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V scared - autoimmune issues - Sjorgen's syndrome - anyone know anything?

(9 Posts)
Jackaroo Mon 05-Sep-11 09:24:49

Am seeing the GP again tomorrow.

Have been diagnosed with Pityriasis Rosea several times in the last 6 months, but with increasingly perplexed looks on their faces as apparently most people only get it once, in a very specific pattern, and it disappears after 2 weeks or so.

I have woken up 4 times in that period with patches/lesions on more or less any part of teh body, and itching from head to foot...

I've also been ill (bugs etc) frequently this year, and am very very run down (scary low ferritin/stored iron and Vit. D among other thing). Bad fatigue which is generally put down to small/sick kids etc., but even with a couple of very good nights, I'm barely getting past lunchtime without wanting to sleep.

So, I saw a different gp recently who was more concerned, esp. as I'd also had a couple of UTIs after none in the last 15 yrs or so. She had my some immune test done (ana?) which came back "relatively high", measuring 160 and spotted in pattern (diff. patterns indicating different things) but it could just be that it is high temporarily or mine is just like that.

She gave me steroid cream which really helped, but since then it's exploded again (this last Saturday) and often seems to be when under particularly severe pressure. She did give me a script for oral steriods, but I'm loathed to take unless I've spoken to someone again/found out why I need them.

In the last couple of days my eyes have been really itchy/dry and I've just googled various phrases together and got hundreds of hits for Sjorgen's.

any ideas? Advice - other than not googling medical things? i am so good with other people's illnesses, but have no clue what to think/do next. Should I ask for a referral (here in Oz my doctor will happily say yes, I'm just not sure what kind of specialist I would need or if it's worth it? ).

Thanks in advance.

Anyone able to shed any light

Jackaroo Mon 05-Sep-11 09:26:15

Sorry, bit long, and bad editing..

magso Mon 05-Sep-11 10:29:02

Ihad a raised ANA ( I was ill with pneumonia at the time) and was eventually sent to a rheumatologist but an opthalmologist may be needed too if your eyes are uncomfortable. My second ANA test a year later came back normal ( actually very low) so no further tests were done. I do not know if pityriasia can affect the ANA test although I too have had it. It took months to clear up for me too. I have dry eyes and mouth and use drops ( to add wetness) and occasionally a mouth spray to wet my mouth. I do not have a Dx as yet - but my symptoms are not as bad now so I think my immune system was upset by a flu like virus ( that also kicked off the pneumonia) and is now settling down.
Do you have other symptoms like tiredness? Could you ask the gp what she supects/ would like to rule out and take it from there?

noddyholder Mon 05-Sep-11 10:33:42

Definitely ask for a referral to a specialist in auto immune disorders. I too would lay off the oral steroids until you have a definite diagnosis as they are often the first line treatment for autoimmune condition and if you start taking them and your inflammation dies down you could get a false negative as you will be treating it iygwim. Good luck Venus williams has just been diagnosed with sjorgens and had to pull out of a tournament to rest but reading her story it sounds like she is hopeful of complete remission with treatment x

nightcat Mon 05-Sep-11 11:37:34

Are you aware of the coeliac/gluten sensitivity link with autoimmune conditions inc Sjogren's? This is where body's reaction to gluten shows up by showing in various parts of the bodthrough the process of molecular mimicry.
I would get tested for celiac or even go gluten free to see if it helps as most of treatments you describe only deal with symptoms not the cause and will need to be upped in due time as working against the body.

Jackaroo Mon 05-Sep-11 12:34:10

that last line was very depressing nightcat; especially as I've already had tests and coeliac disease has been ruled out. I'm currently trying to be dairy free (recommended by gp re: continuous URT infections) and am not doing very well with that.. maybe a week of brown rice and chickpeas is in order all around...

thanks for commenting, all of you.

nightcat Mon 05-Sep-11 12:42:32

sorry Jack sad wasn't meant to upset you, it's just I have seen people I know who end up chasing symptoms around the body, all the way down to chemo to "treat" a supposedly overactive immune system rather that treating the cause sad

Diet is a choice, btw chickpeas are not necessarily part of it. Had I not seen my ds changearound on the gf diet, I would not have believed it.

If we eat foods that cause our immune system to react, the only sensible way would be to stop eating them rather than cover up the symptoms.

My ds is not celiac either, celiac is when only gut is affected, but ana reaction to gluten can also damage other organs, celiac is a very small part of the gluten-caused symptoms. Have a search under gluten sensitivity or intolerance, website also has a lot of info on other disorders related to gluten.

Jackaroo Mon 05-Sep-11 13:00:05

I was sort of joking about the brown rice and chickweed, but will certainly will look at hte website; ifI can get rid of all this through food alone I will be unbelievably relieved. Many thanks for the links.

Jackaroo Mon 05-Sep-11 13:00:39

Or even chickpeas????

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