Undifferentiated Connective Tissue Disease, and I think The have Lupus!

[NixandLux]

Hi everyone,

I am new on here, I am 50 years young, and was diagnosed with Undifferentiated Connective Tissue Disease 2 years ago. I was like most people thinking that I was going mad, had become a hypochondriac, I own a clinic in Melbourne Australia and have 10 GP's at my side, but now things are changing, I am developing rashes, had a butterfly rash on my face after sun exposure, rash on my chest that flares then settles, now it is spreading. I also had a hip replacement in 2009, it was a metal on metal and some GP's believe I may be poisoned from metallosis. I am not sure. I wish I could have a definite diagnosis! I was put on Plaquenil for the UCTD 2 years ago, they I feel helped for quite awhile, now my GP has ceased the Plaquenil because she believes it has caused the rashes, which it has been known to do, but, it has been a few months now and the rashes have not gone, and I am starting to head downhill again! How do I get my GP to put me back on the Plaquenil? What do I have to do to get a diagnosis of Lupus? I have seen Rheumatologist's, Immunologists, My symptoms are quite long, mouth and nose ulcers, rashes, pain, face rash, vague memory, fatigue, depression, dizziness, dry eyes, headaches, joint pain, knees, hips, ankles, shoulders, hands are okay but get numb and tingling sensation quite often in them. I am at my wits end!

Would love to hear from anyone who has had similar diagnosis. My last ANA test was positive but low 1:80.

Cheers

Sharon

[Kelfreem]

It may be worth posting this on the lupus forum for more advice. I have the same diagnosis as you and they also think it is lupus, but won't fully diagnose. There are a few of us on the lupus forum. It would be worth trying to find a specialist who deals specifically with lupus in your area, thats what I did and I'm on the treatment for lupus now, even though I haven't been fully diagnosed.

[NixandLux in reply to Kelfreem]

Hi Kelfreem,

Thank you for your reply Sorry, I thought I had put it on the Lupus thread as well, just a newbie.

I am glad you have at least found more answers with a Lupus specialist. Sometimes I think I am put in the too hard basket! I have worked hard all my life, 10 to 15 hour days, 7 days a week, but now I am a mere shell of myself and I am losing hope of ever getting my zing back.

Are you in Australia?

Cheers

Sharon

[Kelfreem in reply to NixandLux]

I know how you feel, isn't it awful, I am so disabled now and I'm only 31. The lupus specialist I see is in the London lupus centre. I live in Wales in the UK so it's a bit of a trek for me every 3 months to see my doctor and I have to pay, but it's worth it. I have never got back to how I used to be, but I think I'm easier on myself now and realise I can't do everything any more, I now learn to be happy with the progress and little things I can do. Most importantly I've learned how to pace myself, I've also cut my hours down to 3 days a week, which is still a struggle, but I manage and it gets me out the house. I hope you get some answers soon xx

[NixandLux]

Hi Kelfreem,

My heart goes out to you! I hope that one day there will be a cure for this "great imitator" as it is known here. I was chatting to one of my colleagues the other day and I said I just want to know what this truly is, so I can deal with it. He replied that it is true, people need a label for their disease, and when there is not one, it is hard to deal with. I wish you all the best.

Cheers

Sharon

[Penelope-Mary]

Hi Sharon!

Yes the 'great imitator ' it is. And how annoying it is that symptoms randomly move around. By the time of your appointment there can be nothing to 'show'. Just ' well I was feeling...I had awful pain....'

Definitive and sensitive blood testing will be available ONE DAY 😢

PM

🐚🐬🐚

[NixandLux]

Hi Penelope-Mary,

So true! One day. 😁

[Joanmbb]

Placqunil can have a toxic effect on eye sight.

Please checkout the side effects to this medication before continuing with it.

[NixandLux]

Hi Joanmbb,

Yes, you are right. I have CT scans of eyes every six months, also eye test regularly, I have been told that Plaquenil can only be taken for 7 years max. A bit frightening if there is not an alternative.....

[Discontent]

[e-mail] I too have SLE(Lupus) now 34 years. Your symptons are exactly what I was going through those many years ago. Medicine after medicicne, chemo treatment (short term for nephritis) back then, being suggested I was a 51-50 (crazy), but to their discovery all was founded to be true to diagnosis. Please try to remember that these ailments will go away, lessen each day until you feel that normal you come back. Try not to let your mind play tricks on you, as you do not feel good. Remember - YOU ARE LOVED BY MANY AND NEEDED IN THEIR LIFE, and you must keep that in front of everything. I promise you, you will began to feel better each day ,as yesterday pain has gone away , and today the pain is diminishing. I have been there and felt that, now I am so much better. Much LOVE

[NixandLux in reply to Discontent]

Hi Discontent,

thank you, your message has left me feeling much better. It is very hard to remember that there are others out there suffering and that we are all not alone. I am so glad I have come across this forum. If anything it gives one hope.

Best wishes to you too, if you ever need someone to chat to, I am here for you too.

Cheers

Sharon

[Discontent in reply to NixandLux]

Discontent122510Agmail.com: Well,thank you for the comment. I hope that you are feeling better, and keep striving for even better health. I am struggling with this infected finger, and pain is NOW so consistent, it drives me into a state of anger. (Why?) Where did this come from, and please will it ever heal? Surgery to put skin over the tip is due shortly. Pain factor? Who knows, but if it will stop this infection I am willing. Wow, the unknown factors are ever present, but we must strive to get better anyway we can. Much love to you

[AMDP]

Hi Sharon, I also have Undifferentiated Mixed Connective Tissue Disease, I call it pick and mix as I seem to have lots of bits of other diseases such as Scleroderma and Erythromelalgia. It's all such fun. Not.

If your GP won't put you back on the meds which have helped you, change your GP. With these rare diseases it is the patient who knows best as GPs have often never even heard of all these conditions. You need to be proactive in your own condition and do what is best for you. There are a few videos on YouTube and there is all sorts of stuff on the internet, some of which you need to take with a pinch of salt of course.

I am on some heavy duty immunosuppressants which keep me going, more or less although I still have some bad flares.

I wish you well Sharon, be strong.

Ax

[NixandLux in reply to AMDP]

Hi A,

Thankyou for the support, it really warms the heart! I have decided to put myself back on Plaquenil, I have plenty of scripts, it will last me until I see my Immunologist in November, I know she will be horrified when I tell her what has happened. Unfortunately my GP thinks she is doing the right thing, and she actually believes that I am being poisoned by my metal on metal hip replacement, that I had 7 years ago! I do think it was worth investigating, but I think we know our own bodies, we know when something works for us, it has just become a "too hard basket" problem and I feel as though she has almost given up on me. This crappy disease, and I mean all the classes of these diseases, they are chronic diseases that unless you have it, you just cannot fathom the illness. My heart goes out to everyone that suffers on a daily basis. I think the worst part is never knowing what tomorrow will bring.

Take care A, you are a lovely person xxx

[AMDP in reply to NixandLux]

Yes it is vital you get the proper medical support. Tomorrow is often dependent on what you do today. Pacing yourself is really important.

Take care of yourself. Axx

[1sam in reply to NixandLux]

Hi. Can you believe I just joined this site just to talk to you? I understand what you are going thru, you know something is wrong with your body, just don't give up on looking for an answer/diagnosis.

My advice is go see a rheumatologist (young and updated preferably) not a GP ... your symptoms sound very much like mine, I had a huge "flare" last september and I was misdiagnosed with all sorts of viral or bacterial infections, microscopic blood in my urine was the key ... antibody tests were inconclusive, but together with the kidney biopsy and all my symptoms finally I was told it is Lupus (SLE). I agree, knowing what you have is much better than not to deal with it.

ANA is not the only important test, is just 1 of many pieces of the puzzle. I hope you can find the right doctor and treatment for you. In my case Plaquenil and corticosteroids were not good, now I'm being changed from Methotrexate to CellCept... but you also need monthly monitoring to check this. Good luck!

More info: m.webmd.com/a-to-z-guides/t...

Tests:

hopkinslupus.org/lupus-tests

[NixandLux in reply to 1sam]

Hi 1Sam,

Wow! That is amazing! And so generous of spirit! I am stunned.

I have seen several Rheumatologists, young and old, the last one was a bit of a problem because I had a Metal on Metal Hip replacement the GP put on the referral that query metal poisoning and the Rheumy pretty much went straight for that, and she came highly recommended! So much going on as I am also menopausal, so on top of the UCTD, menopause, possible metallosis, rashes, unusual cysts, things that have never ever been a problem are all raising their ugly heads!

I have been on Plaquenil now for over a week since GP ceased a few months ago and feel really good, so, I do not know what to think.

I would love to chat to you more about your history, when it started , your journey to where you are now, how long it took to get your diagnosis, I wiuld be very interested

Look forward to chatting 1Sam.

Cheers

Sharon

[1sam in reply to NixandLux]

Hi dear! how are you holding up?

Don't take me for a great expert Basically, one saturday this last September I woke up with fever and some awful pain in my legs, ankles, wrists, fingers; GP ran blood and urine tests, she thought it could be rickettsia (exotic! is not even common in my area!) and put me on antibiotics. Fever went away fast but then rash started (face, legs, etc etc) and I was exhausted all the time. After 3 weeks of little improvement (joint pain) my mom recommended me to visit a rheumatologist, and it took her just 1 physical exam to say "well, your symptoms are very suggestive of lupus, you know?". Crap. She ordered lots of antibodies/blood/urine tests, ultrasound, X-rays, and all the evidence wasn't enough to convince me (who want a lupus diagnosis? Denial). But there was some blood in my urine and lots of joint pain so I went to a nephrologist and then another rheumy. It took a kidney biopsy at the end of January to confirm the lupus diagnosis (and for me to accept it). Thinking back, face rash was always there, but I just thought I had rosy-healthy-cheeks hahaha

Don't give up on you, be your best ally and go see all the doctors you can until you feel well.

You don't deserve waking up in pain every single day of your life.

Hugs!

Samantha

[Hippykar]

Hi Sharon, unfortunately I too have skin symptoms which were exacerbated following spinal surgery with metal implants. I tried hydroxychloroquine but it didn't help too much. I'm still awaiting diagnosis as only have a low positive ANA of 1:40. Had the implants removed. Don't know if this was the cause. I wish you luck. Xx