Mixed Connective Tissue or Sjogrens anyone?
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Mat48
Member Posts: 1,075
Hi and Happy New Year to one and all. Now I'll apologise in advance because this is just a bit of a moan and as such is not a very good way to come on for 2014 I realise :xmas_redface:
So to begin with the good news I have been fairly pain free ever since restarting Hydroxichloraquine 7 weeks ago. Strangely the first time I was on it for a year with Methotrexate it seemed to not make much of a difference. But I am thinking my diagnosis of RA may be changing to Mixed Connective Tissue Disorder now. I can't say that a change of diagnosis would be very welcome and I know it's early days relatively speaking and not sure when I next see my rheumy or what he said in his last letter.
I'm also terribly tired all the time and I'm not sure if this is because my eyes are so dry or if my eyes are dry because of the tiredness. Either way I'm struggling to get my New Year's vow to get back to the studio and knuckle down to some real work as an artist again. I keep looking at the dogs snuggled up on my sofa and getting jealous and can barely find the energy for much at all. Concentration terrible too.
So I wondered if any others here have been diagnosed with RA which turns out to be Sjogrens instead, and if so how much does arthritis feature? Presently the most annoying thing I'm experiencing is a significant increase in eye dryness. I see the optician for my annual eye check tomorrow and will ask him for another tear break up test because it's getting to the stage where I'm using drops once every few hours and have to carry them around with me and administer them before driving. My mouth feels quite dry a lot of the time too but mainly it's my eyes. My skin has become much dryer and in recent months I've suffered from outbreaks of hives and a horrible sore rash around my mouth and an itchy scalp on and off. Also, despite a brief respite from icy, wet, numb sensation in legs it's back with a vengeance.
In marked contrast to the lack of moisture in my eyes I've been waking in the early hours of each night soaked with sweat and with a desperate need to cool my hands and feet down as they are burning.
I used to suffer terribly from widespread and very severe eczema and bouts of alopecia from the age of 3 until 45 when it all went away. I'm wondering now if these are all connected and if my autoimmune problems may have been around for much longer than I've realised - well before the RA side of things showed up. I wish whatever this is would make itself a bit more clearcut though as the uncertainty of what each day will bring is getting me down. It was easier to deal with when just one symptom such as joint pain and stiffness in a way but now I'm stiff and itchy and have to use drops to see properly. Sorry to moan but I'm fed up with feeling like an exhausted shriveled, old prune with tingling anaesthetised legs and feet! I turn 51 next week so maybe it's all just age or menopause related but currently I feel like I'm spinning round in one big tedious circle where my physical health is concerned! Rather like an old building which has been badly renovated I feel some settlement would now be good :roll:
New vow - not to moan for a good long while if humanly possible!
So to begin with the good news I have been fairly pain free ever since restarting Hydroxichloraquine 7 weeks ago. Strangely the first time I was on it for a year with Methotrexate it seemed to not make much of a difference. But I am thinking my diagnosis of RA may be changing to Mixed Connective Tissue Disorder now. I can't say that a change of diagnosis would be very welcome and I know it's early days relatively speaking and not sure when I next see my rheumy or what he said in his last letter.
I'm also terribly tired all the time and I'm not sure if this is because my eyes are so dry or if my eyes are dry because of the tiredness. Either way I'm struggling to get my New Year's vow to get back to the studio and knuckle down to some real work as an artist again. I keep looking at the dogs snuggled up on my sofa and getting jealous and can barely find the energy for much at all. Concentration terrible too.
So I wondered if any others here have been diagnosed with RA which turns out to be Sjogrens instead, and if so how much does arthritis feature? Presently the most annoying thing I'm experiencing is a significant increase in eye dryness. I see the optician for my annual eye check tomorrow and will ask him for another tear break up test because it's getting to the stage where I'm using drops once every few hours and have to carry them around with me and administer them before driving. My mouth feels quite dry a lot of the time too but mainly it's my eyes. My skin has become much dryer and in recent months I've suffered from outbreaks of hives and a horrible sore rash around my mouth and an itchy scalp on and off. Also, despite a brief respite from icy, wet, numb sensation in legs it's back with a vengeance.
In marked contrast to the lack of moisture in my eyes I've been waking in the early hours of each night soaked with sweat and with a desperate need to cool my hands and feet down as they are burning.
I used to suffer terribly from widespread and very severe eczema and bouts of alopecia from the age of 3 until 45 when it all went away. I'm wondering now if these are all connected and if my autoimmune problems may have been around for much longer than I've realised - well before the RA side of things showed up. I wish whatever this is would make itself a bit more clearcut though as the uncertainty of what each day will bring is getting me down. It was easier to deal with when just one symptom such as joint pain and stiffness in a way but now I'm stiff and itchy and have to use drops to see properly. Sorry to moan but I'm fed up with feeling like an exhausted shriveled, old prune with tingling anaesthetised legs and feet! I turn 51 next week so maybe it's all just age or menopause related but currently I feel like I'm spinning round in one big tedious circle where my physical health is concerned! Rather like an old building which has been badly renovated I feel some settlement would now be good :roll:
New vow - not to moan for a good long while if humanly possible!
If you get lemons, make lemonade
1
Comments
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Hi Mat , alot of us with RA has problems with our eyes , dry eyes is pretty normal & its caused by inflammation blocking the tear ducts but has the same effects as Sjogens , some like myself get other complications with our eyes like Scleritis & some get other problems with thier dry mouths etc , we also get connective tissue problems which are mostly ignored unless its Lupus .
hope they confirm your prognosis as you need to know either way0 -
Hi Trepolpen - thanks.
I know a lot of people have overlap autoimmunity and I'm obviously one of them but mostly these are secondary to one main autoimmune disease I think - although I'm aware some unlucky souls have full blown RA and Lupus or MS and RA for example. I myself am diagnosed with Hypothyroidsm and RA - both autoimmune.
But I suppose I'm wondering if I might have Sjogrens rather than RA, not as well as, because my rheumy has always said that mine is RA as a "working diagnosis" but that things might change and to be aware and report new symptoms. I think its very unlikely that I have Lupus because of my negative ANA but so many of my symptoms seem to relate to Lupus more than RA. Also I have read that the title of Mixed Connective Tissue Disease is actually quite specific to those who have elements of each disease in combination, but no one disease fully.
And I suppose the seriousness of this condition, MCTD, depends on which aspects of Lupus or RA or Sjogrens or Sceroderma or Raynauds or Vasculitis a person suffers from most? I might be wrong about this but it could explain why I seem to have a new set of symptoms flare up in different combinations and then go - and yet all seem to be like variations on a theme for me - and not a new theme either but one that relates to my history or eczema and alopecia too. So I would be very interested to learn whether others with a diagnosis of MCTD could tell me if I've understood this correctly - that its a disease in itself? especially as it seems to be the direction I'm heading. Mat xIf you get lemons, make lemonade0 -
When my diagnosis was under question, I did wonder if I had MCT disease myself. It does have a very specific set of criteria, so it you're interested, you might want to google a reputable site.
I was also under the impression that RA can manifest systemically, so all of your symptoms could be related to the RA. These days, I try to focus less on the label and more on symptom control. I'm convinced I don't have Rheumatoid but as long as I get well and stay well, whatever it is called can wait for me. Although, I appreciate my feelings about my illness are personal to me and not right for everyone.
Take good care of your lovely self, sorry I could be of more help!0 -
Sophie as usual you are very supportive and lovely just to respond.
I saw the optician this afternoon (or optamologist - is there a difference?) and, while my glasses are still fine (thankfully as they are expensive varifocals less than a year old!), I explained that I was back just under a year later because I'm still slightly blurry and I'm using the drops he recommended every hour at present and blinking constantly - which is contributing to the fatigue I feel. So he tested for dry eye doing a tear break up and a blink test. He said that I got a significantly lower score this time - last time it was 6 (meant to be over 10) and this time it was 2-3. He said I am producing very few tears - almost zilch and only reason I haven't got corneal damage is because I'm eye dropping so frequently.
There's nothing to be done and he felt it went with my RA and hypothyroidism but wasn't primary Sjogrens because there was no crust around my eyes. He said I need to tell my GP when I see him next so that I get repeat prescription of the preservative eye drops. I'm hoping, like the hives, it is something that passes but I feel I'm going round in ever increasing autoimmune circles just now! What's going to be gathered up in the next round I wonder?! Mat xxxxIf you get lemons, make lemonade0 -
I have been diagnosed with RA Lupus and Sjogrens along with my type 2 diabetes underactive thyroid and OA amongst other things, my eyes hurt and feel gritty and dry I get a crust each morning formed in the corners which are uncomfortable my skin is very dry I apply body butter everywhere moisturiser on my face etc my mouth is dry and I have to use a special type of toothpaste my dentist gave it to me I do get muscle pain a lot and was thought to have MS at one point I have muscle weakness which is awkward, never thought of MCT,0
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I'm guessing that you have a positive ANA to have been diagnosed with Lupus, Lavender Lady? In which case you probably have got MCTD, having all these conditions, because you have to have a positive ANA for MCTD too. I haven't got it because I lack a positive ANA but neither do I have undifferentiated one apparently because of my RA diagnosis. So for me the Sjogrens and Raynauds are both secondary.
The thing that confuses me most is where the Hypothyroidism fits in because there is a school of thought that most of these symptoms (dry eyes, itchy scalp and general dryness, chills, white toes, fatigue etc) could be caused by an under treated hypothyroidism. I do wonder if my GP were to change his mind and agree to increase my dose of Levothyroxine if I might find myself feeling a lot better. But I guess it's all much of a muchness at the end of the day - if we have atuoimmune troubles they can come in their droves :roll: :xIf you get lemons, make lemonade0
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