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Old 12-15-2010, 08:33 AM   #1
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I believe I may have had Lupus for a long time...

Not diagnosed yet. Want to, but by GP always hates when I self-diagnose.

Anyway, I'm female, 53 years old.
Since having a severe alergic reaction to Omnicef (anitbiotic, treating a sinus infection) in 2006, I've been going down hill ever since.

This last week, I've taken myself off Simvastatin (Cholesterol med) because of severe muscle and joint pain. Got blood test Friday (12/10), waiting for results for CPK and Blood sugar levels. Recently read that Simvastatin can cause drug induced Lupus.

Anyway, looking over my life, some medical issues jump out at me and I'm thinking I should be tested for Lupus.

Since the Omnicef reacation in 2006, I get a red rash on my cheeks and nose. Never know when it will be there. Blamed it on allergies and having a sensitive system.

Had twins at 21, 3 hour labor, lost 4 pints of blood and a alot of pelvic pressure for about 7 months. In the hosptial of 7 days.

Right ankle cracked all the time, as long as I can remember.

In 2006, diagnosed with Pelvic Organ Prolapse, had 3 surgeries in 2 years, body rejected mesh. Long recovery and physical therapy. Abdomen muscle pain and lots and lots of right hip pain, siatic.

Also, breathing problems, had breathing test in 2007 and 2009 for asthma, but breathing test came back negative. Blood testing showed low white cells. Doc said I must be fighting off infection.

2008 went to a specialist for Planters Facisa (spelling?) in right foot and ankle, had shoe inserts made.

2008, red rash developed on my torso, by the time I got into the doctor's (GP) it was gone. She recommended that I see a skin specialist, which I did, to start a file on me. Blood test, again low white cells, fighting off infection.

2008-2010, tried several statins, but always had side effects of joint and muscle pain and switch medicines (GP). Blood test again, low whites again. Also sugar count high and CPK (I think) showed muscles were affected.

2010, got really sick at work, thought the symptoms was carbon monoxide, had trouble breathing then lot's of chest pain, off work for 3 days. Very fatigued. Made a doctor's appointment, but of course by them time I got in the major symptoms were gone. Another blood test, low whites again, fighting off infection. Ibuprphen and rest. Bought a carbon monoxide detector for work.

2010, pain in my left knee and ankle, then saw that tiny blood vessels burst, burning pain.

2010, Left ankle, when walking, feels loose, tendon/ligament twists and I have to stop walking until it moves back in place. Very painful. Been feeling a lot of joint and tendon pain. Left shoulder and both elbow, knees and feet.

Now again, severe muscle and joint inflamation, blaming it on the statin again.

Now I've noticed that my throat seems swollen and sometimes it's hard to swallow foods, my mouth is very dry. I'm currently taking Allegra RX for my sinus problems.

Want to make a doctor's appointment to discuss the results of the blood test taken on Fri (12/10) for muscle pain (check CPK) and elevated sugar (follow-up from Sept.'s blood test).

I would really like input and what kind of questions to ask my doctor when I see her this week?

Thank you!

 
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Old 12-15-2010, 08:17 PM   #2
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Re: I believe I may have had Lupus for a long time...

2005djb, hi & welcome. These things can be so hard for doctors and patients to work thru! Have you read the sticky posts (permanent info posts) at the top of the thread list? You'll find diagnostic criteria for systemic lupus, "alternative criteria", symptoms, test info, and useful books.

After you've read the stickies, you'll have more questions yourself, but here are a few questions & issues I'd kick around, if I were you.
1. Has ANA test ever been done? AND, because ANA is only a threshold test & may be positive in multiple conditions, have *more specific* autoantibody tests ever been run? (Those would be the ones you read about in the sticky about tests. While there are many more seen in lupus than just anti-ds-DNA and anti-Sm, those two are considered very specific to lupus. Others are "fuzzier" because they're seen in multiple conditions.)
2. As you said, statins are implicated in DILE (drug-induced lupus). When did you start the statin? Did you have symptoms *before* starting it? Was test for anti-ss-DNA ever run? (That's single-stranded, which is seen in DILE.)
3. Also, given dry throat, problems swallowing, muscle pain, etc., if autoimmune blood tests haven't been done yet, hopefully the dr. would cast a wide net, meaning also consider "close cousins" to lupus (myositis because of possible CPK elevation, Sjogren's syndrome due to dry mouth, ETC.)
4. Re: the multiple times your WBC has been depressed, I think that's called leukopenia. You could ask in what conditions it's seen.
5. Re: dry mouth, how long? Did you notice it before starting Allegra?
6. Re: facial redness, has dr. ever seen it? Do you have a picture of it?
7. ABOVE ALL, since you've been bouncing up & down for over 4 years and probably match at least some symptoms seen in lupus &/or its close cousins, is it time to see a rheumatologist?

Obviously I'm only a patient, so please read this in that light. I sought answers for years locally, then finally took myself to a teaching hospital & got immediate help (PDQ, like lightning!) from a rheumatologist & dermatopathologist. So as you ramp up, my advice is that if you get stuck, seek the most sophisticated specialists in your area. Also, visit your library & read: you'll ask better questions, and you'll understand your doctor's approach & his answers better. Let us know how your appt. goes. Looking forward to your next posts. GOOD LUCK! With warm wishes, Vee

P.S. Another thought. My final (and current) rheumatology practice asks patients to fax in a lifetime medical history before the first appt. You could put the symptoms you cited into strict chronological order (I think they almost are already), also include when you started/stopped the statin & the Allegra. Also include all abnormal test results. Also scrutinize the "alternative criteria" sticky post & include any you've experienced. Also include perimenopause & menopause as applicable (I was told the autoimmunes just LOVE wild hormonal fluctuation---they can rear up dramatically).

 
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Old 12-16-2010, 03:41 AM   #3
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Re: I believe I may have had Lupus for a long time...

Thank you so much VeeJ for giving me a direction.
I will re-read the sticky-posts as you suggested and take notes for my doctor.
I'll be calling my GP today for an appointment.

 
Old 12-16-2010, 06:21 AM   #4
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Re: I believe I may have had Lupus for a long time...

2005, forgot to tell you the cautionary tale of a relative who went thru an episode that eventually resolved some months after she quit her statin. She had severe muscle/joint pain, fatigue, elevated CPK, etc. Her dr. is head of dept. at a large teaching hospital, yet he never totally decided on a Dx; his top candidates were DILE and dermatomyositis. He had her on massive amounts of Prednisone, so large that I was stunned, as I associated it with *major organ failure*, which she didn't have. She then had a stomach bleed that almost did her in. She quit the statin, tapered off the Prednisone, and her symptoms gradually resolved. (I wonder if DILE is even harder to Dx than other forms of lupus, which are themselves famously challenging. The older we get, the more meds we're apt to take, and those meds may or may not be the culprits.)

Also forgot to ask: for your facial rash, have you noticed any correlation to sun exposure? (My non-facial rashes worsened so slowly that I didn't correlate them to sun for some years. That sounds incredibly stupid, but I'd never had sun issues, plus they worsened very gradually. I couldn't see the forest for the trees!)

If your GP suspects a possible autoimmune, whether drug-induced or otherwise, I hope he/she refers you straight out to a rheumatologist.

Let us know how you fare, OK? All my best, Vee

 
Old 12-17-2010, 07:42 AM   #5
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Re: I believe I may have had Lupus for a long time...

I called my GP for my blood test results (off the Simvastatin for 1 week before the blood was drawan) and the White Cell count - fine, CPK normal (47) and sugar - fine 5.7 according to my doctor's nurse. They claim the statin has nothing to do with my joint/muscle/tendon pain. So she immediately gave me a Rhumatolgist and I made an appointment today......can't get in until 1/18/11.

My muscle/tendon and joint pain has subsided tremendously (except for my left arm). I still don't have proper strenght in my left arm and there is what looks like a broken blood vessel spot where some of my pain was.

I'm sure that most of my current symptoms will be gone by the time I go see the specialist. I'm glad to be documenting this here so I can remember what was going on when I see the Doctor in Jan. I'll let you know more then.

 
Old 02-04-2011, 07:30 AM   #6
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Re: I believe I may have had Lupus for a long time...

Just to let you know...I saw a Rhrumy a couple of weeks ago and my tendon's were still very sore (both elbows and left knee and ankle). I told him about my facial rash (that appears at times) and taking myself off Simvastatin on 12/3/10. He said I don't have arthritis and that it must be the Simvastatin, even though the blood test did not show it. He said that I could have developed Lupus type symptoms from the Statin, but since I didn't have the facial rash or a picture of it he will let my GP know that I have severe side effects from statins.

I'm feeling much better, my left elbow, knee are 95% better but my left ankle and right elbow still have irritation. Hopefully in another month (already 2 months off statins) they will come around too.

I'll continue to read this forum though! Thank you all!

 
Old 02-05-2011, 07:05 AM   #7
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Re: I believe I may have had Lupus for a long time...

Hi. Good news! That would be very cool indeed if you continue to improve just from ceasing the statin. Take good care, Vee

 
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