LUPUS UK
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New and awaiting ANA bloods

Hello. I'm hoping someone might be able give me some advice please.

I'm waiting on my first referral appointment to a rheumatologist, as my doctor is stumped.

I'm constantly EXHAUSTED, riddled with daily headaches, poor concentration, on and off depression and the occasional unexplained aches in my wrists that come and go.

My latest ESR blood was 57 and last night I got back a few results from the job lot they took Tuesday.

My serum creatine kinase level appears to be through the roof - 292 the levels it's should be within are 25-165.

The receptionist just said they will recheck that one in a month. Should I be worried by that result?

Thanks if you continued to read my waffle lol.

10 Replies
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Hello Chan1986,

I was recently called in for repeat bloods after I had raised CK and

ESR levels - actually very close to yours - but on repeat testing 10 days later, they had dropped

somewhat . The conclusion was that although there was no obvious

cause, there was also no need to do anything (a CK of 292 is elevated, but only modestly so - they can go into the thousands!)

As I understand it, neither of them are diagnostic of any specific condition, and can result from a wide variety of causes.

Have you seen the LupusUK leaflet on the symptoms and diagnosis of SLE? That might help? lupusuk.org.uk/wp-content/u...

Hope things turn out OK - let us know how it goes! x

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Thank you so much for taking the time to reply. You've actually made me feel less anxious. The leaflet is great too. How long should I wait to expect the ANA results Back, they were taken last Tuesday. X

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You're welcome. I don't want to pretend I know what is going on for you, but anxiety is unlikely help! I'm afraid I don't know how long it will take for your ANA. Mine usually take about 10 days, but it all depends on the local labs and communication between clinical departments etc. Keep in touch x

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Would advise you read, LUPUS: DIAGNOSIS & TREATMENT pub LUPUS UK 2009 formerly known and published as Lupus - a GP GUIDE TO DIAGNOSIS. Each chapter is written by a specialist/professor. All the tests are there with explanations. Not up to date at 2009 but it's a good reference source

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Hi there. I have Sjögren's rather than Lupus but my renal and liver bloods are often out of range - PV/ ESR and CRP are always high.

This is a non specific marker showing that you have systemic inflammation - which usually means autoimmunity of some sort unless you have an infection. I think an elevated CK is usually related to muscles - it shows high in Myositis - but it's not a test I know much more about I'm afraid. However Whisperit's comment sounds reassuring.

All rheumatic diseases sit on a large spectrum and only a rheumatologist can diagnose whereabouts on the spectrum you may sit. Fingers crossed your appointment goes well and you get answers and effective treatment.

It's a good idea to take photos of any rashes or swelling and keep a list of symptoms and how they impact on you. Best of luck.

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Thank you so much for taking the time to reply. I will make sure i write everything down, ready for when I do get my rheumatology appt. Hopefully I get some more info when my ANA bloods come back. X

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Would advise you read, LUPUS: DIAGNOSIS & TREATMENT pub LUPUS UK 2009 formerly known and published as Lupus - a GP GUIDE TO DIAGNOSIS. Each chapter is written by a specialist/professor. All the tests are there with explanations. Not up to date at 2009 but it's a good reference source not only for GPS

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Hi Chan1986,

Almost 90% of people with lupus report experiencing fatigue making it one of the most common symptoms of lupus. We published a blog article on managing fatigue which you can read here: lupusuk.org.uk/managing-fat...

Headaches, a lack of concentration and depression are all symptoms associated with lupus. To find out what other symptoms are associated with lupus, you can download or request our free information pack here: lupusuk.org.uk/request-info...

We published a factsheet on LUPUS: and Depression which provides information on services and support that is available to you. You can read the factsheet here: lupusuk.org.uk/wp-content/u...

It is possible for people to experience periods of remission where their lupus is controlled and they feel relatively better; reducing the signs of their symptoms.

Sometimes, certain situations can be overwhelming which is why talking to someone can help relieve worries and anxiety that you may have. If you would like someone to speak to, we can provide you with LUPUS UK contacts who you can chat with over the telephone. These contacts are volunteers who mostly have lupus themselves; they are not medically trained but are there to offer support and understanding. If you would like a contact to speak to, you can email me at chanpreet@lupusuk.org.uk .

Please keep us updated, wishing you all the best.

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Hello. You've had great replies. Can I ask, on what basis did your GP refer you to Rheumatology? Was it on your symptoms or have you had other results from blood tests that concerned him/her? Just wondering. Have they been able to rule out other causes, such an aneamia, pernicous aneamia, diabetes, thyroid issues? It's normally a case of ruling other causes out, at the very beginning. Lupus can be extremely difficult to diagnosis, it's sometimes known as the great mimicker. So hence the average diagnosis takes 7.5 years. I remember my GP ordering a lot of blood tests initially, not just Anti DS DNA, ANA, ENA etc but all the tests for those illnesses above, so as to rule them in or out as causes for my symptoms. I hope we have all helped a little. Take a look at the Lupus UK website, there is great and reliable information there. Best wishes. Wendy

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Thanks for everyone's replys.

So I'm feeling rather agitated right now. I phoned GP for results, was told all normal apart from ANCA bloods, and That a nurse practitioner would call me back. I've just called surgery and nurse has gone, receptionist said it should be a GP anyway. So I now have to wait for a call tomorrow.

I asked the result were exactly she said -

ANCA 3rd componant is 1.6

?????

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