Some advice please!

[RosieA]

I am under a lovely rhuematologist who referred me to dermatology after had first suspicious rash. I had a good, productive chat with dermatologist, having sent photos of rashes (two seperate incidents) and some hair loss on temple.

Conclusion is that it is a malar rash, caused by photosensitivity - terms bandied about were 'Lupus like", "diffuse hair loss", Lupus spectrum, overlap/UCTD, something about diffuse cutaneous lupus - but not cutaneous lupus. Back to Rhuem for more on diagnosis - I gather Dermatology will inform them of their opinion, e.g. having I suspect ruled out anything not related to AI disease.

I am starting to learn that Lupus is a spectrum of diseases - am I right? With all those different terms I am totally confused. Do they all mean more or less the same?

Also, have to have my ANA retested, I know its positive, but to see if the titier has altered.

Any guidance in unpicking all this would really be appreciated or is it another wait and see?

[Spanielmadlady]

Lupus is extremely complex and affects everyone of us differently.dont put to much weigh on your ANA as it can flit between positive and negative.i assume your rheumatologist will do your DS-DNA, compliments,urine and immunoglobulins.if you have photosensitivty you will need to cover up in hat sun cream etc and stay out of the sun as much as possible. Several other AI illness go hand in hand with lupus so you may well have more than 1. see what your rheumatologist says next visit x

[RosieA in reply to Spanielmadlady]

Yes, I think complex is an understatement!! I think it's just another part of the ever explanding jigsaw. Several syndroms have been discussed from seronegative IA, Sojrens and now this and hence I suppose UCTD. Have had most tests under the sun I think, and am glad to say that bar ANA I have been resoundly negative on all, but just struggled to get to normal neutrophil count. I honestly think that once I can get the fatique under some control, I can get a little of my life back on track and focus more on the things I love to do, such as my classical guitar - but at the moment even grade 2 seems like grade 8+ but concentration so tricky at present. Will no doubt know a little more in a few weeks. Thank you for your response -just think I was in blissful ignorance of all this a year ago! x

[Spanielmadlady in reply to RosieA]

Fatigue wise...sleep sleep sleep.naps during the day help give you a boost for the rest of the day.pacing yourself also can leave you with spoons of energy for other things.brain fog is awful isnt it.i still struggle to come to terms with the fact I can only deal with one thing at a time now and if I've got brain fog I'm wasting my time even trying to tackle anything at all

It is a long rollercoaster of a ride to try to get back on track unfortunately I dont think many of us ever do.life has changed beyond all recognition for me now.patience is a virtue with lupus as treatment plans and drugs take so long to work and if the dont work it's back to square one to try another combo.

Google the spoon theory...its a brilliant analogy of lupus x

[RosieA in reply to Spanielmadlady]

Will do thank you. It is so tricky isn't it. I need to learn to give myself permission, that I'm not being lazy or imagining my need. Off to read the spoon theory. x

[Spanielmadlady in reply to RosieA]

I used to feel very guilty especially when my son was off school but then I soon realised that he loses out more if I overdo and suffer a flare then if I pace myself.i set a task of the day to achieve yesterday was to dust and I did it 🙌 but the world doesnt end if I dont.your need is very real x

[RosieA in reply to Spanielmadlady]

Have just read. It is indeed excellent and as the author says is so appropriate for many AI and other chronic illnesses. Husband has just read and agrees that it is a super description of what he has observed. x

[Spanielmadlady in reply to RosieA]

I'm glad it helps.yes it is appropriate for other chronic illness as well.i hope it helps you understand your need x

[Pxs75 in reply to RosieA]

This sounds so like me! My neutrophil count has been low for years and at the moment is at the lowest it has ever been. I think this is the biggest cause of my overwhelming feeling of fatigue. I’m just learning to take regular rest spells and not feel guilty for it. My ANA is normal but DS-DNA abnormal but I know this can fluctuate. I am just beginning to come to term with this world that is Lupus and from what I’ve heard everyone is the same! Keep going and good luck x

[RosieA in reply to Pxs75]

Oh! So interesting about your link between neutrophils and fatique. The only time mine hits normal is when I'm ill!! Go figure! At least they respond to the rallying call. Still have no formal, this is it, diagnosis, apart from the dermatologist saying that the rhuematologist said seronegitive arthritis and UCTD (first I'd heard of it formally), she added Lupus like.. to the mix. Lordy, Lord - am I the only one who wakes up thinking.. whatever's happened, why after one year on this road can't I come to terms with it. Perhaps I just need to come to terms with an AI disease and let the rest sort of float away on the ether. x

[Jmiller623 in reply to RosieA]

Hi Rosie! Check out Wendy39 thread. I tried to explain how we get to UCTD prior to formal lupus diagnosis. Unfortunately, classic lupus patients are photosensitive, classic malar rash with raging lupus nephritis and high dsDNA abs. We are now figuring out that is only one type of lupus people can have because there are so many other ways to present. Many of us gain UCTD diagnosis and about 30% go on to develop formal CTD diagnosis. But I honestly think it all depends on your rheumatologist and how comfortable they are with assessing and treating lupus and evolving lupus.

[RosieA in reply to Jmiller623]

Thank you Jmiller. Sorry for the tardy response but am just recovering from having some family visit- all in the garden, I honestly wasn't prepared for how exhausted I would be. I have read the new EULAR diagnostic tool. An interesting read. Not saying that I have Lupus but it provides some clarity to the different features and is meant to be an easier tool to use for early diagnosis. It's an evolving picture and whatever finally emerges I am learning to be content that I am on the right meds for now and hoping that I start to feel stronger with the higher HYD dose whilst I taper off the steroids. I will certainly check out Wendy39 thread. Thank you again.

[Pxs75 in reply to RosieA]

It has taken me over 4 year to get to this stage and my diagnosis only probable Lupus. No quick answers or fix I’m afraid, just gotta keep going x

[RosieA in reply to Pxs75]

Indeed, patience does appear to be a virtue.

[KayHimm]

Rosie -

You are in good company. There are many of us with UCTD, lupus-like syndromes and mixed connective tissue disease. The immune system is complicated, so the expression of illness is also varied and complicated.

It is confusing! But the most important thing is to know your illness.

My rheumatologist would say UCTD is not the same as lupus. The thinking is that it is its own milder illness. I can give you some helpful links that describe the syndrome.

As @Jmiller623 said, thirty percent of people with early UCTD go on to develop lupus, scleroderma or another CTD.

[RosieA in reply to KayHimm]

I would appreciate the links please Kay. I've looked at some but in reality there are some dodgy sites out there - one saying it isn't even a CTD - hum! I think the clue is in the title. I am always more content when my knowledge base is more secure. I have booked my next blood test as requested and will now try and wait it out. Tomorrow is a rest day, I have promised myself , so good opportuity to read. Thank you.

[KayHimm in reply to RosieA]

Rosie -

UCTD is something like twenty-five percent of a rheumatology practice.

Go to: undifferentiated connective tissue disease, in-depth overview- hospital for Soecial Surgery. This is one of the best academic centers for rheumatology in the U.S.

Go to Rheumatology, undifferentiated connective tissue disease. Hal Mitnick md, Anca Askanase

Hope this material is helpful.

K

[RosieA in reply to KayHimm]

Thank you. This is very kind of you. x

[leeniebeanie726]

Yes , it most certainly can be . I have been experiencing it for many years from Lupus. I also started noticing a few year ago, tiny broken blood vessels across my nose and cheekbones. My rheumatologist advised me it’s vasculitis . Brought on by Lupus. And some people will experience it . Having Lupus, and RA effects every part of our body . We’re not safe from anything 😩. Feel better, and keep us posted 🙏🏻😊💜💙🦋

[RosieA in reply to leeniebeanie726]

Oh, I do so hope the vasculitis doesn't develop any more. These AI diseases appear to have some many facets, it's a bit like going to a hall of mirrors. I will be chatting to my Rhuematologist in a few weeks so hopefully I'll know a little more. Thank you.

[Queenie1943]

Poor you. Yes Lupus is so difficult to get a diagnosis as i have found out

I felt like a hypochondriac with all the symptoms i was suffering. My journey began with the dermatologist and my skin lesions and rashes and hair loss

and was only diagnosed when i had scalp biopsies and then found out i had discoid Lupus and was put on Hydroxychorloquin in March. Having suffered from joints and muscle pains plus depression and fatigue for years ,i finally got to see a rheumatologist and i am awaiting the result

Of the blood,urine and ultrasound tests. Don't give up hope, I try and stay positive through the chronic daily pain which is difficult. I hope that you can find some peace of mind on this journey. Kind regards

[RosieA in reply to Queenie1943]

That is very kind of you. I do try and reassure myself that I am on the right treatment whatever the diagnosis - having tried Methotrexate since last Oct and Leflunomide, Hydrox seems to suit me better. It's the not knowing what your enemy is that is so tricky.

My Grandmother suffered from enormous fatique, joint pain, dry eyes etc and was labelled a hypochondriac by her Dr and eventually I think by her family. It was only remembering her telling me about her dry eyes when I was a child that the family finally put the pieces together, as two of her grandchildren suffer AI diseases, of which I am one.

I do so hope that the results of your other tests help and don't show anything more as it were. I had one dodgy urine test which showed some protein - the next was clear! My fingers are crossed for you. Kindest wishes.