...... off one auto immune disease is bad enough!

[Jaxine]

It was interesting reading nettinett s post this morning regarding auto immune diseases attacking in packs. I was discussing this with hubby last night feeling fearful that it seemed very likely and almost a natural progression. Dare I admit it I did Google! and it seems research also confirms this, especially with RA. There I go again over thinking! But who doesn't especially in the early stages of diagnosis but I dont want to this disease to consume me. But it does seem that the majority of people on this site do have a combo of auto immune conditions. Any thoughts?

[Fruitandnutcase]

Yes, I’d say autoimmune conditions definitely like to hunt in packs. Not sure it’s worth losing sleep over although I do love Dr Google and research everything like mad so you’re not alone in that.

I’ve got several autoimmune conditions now. Some are easy to live with others are a pain. I’d say my worst one was Graves Disease - overactive thyroid, I felt very ill for a year.

This inflammatory arthritis isn’t much fun, I’d say mine is mild compared to a lot of people I read about on here - although mine seems to be affecting my feet these days and depending on what shoes I’m wearing I can end up with either sore feet or very sore feet but I try to ignore it. I thought the top of my feet pain was tendinitis but I’ve had it a few times since summer and my podiatrist said yesterday that it could be arthritis which wasn’t great news. Other inflammatory conditions I find mostly don’t bother me that much.

I think it’s worth doing what you can to live as well as you can. Eating well, exercising well, keeping going to spite the autoimmune conditions etc. You will still have the autoimmune conditions but at least you’re fighting back in your own way and I’d ignore any of your friends who think you’re weird for trying.

I went totally gluten free about five years ago to see if it reduced my thyroid antibodies - I test my bloods and it has massively reduced them so I’ve been totally GF ever since, which I hope is helping my autoimmune system generally as well as my thyroid - I don’t take much dairy either and I’m supposed to be cutting out sugar but I’m finding that very hard at the moment the dietary changes have also helped my IBS.

I’d rather be someone who researched any conditions I have and take an active part in my treatment than be like a lot of people who quietly accept everything their GP tells them and just have treatment ‘done to them’. Good luck for the future 😊

[Hidden in reply to Fruitandnutcase]

Agree about Graves. It was horrendous!

[Simba1992]

This seemes to be the case. My theory which is very personally just mine is that the RA meds that target mainly symptoms unfortunately in many ways change our metabolism and immuneresponse, increasing the destructive elements that are active in the development of RA and other AI diseases. I believe that if we can support our organism in a right way, we can also decrease the probability of developing other AI diseases.

I have no problems with my organs or other AI diseases after three years of RA. I have not taken RA meds. May be just a coincidence ofcourse but this is following my individual situation. Simba

[AgedCrone]

As you say you are overthinking things again.

A lot of the time most of us manage really well , even if we have got more than one health problem.... If it worries you......Stop reading what is happening to others and concentrate on keeping yourself well.......life really is too short to worry about what we might get tomorrow.

I learned that back in the late 1990's...& I'm still here liviing a nice life, with just the odd hiccup....not everything that ails us can be blamed on RA or the drugs we take, I know you probably don't think that now ..but it is a fact,

It's only natural that those with multiple problems are those who post here most .....the rest of the membership are reading here, and getting on with their lives.

So please take it one step at a time and you will probably do really well.

In 2019 we have so many wonderful drugs that even those diagnosed 10 years ago were not lucky enough to have....your doctors WILL find the right treatment for you, but I'm afraid it can take a bit of time.

[Hidden]

To be fair there are ways of dealing with it. Different people react to different things. I have improved things for myself. I just haven't written about that yet.

You may only get one. I had an extraordinarily stressful life, and I think at least one of my autoimmune diseases was drug induced.

Don't panic. I'm still here to tell the tale! And get on with living.

[helixhelix]

It does seem to be common to have several. Luckily I have two sisters and it was decided to share AI diseases betweeen us, so we have one each (and not the same one). I'm happy to stop at one!

[crashdoll]

I understand the fear. I am not sure on the statistics but I wouldn’t say it was a natural progression that you will develop another autoimmune disease. It is more that we are higher risk that the non-autoimmune population. Unfortunately, my mum has 2 autoimmune diseases and I also have 2 but together, we help each other learn to live with them. I was told to be vigilant of any symptoms suggestive of a 3rd autoimmune disease but also told not try not to be anxious. Easier said than done!

[Simba1992 in reply to crashdoll]

Seemes to be some stats and info on this,

benaroyaresearch.org/blog/p...

[Simba1992]

Autoimmune thyroditis seemes to be a very common additional AI disease in RA. This study shows once again the central role of thyroid function in RA and the possibility to target this in time for decreasing RA symptoms as well as the development of an autoimmune thyroid disease.

academic.oup.com/aje/articl...

[roseyx in reply to Simba1992]

Simba would you consider doing a post about thyroid issues. You have been writing about it on different posts & it seems like you have a lot of ideas about the subject but it's hard to find everything you've been saying because it's all scattered around. I mentioned it to my Gp. the other day & he agreed that there is an association with RA so I had the NHS test done which came back normal ...

and thanks for the above link ( not an easy read ! )

Apologies Jaxine for sidetracking a bit. It's an interesting question you are raising .

[Simba1992 in reply to roseyx]

It's such a broad subject that it is impossible to squeeze the essentials into a small enough space to fit into the forum, sorry

One problem with testing for thyroid function is that the tests seldom give you a truthful picture if they are not specific enough and not interpeted by a specialist. Subclinical hypothyroidism is seldom picked up by the conventional tests. It has however been shown that RA pas after two years of illness have hypothyroidism developed very often and that followup is important. Simba

[roseyx in reply to Simba1992]

Thanks for replying Simba. Yes I understand it's too large a subject to do what I suggested.

[medway-lady]

I've been advised that antibodies destroy and move on but can never be stopped so no point in worrying stuff you can't control. I've got 4 AI's , but a brother and sister with none, so perhaps luck plays a part too. I'm sure that in time science will be able to manipulate genes and target medications better but it isn't worth worrying about. I was tested for auto immune disease way back although I thought it'd be diabetus that got me next but it was'nt so all to the good. I immagine the antibodies as 'night nadgers' (a very old campaign to make chldren brush their teeth) once munched a bit they move on. My parents best threat the 'night nadgers' know if you've brushed your teeth. Well mum I did, 'cos still got em. lol xxx

[Hidden]

I should also say that despite all those autoimmune issues I still get up to all sorts of mischief! It is hard in the beginning but you simply decide to not let it beat you. There are times when it does of course, but you just accept defeat for a bit, rest, and then brush your skirt off and get on with it. Life is too precious to waste it.

It's ok to be fed up and glum and anxious sometimes...just not for too long. We have all been there, and don't let anyone tell you any different. 😘

[AgedCrone in reply to Hidden]

Exactly Nettie....Don't let RA take over...we've got it & we have to deal with it or it will win.

As long as you are determined not to let that happen...you are ahead of the game...& you are a shiny example of how to kick it into touch at every turn.

[medway-lady]

Nettie and Aged are so right I intend to grow old discracefully with dancing, laughter and mischief. As well as spending kids inheritance on holidays and fast car (thinking about new one today). RA has not removed my sense of humour or sense of the ludicrous which you need when unable to open a packet of crisps or do up a bra. I've got RA but don't want to wear a granny bra but one that matches the red knickers from Victoria's Secrets. Life will be what you make it and RA is just a part not the sum total of it.

Try not to worry too much its such early days and it is a bit scary at times but don't let it take over. x

[Soreknees2016 in reply to medway-lady]

Loving your attitude! 👍🏻👍🏻👍🏻

[Hidden]

Hi Jaxine, I must be one of the lucky ones when I read your replies. I was diagnosed with RA at 43 and have been on numerous meds including damards and biological therapies, but fortunately I suffer with no other ailments, guess it’s the luck of the draw! so don’t waste time or energy over thinking things and take it a day at a time. X

[Tillytop]

I was really interested reading all your posts on this. I have had rheumatoid for 20+ years and I do have several other “named” associated conditions some definitely autoimmune, some possibly not. But over the years I’ve realised that the medics like to be able to “label things” and put them into neat little packages (often according to which specialism they fall under). But in fact, in my case, often they cross over both in cause and symptoms. So though “on paper” I have a number of different conditions, I think of it all together as a kind of “autoimmune soup” 😏 because whether my immune system is attacking my joints or my eyes (for example) it’s all part of the same thing. And I definitely feel less overwhelmed - I have autoimmune disease, rather than “I have rheumatoid and Sjogrens and .....”. Don’t know if that makes any sense to anyone but it helps me feel a bit better about things 🙂. Tillyxxx

[Hidden]

I agree with everything Nettienet, Agedcrone and Medway-lady have said.

By the way I have had RA for 30 years and have only RA ( but that’s enough!)

[Fra22-57]

Yes we seem to collect them.You know you can eat healthy, live healthy but wam bam and your health is gone.

[Hidden]

It is true that people with an auto immune condition usually get more than just one. In my case I have collected a whole bunch of them including; RA, PsA, underactive thyroid, Sicca Syndrome, TMJ, sleep apnoea, psoriasis, fibromyalgia, asthma, migraines and eczema. I do worry about it all, but realise that there is nothing I can do about it and I might as well not think about it and just carry on. Jaxine, I would say just enjoy life as much as you can and don't worry about what might happen.

[Soreknees2016]

Like many others who have replied, I also have a couple of AI conditions, but although I have heard that if you get one you may get others, I have never given it a second thought. Life is short, and there are so many things that can happen to turn your world upside down as well as additional AIs, that you could drive yourself mad with worry.

So live for the day, be good to yourself and try not to worry about what the future may - or may not! - hold.