Seronegative Mixed Connective Tissue Disease advice please?

I am yet to have a definitive diagnosis as I seem to be able to test negative to all auto immune tests. I have a long history of urticaria, and stiffness in my joints on waking or after sitting,which I ignored for a long time. I had pleurisy of unknown cause, (I don't smoke or have asthma and I am in my early 30's) and always felt overwhelmingly tired. I thought I was just weak and that I needed to get on with life. Then six months ago I woke up with swollen hands/fingers and so sore I couldn't move them. From there on in I have had swollen knee joints foot pain/swelling etc i have a good Rheumy who has put me on pred, hydroxychloroquine and methotrexate the only thing that keeps me under control though is pred. I came off almost two weeks ago and I have had a massive flare and been very unwell. I know he will want me to go back on the pred but taking these drugs worry me, I understand that they help me function but are the side effects worse? Also does anyone else have terrible palpitations/tightness in the chest? I still feel unsure of the diagnosis though my Rheumy isn't. Apologies for all the questions I feel very unwell and could do with hearing if anyone has been through similar any advice would be welcome. Thank you.

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  • hi Hun

    Im sorry you are feeling so rotten. I am in a similar position to you....(27 years old) nothing showing in bloods apart from a positive ANA (I have graves disease also) I have just stopped pred and also started to flare up. Im worried they are going to put me back on steroids.

    I dont experience palpitations but I do suffer with costochondritis which is arthritis of the sternum. This feels like a stabbing pain on the left side when I breath in which is painful.

    Sorry I cant offer you any advice but just wanted you to know your not alone.

    xxxx

  • Thank you your reply is really appreciated, just saw GP again and as usual his response is to go back on steroids. Quick fix! Sorry to hear your story. Here's hoping for an improvement for Christmas!

    X

  • Hi Mix.... I also had unexplained pleurisy in my early 30s, as well as a long list of various 'unrelated'(!) symptoms coming and going from an early age. I had the Asian flu followed by glandular fever at 12 and never really recovered. It wasn't until after several miscarriages and an ectopic pregnancy at 27 (when I was close to death), that doctors admitted what was wrong with me wasn't in my head! Still, at that time, nobody thought of lupus and I wasn't diagnosed with SLE until I was 50 (am 64 now). I suggest you ask your GP or consultant for a referral to see a lupus specialist at a Lupus Centre of Excellence. It is your right to have a 2nd opinion. I am sorry you are having such a rough time and hope you will feel better soon :)

    xxx

  • Hi Nightjar, thank you for your reply. I also had a long history from my early teens then miscarriage and a difficult pregnancy with my son and my health went down hill from there. Also thinking it was all in my head...

    I am unable to be diagnosed as Lupus due to a negative ANA, though I have many of the symptoms, so am classed by my Rheumy as mixed connective tissue disease??! I have just spoken to him and he is increasing my methotrexate, and steroids to restart again to get me through Christmas.

    Can I ask you if you got or get any long periods without flares? I find it so difficult as I have a 3yr old and 5yr old and having to go to bed for a week or two regularly is just so difficult.

    ??

    Xxx

  • I had no lupus symptoms at all during my 2 successful pregnancies - and no problems with the births either. I felt very well right through ..guess I should have been born back when women had a child 'every year'..!! Most of my miscarriages (and the op) were in the 3 years between my two children. Then I had a long period (about 5 years) when things were ok (-ish) then I broke my right heel bone, which was followed by pleurisy in -81. Most of the time I've had no major organ problems - though I have 'always' had allergies/sensitivities, IBS, various infections/inflammations etc on and off. You get so used to being unwell that if someone had asked me if I was ok, I probably would have said yes. I have had times with many flares and other times with none - never managed to figure out what it is that triggers a flare and wrecking my brain hasn't helped. I changed to organic produce quite a while back - plus made some other healthy changes which seems to work. Improving my digestive system has really helped. I understand how hard it must be for you with the children being so young - so much we want to do. Luckily children often manage very well to entertain themselves - mine did when I had fatigue and sometime I would read to then (in bed) and sometimes I was a patient and they were nurses :)

    Though didn't always work, as at times I just wanted to sleep the pain away. Living with lupus can be hard ..but we do have times when things are easier - so hang on in there. Regular chiropractic treatments help me - but as we are all different, you may prefer something else.

    Lupus doesn't always show in the blood. My blood comes up 'clear' every now and then, and then suddenly shows lupus again (seems to be no pattern to it). A lupus specialist would diagnose lupus if you have a certain a mount of symptoms, regardless of blood samples. This is why it is important to be seen by a doctor who understands the complexity of this condition. I hope some of this is helpful and that you will have a good Xmas ..despite all <3

  • Thank you for your reply, it helps greatly.

    X ??

  • Just want to thank you, nightjar, for your post above. Have been wondering if there are any women my age with my kind of history, and what you've described comes close for me. And one of the big diffs is that I've been unable to conceive (due to DES daughter birth defects) and have spent quite a lot of time wondering how I could've coped if we had been able to have children.: your post helps me to imagine we would've found a way to manage. Which is strangely comforting. There are so many things I could say "snap" to. So, you've helped me a lot. Merry christmas

  • Thanks Barnclown ..almost called you Barnowl then. I am well into wildlife :)

    I had to look up DES Daughter... as never heard of it until now. I am sorry that happened to you but glad my comment was helpful. I too could say 'snap' every now and then when reading lupie comments here and on the various lupus groups on facebook. And yes, it does help to know that we are not on our own in 'living with lupus.' Merry Christmas to you too and best wishes for 2013! M xxx

  • Nightjar is correct, my ANA can veer from one extreme 2 the other, it can b SO positive at times but at other times negative & my lupus (with all her cousins that she's brought along with her) is pretty severe. U read on the web that it's uncommon 2 have a negative ANA & definitely have lupus but I have known of SO many patients with this so obviously it's not as uncommon as believed & in all honesty, how would they know anyway? I mean it's not as if we have ANA's, AntiRo's etc done weekly is it? Sometimes I go 4 months on end without having my full lot of bloods done. Luckily, my kids r'nt as young as u're's (my lad's 10 & daughter is 8) & although I have only had 2 really bad, uncontrollable flares since my diagnosis, my kids have never known any different & understand that I can no longer chase them in the park & that sometimes I will b in bed 4 days on end. Yes, I've gone thru really big periods of guilt that I can't give them a 'proper' childhood but I stopped beating myself up about it when I realised that they're happy. Ok, there r things I can't do with them but u work around it & find alternative ways of spending time 2gether, kids r FAR more resilient than we give them credit 4 & it's much better that when I feel up 2 it we have fun & a laugh rather than me moping about feeling bad 4 what I'm NOT able 2 do with them. As 4 flares, there seems 2 b a difference of opinion among many of us as 2 what a 'flare' is, I'd say everyday, I have some sort of pain, but I have been in flare (4 the past 2 years, although I THINK it's coming 2 an end now) & all I would say is that it feels like I've been hit by a steam train, but, this is the first I've had in 16 years so I guess I aint done too badly at all really :0/ The more u get 2 know u're body & recognise the signs, the easier it becomes 2 try & manage things but never think u're alone, we're all rooting 4 u ;0)

  • Thank you for your reply also, I have been feeling very unsure and quiet alone. I appreciate your support.x.

  • u're very welcome. I know how lonely it can make u feel, but on here, there is always some1 who understands :0) x

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