Autoimmune Conditions

[HiveMind]

Hi everyone. I had a Rheumatologist tell me last week that if I have one autoimmune condition that I cannot have another. This comment stunned me as I have always been told that the opposite is true. And everything I have read says the same thing. Am I going mad? Is there new evidence that I don’t know about? Confused 😵‍💫

[piglette]

Perhaps your rheumatologist should talk to some of the people who have two autoimmune conditions in that case!

[HiveMind in reply to piglette]

This person wasn’t my primary Rheumatologist she was a Rheumatology team member. My primary Rheumatologist is very good.

[piglette in reply to HiveMind]

Oh sorry, that is good that your rheumatologist is very good. Was the individual a rheumatologist? I hope not.

[krillemy]

Just OMG!

[AmyS1]

medlineplus.gov/autoimmuned....

Definitely increases the chances

[HiveMind in reply to AmyS1]

That’s what I’ve always been led to believe.

[Mooka]

I have two! Vasculitis and vitiligo. It’s a worry when a rheumatologist says this.

[HiveMind in reply to Mooka]

I’m so confused. I thought I’d misheard her but my husband was in the room with me and he confirmed afterwards what she’d said.

[Mooka in reply to HiveMind]

My Vasculitis doctor commented, on seeing my vitiligo, that it was another autoimmune disease and said you can get more than one. Interestingly when I was on high dose pred and cyclo the vitiligo did clear up a bit. I hope this one is training and moving on so you don’t see her regularly.

[DorsetLady]

Can’t see any new evidence to back up that comment - exactly the opposite in fact.

And some are more likely than others -this is from AI- which does correspond with articles from individual organisations.

Having one autoimmune disease increases the likelihood of developing another, with about 25% of people with autoimmune conditions experiencing multiple autoimmune diseases, a phenomenon known as multiple autoimmune syndrome (MAS).

Here's a more detailed explanation:

Increased Risk:

Individuals with one autoimmune disease have a higher chance of developing additional autoimmune conditions.

Multiple Autoimmune Syndrome (MAS):

When someone has more than one autoimmune disease, it's referred to as MAS.

Prevalence:

Studies suggest that about 25% of people with autoimmune diseases tend to develop additional autoimmune disorders.

Genetic and Environmental Factors:

Both genetic and environmental factors are believed to play a role in the development of multiple autoimmune diseases.

Commonly Co-occurring Diseases:

Some autoimmune diseases are known to frequently co-occur, such as type 1 diabetes and celiac disease.

Specific Autoimmune Diseases:

Certain autoimmune diseases, like rheumatoid arthritis, multiple sclerosis, Hashimoto's thyroiditis, and Sjögren's disease, may increase the likelihood of developing MAS.

[StriatedCaracara]

I had one consultant that told me that even for undifferentiated connective tissue disorder there was a specific autoantibody so I did not have it.

Then the clinic letter, from the same consultant, said it could be an undifferentiated connective tissue disorder but that was too difficult for them to diagnose.

My conclusion was sometimes some say what is convenient - may be to reduce work or caseload. I also concluded that when it suits they may also contradict themselves.

I have since had a second opinion and have my UCTD diagnosis.

It is hard because we have expectations of the medical profession. Trust is being questioned more by many patients nowadays as they know enough to find out the truth so can question things.

One consultant said to me, out of work, they could not speak what they believed but agreed at conferences the position to take.

Says a lot about what gets agreed at conferences if this does not tally with logic.

It sets a principle though that saying a distruth is not a thing that they might get into trouble for. In other jobs people would not progress in their careers but in medicine some like this seem to end up managing many and big budgets, eg famous institutes, when you Google them decades later.

[oldtimer2]

That is so obviously rubbish that I'm surprised that you didn't correct her at the time - but I expect it was the shock. We are all human and do sometimes get the wrong end of the stick!

[HiveMind in reply to oldtimer2]

As I said I was caught off guard and questioned myself about what I’d heard. And then the moment passed.

[PMRpro]

I have my own theory - it does so happen that some people have symptoms that all fit into someone's nice tick boxes and you get one label. Most of us have a range of symptoms caused by our autoimmune system playing wide and loose and then they get the rheumies confused, can't decide, tell us we are atypical, when if fact you have HiveMind syndrome, I have PMRpro syndrome, piglette has Piglette syndrome. Once you have a deranged immune system - you are at a greater risk of it doing other things - and they may be able to add other labels and that has been said for a LONG time. So no idea what your person is on about ...

If she really DID say that - she needs calling out and encouraged to learn her job properly.

There may not be an identifiable antibody - that doesn't mean there isn't one, just not identified yet. And you can have autoinflammatory disorders that don't demonstrate autoantibodies - and if SHE doesn't know that she needs to learn it - and that there is probably more NOT known about a/i disease than known. Which is why we get so gaslighted - I said that to a top rheumy last week and saw a dawning comprehension of what we go through. There is a word people now understand ...

[HiveMind in reply to PMRpro]

I totally agree with the gaslighting. I unfortunately get that quite often. I’d have more respect for them if they just told me they didn’t know. Not only is that more honest it’s crucial to the patient doctor relationship (well MY patient doctor relationship anyway). Unfortunately the doctor DID say what she said and ordinarily I would call her out sadly one other aspect of healthcare as I know it is being wary of being labelled a ‘difficult’ patient. I (WE) need all the support we can get so alienating a Rheumatologist possibly wouldn’t be too bright. Who knows. 🤷‍♀️

[PMRpro in reply to HiveMind]

Yes - I don't have a problem with them admitting they don't know ...

[Jenecoll]

Mixed Connective Tissue Disorder. It's what I have. Scleroderma, Lupus, Raynauds and Dermatomyositis! It's a pain to diagnose.

[OldTed60]

I’ve always been told the opposite by rheumatologists. I did see a specialist dr of rheumatology rather than my consultant, last year. She told me that I was lucky to have hEDS as well as Systemic Sclerosis and Sjogren’s - because it’s masked the classic skin tightening. I was still recovering from first time Covid and stoma surgery so I didn’t actually feel that lucky at the time. Yet stupidly I politely agreed as I tend to be a positive thinker even though having both delayed my diagnosis and treatments by many years. Later I frothed about this and other stuff she’d said to me which I later found to be misguided to put it politely. When my own rheumatologist phoned last month I very carefully asked if I could just see her every 6 months in person and she replied that this seemed a very sensible and reasonable request and she would put this on my notes. I don’t know if you can do the same and vote with your feet but if you can then I would. Having multiple autoimmune diseases as I do too is probably more common than just having one I would think.

[ZiggyDiego]

it would be so much easier for the doctors if it was true, wouldn’t it? I’m not a doctor, but I am a health professional. I’ve had colleagues that seem to prefer being definitely wrong about something to admitting they don’t know. Sometimes but not always they worked in orthopaedics where work can be a bit more cut and dried. They tended to get more complaints than the rest of us too. It might be worth making PALS aware you weren’t happy with the consultation - they will take the process on for you. I was told by a doctor in clinic that rituximab doesn’t have any effect on fatigue. It was the opposite of my experience but I never called him out and regret it now.