Skylark! Pretty Please

[beebs]

I know that DQ8 is in there - was just wondering what the others mean - if anything?? Sorry for being a pain!!

HLA -DR 4, 15

DRB1 04, 15

HLA-DQ 6, 8

HLA-DQA1 01, 03

HLA-DQB1 0302/7/8/11, 06

I will NEVER understand this stuff

[Skylark]

I'm not the only person here who can read a gene test.

They tested your HLA-DR genes as well as HLA-DQ. You have two commonly linked pairs, DR4-DQ8 and DR15-DQ6. The DR4-DQ8 pair is associated with celiac, rheumatoid arthritis, and juvenile diabetes. (The DR4 gene is common and not everyone with the gene gets rheumatoid arthritis, so don't worry.)

It looks like they tested your DQA chain but not in great detail. They just verified that you do not have DQA*0505 or DQA*0501 which are the ones thought to confer risk for celiac. The "0302/7/8/11" also means they only tested to see that you have DQ8; they didn't go into great detail to figure out exactly which variant.

In "board speak" you are DQ6, DQ8.

[beebs]

Hmm- I have some type of autoimmune arthritis that isn't showing up on bloods - so that is interesting..

thanks for that !!

[Skylark]

Wow, that is interesting. Sorry to hear it though. Arthritis is no fun.

[beebs]

I'll say - I was diagnosed at 28! I am now 34 and its spreading and getting worse and worse, it goes into complete remission when I am pregnant - so its totally autoimmune in nature...arrgh. I have other things as well but not enough for a diagnosis of anything firm, so I have some sjogren's symptoms, some lupus symtpoms, psoriatic arthritis is a possibility but totally negative bloods - just like the celiac bloods....aiiee!

[mushroom]

I'll say - I was diagnosed at 28! I am now 34 and its spreading and getting worse and worse, it goes into complete remission when I am pregnant - so its totally autoimmune in nature...arrgh. I have other things as well but not enough for a diagnosis of anything firm, so I have some sjogren's symptoms, some lupus symtpoms, psoriatic arthritis is a possibility but totally negative bloods - just like the celiac bloods....aiiee!

Beebs, I have psoriatic arthritis with negative RF - most of us do not test positive on RF in fact - it is one of the peculiarities of the disease. My condition flares and goes into remission periods for a while - I am afraid it is not particularly responsibe to diet. Have you had your sed rate and CRP checked?

[beebs]

Yep - they are always elevated - no by much alot of the time though. I have psoriatic nails as well - which means I have a 30% chance of psoriatic arthritis, think I just have so many different things going on they want to get the diag right? I've been seeing the rheumy for 6 years now and still no official diag....which is a good thing - except when they want me to take those awful medications and I don't want to because I'm not even diagnosed!!!

My immune system is also totally shot, I have developed an infection after every birth of my kids and the last one took 21 courses of anitbiotics to get on top of. Is that what happens to you too, shroomy?

[mushroom]

Yep - they are always elevated - no by much alot of the time though. I have psoriatic nails as well - which means I have a 30% chance of psoriatic arthritis, think I just have so many different things going on they want to get the diag right? I've been seeing the rheumy for 6 years now and still no official diag....which is a good thing - except when they want me to take those awful medications and I don't want to because I'm not even diagnosed!!!

My immune system is also totally shot, I have developed an infection after every birth of my kids and the last one took 21 courses of anitbiotics to get on top of. Is that what happens to you too, shroomy?

Yes, my immune system is in the toilet - literally as well as figuratively Well, it is a lot better now except when I suppress it.

I have had a CRP of over 100 for a couple of years in the past; it did not go down until I started taking Humira shots. I was first diagnosed with polymyalgia rheumatica because that's what my dad was (falsely, I believe) dianosed with, then with RF-negative rheumatoid arthritis, and finally psoriatic arthritis when the psoriasis showed up. All the toenails on my left foot are infected with psoriasis (I keep hoping they are growing out) plus I have had it on my limbs, knees, elbows, palms, soles of my feet, and places I can't even mention . Ever since I was a child I have had every infection in the book, from mumps and measles to continual colds all leading to secondary chest infections to a mycoplasma infection where I thought I was going to die. UTI's (runs in the family - ha!) staph infections, and now, cellulitis at the drop of a hat. Not fun. You and I must be the antibiotic queens of Down Under. No wonder our guts rebelled.

I agree about those awful DMARDS!! Was already intolerant of prednisone, Methotrexate was a killer, diclofenac did in my kidneys, sulfsalazine worked on the arthritis but flared my psoriasis, and then stopped working, could not take leflunomide - have to go to the US to get my Humira because PHARMAC only covers it for people who are - like - dying!!! (I have insurance in the US that pays for it ) But my CRP is under 5 - hey! And my arthritic fingers and toes are still a bit pudgy but my joints are fine, which is great. I think it is important to stay on top of it before your joints start deteriorating. At one point I couldn't bring my index fingers and thumbs anywhere near each other but can make fists now, no problem.

I hope you keep plugging away with your attempts at diagnoses for what is going on with your family. Sometimes life gets really hard for a while. But then it gets better