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Discussion Starter · #1 ·
Hi all,

Thought I'd introduce myself. I'm Ruth and I've just been diagnosed with lupus, after suffering with a number of different symptoms for several years. However it's kinda been difficult to diagnose as I've also got severe Crohns disease, which is thought to be another auto immune condition (diagnosed 19 years ago in childhood), osteoporosis (thought to be because of steroids during childhood and teen years), sacroilitis, anaemia and B12 deficiency, asthma, ezcema and severe allergies/anaphylaxis :rolleyes:

Whilst I was living in France, I had all sorts of tests done following one of my blood tests being "dodgy" lol - think it was the ANA one? (sorry, I'm not very clued up on all this yet). They did various MRI scans etc, as they were querying whether I had MS or not - phew the scans came back clear! Saw an immunologist who wasn't quite sure, but said she didn't think there was enough evidence to say I had lupus - so I thought it had been ruled out.

Then I moved back to england and saw a rheumatologist who ran all sorts of tests and wrote down my increasingly impressive list of symptoms (I really felt like a hypochondiac) and then she rang me last week to say I do have lupus :sad:

I'm a little unsure whether it could be drug-induced as I'm currently receiving infliximab infusions for my crohn's - have been having them for 3 1/2 years now, and I have heard that sometimes it can cause lupus symptoms, and in such cases, often the treatment is stopped. I did ask my rheumatologist, but she said she didn't think it was the case for me (don't know why, but I was too stunned to probe her). However, I'm most worried incase they decide to stop my crohn's treatment as it has been the only thing that has helped me after all these years -and I've alreay had 6 major small bowel operations, and don't have very much left. I have been warned that if I need more surgery, I might end up on TPN (total parental nutrition) permanently, and so I expect you can understand how I'm really keen to keep the crohn's under control! My rheumatologist said she is going to discuss it all with my gastro consultant, but I hope I have a say over it too!

I don't quite know what to think at the mo - my brain is even more muddled than normal! lol. To be honest, I don't think I have quite got over the shock of it all yet. I know I have a lot of learning to do! Hopefully you lovely peeps can help, as I expect some of you are dab-hands at it all by now.

Anyway, really sorry to write such a long and boring post!

I hope you are all as well as you can be right now :)

Hugs, Ruth x
 

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Welcome to the site Ruth.

It takes time to come to terms with a Lupus diagnosis. Your emotions will be all over the place. In your case it is probably even more so since you already have so many other things you are dealing with. Feel free to ask any questions you have, we are more than willing to help if we can.

I wish you luck with your medication dilemma.

Take care,
Lazylegs
 

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Hi Ruth and welcome to the site. It is a great place to find information and support. A lupus diagnosis brings a rollercoaster of emotions, it takes a while to adjust. As Lazylegs said I expect it is harder for you as you already have other health problems. I hope you can get your meds sorted. Your rheumy sounds nice.

Join us in chat sometime!

Deb x
 

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Discussion Starter · #4 ·
Hello,

Many thanks for the warm welcome. :)

I'm sure soon I will have lots of questions to ask, but they are all a bit muddled, but once I've un-muddled them, I'll shall post again! I will be very appreciative of any help/advice you can give

My rheumy mentioned some medication but didn't tell me what it was called or anything yet - I think it's a matter of waiting now, to see what happens with my crohn's treatment etc. I should at least know a bit more by the end of next week, when my gastro consultant returns from holiday. My next infusion treatment is next thursday, but I have been told that it might have to be put on hold until a decision is made.

Maybe I'll join you in chat sometime. Would be good to chat.

Take care and thanks again,

Ruth X
 
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