LUpus Patients Understanding and Support
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Lupus or Not?

I have been admitted to the hospital twice since April. I have very odd symptoms, at first everyone said it was anxiety but now I have swelling in my hands and knees every morning when waking up. I just got out of the hospital late yesterday evening and the doctor said I think you have either RA or Lupus and I'm referring you to a rhemtalogist. My bloodwork is out wack, my symptoms are strange and I feel like crap!

8 Replies

So sorry you are feeling poorly. Scary to not know what is wrong. Fingers crossed the rheumatologist gives you a thorough examination and lab work up (including urinalysis) so you can get properly diagnosed and treated. The best advice I can give you for that appointment is to jot down all your symptom in list form, with the worse ones at the top. Include when they started, the duration as well as how often you get them if you can.

Good luck!

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Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.

This must be a very anxious time for you. Not knowing can be scary. However,your rheumatologist IS looking after you. The worst thing is getting a diagnosis only to be told it is wrong. There is no one blood test for SLE and sometimes specialists wait and observe you to see if any more symptoms develop. This does not mean your symptoms are not going to be treated.

The most important is to see a lupus specialist as not all rheumatologists specialise in lupus and some may never have seen or treated a patient with lupus. In the UK, St Thomas' Hospital Lupus Unit is a centre of excellence.Its Director is Professor David D'Cruz. I do not know where you are living but I hope your rheumatologist is knowledgeable - the fact they have SLE in mind, is encouraging.

Even IF you have a diagnosis, there is every good reason to be hopeful. Diagnosis, treatment and management has really developed over the last 40 years. Most people lead a normal life, get married, have children and some even come off all medication.

We also have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.

When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/".

Finally, please go to: and Sign Up.

I look forward to talking with you more!

Sometimes we need to talk to people who understand and who are not family or friends.

With good wishes!


Disclaimer: No attempt is made to diagnose or to make any medical judgement. You are advised to seek the advice from your own physician. LUpus Patients Understanding & Support (LUPUS) is not a substitute for your own doctor.

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How are you Beth?


Still swollen, sore body, some heart palpitations, and fatigue. Waiting to get in with the rheumatologist. Yesterday, the fatigue and no energy was really bad. Thanks for asking!


Hi when yousay a Lupus specialist! Is this just a rhumy that kniws about Lupus or only deals with lupus? I have only seen a rhumy and dermo plus fir dermo i went to the salford royal manchester photo sensitive clinic for a week


Not all rheumatologists are expert in lupus. Some have never seen or treated patients with lupus. A dermatologist will (or should) know about discoid (skin) lupus. Only a small percentage of people with lupus of the skin will have systemic lupus erythematosus. The two are different.

If you have SLE, my recommendation is to see a rheumie who sees and treats patients with lupus on a regular basis. St Thomas' Hospital, London has a specialist lupus clinic. Its director is Dr David D'Cruz. Your GP can refer you. You. can also stay over night at The Simon via the NHS.

There are those at the LuPUS Message Board who knowmore than I about The Simon. St Thomas' Hospital has an excellent lupus clinic and see patients from all across the UK.


If you want to talk, please do so either here or if you want more privacy, join the LuPUS Message Board.

You can also contact me: roz [at] [lupus-support] [dot] [org] [dot] [uk]


How do I join the lupus message board? Thanks


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