Ana results: Hi after getting diagnosed with... - Behçet's UK

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Ana results

jayneperkind profile image
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Hi after getting diagnosed with bechets disease 4 years ago I've had a really bad time of it lately and all my blood tests have come back abnormal..my liver function is particularly bad so my doctor decided to test me for the ana which has always been negative but lo and behold it came back positive so their saying could be lupus now..has anyone else experienced this ?

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jayneperkind
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7 Replies

Yes! I have!!! The positive thing is that the treatment for Bechet's (often humira) is most likely responsible for you having had such a miserable time of it, recently. My Rheumy was up in the air, because she had enough to diagnose me with either or both, including pos ANA,-and that was a problem because if she picked incorrectly, and it was Lupus-the Bechet's treatment would push me into bad flares, 'unremittingly bad flares, if not hospital bad flares.'. I was allergic to plaquenil, and dislike steroids, intensely, so we went with methotrexate injections and steroid 'chasers' when needed, tramadol, phenergen, all the normal stuff, but it was not quite right. However, treating me for lupus (Benylsta) would do nothing, if it was bechet's. So- we chose to go continue with the Methotrexate injections, add weekly Benlysta injections and see where it went- and it has been a wonderful improvement!! My Rheumy is still a little surprised because I'm the first pt she has had in twenty years, who has been open about having genital ulcers, as well as oral, naso, ear sores (who else gets those??) I was finally able to isolate the pain that was not joint-I kept saying 'there is all over pain, with really specific origins, that are muscle-not joint-burning, ripping, horrid pain that is not lupus pain. Once we were able to really start to reduce the lupus pain and I was able to describe, and she was able to palpate and see what I was talking about, she diagnosed fibro and I started Lyrica, last week. It really is helping, as well. I was a 'normal, single, mom over the holidays' all last week and into this week. I crashed and burned last night, and emailed her to let her know. She was too sweet- she expected this, everyone who gets significant relief over does it, so we are going to work on learning my bodies new boundaries and what cocktail will help most!

I hope that somewhere in this there has been something helpful, if only the fact that you are not alone!!

sending you gentle, healing, hugs

I’ve had a positive test for CREST syndrome in the past but has come and gone several times. Right now my stuff seems to be negative. I was initially diagnosed with lupus by one of my rheumatologist years back because of the positive ANA. I do think I have some sort of autoimmune tendency hanging around in the background but it’s never gone full blown. My current rheumatologist of course still wonders now if it’s possibly something else other than Behcet’s because I’ve had serious neurological issues lately that don’t show up on any tests. Anyway my numbers are consistently positive but since I’m being treated for Behcet’s they don’t really check those numbers anymore.

Expectthebest profile image
Expectthebest

What are your symptoms? Uveitis must be present for BD diagnosis. What medications are you on? Maybe that's why liver enzymes are elevated? Did rheum ever do skin pathergy test? Perhaps second opinion would help?

RayRay121 profile image
RayRay121 in reply to Expectthebest

I do not have Uveitis but i been diag with BD.

Here is my Diag:

Behcet''s disease: previously diagnosed based on history of acne for

most of life, possible pathergy with noted > 2mm hyperpigmentation

surrounding antecubital IV performed 5 days ago, arthritis involving knees

and ankles, HLA B 51 + status, recurrent oral ulcers and possible genital

scarring lesions. totaling 5 points according to revised international criteria

in reply to Expectthebest

No, Uvietis doesn’t have to be present for a Behcets diagnosis. Some people have no eye involvement at all.

Legomum profile image
Legomum

I was diagnosed with Behçet’s aged 24 in London after decades of symptoms. Disease controlled well with prednisolone oral steroid and immunosuppressant azathioprine for many years. Then big flare up in 2015 so started anti-TNF infliximab infusions which worked well. Until I developed antibodies so infliximab was no longer effective. I then started getting rash on skin, face and scalp which caused hair loss. I had developed lupus for the first time and test showed ANA positive. Biopsy of scalp showed lupus but it was only “discoid lupus” (of scalp and skin) not a systemic disease and it is rare for that to become systemic which is reassuring.

I was changed to new medication to control the behcet’s, which is more of an issue that skin and scalp lupus. So started new anti-TNF Humira injections and that improved the Behçet’s ulcers. Continued my prednisolone and immunosuppressant Medication.

The lupus actually improved with a “short sharp burst” of oral steroid prednisolone. However that has all it’s annoying side effects of taking 40mg pred and then reducing eg insomnia. I am now down to pred 10mg and ok but aim is to get back down to my usual maintenance dose of 5mg Prednisolone for Behçet’s.

Hope that is not too much info! I am not sure how often clinicians check for side effects of the new (expensive) anti-TNF drugs for Behçet’s or when people developed other autoimmune conditions on them. When weighing up the pros and cons I would rather not have the Behçet’s ulcers and other symptoms and can survive the discoid lupus, although definitely self-conscious about hair loss etc. We are learning as we go for sure!

rooser1 profile image
rooser1

My rhuematologist put it like this to me "once you're auto immuny- you're kind of autimmuny all around." I have never tested positive for ANA, but i did come back speckled heterozygous for sjogrens once, and then negative later.

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