Newly diagnosed and very confused : Hello... - Behçet's UK

Behçet's UK
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Newly diagnosed and very confused

Aja1
Aja1

Hello everyone,

Apologies in advance for my long post.

I'm a 30 year old male from the UK and for the past year and half I have been getting increasingly severe flare ups with symptoms as follows:

Red, sore and itchy rash like patches on hands, elbows, face and around lips.

Genital ulcers and severe mouth ulcers

Fatigue

And more recently nausea

I recently saw a dermatologist who first educated me on BD and suspected I may have it so I'm not fully diagnosed although it is looking very likely.

I also got told I have sacrolitis a few years back which is another auto immune disease.

Due to both of these I'm confused to which one I actually do have and I'm struggling to get help. I'm scheduled to see the dermatologist again in 3 months but am currently going through ANOTHER flare. That's 3 in the last 6 months. Admittedly I do have a very stressful job and I do noticed the flares happen when I am stressed or run down. Does anyone else get them this frequently and does this sound familiar to people?

I have been given corticosteriod ointment and a steroid ointment for lips which I've only tested out since yesterday and that did reduce the red patches.

I still feel as though I havent had a proper diagnosis and that it could be a million of the other diseases associated with my symptoms and that is freaking me out.

Mentally I feel isolated and frightened what the future holds after reading the serious health conditions that can occur with BD. I also find the thought of having this forever incredibly daunting.

Just.looking for advice really...

10 Replies
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I'm going to let others reply in more depth but BD sounds likely with the genital and mouth ulcers. I understand the confusion as it's hard to get a definitive diagnosis with auto immune diseases. You can also have more than one. Have you seen a rheumatologist. If not that's the direction to go. For me I have been told both BD and Lupus so yes it's frustrating.

Hi,

First- If you have not been to a rheumy- run, don't walk. Derm is good, but you need a rheumy, in my opinion. Second, take a breath and try not to imagine worst case-most likely this IS what you have, along with the other and, rather than considering every other dred disease that it could be, work on accepting that you have at least one autoimmune disorder (I never use 'disease') and probably another. I do, as well. I've three and yes, it took a long time to get the BD diagnosis, although it was one of the first things that my Rheumy asked me, on that long first visit "Has anyone ever talked to you about Behcet's?" me: "Duh? about what??" I say all of this because honestly? To me? In the beginning? It wasn't about WHICH auto-immune disorder I had, it was about having one. THEN it became about which one(s). Yes, regardless of what you have, you will have it forever, most likely, so you need to learn to make it play nice. Or as nice as is possible to make it play. YOU CAN CONTROL SOOO MUCH MORE THAN YOU THINK YOU CAN, RIGHT NOW! I will say this; there is nothing wrong with being afraid. Of being angry. Of being sad. You have got to have a lot of questions that start with basics like: will I be able to work still? what does this mean for my sex life? For my relationship life? etc? Those are really normal reactions. I'd say face them each and talk with your doctors about them. I know a lot of people who still have pretty great and full lives and have BD. Is it easy? No. But, a good life IS possible. We are so fortunate in that we live in a time that this disorder is both recognized and treatable. I also know of a few whose symptoms have SOOO diminished as they got older-for some it started after about five years of full symptoms starting-that they were for all intents and purposes, in remission. Lifestyle helps make it easier, in my experience.

Let's maybe talk about some comfort measures- and I'm not a doctor, am trying to finish nursing school *at 57 lol*, but none of this is medical advice- ok? I can only share what has worked for me and what is pretty readily available on BD pages, etc. But, everyone has certain things taht work for him. So: the ulcers (I do this for both the oral and genital-and the body ones that I get): my rheumy rx'd me viscous lidocaine so taht I could make my own 'magick mouthwash'. Has anyone given you that? The basic recipe is pretty simple, with some things added in by the rxing doc, as needed. The basic recipe is mostly what I need, rarely needing an anti-fungal added in by my doc. It is lidocaine, liquid benedryl, and mylanta. The ratios are online or your pharmacist or doc should be able to tell you. The benedryl and lidocaine help to numb things up, and the mylanta helps to neutralize the acidity (ph) of ulceration sites. I do NOT use this on open body ulcers-only before they actually 'bloom'. I also dab this on down south, and asked my rheumy if it was ok. She looked surprised, thought a moment, smiled, and said "I don't see why not, if it works for you! Make sure that you rinse the areas, just as you would using creams. You might want to use the rx'd cream in conjunction with that" So- perhaps getting something like that might be worth talking to your doctor about-

I do not get the patchy scaly skin areas that you describe, so I can't address them. Maybe someone else here can help out with what works for them. I DO trigger from sunlight, so if you need help with that? umm.. cover it up, slather on sunscreen, and play vampire! LOL

Next: yes, the number of flares you are describing are not unusual, from all that I've heard and what I know personally, for untreated BD. However, treatment often reduces them amazingly! In fact, there are days when, even with all the other crap i've got, I feel almost normal. The right treatment works wonders. I was just put on otezla, to go with weekly methotrexate injections. Otezla was just approved (in July 2019) by the FDA for Behcet's. My skin, oral, genital lesions disappeared within two weeks. It was STUPENDOUSLY thrilling. After three months of treatment, it is starting to help with my small joint pain and more, as well. Obviously, I've other meds, but the main ones are otezla and MTX, I tell you this so that you know that there is definitely hope.

What do you do to relax? to unwind after that stressful job? How do you manage the stress during the day? Even being able to manage your breathing, will help to reduce your body's stress hormone release. How do you sleep? How much? Diet? (personally, going gluten free and eating wayyy less meat, and red meat only rarely, helped me enormously. Cashew milk in coffee makes it taste like hazelnut coffee! and is awesome with puffed millet cereal topped with berries!). So- relaxation, physical/psych management of stress, adequate sleep and diet- if nothing else eat 'healthy'. ALL will help you during flares and may decrease flares. Exercise. I'm not talking about iron man here. Stretching to help with muscle spasms and pain, for sure. I found yoga to be my lifesaver- it seems to help meditate, too. I'm not able to 'clear my brain' etc. but if I can find a quiet place? or even focus on breathing for five minutes, or just flat out enjoy moving my body, I'm happy. I swim, when I don't have body ulcers. My pain management doc said that many people find pain diminishment after 9 weeks of weight training. I'm giving it a shot, starting next week. Again, these are just things that may or may not help you, for where you are now.... Exercising, as you can, seems to help control flares.

This is a lot to go on with- but if you have any questions, or I can help? Please let me know. I HOPE that there is something in here that helps you.

My very, very, best to you.

Gentle hugs.

Thank you so much for your reply, I really appreciate the time you have taken to come back to me.

My last flare up was the first chance I got to try out the steroid creams and ointments I had been given and they really did work wonders. This time I just got the red patches coming up everywhere but no sign of mouth or genital ulcers for the first time?! Just when I thought there was a pattern it changes... not that i'm complaining!

My mental fortitude on the whole scenario has improved much more now I know I have a few tools available to help prevent major flares. I also bought some similar mouthwash to the recipe you mentioned so have that ready to go in case of a flare.

I normally exercise a LOT but have noticed over the last few months I reduced that - due to work, family illness and other things taking priority and low and behold I got worse. So definitely going to start doing that again as it hugely relieves stress for me. Also really helps with the muscle fatigue.

Seeing my dermatologist soon as she was the first person that mentioned Behçet's to me even know I was already seeing a rheumy for my other auto immune disease. So I'm going to ask to be referred back and take more of a firm stance on investigative measures. Thanks for the advice! I'm also going to ask about being referred to the specialist centre here in London.

Felling much more positive in general and your answers were a big help in that. Thank you so much again and I hope your nursing course works out (huge props btw!). I also hope your own struggles continue to be as manageable as possible.

xxx

sam0511
sam0511
in reply to Aja1

First - well done on posting on this site - you will get so much advice and support. My only advice is avoid anything anti-inflammatory. Drugs, lotions even foods with anti inflammatory properties such as pineapple. Sounds bizarre I know! Good luck and keep posting x

If you are showing signs of Behçet's and you are in England, you can ask for a referral to one of the Behçet's Centres of Excellence. You do not need a diagnosis to be referred, and your GP (or any other health professional) can refer you without any cost to their practice. I believe referrals may also be possible from Scotland, Ireland and Wales.

Read the info here and check back here if you need to know anything.

behcets.org.uk/national-beh...

Frequent flares, especially when under stress, can be a feature of Behçet's. I have had spells of back-to-back flares with no respite in between. Getting onto the right drugs can be life-changing. Colchicine can be very effective and is usually the first drug to be tried if Behçet's is diagnosed or even suspected.

Good luck!

Aja1
Aja1
in reply to Jaxxi

Thanks Jaxxi, going to get a referral for sure.

Also I got Colchicine and it worked wonders!

I can relate to your fears and misunderstandings. I was diagnosed with Behcet's about 5 years ago, and honestly, I don't know much more than I did after the initial diagnosis. You're a bit luckier because you're in the UK. I'm in Arizona, USA, and finding a doctor who knows the disease, is difficult at best.

My oral ulcers flare up more during times of extreme stress. I'm not sure if you can get this medication in the UK, but there's an oral lidocaine (paste, tastes like vanilla) that not only numbs the pain, but helps heal. I've had trouble getting it because some doctors say I need a dentist to prescribe it, but it all depends on who you see.

Again, I'm not in the UK (although I wish I was) so I think you'll fair better than me. I've been on this site for a while and people there are much more informed than here. Please, if you need to chat, I have no problem with that. I may be able to help some.

Aja1
Aja1
in reply to Kellsbryant

Thanks Kells, that is very kind of you to say, everyone is so nice and informative on here. Helps a lot!

Sorry that you are struggling more being in the US, I hope you can get the help and support you need x

Hi, well welcome to the group - I found it when feeling isolated & it’s really helped to have people to ask questions and reassure since Behcets is rare. Firstly we all know the battle of getting diagnosed and treated, so do keep actively coordinating & focusing on your health care until you’ve got things sorted. Keep a photo diary, this was one of the best bits of advice I was given and clinched diagnosis. Secondly, lots of us work full time and manage to get some kind of quality of life back once diagnosed. I’ve managed quite well in colchicine for example, the magic mouthwash and synalar ointment. I’ve also got fibromyalgia & it’s not uncommon for auto immune conditions to exist side by side. That said they are often treated in similar ways. Try as much as you can to sleep well, eat well and take up something on the relaxation side. Hope this helps. Best wishes

Hi, I was diagnosed with Behcet last year by a neurologist, but only because my symptoms were not skin related, I had severe double vision, loss of taste, weakness in body movement, facial numbness and etc. But the good news is that my drugs helped them all go away. I have no uclers, however I do get itchy patches around my neck when I'm under stress. In general my neurologist has told me that stress is the main triger for behcet, and with stress I usually get shaken up.

I would say as others have said see a rheumatologist, but personally I have been treated by a neurologist so it could also be good if you can see a neurologist specialised in autoimmune disorders or inflammatory disorders.

In regards to been frustrated from BD, I can only tell you that BD has many many different symptoms and it differs from person to person, it might sound scary but there are amazing drugs that control it very well and you can have a normal life. Yes it sure is hard and will def affect your lifestyle, but honestly it really isn't as scary as it sound. Keep positive and be calm, it really makes a big difference in controlling BD.

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