Autoimmune diseases are like buses!

[heatherp]

I think they certainly all come along together!

This is possibly my first blog (probably going to be a long one!), although I've asked a lot of questions on this board that I have had great answers to! However now just pondering about these diseases and wondering how many of the darn things there are and how many you can come across in one family!

Just over a year ago I had never even heard of autoimmune diseases and thought RA was 'simply' stiffness in the joints that 'older people got'! I've certainly been educated during the past year!

When my symptoms first started (and came on quite quickly) back in August last year, I tried to figure out what was wrong and by chance came across rheumatoid arthritis after a chap at work developed gout, and I thought his symptoms in his foot sounded like what I felt in my shoulder, wrist, knee, jaw etc. On first visit to the doctor they asked about family history - I mentioned that my mum has ITP (low blood platelets), which I then found out was apparently an autoimmune disease, and because of that they suspected another one with me and therefore tested for both lupus and RA as they both fitted my symptoms! Well can you believe it my blood results came back positive for both (anti-CCP and anti-dsDNA) so both quite specific for RA and SLE....

So I've had a year dealing with these, although really feel so lucky - firstly that I was diagnosed so quickly, and possibly lucky even because I did test positive, so it made diagnosis easier and therefore got onto treatment really quickly! My treatments have worked really well for me and I've been able to lead a pretty normal life, work full time, be a mum to two young boys (8 and 9) and do most things I want to, although have had a few issues with blood results meaning changes to medication, so that is probably the only downside I've experienced...

Today though, I think I'm feeling more of an impact as a result of autoimmune diseases than I did on my diagnosis, or as a result of any treatments or symptoms....my son has now just been diagnosed with one (well should I say blood results are positive, but they want to do some other tests for final confirmation)! We have been through the summer with constant bouts of him vomitting for no apparent reason and constant stomach pains, and had been to the doc a few times about it. Finally got to see a paediatrician last week - well she said after asking about family history, that since there is a link to ai diseases in our family (seems like an echo from my own first appointment!), she thought it wise to test for coeliac disease, which fits the symptoms! Heard today that the blood result has come back positive but she needs to do an endcoscopy to check stomach lining for final confirmation!

It's weird, I think this diagnosis has hit me more than my own, as I really don't want him to start a life of having to deal with potentially more of them, since they seem to be multiplying by generation! The only consolation about them though I guess, it that it does make diagnosis so much easier! I was reading about coeliac disease and they say the average time for diagnosis is 13 years! Got it right in only a few months with my son, purely because of the link as I'm sure they wouldn't have even tested him if I didn't have my diseases! So I guess there are good points to this afterall....

And now wondering how many autoimmune dieases others have in their families across generations - and are they like buses all coming along at once?

[Marnie87]

Hiya,

I as diagnosed with Coeliac in March 08, RA end of 09 and fibromyalgia sept10.

I understand your worried about your son, my mum has had Coeliac for 24 years. If you wanna message me I'm more than happy to answer any questions on Coeliac.

Hope he gets on well with the endoscopy. He will be so much better once on a gluten free diet, you will notice the difference in him so quickly.

Marnie x

[heatherp in reply to Marnie87]

Thanks Marnie! I am sure I'm going to have loads of questions as we go on - but one quick one. How were you diagnosed? What symptoms and tests did they do? Also, have you ever heard of false positive blood results for the disease? Just wondering why if my son has symptoms and positive blood they need to do further tests to confirm?

[Treesha]

Hi there, 20 yrs ago I was told I have sjogrens syndrome which is an auto immmune disease now I have just been diagnosed with Inflammatory Arthritis. When I was first diagnosed with sjogrens and told it was a auto immune diseas I thought I was going to die of HIV AIDS because the abbreviation was the same! Phew glad I got that one wrong. I am also amazed at the number of auto immune conditions. Take care x

[heatherp in reply to Treesha]

that's really funny - I never thought of the AIDs abbreviations! and I guess 20 years ago there was a lot of focus on AIDS, so would have been a worry!

[LavendarLady]

Hi Heatherp, there are a number of auto immune diseases and for some reason they do seem to run in families. Both my mother and I had (she is dead now) and have thyroid disease. The difference was mine was diagnosed early enough to remove a goitre and ultimately remove the thyroid itself so I am on thyroxine for the rest of my life. My lovely mother was never properly diagnosed only given vague comments that it could be thyroid and she did suffer a lot as a result. She also went onto develop Type 2 diabetes in her 60s.

My Uncle was diagnosed with RA in his 60s and ended up crippled up with it - treatments then were bizarre to say the least. My Aunt (mother's sister) had both osteo and RA from being quite a young woman. She was a midwife as well as a farmer's wife so out in all weathers as well. Osteo is wear and tear on the bones and is usually called the "old people's disease". My father had it in his hands and hips and my grandfather suffered as well. My father had to have both hips replaced which did give him a new lease of life. Spring lamb came to mind at the time!

But osteo is completely different to RA and RA can strike at any age from juvenile upwards although the optimum age seems to be between 30 and 50 years old. At least now, we have wonderful treatments which enable us to lead a better life than our parents did and remain relatively free of pain apart from flare ups.

In addition to thyroid and RA, I also have mild sjordens, trouble with my teeth (down to MTX according to my GP), some osteo as well (wear and tear again), and plantar fasciitis in both feet, which actually triggered off the RA diagnosis. I also had breast cancer 17 years ago which is also a problem with immunity according to my oncologist (although they don't really know what causes it),

The body is a wonderful machine but boy, does it struggle at times!

LavendarLady x

[heatherp in reply to LavendarLady]

just doesn't seem fair that some people get so many illnesses and others nothing at all!

[Hidden]

Hi Heathherp. I had planned to keep off this site until properly diagnosed but am feeling so nuts with uncertainty just now that I thought I'd come back early - as diagnosis looks far from certain anyway just now.

Very sorry to hear about your son. I think you are right at least to say that it's good that they looked for Coeliacs because of your own AI problems. My sons are tested for a hereditary heart condition passed potentially down from my husband's mother. She has been lucky to have hers located in a relatively safe bit of her pulmonary tract so it doesn't cause blockages but my husband and three sons might not be so lucky if they get it so in some ways we are very lucky to be able to get cardiology to look for it for them all every five years or so.

Back in April my GP was sure that what I had was RA because of my family history of AI diseases as well as symptoms and a low positive RFactor plus raised inflammatory markers. My father and my Grandfather both had Diabetes 2 and I have suffered from Hypothyroidsm for a decade or so. My first cousin has RA but like me she seems to have quite a slow acting form so far from what I've gathered from her mother, my aunt. My dad also had severe gout. So far my 3 sons don't seem to have any AI problems but I guess that if they ever have health problems these conditions will always spring to doctors' minds and that's got to be a good thing. TT

[Hidden]

I have RA (well controlled now) My eldest sister died of Wegeners granulomatosis (auto immune lungs) and one of my nieces died of Lupus aged 15 (auto immune internal organs). I understand diabetes is also auto immune and there are several others such as Crohns Your blog is interesting because I have never been asked about any family history of systemic illnesses.Perhaps I should have been.

[heatherp in reply to Hidden]

there definitely seems to be more focus and awareness now - my mum didn't even think her ITP could be linked to my RA/SLE and i dont think even realises that it is autoimmune...

sorry to hear about your family links - you've had it hard! i was tested for Wegeners recently too due to some issues in my nose and came back weak positive for that, but fortunately from the actual results my rheumy said it was unlikely it was WG...however once again would probably never have been tested if it weren't for my RA..

thank goodness we all live now with all the medication / knowledge about these...

[Hidden]

Hi,

I have 1 son with Coeliac Disease - he was diagnosed at 15 months as he was hugely symptomatic. There were no blood tests then so he had 2 Jujenal Biopsies at 15m and 2yrs and a final one at 9yrs old - he is now 29 and fit and well and very sporty. Join the Coeliac Society if the diagnosis is confirmed - lots of helpful info and local groups. there is a Coeliac group on HU too:-}

I was told by my rheumy that there are clusters of AI in families - with us the RA is on my paternal grandmother's line and for my son it's his Dad's Irish genes that are the carriers (they've found the genetic marker for coeliac disease]. As other folk have said - Crohns, Diabetes, Lupus, Thyroid, Sjogrun's etc etc - there are quite a few AI diseases.

Cece x

[Hidden]

Interesting. I had over-active thyroid in the seventies and radiation treatment to destroy part of my thyroid. Wonder if this is linked to my present RA

[heatherp in reply to Hidden]

could be as there are autoimmune diseases affecting the thyroid!

[julieporter]

Hi

I was asked on diagnosis if any one in my close family had RA -my grandmother had it and i remember as a child looking at her gnarled joints and thinking yuck

I think there is some sort of genetic link with auto immune disease

All i can say is that i'm glad treatments are available now that can prevent damage like my darling grandmother had

Julie xx

[heatherp]

I think that as well as the medications there is definitely more of an awareness in the medical world about AI diseases which can only be good for us!

Like I say it certainly helped my diagnosis and my son's it seems (although his still needs final confirmation from endoscopy...).... strange though that it isn't necessarily the same disease that passes down, but can be any AI disease!