Diagnosis finally received: Yesterday I saw a... - LUPUS UK

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Diagnosis finally received

JimCWalker
JimCWalker

Yesterday I saw a consultant specialising in Lupus following a referral from my local rheumatologist who felt that I couldn't have Lupus.

So after 5 years of discomfort, getting an increasing amount of problems including a seizure and at the weekend a minor stroke, I have been advised that I do have SLE. While I dislike the fact that I have an unpleasant disorder I'm glad that I wasn't imagining this and it is real. I have been questioning myself, how much the symptoms are real and their intensity.

Something that became very clear from early in the appointment was that the referral originally sent was not particularly detailed as my wife and I provided a lot of further detail.

We took a list of symptoms; a chronography; printed blood test results from the period we felt the condition started to present and recent discharge letters from hospital. I would strongly recommend asking GP for a print out, our surgery were happy to do this for us when we said there was no hurry.

During the appointment I was given a steroid depo injection (which I'm not going to lie was uncomfortable!) and prescribed Hydroxychloroquine which I commenced this morning.

Still a lot of tests and stuff outstanding in relation to the seizure and stroke but this feels like a step on the right road. I'm still waiting to see how effective the medication is.

10 Replies
oldestnewest

Well done on your persistence. Let's hope this is a start to getting a bit more control and clarity over what has been going on for you x

Hi Jim

As Whisperit says - well done on your persistence so that , although unpleasant news, you do now know what has been troubling your body and can get the correct treatment for it.

When are you expecting to see the Consultant again for review?

JimCWalker
JimCWalker
in reply to Seren65

I think she said three months for a review.

The depo steroid, I'm told, should relieve some of the discomfort while the hydoxy starts to to effect.

Seren65
Seren65
in reply to JimCWalker

Thanks for your reply . I’m hoping the same happens for me next week . Have my first rheumatology appt next Thursday .

Would like some answers and hopefully some advice from her or medication to help and then further follow ups.

Still in limbo land !!

JimCWalker
JimCWalker
in reply to Seren65

Make sure you have your chronology and list of symptoms before you get there, it made a lot of difference to the consultation.

The consultant prescribed meds as soon as she was sure what she was dealing with.

Have you bought a copy of A Patients' Guide to Lupus by The London Lupus Centre? You can get from Lupus UK at a really reasonable cost.

Good luck for next Thursday!

Seren65
Seren65
in reply to JimCWalker

Thanks for all of your advice Jim and also the recommendation about the book. I haven’t got the book yet - will have a look.

I’ve got all of my notes ready - I’m hoping with that evidence , the physical examination and my blood results , I may get a diagnosis.

Hope you’re feeling as well as you can be now you’ve started meds.

Well done on achieving diagnosis. Now at least you can give it a name & the treatment options are open to you.

Hope the hydroxy kicks in soon.

Sarah x

The not knowing is the worst bit, well done for getting through it and remaining sane. Keep the lupus score sheet to hand (sledai-2k.com/sledai2k.pdf) - an increase in 6 points or more means a medication review is needed - and be learned at doctors appointments (academic.oup.com/rheumatolo...). You'll probably soon find you're the expert in lupus! All the best xxx

Like you say it’s obviously not great news having lupus BUT at least you know what it is and will now get the help and treatment you need. Be aware hydroxy takes a few months to work but makes a big difference to most of us.

Good luck and hope you feel a lot better soon x

Paul_Howard
Paul_HowardAdministrator

Hi JimCWalker,

I'm pleased to hear that the cause of your symptoms has been diagnosed (although nobody would wish to have lupus) and that you have been started on a course of treatment. Hydroxychloroquine can take around 3 to 6 months before the full effect is felt, so it does require some patience. I hope that it helps to alleviate your symptoms soon.

Keep us updated about how you are getting on.

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