LUPUS UK
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“Melbourne Girl”

“Melbourne Girl”

Welcome fellow sufferers! I first

noticed undiagnosed connective tissue disorder affecting my whole body 20 years ago, sometimes unable to get out of bed for 2 - 3 months. Cortisone injections helped inflammation & swelling but could not tolerate methyltrexate and the other drugs I was given . I was on such high doses of oral cortisone that I developed Cushing Syndtome and was slowly taken off that and was just on analgaesia. It has slowly worsened over time & a few areas of my body are never in remission eg: TMJ joints and intercostal cartlege.Now I also have inflammatory Osteoporosis-Arthritis particularly of my wrists, hands & fingers and my feet. I also have a mild psoriasis which is slowly getting worse to add to the list. When I am really bad I get ulcers+++ both in my mouth and in my genital area.

My hips and intra trovhentrric area are often swollen, inflamed and filled with fluid. I go as long as I can in between cortisone injections.

Following a fall from 2 stories high my whole body was affected and I was a year in bed and had 6 major surgeries and have a stent in my groin as I had clotting right throughout my body so am on warfarin for life. My teeth started causing serious problems and I had been compulsively been eating ice for 2 years. Most Drs & Nurses are unaware that a compulsion for ice, clay or sand means you have ferritin and iron levels and haemaglobin levels that are rock bottom.!my daughter found this out by looking it up on the internet and so asked the Dr for tests ASAP then had iron infusions. I have had 2 lots of infusions in 10 months and can no longer take nurafin or aspirin again. My recent test was OK. My teeth have suffered badly and are gradually becoming loose and my two middle top ones have fallen completely out! I had to have titanium implants & grafts over a 9 month period.’This is a protracted and expensive surgeryI know have mild psoriasis which is gradually getting worse.

Won’t it be nice when these things can be treated properly and then the disease process gradually reversed as it is with some conditions already!

Most Rheumos I have seen are useless in the face of this as they can’t just do a blood test or scan and say you have such & such!

All the best to my fellow sufferers who sometimes get labeled with a disease out of dispair only to have it changed or left as the Dr is not 100% sure.

9 Replies
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Hi there. Oh yes I have been there too with the changing diagnosis and failure of doctors to join up the dots. Many here have so you are not alone at all with the undifferentiated label. My diagnosis’s have gone from seronegative RA to RA with Sjögren’s and Raynaud’s to small fibre neuropathy with RA to non erosive polyarthritis unspecified to primary Sjögren’s with small fibre and autonomic neuropathy. The latter is where I’m at now plus Hashimoto’s, dysmotility and essential hypertension - I am challenging the last one as I think it’s secondary to renal involvement and autonomic dysfunction rather than “essential”🤷🏼‍♀️🙄

I also believe I have some kind of EDS/ hypermobility Syndrome and MCAD but these have yet to be confirmed.

The one thing that occurs to me, just from the symptoms you describe and other posts I’ve read on here over the years, is that oral and genital ulcers are most closely associated with Behcets - a rare type of Vasculitis which often doesn’t show up in the blood. I’m not medically trained so I only have gathered this from posts here but here is a link medicinenet.com/behcets_syn... . It may be worth searching for posts by other members of this community called Keyes and Gloomy Eeyore to learn more from those with Behcets here and see if you feel this might be a good fit for you rather than or as well as UCTD (undifferentiated Connective Tissue Disease).

Take care and keep posting! X

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Twitchytoes thanks for your helpful email. I am new to this and when I try and leave the site a box comes up saying if I press OK I will lose everything that I have written or press cancel to keep the information. Can you tell me how to navigate this please.

Also add restless legs & feet to my symptoms

Many thanks

Melbourne Girl

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Hi Noseelg,

This message comes up to save you from losing any comments or posts you may be working on which would get lost if you navigated away from the page. The box shouldn't come up if you don't have any text in a comment/post box which has not yet been published.

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If you are using the App then things have a tendency to get lost and you have to save manually all the time. So it’s a case of write, edit and send or in my case I find I have to write and send and come back and edit. Or you can use the main server rather than the HU app. I lose things all the time on the App and it drives me crazy I must say! It’s a case of saving all the time in case you lose it. I find that i can’t edit easily at all.

Often I use the main server to write posts rather than the App now for this reason. I don’t know why it happens. I’m an Apple iPhone/ iPad user so I’ve assumed it’s something to do with this? X

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Thanks Twitchytoes, here’s hoping 😊

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Me too Twitchy 😙. Replying through email never fails.

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Hello! I am a Melbourne girl with sle dx 16 years ago, have arthritis and APS so on warfarin...I feel I should know you 😉😚!

You’ve had quite a journey and what a pity you cannot, like so many here including ‘twitchy’, tolerate steroid sparing medications.

I’m so glad you have posted, it’s the most wonderful place for a rant and to feel better knowing you’re not the only one frustrated, confused and upset.

I have a daughter who has been successfully treated for psoriasis with a new ‘biologic’.

She needed to fail other treatments such as methotrexate in order to qualify but it has transformed her life. A dermatologist was the hero in her case.

It’s so annoying being a complex patient, so many here are the same.

Keep posting!

Cheers

Penelope-Mary

🌼🌼🌼🌼

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Thank you Penelope-Mary I am booked in to see a skin specialist in a couple of weeks so may bring it up xx 😊

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Yes do bring up the psoriasis to the skin specialist. I am currently applying a chemotherapy cream to a squamous cell carcinoma on my upper lip, in the hope of avoiding surgery...seems we are 🐾🐾...although I do hope your reason to be seen by a skin specialist is less sinister. At least, I have noticed when reading, we are the world leaders in skin cancers; hardly surprising with our no doubt similar childhoods of playing under the hot summer sun.

Let us know here, how you are getting along.

Cheers!

P-M

🐬

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