Regarding mixed connective tissue disorders, crossover and autoimmunity in general..

I read this when my searching took me to a Lupus site yesterday and thought it might be of interest to others who are also often in a muddle regarding the crossover of these related conditions such as RA, Hypothyroidism, Lupus, MS, secondary conditions such as Raynauds, Diabetes etc.

When I was diagnosed with RA last November my rheumy advised me to keep an open mind and so I've tried to do this. We all seem to need these labels rather badly but as my consultant said "you ask for certainty but I think the best way to deal with this is to get used to a degree of uncertainty - in a sense it's not what we call this that matters most - it's how we treat it.". Increasingly this seems to me to be a very useful piece of advice although my need to define all these closely related conditions is still quite prevalent I admit (hence still searching!)

"Are people with lupus more likely to get other problems where the immune system attacks the body?

The answer to this is yes. Anyone with one condition where the immune defence mechanism attacks the body (so-called autoimmunity) is prone to another one. We know this is the situation with all autoimmune diseases. For example, people with diabetes (where the body attacks its insulin making cells) are more likely than the general population to get rheumatoid arthritis or thyroid diseases.

In general, if a patient has lupus combined with another autoimmune disease, the lupus itself tends to be less severe. In the same way, the other autoimmune disease, which can occur without lupus, tends to be milder. Correspondingly, doctors can get away with less powerful treatment in these ‘overlap’ or ‘mixed connective tissue’ disorders."

I think the last paragraph explains why I'm always pretty well these days but never quite well enough? And why like others I'm dogged by a variety of weird symptoms that don't fit any specific label such as deep heat in joints and limbs, white fingers and all over pins and needles perhaps? - never mind adding Menopause into the equation!

[swapshop]

Hi Tilda

I have very recently been diagnosed and yet I still feel I don’t really fit – it’s a good thing really because I feel too well to have something so serious!

I don’t have really bad fatigue – just tired if I overdo things; I think I have comparatively little swelling (although I can see some in my fingers, wrists and ankles ) What I do have is major stiffness, painful feet and tendonitis everywhere – started with one finger and has progressed, fingers, thumbs, wrists, elbows, shoulders, knees and ankles, toes. (Note - my hips are fine so I think I may take up hoola hooping!)

Anyway, I also have the burning heat. Originally some months ago, before I started with the tendonitis I put this down to being a lady of a certain age ( 48 and peri-menopausal) – I used to describe it a really hot 'core heat'. This is now what I feel in my arms and hands ( thankfully the accompanying pain has subsided). Infact, rather than RA I am thinking I a metamorphasizing into a superhero who can shoot bolts of fire out of my hands – I think I could join the X-men, the only problem would be getting about ... did I mention the tendonitis!

So, the upshot is, although I have been diagnosed with RA, I don’t feel typical either - if there is such a patient? And although I have do have several symptoms, as obviously the rheumatologist wouldn’t have diagnosed it (including nodules on fingers, elbows and feet, stiffness, some pain etc ... oh and very high anti-CCP and RF) I still feel like all these toxic drugs are a bit of an overreaction.

I hope I still feel the same in a few more months ...... and although I don’t think I am in denial I feel I am not poorly enough to describe myself as having RA as very thankful I have what I consider to be mild symptoms to date.

Now i’ve read my post -How odd does that sound! But hey i’ve decided that’s OK

[sylvi in reply to swapshop]

I've ra for 9yrs and it is only this year that i have considered myself ill. I felt that it was something that other people got and i just carried on as normal until about three years ago when i had a knee replacement. Then things have gone downhill since then.The more i try the harder it gets for me. This year has been horrendous for me health wise and in august was when i felt that not only is this a disease it is also an illness and at times i have felt quite poorly with it.

One persons pain is anothers niggle and no there isn't a typical ra patient as we all present with different symptoms.

sylvi.xx

[Hidden in reply to sylvi]

I agree Sylvi re niggles v pain. I also think that if life and general health is good the chances are that we don't notice the rest as much whereas when bad things happen out of the blue or if we have an accident or something this triggers the RA and it's hard sometimes to know whether we are stressed because of the pain or pained because of the stress. For me it's been the other way round and I've flared I've been stressed or taken my health for granted over a matter of time and it builds up and then suddeny wham bam I'm freezing and joints go nuts! But mostly my life is good and therefore flares are very rare. Tilda xx

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I agree Tilda, as mentioned before I have had Psoriasis all my life and that's an Auto Immune Disease and now have PsA. When I last saw my consultant I mentioned that I felt as though the treatment I am now having is putting something back into my body that's been lacking for years, he was in total agreement.

[Jane06]

Hi Tilda,

That's interesting that other conditions can be milder if you have more than one. I seem to have developed autoimmune hepatitis, but this has been treated very effectively with low dose steroids, so I probably won't need Azothiaprine (the drug of choice for this condition) for the time being.

I just wanted to point out that it is only Type 1 Diabetes that is immune mediated - not the more common Type 2. This is one of my 'bug-bears' as I am a Children's Diabetes Sp. Nurse and deal almost entirely with Type 1 Diabetes, many of whom also have hypothyroidism and coeliac disease (well - some)! The media seems to think there is only one type of diabetes - type 2 - linked to obesity! That is not the case for Type 1. I know some people with RA do develop diabetes due to steroids and possibly resulting weight gain, but this is usually Type 2 (I think). Just out of interest - my dad had Type 1 from a young age, so I know where I get my genes from!

Keep up the good work with all the research!

Jane x

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Thanks for your responses. Swapshop your response was music to my ears (well okay to my eyes then!) because I often feel like a bit of a freak or a fraud or both but I did have a lot of pain prior to diagnosis - mainly in hands and wrists and knees so I recall how horrible that was enough still to just about accept the diagnosis of RA. I don't have your soaring RF or anti-CCP but my ESR is usually pretty high and I do have a positive RF - for which I'm very thankful in some ways because it is always good to feel believed. Also I think everyone has a different response to pain so one person's agony might be another's "just a bit of an ache you know?". Especially if you've given birth or had other painful conditions throughout your life as I have your pain threshold changes and we might interpret pain very differently to the way a man of the same age who has been very healthy until RA might perceive it?

Georje that's really good that the meds are making you feel that way at last - I know psoriasis does sometimes graduate to become PsA although I think it can be the other way round for some sufferers too.

Jane - I agree it's important to emphasise the distinction between diabetes 1 and 2. My dad and grandad had type 2 and I've long been aware that I can do a lot to protect myself from getting this disease through diet and exercise. My dad also had gout and I believe that is an autoimmune disease from the same family but was aware that type 2 diabetes isn't. I do think it's hard when people lump all these diseases together - such as OA and RA for example when one is autoimmune and the other isn't. And I'm aware that it must be hard for those with JRA to have to put up with the level of ignorance about which age group arthritis affects too.

However it's also good to remember that pain is pain and there is a lot of overlap. Many with RA will get secondary OA and both are often terribly painful so distinguishing doesn't always help - especially not if it leads to dismissal by the medical profession. Also sufferers of OA can go on to develop RA. I was looking into all these because I seem to have relatively mild hypothyroidism which I've suffered from for about 13 years now and am showing signs of having Raynauds now too. I read that if it's secondary Raynauds it's usually much more severe than the primary type but again mine appears quite mild mostly. So I looked up mild RA, mild Raynauds, mild Hypothryroidism to see if this was quite common and also to see if they usually get worse. This is how I came across the passage above what what I read on the main Lupus Site. Tilda xx

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thelupussite.com/fact17.html

[hamble99b]

my previous rheumatologist treated me in his connective tissue disorder clinic as I have several auto-immune disorders.

regrds, sandra.

[helixhelix]

It doesn't help that they're a number of different names for the general grouping of conditions, as well as specific names for the individual diseases. I've just been shifted from the inflammatory arthritis clinic to the connective tissue disorder clinic. Why? Who knows as same doctor and same disease......

And I'm the other end of the odd scale as my ESR and CRP refuse to budge from "normal" even when all my joints are the size of balloons and I'm red and throbbing everywhere......and I'm sero-negative as well. So I don't think there is a normal RA patient.....

[Hidden]

I meant that having a high ESR is normal for some RA patients - probably the sero positive patients. If a member of the general public with no inflammatory conditions was checked and their ESR was found to be 54 as mine was today then that would be considered high but for me I suspect it's only quite raised. For you it would obviously be soaring but then you're an RAer so there's nothing normal about you Polly ( and I mean that in a very good way of course!).

I know I'm meant to be pleased that my ESR is often high because it alerts doctors that something is going on but I admit I find it quite upsetting. It's not so bad when I'm in pain, as I am a bit today, but when I'm feeling quite well and it's high it worries me that there is something sinister going on that I can't see or even feel. It also worries me that I'm on these strong drugs that don't seem to be up to the job. I know I've said this lots of times but it does seem to me to be quite odd.

The best thing about calling RA a connective tissue disorder is that it gets us away from the "bit of arthritis ah it comes to us all" brigade?! Tilda x

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Ps is OA a connective tissue disorder too does anyone know?