'It's not lupus' (couldn't resist!), now ?CTD. How do I tell my employers who have bent over backwards for my lupus problems?!

[Petey]

I was given a diagnosis of lupus approx 2 years ago. Initially I was under the care of an immunologist, then as things progressed I was referred to rheumatology. I had my 2nd appt at rheumatology a few days ago. I was told my positive blood tests are now negative and my DNA shows I do not have lupus. This is obviously great, however, I have many health issues many of you will be familiar with. I have been told my Vit D and phosphorous levels are low so have been started on Adcal twice a day. I am to return for another appt in 4 months time and am having a bone density scan in the meantime. On the referral form for the latter, CTD was listed as a diagnosis but the consultant didn't mention this to me. My employers have made reasonable adjustments due to my lupus diagnosis and general increased sick time. I'm now really worried about how to explain I don't have lupus at all!!! Any advice about CTD, how to address this change in diagnosis with my employer??

[tracynoe]

Taken this from the raynauds.org.uk website I think there is also something on the lupus website too I am sure someone will point you in the right direction. I have CTD and I have a lot of problems from most of the disease's so mine has a lot of overlap and this does need explaining to your employer that just because they have changed the label on your diagnosis does not mean that you are any less sick.

MIXED CONNECTIVE TISSUE DISEASE

This name was first given to patients who had a special antibody (protein) in their blood called RNP antibody and had features common to several connective tissue diseases. The clinical features common to this disease include sausage shaped fingers, thick skin, arthritis, muscle weakness and inflammation, Raynaud's, oesophageal problems and sometimes involvement of the lungs.

Other patients, who defy precise classification and have signs and symptoms representative of more than one disease, are recorded as having 'undifferentiated connective tissue disease'. These patients may eventually develop into having a definite disease such as rheumatoid arthritis or systemic lupus erythematosus. There are patients who fulfil the criteria for more than one disease and these patients may have for example, rheumatoid arthritis plus scleroderma or systemic lupus erythematosus plus polymyositis.

Symptoms vary from one patient to another and it is therefore difficult to generalise on the treatments available, as this can differ from time to time even in one patient. The physician would therefore aim to control the part of the syndrome requiring most attention at any particular stage. When treating these diseases it is therefore important to follow-up each case and to carefully assess any change in the pattern of the predominant clinical feature or features.

The outcome depends on what features develop with time and cannot be predicted accurately from the outset. Fortunately, for many people with MCTD, the prognosis is good and therapy is concentrated on the circulation and the oesophagus. A good balanced diet and rest, physiotherapy and emotional support are also extremely important. Overlap syndromes often require more potent medication

[steph1]

hi what is CDT

steph

[Petey]

Thank you so much for taking the time to respond, your information has been very helpful and has probably answered steph1's question too (CTD stands for connective tissue disease Steph1). I have had episodes which my GP called a lupus flare, now I know it isn't lupus (DNA test pretty conclusive), would it still be called a 'flare' in CTD? I've spent 2 years learning about lupus and am now starting again with CTD so I have lots of basic questions again!

[tracynoe in reply to Petey]

Yes it is still called a flare and just because they have taken away the Lupus title doesn't mean you don't have Lupus CTD includes Lupus and lots of other horrible diseases so if you can possibly explain this to your employer they should understand they obviously have enough about them to take steps to keep you when the lable was Lupus. You haven't said what medication you are on.

Good Luck

Tracy

[Purpletop]

Firstly, just because your blood tests now show negative for ANA or aDNA doesn't mean you suddenly don't have lupus - for example my blood tests are negative (whilst before they have been positive) and my diagnosis remained as it was before, I.e. lupus. The diagnosis could have changed if new symptoms or new test results showed a different picture emerging - but you don't say that happened. Before getting all upset about having something new, I would definitely challenge the new diagnosis with the specialist, it doesn't sound right. Separately, well done for your blood tests becoming negative, it shows your lupus (that by the way is also a connective tissue disorder) is calming down, which is great.

[Petey]

Thanks Purpletop, I've read a great deal on here about blood tests and diagnoses and it seems I'm right there with everyone now. To be honest, I was at the appt with photos and notes which didn't get used. Quite unlike me not to stand up for myself but I felt dismissed, confused and totally exhausted. It was one of those conveyor belt appointments. At the end of the day, it doesn't change my situation regardless of the label. It's just a headache employer wise. I'm concerned they'll think I made up an illness!

[jennylee in reply to Petey]

hi petey

I had exactly the same experience! diagnosed with lupus 14 years ago, its always been referred to as that then last year a very unsympathetic consultant told me I was not allowed to call it that as I in fact had ctd. like you I felt very dismissed and didn't stand up for myself. but low and behold my next appointment 6 months later I had a different consultant who was again referring to it (in the apt and the follow up letter) as lupus.

sometimes we're just a name and some blood tests and they don't realise the effect their words have on us. I no longer worry about the label, lupus and ctd are very similar and it doesn't matter what you call it, you still suffer the same.

I wouldn't worry about it or even mention it to your employer unless you have to, hopefully you'll have a different consultant next time that you can talk to about it

take car

[jennylee in reply to jennylee]

care not car!

[Slowmo]

Oh poor you, what a tough time, as purpletop says lupus is a connective tissue disease so I wouldn't worry that you have been anything less than truthful with your employer - you have been unwell - you were diagnosed and now the medics believe it may be something else - whether it is or not, you're still unwell, have still needed time off sick whatever the illness is.

I really hope your employer continues to be understanding. I would discuss further with the professionals about the actual diagnosis, I know it's easy to be on a conveyor belt at appts, but maybe go in with a list and questions to ensure you leave with the info you need.

Take care.

[Lynn27]

Hi my friend also lupus her blood tests are negative but a biopsy shows lupus so b/t don't always show up. You can't have lupus then not have it. I'm sorry to say but once you have it, it's for life. You can't get an only just reading, it's yes or no. I would not say any different to your employer, it just lumping all under the same banner. Your illness is still the same!!! Don't worry. Get your dr to put lupus on any sick note you get.

[LottaTee]

Hi Petey. Ellen29 is completely right. I've had the same thing happen to me and my employers are aware. They should not discriminate against you because like the dis act says a disability is an illness or condition physical Or Mental that can impair on your daily activities. Lupus and undifferentiated connective tissue disease act similar. Regardless of your diagnosis you are still suffering and your employer has to make allowances for that. Send me a message and I can tell you what I've been through at work so far. Lol.

Wishing you the best regardless of your diagnosis.

[Herb]

CTD= Connective Tissue Disease. Lupus is a form of connective tissue disease, as are most of the arthritis type diseases.

I go to Connective Tissue Disease clinic where I see a rheumatologist,, I also have a CTD Nurse Specialist, and I have a diagnosis of Lupus, APLS and and Raynauds.

It doesn't matter that much what you call it as long as you are getting the right treatment and tests.

[Petey]

Thank you to everyone for replying, I veryuch appreciate your time, support and info. I've been at work so hadn't seen all the replies until now. I agree with the attitude that as long as I receive any treatment I need, it doesn't matter what the label is, but I felt anxious about the employer side of things. Occ health have been brilliant so I'll talk to them. I'd rather be honest and upfront about even minor changes, as if and when they need to contact my GP or consultant, there won't be anything undeclared arising. I am on very little medication, Adcal, omeprazole, ibuprofen and co-codamol. I didn't get on with amitriptyline so came off it, took bisoprolol for a short period and have had several courses of prednisolone. My inflammatory markers don't reflect how I feel - raised when I feel well and normal when unwell. My last flare was May, worst one yet but I have felt remarkably well since, and for the longest period in years! I had photos, questions and notes with me at my last appointment but felt dismissed, rushed, unlistened to and they didn't get used. In fact, I came away a bit confused and don't know which tests were negative and which are still positive. I am normally very good at taking control of a situation like that but just lost my grip and came away feeling baffled. I just figure I am well enough not to be on anything stronger than I take so shouldn't complain. I'll just go with the flow as it seems this doesn't fit a regular box of any sort!

[dgleds]

I'd wait a while see how the diagnoses pans out, it might change again...Connective Tissue Disease can be pretty bad too, as far as I have read on it...

My tests are all negative now too, but its the plaquinil made them that way...

Basically it only ever was my ANA speckly and inflammation tests that got me diagnosed with lupus...an 4/11 symptoms....They might call it lupus for you again...