Living with an autoimmune disease.

[sagarich]

Prior to April 2020 I was a very healthy and active 32 year old with an addiction to running and cycling.

During the course of 2020 my health and subsequently mental health quickly started to deteriorate with periods of huge unexplained weakness / fatigue / pain / unusual sensations around my body. Early on a b12 deficiency was noted and I started monthly injections, which helps temporarily for a few weeks... but then symptoms would come back.

After 2 years of endless tests and being bounced around nearly every specialist imaginable, last week I have finally been diagnosed with Mixed Connective Tissue Disease + Sjögren's syndrome.

I was given a steroid injection to try and shut down immune response short term and a 12 week course of hydroxychloroquine. I have started to finally feel marginally better post injection, but I am still pretty wiped out after a gently 30 min dog walk.

Going forward, do any of you have any experience with managing an autoimmune disease? And has anything helped? I speak to a Clinical Pain Psychologist and also see a physio regularly to try and build my strength back up. But looking at daily changes to help. Google suggests cutting alcohol completely and intermittent fasting... but that seems a common suggestion for everything i've google.

Any pointers / advice welcome.

[Google [bot]]

You could investigate Biologics. Though they’re extraordinarily expensive so a high threshold to get them.

Edited by Google [bot] on Thursday 28th April 12:20

[21TonyK]

sagarich said:

but that seems a common suggestion for everything i've google.

The more you google the worse it gets. I've been on steroids to manage an autoimmune condition for the past 3(ish) years and likely will be for life.

Not so sure about hydroxychloroquine but issues I've had include weight gain, increased blood pressure and boughts of complete exhaustion for days at a time. All of which can be improved with a decent diet and less booze... as above!

The only suggestion I would have is see if there is a support group on facebook? It's the only reason I'm on there and you will find other sufferers will have far more experience and knowledge than most GPs (mine is particularly useless).

And speak to your consultant (on the assumption your GP isn't directly involved.)

[sagarich]

Google [bot] said:

You could investigate Biologics. Though they’re extraordinarily expensive so a high threshold to get them.

Edited by Google [bot] on Thursday 28th April 12:20

Thanks, I will speak to my consultant next time I see him.

[sagarich]

21TonyK said:

The more you google the worse it gets. I've been on steroids to manage an autoimmune condition for the past 3(ish) years and likely will be for life.

Not so sure about hydroxychloroquine but issues I've had include weight gain, increased blood pressure and boughts of complete exhaustion for days at a time. All of which can be improved with a decent diet and less booze... as above!

The only suggestion I would have is see if there is a support group on facebook? It's the only reason I'm on there and you will find other sufferers will have far more experience and knowledge than most GPs (mine is particularly useless).

And speak to your consultant (on the assumption your GP isn't directly involved.)

I can relate with the boughts of complete exhaustion. The worst lasted about 10 days last year.

I deleted all my social media accounts a few years ago... but will look into creating an account for that purpose only.

Likewise, when this initially presented I was under the care of 3x useless locum GPs. Luckily I've have access to BUPA and some of the consultants have been great (a couple less so), but will check in with my consultant as well.

[21TonyK]

The main thing I would take from your situation is its been diagnosed early and managed. Do you know if you come under "rare diseases", if so you are not tied to your local NHS trust. If you don't have one who specialises locally you can be referred out of area to any specialist you (or you current consultant) wants.

[AdamAJP]

A close relative developed an autoimmune disease so I did a little reading on top of some learnings from the early part of my career in asthma treatment (pharmaceutical side). I came to the conclusion that there has to be something in the fact that autoimmune diseases are a developed world problem.


An evolution of the “Hygiene Hypothesis”, this might be worth a read, even if not for the squeamish…

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC16187...

I hope you find a regimen that gives you some decent relief from symptoms.

[Four Litre]

Sorry to hear that OP. I was also diagnosed with Sjogrens but it turned out I had a pituitary tumour! Not doubting you, but who diagnosed it as you may well already know it’s notoriously hard to diagnose correctly. Most people take around 5 years before dots are correctly joined. How are your eyes and mouth? Did you test positive for antibodies?

[sagarich]

21TonyK said:

The main thing I would take from your situation is its been diagnosed early and managed. Do you know if you come under "rare diseases", if so you are not tied to your local NHS trust. If you don't have one who specialises locally you can be referred out of area to any specialist you (or you current consultant) wants.

I would have thought I am, my Rhumatologist referred me to another consultant with a specialism in rare diseases... but I will check if the diagnosis falls into this.

[sagarich]

AdamAJP said:

A close relative developed an autoimmune disease so I did a little reading on top of some learnings from the early part of my career in asthma treatment (pharmaceutical side). I came to the conclusion that there has to be something in the fact that autoimmune diseases are a developed world problem.


An evolution of the “Hygiene Hypothesis”, this might be worth a read, even if not for the squeamish…

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC16187...

I hope you find a regimen that gives you some decent relief from symptoms.

Eeek, I'm not sure if I want to read that or not...

[sagarich]

Four Litre said:

Sorry to hear that OP. I was also diagnosed with Sjogrens but it turned out I had a pituitary tumour! Not doubting you, but who diagnosed it as you may well already know it’s notoriously hard to diagnose correctly. Most people take around 5 years before dots are correctly joined. How are your eyes and mouth? Did you test positive for antibodies?

The rare diseases specialist has diagnosed it and I tested positive for several antibodies (ANA/Ro/La).

I have also had a several MRI's (including head) and put through a number of uncomfortable procedures (colonoscopy & pelvic bone marrow extraction).

[pavarotti1980]

sagarich said:

Thanks, I will speak to my consultant next time I see him.

There will be a treatment pathway for you which will be similar to

Steroids such as prednisolone and anti-inflammatories (ibuprofen or naproxen)
I
DMARDs (azathioprine, cyclophosphamide, hydroxychloroquine, methotrexate, leflunomide)
I
Biologic's - currently not provided/commissioned on the NHS but local hospitals do provide rituximab to patients with severe disease who have failed traditional treatments such as DMARDs + pain relief/corticosteroids. Depending on the geography some sites in the North East provide it

[sagarich]

pavarotti1980 said:

sagarich said:

Thanks, I will speak to my consultant next time I see him.

There will be a treatment pathway for you which will be similar to

Steroids such as prednisolone and anti-inflammatories (ibuprofen or naproxen)
I
DMARDs (azathioprine, cyclophosphamide, hydroxychloroquine, methotrexate, leflunomide)
I
Biologic's - currently not provided/commissioned on the NHS but local hospitals do provide rituximab to patients with severe disease who have failed traditional treatments such as DMARDs + pain relief/corticosteroids. Depending on the geography some sites in the North East provide it

Very informative, thank you!

[Ouroboros]

I have Pitarsis Rubra Pilaris, a rare skin disease, not autoimmune but very similar.

I always had skin problems and last 10 years got worse.

I've been on steriod creams, cyclosporine, methotrexate some other stuff, basically ruins you. I was at a point where i was really struggling and just said i can't take this anymore stopped going my appointments.

I then took a break applied back to hospital and met a derm who put me straight on biologics. There have big side effects but made a massive difference. I can't say it is an easy road but you do have to start at the cheaper drugs and work up, that is how the NHS works.

Your life will be impacted i've put on weight struggle with the gym, i used to go a lot but side effects impact that. The biggest thing to realise there won't be a magic pill to solve it unfortunately.

Just looking at Sjögren's syndrome, similar to what i get, it was actually getting ulcers on my eyeballs(not nice) that triggered doing something about it. Still get problems with eyes though.

Edited by Ouroboros on Thursday 28th April 17:46

[pavarotti1980]

sagarich said:

Very informative, thank you!

That what our rheumatologists follow. Cost is never really in the thought process of a consultant when treating a patient. They want to do the best they can and sometimes that can cause some problems in terms of access to drugs. From a pharmacy point of view it has to be somewhat restrictive otherwise you would have an out of control drugs budget with doctors doing what they wanted.

The systems in place to prevent this are robust and are based on evidence and cost effectiveness. First of all the drug has to be licensed for the indication, then it will be assessed by NICE to determine if the evidence base supports its use. They get a bad rap as preventing treatment but the decision making is sound. Then NHS England haggle for a good price. Again they are good at this. Despite what might be reported in the media we pay either the same or less than a lot of Europe for drugs such as biologics. In a lot of cases European countries subsidise our discounts which is nice of them. Then locally there are governance arrangements in place to prevent inappropriate use of drugs.

Its probably seen as bureaucracy gone mad but its done with the right intentions and keeps the finance people happy as well

[Boosted LS1]

I've been immuno suppressed for the last few years. I carry on as normal but avoid people in confined places for obvious reasons. A benefit is that I'm 'in' the system so have regular consultations and check ups at the hospital for monitoring purposes.

[Prof Prolapse]

AdamAJP said:

A close relative developed an autoimmune disease so I did a little reading on top of some learnings from the early part of my career in asthma treatment (pharmaceutical side). I came to the conclusion that there has to be something in the fact that autoimmune diseases are a developed world problem.


An evolution of the “Hygiene Hypothesis”, this might be worth a read, even if not for the squeamish…

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC16187...

I hope you find a regimen that gives you some decent relief from symptoms.

It's been widely documented since at least the 90s that in many instances immunological issues are a developmental failure. I'm not aware it's been overturned, but I've not studied immunology in over a decade, so someone more learned may come along.

The logic used to go that people from areas with groundfrost (thus fewer parasites) and poorer air quality owing to higher toxic emissions particularly diesel particulate (who knew the filters actually made sense?) go on to develop immune systems which preference a "type 1" inflammatory response, as opposed a "type 2" response which is typically more parasite-response driven.

So inflammation, which is very damaging- especially chronically, becomes a more common and inappropriate response of the body to these individuals. So eczema, asthma, Hayfever etc. becomes more commonplace.

Quite how it relates to the OP however, I'm not sure. When I was taught it we looked at epidemiological correlations between grown frost and poor air quality driven by DEP, and their link to childhood asthma, not sure it's related to Sjorgens and issues like Lupus etc. It could be of course.

The immune system is phenomenally complex and, frankly, extremely crap at times.

Best of luck OP.

[sagarich]

Prof Prolapse said:

Quite how it relates to the OP however, I'm not sure. When I was taught it we looked at epidemiological correlations between grown frost and poor air quality driven by DEP, and their link to childhood asthma, not sure it's related to Sjorgens and issues like Lupus etc. It could be of course.

The immune system is phenomenally complex and, frankly, extremely crap at times.

Best of luck OP.

Thanks. I failed to also mention that I have hereditary spherocytosis and as such I had my spleen removed at the age of 6, which doesn't really help as my immune system is already weekend prior to this disease developing.


My consultant said to update him after 10 days, so just reflecting on the last week. Post steroids I've had a surge or energy, the most I've had in 2 years and global pain reduced by about 80 percent. Cruelly this only lasted 6 1/2 days and then I crashed again. I was hoping for relief a little longer...

[honest_delboy]

https://en.wikipedia.org/wiki/Ulcerative_colitis

which led to a pan procto colectomy so i'm on B12 now every 12 weeks and stuff to slow my peristalsis

https://en.wikipedia.org/wiki/Multifocal_motor_neu...

which among other things presents as phrenic nerve palsy (one of my lungs doesn't work). IVIG every 6 weeks

I was told autoimmune disease have only been around 20-30 years so still quite "young" in medical terms. So it's a bit of a lottery hitting with with steroids, mouse enzymes etc

Ironically i think i read somewhere that bats may hold the key to AI diseases as they live their lives with an immune system just enough to keep them alive but not enough to go wild and cause the issues humans are having. I guess experimenting with bats is not at the top of anyone's list at the moment though.

[21TonyK]

honest_delboy said:

I was told autoimmune disease have only been around 20-30 years so still quite "young" in medical terms.

It's not that they didn't exist its that they weren't really understood. But you are right, treatment is very much "try it and see" in my experience.