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Junior Member
Posts: 1
If I call during a bad flare, should I have to wait 2-3 months for an appointment? By that time, my symptoms have usually improved or are different.

I didn't even know I had a lupus diagnosis until the paperwork suddenly had lupus as a diagnosis after my second round of bloodwork. I thought i had sjogrens. I asked what this means and what I should do at my next appt (6 months later)but the Dr was thrown off because she thought I always knew I had lupus. She told me to come in during a flare so she could give me more info. But when I called during a flare I was told I would have to wait 3 months for an appointment.

I thought this rheumatologist was just not very good, but when I moved last year, the new rheumatologist was worse. He never received my records, but didn't see the point in bloodwork because I am already in plaquenil. I told him about my symptoms and my worries that my kidneys hurt every time I have a flare and he said I can't have organ damage as long as I'm on plaquenil. Is this even true? So I have a bad flare right now and I've got 2 months to wait for my appt. Is this as good as it gets? I'm not as concerned about rash,joint pain, and fatigue. I can push through it but I'm worried that my body will have permanent damage.

Junior Member
Posts: 7
I would recommend you get this book, which before the era of the internet used to be called the lupus bible.  I don't see it recommended here much, probably because we rely so much on the internet now.  Perhaps this will give you some background and current thinking about lupus, so that your limited time with the rheumatologist will be more productive:
Mr. Bun

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Senior Contributing Member
Posts: 1,116
here is a link from a reputable site:

I'm sorry you're having problems with your doctors.....sigh.  sadly....this happens more often than not with Lupus patients.  Most of us have been there too.

It p!sses me off .......the flippant way some doctors treat their patients.

You have a right to ask questions and to good care.  Keep trying and don't let them get you down.

Take care,


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Senior Contributing Member
Posts: 1,002
Yikes. I'm not about to second-guess a doctor, but if Plaquenil stopped organ damage, wouldn't every SLE patient be on it? And I would want regular lab tests to check kidney function, especially because you have concerns. 

About flares and waiting for appointments: I've had a similar situation. (Geez, I say that a lot. Too many doctors for too many issues over too many years.) The problem is the doc says to come in then, but the appointment desk has not been informed. I tell the appointment person the doc wants to see me when I'm having a flare or whatever, and if they say sorry, next available slot is in 4 months, I ask for that one, then ask to speak to the doc's nurse (or ask for doc's voicemail) and explain the situation. This has never failed to get me in. 

I hope you find a good rheumatologist--worth their weight in gold.

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Senior Contributing Member
Posts: 3,497
From the LFA page:

Generally speaking the type of inflammation in the kidneys with lupus nephritis is different than the inflammation of a kidney infection known as pyelonephritis. Therefore it is unusual to have pain with lupus nephritis. Also the kidneys do not reside in the low back but actually in the upper part of the back, right under the ribs. When there is kidney pain it is generally located higher in the back rather than in the low back

As far as blood work goes, I have had only 2 rounds done in 30 years. Obviously, if urine and other labs have shown inflammation in the kidneys for example, yes it would be monitored more often. The ANA test can be fickle and change often or remain the same as mine has for 30 years. 
Saying you won't have organ damage as long as you are on Plaquenil, on the other hand, is a bit broad. From Johns Hopkins:

 These medications may also prevent lupus from spreading to certain organs, such as the kidney and central nervous system (your brain and spinal cord) and may help to reduce flares by as much as 50%. Plaquenil and other anti-malarials are the key to controlling lupus long term, and some lupus patients may be on Plaquenil for the rest of their lives

The key word there is MAY prevent lupus from spreading.

When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. 

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Senior Contributing Member
Posts: 4,781
My rhemy does blood work every other month. My doctors usually calls me right back because I never call unless there is a issue.

Get a note book righ your symtoms and if you have a rash take a picture of it so you can show them when you do get in. Also most doctors have a cancellation list. See if your doctor has one and if so ask to be put on it. That way if someone callers am camcells theor appointment you might be able to get in sooner rather then later

Note: Please excuse any misspelled works or grammar errors. I have CNS lupus and brain lesions and use a program to help me type

The bond that links our true family is not one of blood, but one of respect and joy in each other's life
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