I was diagnosed about 2 years ago after 10 years of suffering ulcers headache joint pain Tia. I just had a baby and I'm flaring badly joints are agony but they say my bloods are fine also ulcers up & down my hand are dry and bleeding with what they say is ezema also get it somethimes on my feet also ulcers on my legs. Prob is my bloods keep coming back ok I'm wondering has this ever happened to anyone else? I take prednisolone imuran and colchicine so was wondering if this could affect the result as i feel like a fraud was diagnosed by collective symptoms and a positive pathergy test. Any opinions appreciated thanks xx
Bit random but does this happen to anybody else? - Behçet's UK
Hello, lovely, this is a common finding in BD and it is very frustrating and the majority have felt as you do now. Sometimes you just know that when you see a medic because you feel like poo, your bloods will come back normal, or your chest xray will show nothing abnormal, or there will be no swelling to your joints on scan.
Welcome to the world of Behcets ;-/
Had to answer as i had my last two babies in the last 2 years. I can say my flares are exactly like yours. I flared with all babies straight after delivery. My last baby is 14 months now and i am still in the same flare. I get the excema on my hands and feet it starts with tiny white blisters that pop and go red then itch and peel. It dries cracks and bleeds. My feet are in a awful mess. I have all your other symptoms and more. Each time i have been told it is fairly common for BD to flare after pregnancy. I am on lots of meds my main being Humira prednisolone leflunomide and amitriptyline dapsone and many more. Mty steroids are at 60mgs aswell but nothing is helping. I am waiting to see Proff Moots on 21st May so will let you know what happens there. Things are so bad i cant take care of my girls right now i am wiped out on morphine most of the time and my joints are so bad i can hardly move. It is good to speak to someone who has just had a baby and understands. If you are on facebook and wouldime to message on there my name is Christine Millard from Barrow in furness if you want to search i will add you. It will be nice to have a chat. Take care hunni and hope to chat soon. My email is email@example.com if you dont do facebook.
Sorry forgot to say bloods font always show what is going on. I can be swollen everywhere and not be able to move and my bloods can be ok. I think ghis is common with alot of us so dont feel like a fraud hunni. I took ages to be diagnosed to because my bloods and tbings wete normal and drs would make me feel its all in my head. I was so glad of a diagnosis after being made to feel like a fraud. You are not alone x x x
Hi Poshcat hun, (love the name by the way !)
Sweetie, it sounds to me like you are having a flare.
There is often much confusion about what a flare actually is and people (often newly diagnosed ) are waiting for this specific 'all bells and whistles' thing that they are never sure is actually happening.
A flare is when YOUR symptoms start to go a bit mad and need extra help in controlling them. Everyone of us is different and so are our list of symptoms and although we share many of them we don't get them all at the same time as the others go mad either. Basically it can mean any of the things you suffer from starting to get out of control and cause you grief and it usual involves several of the symptoms you suffer from but not necessarily all of them. Some symptoms may be constant anyway such as the joint pain as an example. Some just raise their ugly heads from time to time but you will get used to which ones you have and how they usually affect you. When you have a flare it is when these symptoms start to behave out of character and you will recognise this and need to find another way of getting them back under control again.
Does all this make some sort of sense and make it all a bit clearer now hun ?
I think you are having a flare of your symptoms hun. Mwah !
Hope you feel better soon .
I've had the severe pompholyx eczema on the whole palm of one hand & fingers of both hands, and where it breaks out in little blisters that itch, and where it cracks & bleeds...very painful & distressing. The Dermatologist prescribed for me the strongest steroid ointment that you can get in Australia that needs to be bought from a compounding pharmacy & at great expense.
I could not bring myself to fill the script. Anyway a surprising thing happened. I got really ill before Christmas after having some radioactive scans. Basically I developed a peritonitis-like swollen abdomen & was treated (by GP then Gastroenterologist) with a short course of Flagyl ughh followed by a short course of Doxycycline....ughh...I say ughh because taking these made me feel really ill. HOWEVER to my surprise I credit the Doxycyline (but it may have been the effect of both antibiotics) with almost completely eradicating the severe eczema. My palm is smooth. There's still a tiny bit of dry skin on one finger.
I've spoken to a pharmacist about this, and what is interesting is that this is the combo of antibiotics that they use to treat Lyme Borrelia & Treponema denticola...Spirochaetes...so it could be a clue to part of my problem. I hope to explore this in greater depth this month when I see a Lyme literate Dr soon. It's now May & my hand is still good...I do live in fear of the eczema coming back.
Of course you couldn't take Doxycycline/Tetracyclines if you are breastfeeding. Anyway I thought I'd just let people know, as I know how persistent & painful the severe eczema can be.
My inflammatory markers like CRP & ESR are never very raised, even though I can be having a severe rheumatic flare.
Sorry, poshcat... not Tia! My brain has gone to mush today!!!
Hi poshcat, hi & letting you know my daughters bloods are nearly always normal. At times have been slightly raised but not crazy as I expected them to be given her symptoms. All the best & I hope you feel better soon. The key is good rest & a ripper of a specialist. X
OO I've never heard of pompholyx........... but think I have it. My left palm itches like mad and then develop into blisters etc and if I carry on scratching and they burst it leaves a patch of dry skin. I have found something that seems to work on the dry patches like a miracle but doesn't get rid of the underlying itchy bit. Its called Aloe Propolis Creme made by Forever Living Products. I'm sure there will be local suppliers usually sole traders in whatever location folk live in but Google Forever Living and it will come up. It's not cheap about £15.00 a tube but you only need a small amount.
Let me know.
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