HLA-B27 anyone? tell me your syndrome

[Bribie G]

That's an inherited genetic allele on chromosome six that is responsible for:

Psoriatic Arthritis
Ankylosing Spondylitis
Iritis (Anterior Uvieitis)
Gut problems.

About 8% of the population have HLA-B27 but most sail through life with no problems, wondering if anyone here has problems, maybe compare notes.

I drew mostly the full deck: arthritis mainly tendons joining bones and huge pain in knee, psoriasis, iritis (eye tries to destroy itself) and a bit of spinal calcium deposits but not too bad in my case.


Recent research targets infection by the bacterium Klebsiella in the gut that has genetic sequences on the bacterial DNA that mimic HLA-B27 and flares up when you eat starch, as that's what Kleb eats.
I don't eat bread and eat a bit of rice but recently ate, in two days, more bread and chips than I'd eat in two months and ended up on emergency steroids as I couldn't stand up without agony :unsure:

Life is meant to be interesting :beerbang:

Beer has no starch, trust Iodine test.

 

[panspermian]

Hi there,
What a weird place to start such a topic...,
I suffer ankylosing spondylitis and was diagnosed about 6years ago. I have had many symptoms since a teenager but was only diagnosed in my late 20's when my condition became increasingly worse.
Apparently alcohol inflames my condition...... (Also provides temporary relief).
Some days I find it difficult to walk, others, although I always have pain somewhere, no body would know. When I do feel mobile, I usually do work of some kind that aggravates my condition. It is embarrassing trying to explain to people I can't do a task when to them I look able bodied. It is depressing, I often feel my wife doesn't understand.

I am in need of a career change due to my condition and am currently in the process of doing a science degree at uni.
As my body has high levels of inflammation, I am regularly tired. The lethargy that comes with this condition can be extreme. I find it hard to study, hard to do anything I want to.

There were days during my 20's when I would be bed bound, unable to walk. I don't get that so much these days but the inflammation has spread to many other parts of my body.
My eyes have become really sensitive to bright lights. I sometimes wear sunglasses while driving at night. I wore sunglasses during a NIN concert recently.

There is a place on FB called humira junkies. (Humira is a medication some of us take). It is a good support page

 

[jyo]

I have Ankylosing Spondilitis and sacroiliitis, but I am B27 negative. I'm 36 now but in hind sight, symptoms probably started when I was about 26. Also had a bit of psoriasis when I was a bit younger too. Diagnosed four years ago.

It really sucks. Can't play cricket or footy anymore. I am so stiff in the mornings (haha) and I have a strict stretch and motion regime that I have to follow everyday. Excercising is paramount to maintaining mobility. I honestly haven't focused on my diet as a cause, but I think I am ready to have a look. l do most things, but have to take it easy. At least I can still brew!

I have been though a few trials of self injected auto-immune suppressant medications inclusing Enbrel, Simponi and now Humira. The Humira is working really well, and really dulled the flare ups and daily pain, but I am still in pain every fecking day. The meds have a few side effects, including liver stress, so I have to watch this

Was actually wondering the other week about how many of you guys suffer from this kind of disease. Good discussion, Bribie. Keep it coming guys.

Cheers.

 

[tourist]

My late dad had ankylosing spondilitis and suffered through it heroically, so I feel for anyone living with chronic pain. I think he learnt to accept the pain and get on with things at a suitable pace. I don't know if he ever explored the link with starch.

I also did a science degree and an assignment looking at the possible link between HLA-B27 and infection by an antagonising agent (bacteria/virus) that would activate it's expression. Completely forgot the content, except something about MHC proteins, blah, blah, blah....

That was in the late 90s and had no idea my dad had it (I just thought he had a bad back and was being a bit soft for the last 20-odd years)

 

[Bribie G]

I'm currently completely pain free and no inflammation, went onto a "Paleo" diet of meat, fish, chicken and fruit / veg. So far I have re introduced rice and eggs and still good. The next step will be dairy products such as cheese and yogurt. I make my own yogurt and have about 5 kilos in the fridge. I'll give it a big whirl over the next few days and if I relapse..... shit I love dairy :unsure:

Update: I saw a $250 specialist man and according to the blood tests I am actually not HLA-B27, like jyo, and no rheumatoid factor so I have Seronegative Spondyloarthropathies **** Yeah. Have classic Psoriathic Arthritis and Xrays show calcium buildups between vertebrae, but at my age probably I won't live long enough for it to progress to full AS.

 

[jyo]

Ok, I had a decent read last night about starch in diets affecting flare ups. I have a problem though; I LOVE bread and grains. I eat wheat bix for brekkie, a meat and salad sanga pretty much everyday for lunch, and dinner usually consists of pasta, spuds or rice....so yeah, I eat a lot of starch.

But...I am keen on having a go to see if it helps. I am scratching my head how the hell I'm going to satiate my need for sandwiches and potatoes.

 

[panspermian]

Started a new drug 'simponi' on Monday. Injection once a month.
Doctor says I shouldn't drink alcohol but I got 60 bottles of homebrew to get through....
I guess one bottle occasionally should be alright.

Simponi is a TNF blocker. From what I can gather from the leaflet, it is a protein synthesised from human antibodies.

The wife's pregnant, really really hope I don't pass this on.....

 

[panspermian]

I have Ankylosing Spondilitis and sacroiliitis, but I am B27 negative. I'm 36 now but in hind sight, symptoms probably started when I was about 26. Also had a bit of psoriasis when I was a bit younger too. Diagnosed four years ago.

It really sucks. Can't play cricket or footy anymore. I am so stiff in the mornings (haha) and I have a strict stretch and motion regime that I have to follow everyday. Excercising is paramount to maintaining mobility. I honestly haven't focused on my diet as a cause, but I think I am ready to have a look. l do most things, but have to take it easy. At least I can still brew!

I have been though a few trials of self injected auto-immune suppressant medications inclusing Enbrel, Simponi and now Humira. The Humira is working really well, and really dulled the flare ups and daily pain, but I am still in pain every fecking day. The meds have a few side effects, including liver stress, so I have to watch this

Was actually wondering the other week about how many of you guys suffer from this kind of disease. Good discussion, Bribie. Keep it coming guys.

Cheers.

I was searching low alcohol beers and saw your post in there. Any chance this is from high levels of liver enzymes?
I have had two injections of Simponi and my liver enzymes have shown to be triple what they used to be. My doctor says it is alcohol related, I beg to differ. Either way I'm now refraining from alcohol for the next month or two. My next blood test should prove whether alcohol or Simponi is the culprit.
When I do get back to brewing I am keen to make a low alcohol beer as my brews are usually around 6-7%!
There is an oat malt stout recipe I found in a magazine, 3.5% which I wanna try.

After two injections, no improvement in pain but blood tests show my inflammation has dropped significantly. The drug is working, I just have to hang in there. If my liver enzymes continue to be elevated, I doubt I will be continuing with it.