View Full Version : HOW I FOUND OUT I HAD LUPUS
11-18-2008, 07:40 PM
LAST YR I WAS VERY ILL I HAD PNEUMONIA FOR FIVE MONTHS IN A ROW. MY PCP AT THE TIME KEPT GIVING ME ANTIBIOTICS AND COUGH MEDICINE. HE NEVER DONE ANY LABS OR XRAYS TO SEE WHAT WAS WRONG WITH ME. WELL I FINALLY GOT TIRED OF BEING SICK AND I WENT TO SEE ANOTHER DR IN JANUARY OF THIS YR. SHE DID LABS XRAYS THE WORKS. WELL TWO WEEKS AFTER MY LABS WERE DONE SHE TOLD ME I NEEDED TO COME IN AGAIN SO I CAN GET MORE LABS DONE. SO I WENT AT THIS TIME MY PNEUMONIA WAS SOME WHAT UNDER CONTROLL THE XRAYS SHOWED PLEURISY. WELL I WENT BACK AND SHE SAT ME AND MOTHER DOWN AND TOLD ME I HAD LUPUS THE REASON SHE SENT ME FOR LABS TWICE WAS TO MAKE SURE. SHE THEN REFERRED ME TO A RHEUMETOLOGIST. WHICH TOOK FOUR MONTHS TO GET IN TO SEE. HE DID THE SAME LABS AGAIN (ANA PANEL). HE THEN PUT ME ON PLAQUENIL AND UP UNTIL A COUPLE OF MONTHS AGO I STARTED FEELING MORE ILL MORE TIRED THE SWELLING IN MY HANDS GOT WORSE MY SLEEP PATTERN CHANGED FROM 8 HRS TO 2-3 HRS A NIGHT. THE WORSE THING NOW IS THAT MY HAIR IS FALLING OUT . I WENT BACK TO THE DR ABOUT A WEEK AGO AND HE TOOK ME OFF MY PLAQUENIL AND WANTS MY LABS RE DONE HE SAID MY LUPUS ISNT THAT BAD. I HAVE BEEN HAVING VERTIGO AND NUMBNESS IN MY FEET AND HANDS THEY GET COLD ALSO EVEN WHEN THE WEATHER IS WARM. IF MY LUPUS ISNT THAT BAD THEN WHY AM I FEELING THIS WAY........ ANY THOUGHTS MAYBE SECOND OPINION???
11-18-2008, 07:53 PM
Welcome to the site. My name is Kathy and I have SLE, Lupus and several other auto-immune disorders. I for the life of me can not figure out why the doctor took you off of the Plaquenil. I definitely think that you need a second opinion and to see a different Rheumatologist. There will be others that will come on here and they may have more information, but in my personal opinion he should not have taken you off of the Plaquenil. Did he put you on any other medications for the Lupus? Please keep posting ok.
11-18-2008, 07:58 PM
It seems you were doing well was because of the Plaquenil. I don't understand why he discontinued prescribing it. Even while in remission, mild...we can still dose with Plaquenil. To me, from your post it clearly says you should still be on it....especially since your symptoms reappeared...
Many have the lab work come back in the normal range and are still symptomatic and too their tests are positive, abnormal and have little or no symptoms. Labwork is only part of the diagnose...a small piece of the puzzle, but not thee diagnosing tools...
Edema, hair thinning can be symptoms of Lupus. My hair thinned, I have swelling, sleeplessness, fatigue, dizzy and I am still on Plaquenil.
I guess I am confused as to the real reason he stopped the Plaquenil..except to say maybe he is incompetent? Inexperienced with Lupus?
Have you had your lab work redone?
11-18-2008, 08:08 PM
THIS MAN HAS BEEN A DR SINCE 1977. HE TOLD ME THE REASON HE WAS TAKING ME OFF OF THE PLAQUENIL IS BECAUSE OF THE OTHER SYMPTOMS NUMBNESS VERTIGO AND MY VISION HAS GOTTEN WORSE . HE SAID HE IS CONCERNED THAT IT MIGHT BE AFFECTING MY NERVOUS SYSTEM... BUT STILL I DON'T UNDERSTAND WHY STOPPING THE PLAQUENIL........ IM SO STRESSED OUT I HAD SURGERY OCT 7 THEN MY WISDOM TEETH TAKEN OUT LAST MONDAY ...... AND THEN THIS. MY HAIR FALLS OUT SO MUCH WHEN IM IN THE SHOWER AND I RUN MY FINGERS THROUGH MY HAIR AND I LOOK MY HANDS ARE COVERED IN HAIR.. I CANT SLEEP , MY HUSBAND SAID MAYBE I SHOULD GET A JOB IM A MEDICAL ASSISTANT I JUST DON'T KNOW I ASK MYSELF WHY I AM HERE WHY I HAVE THIS :mad: :mad: :cry: :cry:
11-18-2008, 08:19 PM
Taking you off for those reasons, sounds plausible...as those can be side effects. I misunderstood and thought they 'reappeared'.
He should have prescribed something else, Prednisone, steroids....Imuran..methotrexate...NSAIDS..combina tion of them.
Having surgery, wisdom teeth removed Monday are very stressing on the body and you are more than likely in the midst of a flare...
It is stressful, depressing feeling overwhelmed...hurting, having no control over your body...hugs...
Tomorrow call the doctor, leave a message with the nurse if need be and say you need to see him and if he will prescribe something else...
Are you in pain?
11-18-2008, 08:30 PM
I SPENT MOST OF THE DAY IN BED I SLEPT I DIDN'T WANT TO DO ANYTHING JUST LAID THERE. MY MOM HAD TO TAKE MY KIDS MY MOTHER HAS BEEN MY ROCK. SHE HAS SEEN ME SUFFER ALOT. AS FOR THE STERIODS HE SAID HE WASN'T GOING TO PUT ME ON THEM BECAUSE I WAS ALREADY OVER WEIGHT. RIGHT NOW MY TOES ARE NUMB AND MY HANDS . MY KNEES ARE KILLING ME AND I HAVENT BEEN GOING TO THE RESTROOM MUCH TODAY I THINK I TINKLED TWICE. IM SICK TO MY TUMMY AND I ATE ONCE TODAY . AND IF I SEEK A SECOND OPINION HE IS 6 HRS AWAY....... DON'T KNOW
11-18-2008, 08:30 PM
Not sleeping also ignites, aggravates our symptoms..perhaps suggest a sleeping aid prescribed.
No sleep, more symptoms, flares..it becomes a vicious circle...
11-18-2008, 08:35 PM
No tinkle..do you have edema? Have you had lab work for your kidneys done..Creatine levels...protein in the urine, renal disorders...
Eating excess salt?
When are you having the lab work from him again done? If he suspects CNS involvement has he ordered any test? MRI, CT...or he believes it is just a symptom of the Plaquenil?
Do you have Raynauds? Numbness and tingling in limbs...
Six hours is far, but for better care it maybe worth the drive.
Are you taking any NSAIDS for you knee pain?
11-18-2008, 08:45 PM
I AM NOT SEEING HIM AGAIN UNTIL JANUARY 8 2009 HE WANTS ME TO DO THE LABS TWO WEEKS BEFORE MY APPOINTMENT. AND YES I HAVE SOME EDEMA IM A LITTLE SWOLLEN AND HE TESTED MY URINE ABOUT TWO MONTHS AGO AND THAT'S IT. HE TOLD ME HE THINKS ITS THE MEDS AND I HAD KIDNEY STONE A LONG TIME AGO AND A UTI ABOUT A MONTH AGO BUT OTHER THAN THAT HE SAID HE WAS GOING TO CALL MY PCP AND TELL HER TO DO SOME OTHER TESTS ITS BEEN A WEEK I CALL NO ONE CALLS ME BACK ..........
11-18-2008, 08:47 PM
IM TAKING ALEVE BUT WHEN I TAKE IT AND I GO TINKLE IT HURTS ...... EITHER THAT OR I TAKE MOTRIN OVER THE COUNTER.. I HAVEN'T TAKEN THEM IN ABOUT A WEEK BECAUSE IM TAKIN PERCOCET AND LORATAB
11-18-2008, 08:50 PM
Is your PCP who hasn't called you back? If so, tomorrow, call and make an appointment with your PCP. Tell her of your last appointment with your Rheumatologist and request the labwork at that time....
You do not need the Rheumatologists referral or paperwork to have the tests done. Your PCP can order them...
If you still have vertigo and vision problems and haven't cleared up since stopping Plaquenil, that is a good reason to to the other tests I mentioned for possible CNS involvement..
11-18-2008, 08:52 PM
The Lortab which is Vicodin isn't helping with the pain...Pain pills such as these do not stop inflammation in the joints.
Maybe Arthrotec would help with the joint pain.
When you tinkle with pain, is that a UTI or you think it is Aleve?
Sometimes anti-inflammatorys can cause edema..
11-18-2008, 09:03 PM
I see you are not on...we can pick up our conversation tomorrow, as I am getting sleepy...
I hope you sleep well...try not to worry. Make a few calls tomorrow to your doctors...
11-18-2008, 09:09 PM
I WAS GETTING ME SOME CLAM CHOWDER SORRY YES THE PAIN MEDS DO HELP FOR THE PAIN BUT I AM STILL SWOLLEN. BUT HOPEFULLY TOMORROW I WILL FEEL BETTER AND I AM GOING TO GO TO THE DR IM NOT CALLING SHE TAKES WALK INS ....... I NEED ANSWERS ..... AND I NEED THEM SOON CAUSE I CAN FEEL MYSELF GETTING SICKER. HAVE A GOOD NIGHT AND SWEET DREAMS
Welcome. I read your comments in regards to your Dr. and Rheumo. I find it odd that your Dr./Rheumo took you off the Plaquenil. Plaquenil can affect the central nervous system, and cause the symptoms you mentioned, but it's rare for it to do that. Lupus can also attack the central nervous system and cause many of the very same symptoms. In that case, the Plaquenil can be beneficial in controlling those symptoms, and any possible damage. Did the person who prescribed you the Plaquenil refer you to an Opthamologist? The one really bad, yet rare side effect of the drug is retinopathy. In layman terms, it can cause permanent damage to a persons eyesight. Anyone on the drug to manage Lupus needs to see an Opthamologist initially for a baseline evaluation of their eyesight. Then it's recommended that an evaluation be done every 3 months to check for any adverse effects to the persons eyes.
Retinal damage is usually associated with the dosage. Generally the dosage a Lupus patient is prescribed is safe, and has no noticeable side effects, and is well tolerated. I've been on the drug for more than a few years now, with no bad side effects. I dread the thought of what my flares would be like if I wasn't taking the drug. What does all this mean? Well, I think you should get a second opinion. It's a pain in the butt, yet it's sometimes necessary. If you have not been to see an opthamologist, I would suggest you mention that to your Dr., your Rheumo, and any other specialists you may see if you do in fact decide to get a second opinion.
This disease can be terribly frustrating. But you don't have to deal with it alone. That's what this site is really all about. There are alot of good people here, and alot of excellent advice. Please make yourself at home, and let us know how it goes, and what you find out.
11-18-2008, 09:37 PM
MY DR TOLD ME I DON'T HAVE TO GET MY EYES CHECKED EVERY THREE MONTHS HE TOLD ME ITS EVERY YEAR ......... IM SO CONFUSED I MEAN WHAT IS MY DR REALLY DOING...... I HAD AN EYE EXAM BEFORE I STARTED THE MEDICINE LIKE HE TOLD ME TO DO AND HE TOLD ME IT WAS EVERY YEAR. WOW... THE THINGS YOU LEARN. NOW IM REALLY PISSED OFF AND ITS TIME FOR A NEW DR. :mad: :mad: HELL AS LONG AS THEY GET PAID THEY DON'T CARE ITS RARE NOW TO FIND DR'S WHO ACTUALLY CARE ABOUT THE PATIENTS NOT THERE PAY CHECKS........ YOU HAVE ANY MORE ADVICE ON WHAT I SHOULD DO I STILL HAVE SOME PLAQUENIL LEFT IM TEMPTED TO START TAKING IT AGAIN
You'll see different amounts of time recommended as far as how often you should get your eyes checked. I get mine done every three months. Others may have it done every 4 months, but never only once a year. As far as starting Plaquenil again, I would not do it until you either talk to your existing Dr./Rheumo about it, or you get a second opinion and they say you should resume taking it. Although most of us here are in agreement that you probably shouldn't have been taken off the drug, none of us are doctors or rheumotologists, and we would not want you to change anything in regards to your meds without your Dr's approval.
I know this is just frustrating as hell. Many of us are going through, or have gone through the same experience. There are alot of otherwise competent people in the healthcare industry who know next to nothing about Lupus. You are doing the right thing. You are learning all you can so you can be an advocate for yourself, and be an educated patient. Find yourself a second, even third opinion if you need to. In the meantime, just know that you will get the answers you need, and a proper treatment plan to manage your symptoms, but it's going to require some patience and perserverance on your part. Of course, if you need to vent, this is the place to do it. So hang in there the best way you know how until you can work with your Dr's and get this sorted out.