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.

19 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 Melbourne-Girl,

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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Hi Penelope-Mary

Which of the treatments got rid of psoriasis? My son has mod-severe and is a young man who is very embarrassed by it. He has been treated by several dermatologists with an intense heat treatment and also high levels of salt I’m baths, sun and the ocean. He has been given creams that have so far not worked. My psoriasis is only mild so have a lot of other things that I am working on first. It makes me happy that there may be some help for my son in this area.?He also has multiple allergies and hot and cold urticaria as do I. The wonderful genetics we pass on to our children. Thank you to anyone who can help even if it’s a small improvement

🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀the 4 leaf clover is my Celtic wish to you all to improve and enjoy life better,

Suzee Melbourne Girl

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Hi! Our daughter is on a biologic called Stelara. It’s a subcutaneous injection- tiny amount so she can self administer, 3 monthly. However to have it approved by the government public benefit scheme, she had to have tried 2 others ( one was methotrexate and I forget the other) and for them to have been ineffective.

It’s been a long road for her.

As always, it’s finding the right specialist, one who will really take their plight seriously.

🤞🏼🤞🏼🤞🏼🤞🏼for your son, it’s hard for us with our autoimmune disorders and achingly so to see our offspring suffer...having passed on the genes. My husband had milder psoriasis and it clears when he’s sailing; we have another daughter who has ‘my’ systemic lupus 🙄😣.

Gosh I feel for you with hot and cold urticaria too. I’ve suffered with it in the past and it nearly demented me.

All strength to you.

🌷💐🌷

PM

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Thanks Penelope-Mary, it is interesting that your husbands mild psoriasis clears up when he goes sailing (? Salt air). Does he swim in the ocean when he usually goes sailing?

I have had to cancel the skin specialist 6 times & re-schedule as I had a serious traumatic fall down my stairs & broke 3 ribs & then 3 days later while still feeling sore & sorry for myself my mother passed away which was totally unexpected so I have had to council my daughter who was close to suicide when this happened,

All the best

Melbourne-Girl xx

🍀🍀🍀🍀🍀🍀

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Oh Suzee l am so sorry for you and your family and to worry about your daughter in that way is about as difficult as it gets.

With spring 🌸 here and longer days I 🙏🏻 you feel stronger and are healing slowly. And that you eventually see the specialist. What a bleak time for you.

Yes to the salt air and sunshine ☀️ on my husbands psoriasis. He swims in the sea when he sails up north, too cold says he, in the bay!

I hope you’re feeling in less pain emotionally and physically when you read this. Such a tough time for you.

One day at a time 🐾🐾🌷💐🌷🐢🐢

Warmest wishes

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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Penelope Mary hope that you are managing to keep your symptoms under control.

Probably like many on this site with multiple problems it is difficult for me to write an email with multiple Drs appointments and feeling so unwell with much of the pain.

One of the arthritis’s I have is osteoporosis arthritis & it is particularly bad in feet & hands

(Maybe else where too but putting it down to fibromyalgia or other problems I have.

Are you or anyone else on this site able to tell me what to do when the arthritis becomes so painful in your hands, finger & wrists (also elbow joints) what to do in terms of mobility as I have to keep resting to write this & it & hands to painful to do anything. Should I try & push through pain or keep my arms & hands resting on pillows when I have such a bad flare up?

I am going to Rheumos & get different advice from each lot. I am on pain killers & the pain doesn’t settle when it is this bad. I have some deformity in my fingers & wrists which appear to be associated. I don’t know if I should try metheltrexate & some of associated drugs I could not tolerate 20 years ago.

Will it make it worse trying to do things as normal as possible st such times? Affected areas very weak as well with flares. My mother just passed away unexpectedly so am not sure if added stress making it worse. Any helpful suggestions welcome

With thanks

Melbourne Girl

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Hello Suzee ( hope you don’t mind as you signed off once 😉.... it’s quicker!)

I just saw your post, I replied to one you wrote Sunday 8/10 and found this whilst scrolling through.

Re arthritis: as I type I’m tapping on more wrong letters than right, I understand!

My hands are the worst affected and I cannot make a fist plus my thumbs dislocate, piano playing triggers this.

What to do: I’ve no answers 🙄. I am on all sorts of lupus drugs, Leflunomide, prednisolone, hydroxychloroquine, and anti inflammatories such as Celebrex which helps but as you know, you need to take it regularly so your INR is stable ( you are on Warfarin I believe?).

Plus morphine patches and recently I have commenced Rituximab infusions to try and slow the inevitable progress.

None of that helps you without a rheumatologist on side though but maybe you could suggest a new drug next time you see 👨🏼‍⚕️. I know you said you have reacted badly to some medication. 😬

So I am not sure I’ve been of any help!

Just don’t get yourself into a state of despair 😩.

Keep going, seek help, you’re right to post here, it helps just to share it if nothing else.

🌸🌸🌸🌸🌸🌷💐🌷🌸🌸🌸🌸

I’m constantly massaging creams into my hands probably as a massage more than moisturising but that helps with stiffness.

Warmest wishes

Penelope-Mary

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Penelope-Mary

I think I know what you mean by iyd quicker etc. you mean is it OK to call me Suzee, it sure is.

Is your whole name Penelope/Mary or is there a name you get called that is shorter?

Some writers on the post also use M.G.

Best wishes

Melbourne-Girl 😀

🍀🍀🍀🍀🍀

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Thanks Penelope,

What do you mean by I signed off once as I am not sure. Your helpful suggestion re the hand cream is something that I will try so thanks for that.

My latest Rheumo is on side, although very busy as she is a Prof in charge or Rheumatology at one of the largest hospitals in Melbourne.

At my next appointment I want to talk to her about some of the drugs I had problems with years ago such as Plaquenil, Methyltreate etc as over time I am getting worse and maybe I can try these drugs one at a time to see if it helps & I can tolerate it. Unfortunately prednisone gives me Cushing’s Syndrome.

I will try & keep my appointment with her next time as some of the time I am too unwell to attend appointments. I will also be bringing up the possibility of a Mast Cell disorder being involved as I have had allergies since I was a young girl, getting worse over time to the point of anaphylaxis. I had no idea that could be involved until I read some of the helpful posts discussed on this site. One of the drugs that I am taking (as are you) is Celebrex.

I will be turning my phone off soon as I am having a bad flare up of my symptoms at the moment.

Was it you who also lived in Melbourne?

Thank you for your helpful advice, I appreciate it. I learn so much from fellow sufferers who post.

My best wishes always

Melbourne-Girl

🍀🍀🍀🍀🍀🍀

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Yes MG I do live in Melbourne!

I’d wondered if I should suggest that you try reintroducing the drugs you couldn’t tolerate before, as you are deteriorating significantly it might well be worthwhile.

I would.

I should have remembered you had Cushings 🤗. No more pred for you.

Aren’t all the good rheumatologists busy; it’s a sign they are good 👌🏼.!! Stick with her.

Absolutely agree with you re the Mast Cell studies; this would prove beneficial.

I’m replying whilst it’s on my screen but I agree, turn off your devices whilst you’re in a flare.

Oh and 😊 I did just mean that you had finished a post with, I guess your name. 🌸🌸.

In answer, I DO have a family nickname : Mémé, since the first French grandchild was born. I hasten to add I’m a young grand-mère 😅.

Rest up. Hope you are feeling better soon.

PM

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That is a beautiful name Meme (not clear headed enough to find out how you get the accents in French words, how do you? I am a bit of a Francophile myself.

I am gradually feeling better Meme,

It might be nice to meet for a coffee sometime,

My best always

Suzee

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