Hi all....just an update as some of you know I was starting to struggle with methotrexate. At my rheumy appointment today the consultant recommended leflunomide as this is meant to be good for joint/muscle problems. As I hadn't read about this previously it was all a bit new to me.........but feel I should give this one a go. Bit of a mixed bag at my appointment as my previous diagnosis was uctd/mctd of lupus /myositis. Last time I was informed that it was more lupus and today the rheumy does not want to put a diagnosis on it due to it mainly only affecting two systems.....the joints and muscles. But then I was told all the evidence seems to points to lupus. Previously evidence seen of photosensitivity, mouth ulcers, joint inflammation and strongly positive ana's. Apparently apart from two raised Crps's ......the other bloods since last year have been fine. However, the past few months have been my worst yet with joint muscle weakness, memory problems, flares still occurring, headaches, dizzyness and a recent kidney infection. This is all too familiar a scenario with others on here I know.
I was also told I had joint hypermobility today too. I mentioned about my memory problems (short term memory such as holding onto a thought before speaking) and left side weakness in arms and legs/sore shoulders neck etc. It was recommended that I should have a CT brain scan to occur soon. I also have two more appointments scheduled in before June with the rheumy nurse and the rheumatologist. So I do feel I am being looked after well.
So....why am I feeling a little unsettled tonight......Is it the thought of:
1. Trying a new DMARD and all that brings getting used to the effects?
2. The UCTD still a bit of a mystery....it's the saying ....all the evidence points to lupus but we don't like to say this until it affects more systems or other bloods show up....despite strongly positive ana's previously. Apparently the last ana was negative last time though I know too this can change. I do understand the whole UCTD and that its still likely to be lupus with another overlap.......
3. The thought of a brain scan (....I know it's only a formality probably but still).
4. An added 'hypermobility' diagnosis being added.
I do understand that I am having good care/monitoring....I guess really it feels more about things still are not really crystal clear..........or are they ever I really wonder! Jeez......it's a funny old condition......hard to live with and even harder to get an exact answer. Hey.....but tomorrow is a new day!
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mstr
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I can totally understand how unsettled you feel after your last Rheumy consultation! I'm sure it's because you keep getting different info about a diagnosis and it's confusing and hard to live with! I've had this now for 28 years and like you have a UCTD diagnosis . Mine could be Lupus overlap with myosotis but my Rheumy can't decide. Like you I'm having good care, regular appointment s to monitor things so any changes are picked up quickly but I'd just love an answer that stayed!. Do you find sometimes that you feel as though your not always believed after a consultation?. Good luck with the new drug, I hope it works well for you. How long has this journey been for you?.x
Hi Misty14, thanks for your reply Wow you have had this a looooong time...I'm but a novice with 2.5 years. It's a hard one as you know to a rheumy UCTD is still a condition... I guess if the ACR criteria is saying positive ana and then 3 other symptoms (4 in total) then you have that.....then that is what is odd to me. Why have a criteria if we are going to deviate from it. Why say all the evidence points to lupus and UCTD. My example was that it had only affected two systems joints/muscles though previous evidence and agreed of photosensitivity. Are we saying we have to wait until organ involvement before lupus can be stated. It would appear from this forum that a lot of people do not have the aDNA blood result positive and do only have an positive ANA with symptoms. So Misty in answer to your query I do feel believed and I know my symptoms are also seen. If only the rheumys knew that the UCTD is frustrating as when we have had so many symptoms/flare ups going on it really doesn't feel as though it is reflecting this. To me there just seems a 'blur' between lupus and UCTD. Another point is if the UCTD was going to go into remission (which apparently it can) then sofar it has shown no signs of doing so. Yes....I too hope the new drug goes ok (touch wood).....thank you. So glad you are getting good treatment too. xx
This question of diagnosis is such a confusing business which doesn't help us cope , just adds to the difficulties! I had noticed on here that a lot of people have been diagnosed with mild Lupus! I wonder what there blood shows?. Also maybe that ACR criteria needs changing/ updating. I thought Purpletop's reply very helpful as I do feel as you do that UCTD doesn't reflect our struggles enough but now I think thanks to her that I mustn't feel that way! Just to confuse you further I have got some organ involvement, heart and lungs but it hasn't yet furthered my diagnosis cause, too mild I think luckily!. Good luck too with your brain scan-hope you don't wait too long for it and they don't find your brain has turned to mush with all these postings!. Ha A sense of humour helps! Take CareX
Hello mstr, and thanks so much for your update including this much really good detail. You help me a lot to figure out how to look at my diagnosis process & treatment plan
I'm pretty much in a similar position to you in some ways ways: as of (re) diagnosis 2.5 yrs ago, getting good NHS attention at leading Center for treating lupus...gradually being tried on various meds...building up a rounded picture of my version of SLE/UCTD/MCTD/global hypermobility (poss Ehlers Danlos), joint & muscle involvement + synovitis etc, photo sensitivity etc etc. the main diff between us is possibly that, haha, it turns out I was diagnosed with lupus as an infant & teen....am now 60, with nothing really alarming in the way of bloods results. And "provisional" remains on my records regarding SLE diagnosis....I gather this could remain there for up to 7 or 8 years...reason being: the diagnosis process is so long & involved. And, hey, scientists are still only beginning to REALLY learn what our sort of lupus/CTDs/hypermobility syndrome etc are all about! Even so, I do feel believed and I know my symptoms are acknowledged by the team treating me.....
And, yes, i too wonder about the 'criteria' thing....my impression is that in the USA, consultants stick tight to criteria, and will not prescribe any Rx if a patient doesn't clearly fit with criteria. I've not asked my clinic about this, because I know my history & my current state meets criteria, but organ involvement hasn't been fully scrutinised/tested....yes pleurisy in my past and other lung involvement + lifelong continuing heart murmur, but nothing currently pinned down cause nothing seeming urgent.... My feeling is that next up for scrutiny is my cognitive impairment, because, most recently, that has dramatically responded positively to low dose prednisolone & myco....& on & on
Like misty, I'd love an answer that stayed...some kind of certainty...but I've become resigned that the one thing we do know is that no one knows enough about our selection of these types of conditions....and I thank my lucky stars, that, so far, at least, I'm responding relatively positively to an evolving treatment plan...but, even so, I'm holding tight to the edge of my seat telling myself "calme, calme" cause I know the meds I'm on are big time
So, i wish you all the very best, and totally feel for you in your frustration, and I am HUGELY glad of your company here, and hope you'll keep up this level of detail in your posts. You help me A LOT
XO
Ps have you checked out the hypermobility organisation's website? I think it's known as the HMSA. It's based here in the uk. The site has really good solid info about hypermobility syndrome in all it's aspects , and is totally frank about the fact that study in this area is still vvvv much evolving, with plenty of ambiguity remaining
Morning Barnclown:)...... Thanks for the reply as it is very helpful. Yeah the reality is the rheumatologist is saying all her thoughts are lupus (that should should be good enough for now). As today is a new day I am thinking with a clearer head. I have read that with some UCTD remission can occur and a full blown CTD does not always happen. Well I would certainly welcome that. Sofar the signs are not pointing that way and recent left shoulder/arm/leg weakness and memory problems (short term memory) also evident. Another question we then ask ourselves is do the meds we are taking contribute to this? I never had UTI's before this condition occurred now I do. I was informed yesterday that methotrexate could cause the kidney infection.....well who knows really or MAYBE its just what is happening with the condition.
Regarding the hypermobility I admit I always could bend my thumb back onto my wrist (as you do as children to show others you are double jointed. I was always fit so putting my hands flat on the floor whilst standing and bending over was easy. I guess that all kind of fits in. Though when she mentioned my joints were lax and she showed me her strong hands.....I wanted to say that's how mine were until 2.5 years ago when this condition started......but of course I didn't. Sometimes it pays to bite your tongue so you are not thought of as 'being difficult'. So I just 'rolled' with that one. I will have a more detailed look at that site Banclown so thank you. It does kind of fit with my shoulder/neck pain too but you have to ask yourself what came first the chicken or the egg.
Anyway....I have rambled enough of my thought processes on here. It is what it is. I am being treated well and regularly so time to move forward. UCTD/probable lupus it is for now.
Ps: On a plus note.....it's a nice clear sky out there today with a slight breeze. Thank you for your reply as always xxx
I was first dignosed globally hypermobile back in the 1990s, based on examination of my joints. Since my lupus re-diagnosis in 2010-11, i have discovered the HMSA site....what has most impressed & surprised me is that hypermobility is considered a syndrome, with different versions...several of which involve our internal tissues and organs, going way beyond just our joints......for instance, in my case, the thought is, that probably the circulation in my hands & feet has been particularly affected. Rheumatologists are busy studying all this - I try to concentrate on believing we'll see clarification of all this stuff (lupus, hypermobility etc) in time for our diagnosis & treatment to see some benefit
Don't fret about the CT scan, it takes a minute and you're not enclosed, plus it gives a good picture of your brain, so all good. It is more as a precaution, I guess, given that you've mentioned your cognitive issues to your doctor. If the CT scan shows not much (which I suspect it won't, as your symptoms don't appear severe), you might be either monitored for a while or sent to a neurologist.
As for mixed label etc - try not to get upset about the uncertainty. I have the lupus label but many many times it question it because my blood results are always fine other than positive ANA and high liver function tests and my symptoms are mostly neuro - doesn't sound like lupus, does it.
The main thing is to get the most appropriate medication - as long as you have an autoimmune label then you're ok, because the medication given will be taken from the pool of medication used for this group of diseases that generally deal with similar symptoms across the board. It sounds to me as your doctor is addressing each symptom and that's good - you wouldn't want to be given a drug that is used for lupus, for example, that has no effect on your specific symptoms.
As for the newly prescribed drug, here is a good article about it nras.org.uk/about_rheumatoi.... It is used for rheumatoid arthritis but I suspect that any joint inflammation would respond to it.
You are bound to feel unsettled - just give this drug about 4-6 months to work properly and see where you are at that point. The good news is that the drug can be used in conjunction with other DMRDs, so if your cognitive impairment isn't improving with leflunomide, your doctor can add another, more targeted drug to help that specific symptom.
All in all, a very good session with your doctor, I'd say - just take it one step at a time now and just think, by the time leflunomide starts working (4-6 weeks), it will be spring and you'll be able to go out and enjoy the fresh air.
Hi and thank you Purple top. I do acknowledge that she is right to treat the symptoms and that I am having good treatment (no doubt about that). I guess it's more to do with the uncertainty that we learn to live with when we have a CTD (whatever that may be). I guess its also for me about feeling vulnerable at times because of the changes that illness brings. We often seem to go from hard working/professional people to being 'a patient'. There is nothing like a hospital visit to make us even more aware of that. Watching people walk quickly up and down corridors, organising things etc can also remind us of the kind of role that we did before. So I guess even a few years in with this we still have days when we grieve a little for who we were and the uncertainty that follows. I know I'm reflecting a lot today and for the most part I am feeling positive (although admittedly last night some 'inner rebellion' was going on but I always try to take each day as a new day). You're right too this med may work and things will all calm down again as is often the way with these conditions. You have a way of putting things into perspective and this helps Onwards and upwards I say.
I understand - though each time I visit a hospital I come out being thankful I'm able to get out, there are so many ill people there, of various degrees of criticality, things could be so much worse.
But the way I think shows I've been beaten into submission by the lupus (counting my blessings), whilst you are still remembering the person you used to be, so there is fighting spirit left in you, well done!
Ha ha Purpletop.....you have me nailed there......that fighting spirit or in my case plain 'stubborness' is very evident. I like your thinking too as there is always someone worse off. That's where the reflective stuff comes on handy and good to bounce off each other at times such as when we have a low day. My heads back in gear (well as much as possible) now thanks to this debate and some natural resilience. Cheers:)!
Mstr: You put this with great integrity....I've just been calling my characteristic post-clinic appt reaction "processing", which is a ultra simple way of describing a very complex, even profound, & deeply emotional, process...and YES, for me, this process does involve grieving & inner rebellion etc
I think I might just pinch this word 'processing' from you......that will definitely rein me in a bit at my next appointment. I might even think a little bit of budha by letting these emotions enter into my mind but then go straight out again. Thank you guys Purpletop and Barnclown for this helpful and reflective debate.
I love your description of your post Rheumy consultation thoughts etc. I shall think of mine similarly as I always have a lot to think about afterwards. Hugs X
Haha: great! To me, this "processing" seems so like what we do here on forum: like I've internalised our various voices and they're all in me having a discussion about how my appointment went, how I feel, what I think, what happens next. This can keep me busy for several days after an appt! In the meantime, I hesitate to say much to those around me, cause i feel as if all my stuff could just sort of avalanche them under....and i always think: gosh....we all have enough to cope with, whether we've got a chronic illness or not. If I'm ULTRA emotional, I have learned to force myself not to internalise my feelings though....my over riding tendency is to withdraw rather than reach out...and i've learned this can be bad for me & those around me....this is where our forum is a lifesaver
It's great you're here misty: you make a big diff to my life. Take care xo
It just shows it really pays to be honest with our thoughts and feelings as when we do 'open up' on here.....we have others saying "me too". Now when I'm at a hospital appointment I will try to prepare for the whole 'being a patient' experience. Though I have to admit the nurses/doctors are just lovely where I go so it is more about 'my own thought processes' towards the situation in itself. I'm glad Barnclown that the forum helps you not to internalise your thoughts....we all benefit from reaching out and keeping 'connected'. Take Care xx
You have just described me . I withdraw from friends when I've got added problems. I've been trying to be different and go with saying "a problem shared is a problem halved" This forum is fab, I so appreciate your kind words that make such a difference to me. May we have many more helpful postings! Take care X
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Wow you have had this a looooong time...I'm but a novice with 2.5 years. It's a hard one as you know to a rheumy UCTD is still a condition... I guess if the ACR criteria is saying positive ana and then 3 other symptoms (4 in total) then you have that.....then that is what is odd to me. Why have a criteria if we are going to deviate from it. Why say all the evidence points to lupus and UCTD. My example was that it had only affected two systems joints/muscles though previous evidence and agreed of photosensitivity. Are we saying we have to wait until organ involvement before lupus can be stated. It would appear from this forum that a lot of people do not have the aDNA blood result positive and do only have an positive ANA with symptoms. So Misty in answer to your query I do feel believed and I know my symptoms are also seen. If only the rheumys knew that the UCTD is frustrating as when we have had so many symptoms/flare ups going on it really doesn't feel as though it is reflecting this. To me there just seems a 'blur' between lupus and UCTD. Another point is if the UCTD was going to go into remission (which apparently it can) then sofar it has shown no signs of doing so. Yes....I too hope the new drug goes ok (touch wood).....thank you. So glad you are getting good treatment too. xx
Covid, antivirals & methotrexate help please
Azathioprine versus methotrexate has anyone gone any opinions?
Lupus diagnosis yesterday
ANA Positive 1:80 Nucleolar pattern 2013 and ongoing pain. The last 5 weeks I can barely walk. 
Can't be Lupus says GP...well what then?
