Hi me again,Hope you're all doing as well as can be.
So little update I managed to see a lovely rheumatologist in Aberaeron this week who was very thorough but unfortunately no answers still (4 years now of investigating) however he has given me hope that there are other treatments we can try aside from hydroxychloroquine which didn't work for me.
He also mentioned behcets disease ? Which I'm not 100% sure that would be correct for me given that I have a lot more symptoms and none of the usual leg sores etc, has anyone been diagnosed with behcets and lupus ? Or misdiagnosed with behcets which turned out to be lupus ?
Thanks in advance for reading this and any responses 💕
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Haylz2109
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Hi Haylz, yes I have been diagnosed with Lupus in 2009 and Bechets in 2011. Some Rheumatologists say it’s one, others will say the other or some both. I have been told since I have neither just Fibromyalgia or UCTD, even hypochondria . Currently my Rheumatologist says I definitely have Bechets but he us not ruling out Lupus too.
Thank you for that Cecily 💗 it's so hard isn't it ? First I was diagnosed with functional neurological disorder, then I was diagnosed with fibromyalgia which has since been dismissed then told its an Uctd along the lines of lupus but no further correct diagnosis. Its really sad that they try to use hypochondria especially when we already struggle to get people to listen or believe us. It's a strange one isn't it ? If you don't mind me asking are you currently on any medication? The rheumatologist has told me there are other medications he's willing to try which is a positive note so I am hopeful I maybe able to come off steroids as currently tappering down.
Hope you're well and thank you again for taking the time to respond 💕 xxx
The hypochondria one came as the Rheumatologist in question raised my Hydroxychloroquine to 600 mg and I developed macular odema. I had to come off it for 2 years for the toxicity to reduce and now can only take the lower dose of 200 mg. Instead of apologising he just insulted ne then tried to discharge me. My GP thankfully refused to accept that and I was sent to yet another Rheumatologist who said definitely not Fibro but UCTD.
I take a massive amount if medication sadly. I have high BP, Underactive thyroid, pernicious anaemia , hemiplegic migraine, arthritis,dry eyes,very skin, oral , nasal and genital sores, asthma , pudendal nerve entrapment and widespread pain. The most effective drugs are the Hydroxychloroquine and Colchicine. Colchicine was difficult to get used to as it is very toxic and I was in the loo a lot initially but my Rheumatologist encouraged me to persevere and I am so pleased that I did. I have a bout of genital sores currently but they are my first in five months whereas without the colchicine I was getting them monthly and they are so very painful. Xxx
That must of been so stressful to go through I am sorry to hear that happened to you and glad that the gp didn't just accept that and sent you to someone who helped. Thank you for all that information, it is so hard when you have so many symptoms too isn't it ? Unfortunately for me the hydroxychloroquine didn't work and currently only thing that does is steroids. I have also been prescribed colchicine however they have it to me whilst on steroids so I wasn't able to confirm if it helped or if it was the steroids so they do want me to trial it again without the steroids which I'm happy to do I'm just concerned as currently I'm only on 10mg steroids and all my symptoms are coming back in specifically my migraines, fatigue, joint pain and mouth ulcers really not looking forward to going down more or coming off altogether. I wasn't aware of the toxicity with the colchicine so that is something for me to think of going forward. The new rheumatologist I saw has mentioned also trying a new medication beginning with A I can't remember the name now unfortunately but I am hopeful that something will help been as my bloods still don't show anything other than super high liver enzymes which makes it more difficult to get a diagnosis.
Thank you again for taking the time to respond 💕 xxx
Azathioprine I suspect? An immunosuppressant medication. My Rheumatologist says if I keep getting flares he wants to try that with me too. Please let me know how you get on and good luck with it xxx
Quite possibly, unfortunately it'll be a while until I get onto it as they want to do further blood tests and scans and then try the colchicine without steroids prior to even thinking about the other medication options but I will keep you updated. I just want to get out of this seemingly never ending flare of symptoms. Thank you 💕 xxx
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