[Lubyluboo in reply to Flora_Fauna]

Hi Bleugh Behcet’s Zo,

Thanks for your message.

I have been taking Colchicine for 10 days now and my ulcers and swollen gums have completely cleared up. I am only on one tablet a day currently and have had some tummy problems (but I am used to that) so it’s no major difference really. I have been told to increase the dosage if my ulcers come back. It’s really reassuring to hear that it has worked wonders for you and I am really hoping to see the positive results continue.

I am sorry to hear that you have now been advised to start the Azathioprine. I think this is something we all wish to avoid if possible. I had my second vaccine today so hoping for no nasty side effects like I got with the first. How are you feeling after yours?

I am not on FB but have already followed lots of Instagram pages to seek further support. Like you have said, I have found a lot of it to be based in America and would love to find some more support in England. I was in hospital this week and only 1 out of the 4 doctors I saw even knew about BD. They then misspelled it twice on my discharge notes 🙄 it’s so frustrating.

I will definitely look up Beth Howe and Amanda Fessler though so thank you for the recommendations. My Wife and twin boys are amazing and I’m constantly aware of how my poor health has an affect on them. Work is the hardest part as like you said, it’s an invisible illness so it’s hard for people to understand how we can feel differently from one day to the next.

Thanks again so much for providing me with so much information, I really appreciate every response that I get as I feel very much alone with this rare disease at the moment.

I hope you are well and good luck with starting your Azathioprine.

Lucy

[Flora_Fauna in reply to Lubyluboo]

Aaahh Lucy, thank you for your lovely reply 🌼 I'm happy my info has managed to help a little 😊 My first vaccination knocked me for sick too, for 9 days! I was incredibly spaced out,dizzy,fuzzy headed,achey, my legs didn't feel like they belonged to me,(I was hoping I'd wake up with Tina Turner legs but hey not so lucky ) had temp, nausea & flare of fatigue & weakness. However Thankgoodness since my second vaccination yesterday afternoon,so far I have had mild fuzzy head,mild headache,slight temp & slight on & off dizzy spells. Really hope your reaction this time is as mild too 🤗 (sorry I'm a hugger) ..

I also really hope the Colchicine keeps being helpful for you, your wife & twins sound Wonderful & understanding, I'm sure they will learn more about Behçets alongside you, sometimes just 1 person understanding is a comfort & it sounds like you have 3 😊

Yep I agree, work is a toughie hey..I was one of 10 staff made redundant 4 years ago from a 10 year position (I honestly think the head of school/my boss thought I was a dramatist, he actually said once on a particulary bad symptom full day I was having "It's hard for me to agree to let you go home because you don't look ill".. he actually at one point got occupational health involved, however it backfired on him as they sent him a snotty email outlining the disability at work act & asking him to offer the support I needed whilst at work!

I quickly, fortunately found work again & absolutely love my newish job, in a more understanding environment, (I only work 4 days , so I can book appointments etc for the day I have off, so interference is minamilised & I get to do the cleaning in peace (I have two superace children too)

I'm a firm believer that everything happens for a reason & Behçets actually helped me in a way to get out of that judgmental & non empathic environment..

Please remember you are never alone & you are never a burden (Its not like we put our hand up when they were dishing out Behçets hey!) 💙✌🏼

Takecare

Zoë

[Lubyluboo in reply to Flora_Fauna]

Haha Zoe, I think we would all love to wake up to Tina Turner legs 😆. Sorry you were so ill the first time, it was a hideous experience for me too. Even my arm swelled to a big hot red lump. Had my 2nd vaccine yesterday and other than an aching arm I am feeling ok so far 🤞.

Sorry to hear that you were treated so poorly at work. That’s the problem with BD, because people can’t visually see that you are unwell they can’t seem to understand it - there is no need for obnoxiousness though! Please to hear that things are much better in your new place. I am incredibly lucky that my work are so supportive and lovely. I work in a secondary school and they have agreed to meet with me on Monday to look at how we can adjust my role to reduce any stress or overdoing it.

Where abouts in the UK are you from? Have you ever attended any of the BD group meetings before Covid?

Hope you’re still feeling ok after your vaccine 😊

[Flora_Fauna in reply to Lubyluboo]

Lucy, That's wonderful to hear about your supportive work place 💫 (I work in Education too, from Primary (cue obnoxious head of school) to Further Ed, with ESOL & supported learners 💛) & fab to hear about your minimal side effects of 2nd vaccine . I'm thankfully feeling ok (she touches wicker side table ) I haven't attended any of the BD group meetings before, maybe I should give one a look in sometime? Have you?

I attend the Birmingham BD Centre of Excellence for primary BD care & luckily have an understanding locum GP..

I'm in the South of Birmingham 😊

[Lubyluboo in reply to Flora_Fauna]

Awww sounds like an amazing role - good on you! Glad you’re still feeling ok after the vaccine.

No, I haven’t attended any of the meetings as I am new to this group. I was only diagnosed on the 7th May. I am waiting on an MRA and Ophthalmologist appointments before I can be referred the the Birmigham Centre of Excellence.

I am not too far from you. I live in Kenilworth, near Coventry. Hopefully when the groups are back up and running we can try one out 🙌😃.