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flower
06-05-2009, 09:23 PM
help. was told i have lupus about a year ago. i'm just confused because i really don't have any symptoms. at first a little joint pain in two of my fingers and in my knee, after a little rest nothing since. doctor just put me on plaqunile and said i had inflammation. i really don't think i need the plaqunile. any suggestions anyone?

dsunshine
06-05-2009, 09:40 PM
Hello Flower and Welcome to the site!
Sorry to hear you were diagnosed but it sounds like you are a little skeptical??? Have you gotten a second opinion just to make sure? Also, if you don't have any symptons be thankful as flare ups are no joke and put me in the bed ALL DAY some times. Other days I am just fine. I too am on plaqunile along with a few other drugs. Is that the only med you are on for your Lupus?
Welcome again to the site!

abbasgirl
06-05-2009, 09:54 PM
Hello Flower.

dsunshine brings up a good idea...getting a second opinion can help with the confusion. On the other hand, it can also make a person more confused. Both have happened to me. :wacko:

I took Plaquenil for a little over six months straight and didn't notice a difference. I asked my pcp if I could stop taking it and she said it couldn't hurt to stop and see what happens. So that's what I'm doing now.

However, I have no diagnosis yet.

flower
06-05-2009, 10:06 PM
pleasure to meet you. thank you for your warm welcome. Yes plaqunil is all that i've been prescribed. I feel like i should get a third opinion. First opinion was that they don't feel that there is a problem and then they come back and tell me my ana is high and that i should see a rhemuy. I did, then he puts the cuff on my arm leaves the room comes back in and states that i;m inflammed and should start taking plauqnil? took the medication for three months but not feeling any pain from the second i left the office, took the medication any way because the doctor said i should. just stop taking the medicine three weeks ago because i just feel like i can take ibupro and be alright? So i am so confused on if i show take it are not?

dsunshine
06-05-2009, 10:15 PM
pleasure to meet you. thank you for your warm welcome. Yes plaqunil is all that i've been prescribed. I feel like i should get a third opinion. First opinion was that they don't feel that there is a problem and then they come back and tell me my ana is high and that i should see a rhemuy. I did, then he puts the cuff on my arm leaves the room comes back in and states that i;m inflammed and should start taking plauqnil? took the medication for three months but not feeling any pain from the second i left the office, took the medication any way because the doctor said i should. just stop taking the medicine three weeks ago because i just feel like i can take ibupro and be alright? So i am so confused on if i show take it are not?

Well I say get a third opinion. You know your body better than anyone. You know when you are not feeling well and whe you do feel well. You know if something makes you feel different or indifferent as do all of us on this site. Doctors are not Gods no matter what they tell you that is why it is called practicing medicine...always a practice. Besides it almost sounds like this doctor was guessing or in a hurry or something...UGH! I was given motrin when I first had flare ups 650 mg which didn't help AT ALL! I was originally thought to have post virual arthritis so that is what they gave me. I can only suggest getting another opinion and if ibuprofren works for you and the pain discomfort you have then use that if and when you need it as I can tell you my pockets/bank accounts a drier than the mohave with trips to the pharmacy every other week....no exaggeration and i have insurance!
Welcome again to the site!!!

flower
06-06-2009, 06:43 AM
sound like you're a very strong postive person, which is so comforting to find. thank you again for reaching out to me. Has your dr. like my dr. told you... in telling my insurance i have lupus that i could more than likely be dropped?

abbasgirl
06-06-2009, 07:33 AM
pleasure to meet you. thank you for your warm welcome. Yes plaqunil is all that i've been prescribed. I feel like i should get a third opinion. First opinion was that they don't feel that there is a problem and then they come back and tell me my ana is high and that i should see a rhemuy. I did, then he puts the cuff on my arm leaves the room comes back in and states that i;m inflammed and should start taking plauqnil? took the medication for three months but not feeling any pain from the second i left the office, took the medication any way because the doctor said i should. just stop taking the medicine three weeks ago because i just feel like i can take ibupro and be alright? So i am so confused on if i show take it are not?

Oh a third opinion! By all means...however many you need. Like dsunshine says... you know your body best and what you need. Life on the limbo merry go round is hard, but there is only one you and you should do what is best for yourself no matter what any specialist says you should. I had one that nearly bullied me into treatment I thought was chancy. That was so ugly. It's too bad they don't make doctors take lots and lots of classes on bedside manners and about treating patients with respect. It should be mandatory to their education and after graduation they should have to refresh themselves too.

ashleybaby715
06-06-2009, 09:44 AM
hi flower, and welcome to WHL!
i also agree with the others, i think you should get a 3rd opinion, becaue lupus is tricky...they could one day say you have it ,and the next say that you don't.
so a 3rd opinion will really define if you have it or not.

sorry to hear about you being diagnosed with it, but if you DO have it, consider yourself lucky to barely have any symptoms of it at all!! haha

Oluwa
06-06-2009, 09:55 AM
How a diagnose is usually made...

A careful review of:

your current symptoms
your laboratory test results
your medical history
the medical history of your close family members (grandparents, parents, brothers and sisters, aunts, uncles, cousins)



Common Symptoms of Lupus
• Painful or swollen joints and muscle pain
• Unexplained fever
• Red rash or color change on the face
• Chest pain upon deep breathing
• Unusual loss of hair
• Pale or purple fingers or toes from cold or stress (Raynaud's phenomenon)
• Sensitivity to the sun
• Swelling (edema) in legs or around eyes
• Mouth ulcers
• Swollen glands
• Extreme fatigue

A person shall be said to have systemic lupus erythematosus if any 4 or more of the 11 criteria below are present, serially or simultaneously, during any interval of observation.

Criterion Definition
1. Malar rash Fixed erythema, flat or raised, over the malar eminences, tending to spare the nasolabial folds

2. Discoid rash Erythematous raised patches with adherent keratotic scaling and follicular plugging; atrophic scarring may occur in older lesions

3. Photosensitivity Skin rash as a result of unusual reaction to sunlight, by patient history or physician observation

4. Oral ulcers Oral or nasopharyngeal ulceration, usually painless, observed by physician

5. Arthritis Nonerosive arthritis involving 2 or more peripheral joints, characterized by tenderness, swelling, or effusion

6. Serositis
a) Pleuritis--convincing history of pleuritic pain or rubbing heard by a physician or evidence of pleural effusion
OR
b) Pericarditis--documented by ECG or rub or evidence of pericardial effusion
7. Renal disorder
a) Persistent proteinuria greater than 0.5 grams per day or grater than 3+ if quantitation not performed
OR
b) Cellular casts--may be red cell, hemoglobin, granular, tubular, or mixed
8. Neurologic disorder
a) Seizures--in the absence of offending drugs or known metabolic derangements; e.g., uremia, ketoacidosis, or electrolyte imbalance
OR
b) Psychosis--in the absence of offending drugs or known metabolic derangements, e.g., uremia, ketoacidosis, or electrolyte imbalance
9. Hematologic disorder
a) Hemolytic anemia--with reticulocytosis
OR
b) Leukopenia--less than 4,000/mm<>3<> total on 2 or more occasions
OR
c) Lyphopenia--less than 1,500/mm<>3<> on 2 or more occasions
OR
d) Thrombocytopenia--less than 100,000/mm<>3<> in the absence of offending drugs
10. Immunologic disorder
a) Positive LE cell preparation
OR
b) Anti-DNA: antibody to native DNA in abnormal titer
OR
c) Anti-Sm: presence of antibody to Sm nuclear antigen
OR
d) False positive serologic test for syphilis known to be positive for at least 6 months and confirmed by Treponema pallidum immobilization or fluorescent treponemal antibody absorption test
11. Antinuclear antibody An abnormal titer of antinuclear antibody by immunofluorescence or an equivalent assay at any point in time and in the absence of drugs known to be associated with "drug-induced lupus" syndrome.

Oluwa
06-06-2009, 10:00 AM
Hi Flower..

I would see if your diagnosis fits into the above post. I would also asked your doctor why he came to that diagnose. It is okay to questions doctors. I would suggest to always do that when uncertain, confused and etc.

Make a list of your questions for your next appointment and ask them all until you feel comfortable with his/her answers. We hire them to treat us, diagnose us, care for us. Times we give more thought, more research, pose more questions in buying a dress, a TV than ourselves...

Doctors do make mistakes.

Hope all the information helps..

Keep looking for your wellness.
Love,
Oluwa

dsunshine
06-06-2009, 11:32 AM
sound like you're a very strong postive person, which is so comforting to find. thank you again for reaching out to me. Has your dr. like my dr. told you... in telling my insurance i have lupus that i could more than likely be dropped?
Drop me from insurance...HA! I wish they would drop me that is discrimination and I would sue like there is no tomorrow. Yes my insurance I think knows as does short term disability and AFLAC as when I was bed ridden I applied and received funds from both State short term disability and AFLAC.
I try to stay and be positive but sometimes those negative thoughts do swim around in my head and even come out of my mouth.

scarlet13
06-06-2009, 01:58 PM
Hello Flower!
I agree with everyone else that you should get a 2nd (or 3rd) opinion. Is the ANA the only test they ran? Personally I have had vials upon vials of blood drawn for numerous tests and have given plenty of urine and yet I still don't have a definite diagnosis. It can be a very tricky, confusing, and uncertain process I have learned and there are plenty of conditions that can cause a positive ANA. And Oluwa's list is very helpful. Maybe you can even print it out and take it to the doc to discuss or make your own list of questions. Many docs I have learned like to rush you out and it can be intimidating and personally I forget what I want to ask 1/2 the time if I don't write it out. Also, as to the meds, definitely discuss this with the doc as well. As others have said, you know your body better than anyone and if you feel your symptoms are controlled by ibuprofen then tell the doc this and maybe you can decide together that for now this is your best course of treatment. I know my rheumatologist doesn't like to prescribe meds that may cause unnecessary side effects if it is not warranted by the symptoms. i wish you luck in this confusing and trying time. I have also just recently joined up here but I have learned already that the people on this site are very supportive and helpful so I hope you keep coming back and let everyone know how it goes.
-Gayle

Delphinia981
06-06-2009, 09:27 PM
Hey Flower!

I totally agree with Gayle. Keep fighting until you get your answers. it took 16 years for me (crazy, I know), but the answers DID come...mainly because I didn't give up. Keep pushing...it will come! Best of luck and blessings to you!!

Pearl
06-07-2009, 07:10 AM
As everyone has already stated, diagnosis can be a tricky thing. Symptoms can come and go, new ones can appear and old ones can disappear. You've been given great advice. Make a list of questions, go back to the doc and ask them. Get another opinion.

As for the plaquenil, it takes time to work...if it is going to work. For some people, it may take as long as six months.

Hang in there and don't stop looking for answers.

I wish you well.

Jana