Newly diagnosed

Hey all,

So this all started 2015 when I started getting mouth ulcers, I was diagnosed with geographic tongue it went and I was fine until October 2016 where I had bad throats infections that lasted until Jan 2017. After this I had prosisis al over my legs. This was put down to the infection and I was advised it would clear up. Since then I never felt quite normal but just thought it's was down to being an over weight new mom. Well may 2017 everything flared up together l. I could barley walk and was diagnosed with erythema nodosum. I was given antibiotics and steroids after a week of headaches I started to get blurred vision and my eyes where blood shot. I was refered to the eye hospital where they found swelling behind my eyes and uveitis so was sent straight to a ward. Iv now had ct scans MRI scans blood tests and seen an opthomologist and had my diagnosis for Behçet's disease.

I am still on steroids for my eyes but they are still very sore and my mouth is a mess with ulsers.

How long do peoples flare ups of different symptoms last ? Dose anyone els have shin pain ? I mean 8/10 constant pain (as in makes you sick it's that bad) and is there anything that helps other than co-codamal as this hurts my tummy?

Sorry for the long post ☹️

6 Replies

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  • Hi sarah,

    You poor thing sounds like you are taking the full force of Bechets... I have had it for most of my life. The best thing to minimise your flare is total bed rest. The steroids will take effect but it depends on what doseage you are on, generally you will get started on a lower dose which means a longer recovery until your doctors can determine the severity of your disease.

    Do you have a rheumatologist yet if not get a referral as a rheumatologist will manage your disease with you and start you on a proper management plan as you will need a team of drs to look after you.

    In the beginning my flare ups lasted upto around 6 weeks before it subsided before my team helped get me on the right meds.

    You also need a gp that likes to look after chronic illness this is half the battle! The knee pain can be sorted by a rheumatologist.

    In terms of pain relief if co-codamol upsets your stomach ask for tramadol instead its the synthetic version and is kinder on your stomach but remember to eat first. There are holistic ways of pain management too as unfortunately Bechets can be very painful.

    My latest trial has been floatation tanks for pain relief as their are studies proving its effectiveness and i am getting longer timeframes without pain.

    Good luck and keep going!

  • Hey thank you for responding so quickly. I'm feeling lost as all my symptoms have been separat for so long and this is he first time they came together.

    I have an amazing gp now who saw me and had an idea straight away what it was. He's been amazing. But he's old fashioned and helps with the practica stuff but I feel so lost emotionally and stressed about what the future holds.

    I am seeing an optomlogist consultant and she is brillant to. I only have sight in one eye since birth and am terrified of losing my sight.

    I have been refered to the rheumatology so just waiting on that.

    Bed rest is near impossible with a 1 year old lol 😂 The pain has nearly gone as in last week it was a 9/10 and now it's maybe a 3/10 but i just don't feel normal.

    I take 30mg once a day for 7 days and am on steroids eye drops every 2 hours.

    I had no idea this disease even existed and within 3 weeks it's taken over my life.

    Sorry for the rant I just can't believe it still.

    Xx

  • I know how you must be feeling. I also have had Behcet's for over 40 years and flare ups can last from a few weeks to months. The key is rest if you can. Also I had a lot of bone pain I was tested for vitamin D and found I was very deficient since having a high dosage now take every other day bone pain gone. This is what causes rickets. Very easy blood test ask to have it done with dr. Also try and use a totally natural toothpaste as mouth washes toothpaste have lots of things in them that can irritate the mouth. I very rarely get ulcers any more used to have 25/30 any one go. Also I find coffee makes my inflammation worse. I am getting intolerant to milk. Keep a diary of what you eat as this can have an effect on how you are feeling. All the best hope things settle down soon xx

  • Thank you for your message.

    I have ulsers al over my tongue right now can just about drink water without them hurting.

    The pain is in my shins this is just the last of the erythema nodosum.

    I'm so scared of losing my sight. It took me years to learn to drive and only just passed my test got my car and now I have blurred vision and can't drive.

    Just feeling shocked still 😞

  • Moralinizi yüksek tutun. Behçet hastalığının konuk olmadığını unutmamak önemlidir. Bunun kısa koridorlarda geri gelip gizemli bir hastalık olduğunu bilmeliyiz. Geçmişinizde yalnız değilsiniz.

  • Dairy causes my eyes to flare..ugh..

    Tea xnthar gum also cause problems.

    Drink soda water.. have an alkaline diet.

    I heard recently that blood acidity is controlled by enzymes in the blood.

    Enzymes can work slowly or fast. They can also be turned on or off.

    This has led me to wonder if bh is in fact a problem with enzymes...in the blood.

    This led me to wonder if it would be possible to borrow enzymes from meat.

    I don't eat much meat.

    So thee days running I had a rare steak.

    At the time I had very bad joint pains and inflamed fingers where I had worked hard.

    Within hours of the first steak the pain was gone and the inflammation down.

    This may explain why the people on Paleo diets say they have less symptoms.

    Also bh is also almost unheard of in America ..which could be explained by the culture which eats more meat.

    We may in the future be able to take substances which may replace the enzymes..?

    If this is so....

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