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LUPUS UK
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Help in preparing to see specialist, please.

Hi, this is the first time that I am Posting on any discussion boards, and I'm not sure if I'm in the right board but welcome any feed back to help me.

I live in Australia so I don't know is the values of blood results are the same as in UK, I'm going to see a Rhumatologist later this month and would like to be prepared.

I have Sjogrens, and my GP seems to think that I may have SLE overlap. I also have chronic kidney disease stage 3, Osteoarthritis and osteopenia. My last bone scan results was at 1.7

My symptoms are, extreme tiredness, extreme dry eyes and skin, sensitive to the sun, headaches, lightheaded and dizziness, low blood pressure . bad coughing fits that will take a while to get over.

I did have joint pain, but it now seems to be better, no swollen joints, and I don't seem to have a lot of the symptoms described on this board.

I've had 2 lots of blood tests and the last one was slightly better.

ESR is raised at 52. Full blood count is low on white cells 4.5. Anti dsDNA is low 37.

CRP is low 2.9. eGFR is low at 44 and has been low for more than 6 mths.

Urea test showed creatinine at 112, and potassium at 3.6.

I am trying to make notes of questions to ask,

At the moment I am taking blood pressure tablets with a directic in it, panadol osteo, nasal spray and hylo fort eye drops. I also tend to get a lot of eye infections and end up having to get stronger eye drops.

I'm sorry for this long winded posting but I hope that someone can help me make sense of what is going on.

Thanks very much

Jean

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Hello Jean,

Lots of people here don't have a formal diagnosis of SLE/lupus and lots have the sorts of problems that you describe. So I bet you will find some useful advice here.

Having said that, I don't have the competence to suggest what might be gong on for you. My only thought would be to be clear in your own mind what it is you want from this first appointment. I often start my appointments by telling the medic what I need from the appointment and have found it a useful discipline to stop me using up the time telling endless stories about my various complaints but that might not be terribly helpful. Good luck, anyway x

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Hi whisperit , thanks for replying, I wish it would just go away, but it won't so I will make sure that I walk out of the Rhumatologist surgery with as much info as I can, I'm so scared that my kidneys will fail, so I have been reluctant to take a lot of medication. I hope that the specialist will be easy to talk to, and that I can get a better understanding of this Lupus.

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Yes, as you say, it can be a scary business. This forum is usually a very supportive place, so I hope you'll feel able to keep in touch and let us know how it goes x

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Hello Jean and welcome to this HealthUnlocked community/ board/ forum! I don't really have much to add to Whisperit's excellent reply. I was originally diagnosed with RA but rediagnosed with primary Sjögren's last year. I do have some of your issues, including joint pain that has disappeared now and been replaced by a very widespread small fibre neuropathy.

I'm on Mycophenolate/Cellcept, which is an immunesuppresant DMARD that is often used for those with CKD as it was originally only licenced as an anti-rejection drug following kidney transplants.

It might be useful to discuss this medication with your rheumatologist as one of your objectives perhaps? Maybe you could look it up first.

I also take Losartan for Hypertension and Raynauds and Hyloforte drops, Artelac gel and Duraphat toothpaste plus Salivex pastels.

I live in Scotland.

Twitchy

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Hi twitchytoes thanks for the welcome, I will look up mycophenolate/cellcept so I will be prepared if the Rhumatologist suggests taking it.

I am taking candesartan 16/25 for high blood pressure, hylofort, panadol osteo and nasal spray. I also take omega 3 daily.

I have always been reluctant to take medications, but I think that I may need to accept the fact that I have to now.

I live in Perth Western Australia,

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Hi Jean,

We published a short guide on visiting your doctor which includes helpful tips and information to help you prepare for your upcoming appointment. You can access the guide here: lupusuk.org.uk/wp-content/u...

We also have a blog article on this topic which includes experiences and tips from other people with lupus. You can read this at lupusuk.org.uk/getting-the-...

We offer a free information pack containing factsheets and guides on the symptoms and diagnosis of lupus which you can download here: lupusuk.org.uk/request-info...

Please keep us updated, all the best.

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Hi Chanpreet_Walia,

Thanks for the links, I will have to do some reading tonight, hopefully I will be able to go to the specialist with information about Lupus and possibly understand a little of what he's talking about lol...

I live in Australia and our healthcare​ system is not the same as in UK,

I'm going private and still had to wait more than 3 months. If I was to go on the public health system it could take twice as long or more.

Thanks again

Jean

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