I saw my rheumatologist yesterday, he has said that my Lupus is mild and through experience, he thinks it should stay that way, he has prescribed me some Naproxen tablets and given me information on Hydroxychloroquine which I can have at my appointment with the nurses next month if I wish. The bad news is due to my symptoms the rheumatologist is not convinced it is only Lupus and wants to keep an open mind, he thinks there is perhaps something else going on and is thinking 'mixed connective tissue disease'. He wants me to find a good, supportive GP who I see regularly to record symptoms as when I see someone different each time, different symptoms are not being put together or linked.
Do others here suffer from throat and ear problems, mine are not bad, just irritating, also indigestion too, my rheumatologist tells me these symptoms are not generally associated with Lupus so thinks that there could be more going on.
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We offer a free information pack which contains guides, factsheets, a list of helplines and a list of LUPUS UK contacts who you can chat with over the telephone. To download or request a pack, please click here: lupusuk.org.uk/request-info...
Mixed connective tissue disease (MCTD) is an autoimmune disease that is considered to be a cousin of lupus. We published a factsheet on ‘LUPUS: and Mixed Connective Tissue Disease’ which discusses symptoms, complications and the treatments available for MCTD. To read this factsheet, please click here: lupusuk.org.uk/wp-content/u...
We have a LUPUS UK ‘Lupus Progress Diary’ which is designed to help keep an ongoing record of your condition and to allow your doctor to monitor your health between appointments. You can download a free copy or purchase a hard copy for £1 here: lupusuk.org.uk/lupus-progre...
To read our blog article on ‘getting the most from your medical appointments’, click here: lupusuk.org.uk/getting-the-...
We published a factsheet on LUPUS: The Mouth, Nose and Eyes which I hope you will find helpful: lupusuk.org.uk/wp-content/u...
It is important to bear in mind that lupus presents differently in everybody therefore, it is unlikely for two people to share the exact same experience.
What kind of throat and ear problems? I have chronic hoarseness and often a pain in the area of my right eustacian tube? Curious which antibodies you have? I have anti-RNP which is usually associated with MCTD but my Rheumy says I have lupus and sjorgrens due to symptoms. Thanks Nan
Thank you for your reply. It is difficult to explain really, my ears block and I struggle to hear, this can last a few days and then clear again, it kind of feels like a swelling or thickening, this is similar to my throat, it isn't raw and I don't have problems swallowing, it just feels thick and restricted. I generally get the ear problems at the same time as the discomfort in my throat.
I tested positive for dsDNA and ANA I believe, but that is all I really know, I never really feel like I get the full story.
I too have MCTD and my symtoms have all been very different, it's taken six years to get diagnosed because of the difference in my illnesses, I think I have now found a good rheumy doc who is taking me seriously. It affected my liver, head, lungs and at the moment my stomach which she said are all linked, I'm waiting for scans on my stomach. I tend to lose a lot of weight every time I have a flare which have resulted on me going steroids for a year, high dose then tapering very slowly. Every time I come off another flare happens, I'm on hydroxy but because I'm being sick a lot I'm not doing too well on it but determined to stick it out as I do not want steroids again. It seems to be travelling around all my organs which is worrying, she thinks my stomach is inflamed this time. It really knocks me for six, I'm so tired but the sickness is stressing me out. I have anti sickness and ranatide which I've not to take too many times and can't take them with the hydroxy. I can't win. So I think you can have any illness with MCTD. Hope you feel better today x
Oh Lizard28, I am so sorry to hear this, compared to you I am fighting fit and have nothing to complaint about. I do hope that things start to improve for you soon and you can find a treatment plan that works. x
I have mixed connected tissue disease and new at this. My hands, wrist, knees, shoulder, feet hurt, I have a lot of bloating problems, not sure if it's due to digestion, My hair falls out more than normal when I wash it. I keep ear and sinus infections!! I think I'm falling apart. Hope u feel better soon... hugs
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Mixed connective tissue disease
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