11-12-2006, 09:13 AM
my name is Lynne.. :D I am 40 years old.. :wink: although somedays I feel alot older than that... I have been tested for lupus twice now and both my ana's have come back ok.. I have almost every symptom.. it really stinks.. I have been putting up with problems for about 6 years.. and recently started going to a doctor our company provides and she told me that it can take years to get a confirmed diagnose of the disease although she thinks that this is what it is..she has seen the joints and the breathing problems.. the temperature and not being able to walk sometimes really get to me.. I hate being tired.. :cry: i think i do pretty good... i try not to let WHATEVER :evil: this is get to me too often.. :cry: and i definately try not to in front of anyone.. when my father passed away two weeks ago after battling parkinsons disease.. I was so tired... and again couldn't hardly walk.. as it seems stress makes it worse..
my doc put me on plaquenil.. and it seems to make me itchier than i was before.. could this be any thing other than lupus?? any other disease act like this that isn't so horrible? my poor family just went through all these years of watching my dad.. and i keep it downplayed like it's not really that horrible.. but somedays i just can't function.. like today.. i have my step daughter coming to celebrate her birthday with us and i am just too tired to get up and get food ready etc... but i have to do it.. we put it off cause of my father's passing and i can't dissapoint her.. any ideas on something to help my with some git up and go?? :?:
anyway.. thanks for letting me rattle on and on..
looking forward to talking with you all..
11-12-2006, 09:58 AM
Welcome to the forum. I don't know what to tell you about why the Plaquenil is causing you to itch. How long have you been on it? It takes a good 5 months for the Plaquenil to really kick in and work. I have SLE and am 47 years old. There are some really knowledgeable folks that come in here and they may better be able to help you out.
11-12-2006, 11:02 AM
I am very sorry about your father's passing - I know this must have been a very stressful and sad time for you and your family. My heart goes out to you - it's been over ten years since my mom died and I still miss her every day.
Being sick yourself certainly doesn't make things any easier. Allergic reactions to plaquenil aren't very common, but they do happen, so you need to let your doctor know about the itching. If you develop a rash, swelling or trouble breathing, you need to see a doctor right away as these could be signs of a serious allergic reaction. Plaquenil often causes an upset stomach, nausea or vomiting which usually go away as you get adjusted to the medication, As Kathleen mentioned, it can take months for plaquenil to improve fatigue and joint pain. Plaquenil is very toxic for children - even a small dose can be fatal to a young child, so it's very important to keep this medicine out of the reach of children.
Unfortunately, lupus can be very hard to diagnose because its symptoms can vary a lot from person to person, and the disease itself is called the "great imitator" because it can look like any one of a hundred other diseases. There are over a hundred different diseases which can cause arthritic symptoms, and over 80 different auto-immune disorders, plus a number of other diseases which can cause lupus-like symptoms, including Lyme disease, Epstein-Barr virus, chronic fatigue syndrome, and various connective tissue diseases. So it's complicated, and most doctors are reluctant to diagnose lupus unless they are sure of the diagnosis. Although there are 11 criteria which are common in lupus, it is very unlikely that a lupus patient will have all of them. And symptoms like fatigue, cognitive problems, and Reynaud's phenomenon are very common in several diseases, which is why they are not part of the diagnostic criteria for lupus.
Your doctor is right that it can take years to get a definitive diagnosis - some experts say the average is seven years. Some people have clear cut symptoms and laboratory abnormalities that make the diagnosis more obvious, but they are probably the exception.
ANA-negative lupus is rare, but it does happen in about 5% of lupus patients. The problem is that most labs use an automated screening process - if no ANA is detected, no further testing is done. It is possible for people to test negative on an ANA screening, but still test positive specific antibodies such as anti-DNA, anti-Sm, anti-Ro/SSA, anti-La/SSB, and anti-RNP, which could indicate lupus or other autoimmune disease. But unless the doctor specifically orders these tests, called subset panels, they are not done if the screening ANA is negative. So you should certainly ask your doctor about these tests to help clarify the diagnosis. Since auto-immunity is the hallmark feature of lupus, the absence of any abnormal auto-antibodies would make the diagnosis of lupus less likely. Additional tests that might be helpful include complete blood count with differential, urinalysis, sedimentation rate, c-reactive protein, and serum complement levels. Any or all of these tests can be abnormal in lupus, so this will give your doctor additional information that might help the process along. If you are not dealing with a rheumatologist or someone experienced with lupus, it might be helpful to ask for a referal to a specialist. This is no reflection on your doctor's competence - just the fact that lupus is a very complicated disease.
I hope this information helps you figure out what questions to ask. Sometimes we have to be very proactive in finding the best health care available! And again, welcome!
11-12-2006, 06:38 PM
Wow thanks you guys for the input so quickly... My doctor is not a rheumatologist.. I did go to one for a bit but it seemed he just wanted to give me blood tests every 6 weeks? I never understood why?? my .. is it sed rate that shows inflamation??.. it was up.. so I guess he wanted to just keep watching it?? The doctor I have right at this moment is just a general practice doctor.. but she has mentioned sending me to a rheumatologist in another town because she doesn't like the ones in our town... however, my dilemna is that my husband had a heart attack a little over a year ago.. had stints.. and an pacemaker.. and I am still trying to pay all those medical bills off.. it seems like it never ends.. I don't know if the new med is causing the itching.. I have always had problems with it.. maybe it just seems like more lately.. but i have been stressed out over my father's passing.. I wish they would figure it out and pin point something totally different.. but I will definately ask my doc when she draws blood again in december to please have the tests you mentioned ran.. although.. maybe not having a totally positive diagnose is a little comforting.. than being pinned to this disease??... thanks for your information.. I truly appreciate it..
11-12-2006, 07:13 PM
That sounds like a good plan - ask her about the specific tests, because she can certainly order them. Once you get the results, you can decide about the referral to a specialist. Sometimes just having a plan of action can relieve some of the stress of "medical limbo".