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Lupus? Psoriatic arthritis?

(32 Posts)
PigOnStilts Sat 06-Jul-13 22:00:30

Ive been suffering from aches and pains for four months, random bits flare up like my left knee, right big toe, knee caps etc.

I went to GP after days couldn't get off sofa with sheer exhaustion....I've had glandular fever which knocked me sideways for a couple of years, so knew it was more than dealing with newborn.

I also have psoriasis so was really worried this was psoriatic arthritis. They did blood tests and no RF (which supports psa hypothesis) but also, my antibodies were high 1:640 homogeneous which could indicate connective diseases or false positives....I keep hearing conflicting advice and don't trust my GP fully as he's overly reassured me before and he's coming across as quite dismissive....

My test has been resubmitted for anti-dsdna which is used to confirm lupus..afaik.

I think I just need some reassurance or for somebody else to be straight with me. Should i be worried about these results or could they ave been caused by a virus? I'm concerned, not overly so, but I've had a rash on my chest for four years, it came up when we moved to Spain, it's like sunburn that won't go away and I react badly to the sun, feel really ill. Angry and under siege, can't stand the heat or the light and feel sapped of energy. I was in Spain last week and only felt normal on days where I'd been out of direct sunlight all the preceding day...

Wobblypig Sat 06-Jul-13 22:03:55

Lupus is associated with photo sensitivity and arthralgia, you need to know ana, ena , ds DNA ab levels and complement , it may also be worthwhile looking at your uric acid level given your psoriasis and an ACE . Presumably you have been referred to a rheumatologist.

PigOnStilts Sat 06-Jul-13 22:09:22

They did ANA (do you know if mine is too high for FPos or viral?) I get conflicting info on that...

What's complement? And ENA?

I'd just like to know what it is....I was so bad last week I almost bailed out if the wedding I was there for....bad plantar fasciitis etc.

piprabbit Sat 06-Jul-13 22:10:58

Sorry you are feeling so rough and having to wait to diagnosis.

I have Lupus and it's not easy to get a diagnosis - it's tends to be what's left when everything else has been ruled out.

I'd be pushing your GP for a referral to a rheumatology consultant, because the immune system diseases are such a bugger for the non-specialist. Make list of all your symptoms, aches, pains, rashes, reactions to sunlight etc. so that you don't forget or ignore any odd signs. Do you react to insect bites too, have problems concentrating etc.?

Whatever the problem is, there should be some treatments that can improve your quality of life no end.
Good luck.

PigOnStilts Sat 06-Jul-13 22:15:58

Can I just ask, pip, did you have a high ANA score? And are you dramatically worse in the sun?

LilyAmaryllis Sat 06-Jul-13 22:16:45

rash-sun sensitivity-muscle pain-fatigue sounds like lupus or a similar auto-immune disease. Two months ago I was diagnosed with dermatomyositis, in the same spectrum as lupus.

The good thing is there is treatment.

Mine was only diagnosed when I was referred to a dermatologist. Can you get a referral?

Since I started the medication I have no muscle pain and the rash is much more under control. Still quite fatigued especially when I've been in the sun. But its only 2 months in, I'm on methotrexate which is meant to be a gradually-acting medication so I've been told.

Get that diagnosis (push for referral if necessary) and get treatment!

And stay out of the sun, easier said than done right now I know. Big hat, drapey scarf, etc

piprabbit Sat 06-Jul-13 22:21:11

TBH I've been in remission for many years now and have been very lucky not to have had more flares - so I can't remember the different tests and their results - sorry.

With hindsight, I realise that my first major flare was probably triggered by a holiday in Australia (lots of beaches and swimming in Far North Queensland). I got off the plane home almost crippled with pain in my jointsand took weeks to start feeling a bit better - but I didn't really recover from it until I was getting proper treatment. Since then, I try to avoid too much sun, keep myself covered up etc. because I don't want to do anything that will trigger the disease back into life.

PigOnStilts Sat 06-Jul-13 22:29:07

Oh! I didn't realise you could have a bad flare and then go into remission...well done! How long? I'm just a bit stuffed if this is anything like lupus because we plan to move around the world living in exotic hotspots but ... We just couldn't if I felt the way I do right now sad

I know Im Getting ahead of myself but suns a definite trigger for me.

piprabbit Sat 06-Jul-13 22:41:21

I first got ill in 1996 and had my major flare in 1997.
I was in the process of being investigated when I suffered a major bout of septicemia/pneumonia/pleurisy in 1998. Not directly due to the Lupus but my buggered immune system didn't help. While I was in hospital (for many weeks) I was having a battery of blood tests every day - the end result was that they diagnosed Lupus much quicker than if I'd only been seeing my GP every few weeks.

I was on medication for 2 years, then came off it all (with careful monitoring) to start trying for a family. I never went back on it (touch wood). The last time I saw my rheumy consultant was in 2004 - 2 months after DC1 was born. I took her to see him - he was absolutely brilliant throughout my whole journey.

Now I just need to be aware and go to the GP if I start getting symptoms. So far so good

There are lots of ways of coping with Lupus, especially the sun sensitivity. I belong to Lupus UK and their magazine often has special articles around the topic of sunlight.
The Eclipse Support Group is aimed at people with photosensitivity and seem to be a really useful group.

I'm sure you'll find a way through all this, whatever your ultimate diagnosis. One step and one spoon at a time.

piprabbit Sat 06-Jul-13 22:44:31

BTW I got ill in 1996 - but some of the symptoms had been there for many years, once I knew what I was looking for.

PigOnStilts Sat 06-Jul-13 23:02:41

lily doesn't methotrexate knock you out? I had a friend on it...he said he had to discount following day as he had to sleep it off!

pip did they not make you do reg blood tests as well? Dd they ever tell you what might have put it into remission? I know it can be triggered by hormones, just wondering if it could ave been hormones again?

piprabbit Sat 06-Jul-13 23:12:19

I had regular blood tests (started out every two weeks, gradually stretched to 6 monthly with rheumie asking for extra ones if he needed them) until 2004. They had been normal for 18-24 months before he discharged me with strict instructions to go back in the event of a flare.

I had a lot of tests during my 2007/8 pregnancy (I was worried about clotting) and nothing every came up outside normal range.

They didn't know why it went into remission. Hormones might have been a factor (I've heard a lot about pregnancy changing the pattern of people's disease). I think I am very lucky, but it's not unheard of. I did wonder if the relative speed of diagnosis and getting effective treatment fairly quickly might have helped.

LilyAmaryllis Sat 06-Jul-13 23:28:58

No the methotrexate doesn't seem to have any immediate effects on me like that. The doctors take regular blood tests to check my liver and kidneys aren't affected, all seems fine so far.

Thankyou Pip for the Eclipse link, I've discovered a whole world of SPF50 clothing I never knew existed!

MrsHoolie Sun 07-Jul-13 10:38:05

Poor you. My DP has just been diagnosed with Anca Vasculitis. It has taken four months for a diagnosis and he is really weak now but hopefully the meds will help.

We thought it may be an arthritis but the rheumatologist said it just wasn't adding up.

I hope you get a diagnosis soon.

Wobblypig Sun 07-Jul-13 21:04:34

Anca vaculitis has high chance of burnout so hope there. Methotrexate like all immunosuppressants, immune modulators has a highly variable effect.

PigOnStilts Mon 08-Jul-13 06:37:58

Hope your husband recovers quickly, it sonds like a painful condition, hoolie.

pig just wondering, do any other AI diseases burn out r are they all chronic? Thought they were

Icantstopeatinglol Mon 08-Jul-13 06:57:38

Hi pig, I think the first thing you need to do is get referred to a rheumatologist. GPs only know the basics of problems like psa and lupus etc. I knew for years I couldn't have so many individual problems and that they must be linked in some way but gp dismissed me more than once. I've now been diagnosed with psoriatic arthritis and waiting to start methotrexate. I don't know much about lupus but regardless of that you need to see a specialist. Plus just because the rheumatoid factor hasn't shown up in your bloods means nothing, it doesn't for alot of people.
Hope you get sorted asap, push for a referral! If it is psoriatic arthritis then early diagnosis is crucial to avoid joint damage.

SorrelForbes Mon 08-Jul-13 07:26:19

LilyAmaryllis YY. This also sounds very similar to my friend's symptoms. She has dermomyositis too.

LilyAmaryllis Mon 08-Jul-13 10:08:26

Sorrel how is she doing, is she getting better? A horrid symptom I also have is hair loss. Can't bear to look at old photos of my luscious locks! Has your friend suffered hair loss, and if so is it coming back?

SorrelForbes Mon 08-Jul-13 12:33:17

She is a year on from diagnosis and doing very well. She is slowly reducing her meds and is back at work part time. She still has chronic fatigue on occasions and has problems with her vocal strength. She did lose her hair but it is growing back (she's stunning and is rocking a very cool short style at the mo!).

PigOnStilts Mon 08-Jul-13 22:04:33

Just a wee update: my dsdna test came back with reading of 6.9, apparently this is fine, (acc to receptionist) so I'm hoping this is just PSA if not a virus smile

LilyAmaryllis Tue 09-Jul-13 10:06:56

Thanks Sorrel that's great to know. Good luck to your friend, she's had it much worse than me.

Pig I think I would still be tempted to see a specialist (rheumatologist or dermatologist). I think my blood tests were inconclusive but the physical symptons overrode that evidence.

PigOnStilts Tue 23-Jul-13 23:05:00

I'm getting worse, have doctors appointment tomorrow...

No strength upper arms
Aching feet, ankles, legs, arms and shoulders
Plantar fasciitis type pains in mornings
Stiff fingers in mornings
Ultra sensitive skin, couldn't bear anything touching my left keg yesterday so had to tuck skirt into knickers
Feel sapped after weekend outside (in shade all the time)
Keep dropping things
Do everything solo slooooowly I'm driving myself crazy.
And if course the rash on chest...not so bad but my son asked me what it was so its def noticeable.

I'm asking for a referral and vit d test tomorrow.

Does anybody have any advice? He just prescribed me dicofenac last on anti inflammatory isn't useful...I just want a dx

wHAT IS THIS? I'm so frustrated.

LongTimeLurking Thu 25-Jul-13 18:28:27

My understanding is with these auto-immune inflammatory disorders that sometimes the symptoms and exist for quite a while before the blood tests become abnormal. So it might be worth getting everything rechecked in a few months if the problem hasn't gone away.

Did they check for ESR for inflammation?

Hormonal imbalances like low thyroid can cause fatigue and muscular/joint pain.

Could be some kind of post viral fatigue or fibromyalgia type syndrome.

LongTimeLurking Thu 25-Jul-13 18:29:00

* should read: The symptoms can exist

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