View Full Version : New Member
01-29-2009, 08:21 AM
I was diagnosed with Lupus (SLE) Nov 20/08, apparantly I've had it for 10 years. I was misdiagnosed with Rheumatic Fever and given years of painful antibiotic injections for nothing.
I've had a rough year and the new year is not very good, I've been sick since Jan 6/09, in bed, sore joints, bones, bad headaches daily, exhaustion and now something new, very sore muscles everywhere. I am nauseated, losing weight, no appetite at all and my blood pressure will be 135/94 and 2 hours later it will be 114/36, I get hot flashes which trigger an anxiety attack and I start to pass out several times a day. I took 1 week of predisone 50 mg, which eased up some joint and bone pain, but I still have nausea and muscle pain. I take adavan for anxiety but want to start an anti depressant, I started 1/2 a pill yesterday and am extremely nauseated and dizzy, I'm not sure if I should continue with the anti depressant but I'm so down I know I need something. I'm terrified to take any meds because I had a severe reaction to a pill last year. My gp wants to start me on plaquinil but I'm not sure if I'm capable of taking it mentally. My husband is not very supportive and doesn't understand the severity of the disease so I feel all alone. I'm trying to be more positive but I know I need help to be.
01-29-2009, 09:24 AM
Well first of all i wanna say welcome to the site and just letting u know theres alota ppl whos goin tru da same situation u r .. like me :) .. i know how u feel cuz lately i been goin tru da same pains .. joint pains , sore, headaches, hot flashes and alota other things da it would take me all day lol but i wanna let u know da ur not alone and da there ppl here dats gonna care about u and help u when u have any question .. and am srry to hear da ur husband is not very supportive and ur not da only one who feels da way not alot ppl understand about lupus cuz they r not well informe... do you go with him to the doctors apps? do u browse about lupus online and show him some information? if not u should do it so he can understand a little bit more cuz he would never understand everything atleast he goes tru da pains da u goin tru. Hope u feel better and remember ur not alone ..
SLE, Raynauds Syndrome
01-29-2009, 09:32 AM
Welcome to our family where everyone is understanding and we will always be here to give you support, comfort and information.
Do not fear Plaquenil. It is one of the best tolerated drugs used in the treatment of Lupus. Plaqueinil is an ant-malarial drug that is also an anti-rheumatic drug. Plaquenil is particularly effective in treating skin and joint symptoms that occur in SLE. It has also been demonstrated to improve: muscle and joint pain - inflammation of the lining of the heart (pericarditis) - inflammation of the lining of the lung (pleuritis) - and
other symptoms of lupus such as the debilitating fatigue and fever.
Plaquenil is also very effective in the treatment of discoid lupus and the various skin rashes that occur in Lupus.
Plaquenil with Prednisone is the cornerstone treatment for most Lupus patients and the two together usually provide relief for most symptoms.
Prednisone is a synthetic hormone known as corticosteroid (not at all the same as anabolic steroids). This hormone is produced naturally in the body. In part, prednisone acts as an immunosuppressant. The immune system protects against foreign bacteria and viruses. In some illnesses (such as Lupus), the immune system produces antibodies, which become overactive and cause the myriad of symptoms in Lupus. These illnesses, like Lupus, are referred to as "autoimmune diseases".
Prednisone suppresses the production of these antibodies. This suppression can make it slightly harder for you to fight off infection, but the suppression stabilizes the immune system that has become overractive due to Lupus.
Sore joints, headaches, and nausea can all be symptoms of Lupus. However, it is not uncommon for us to have Lupus as well as several other co-existing (aka: overlapping) diseases. For instance, I have Lupus, Fibromyalgia, Raynaud's Syndrome, IBS, TMJ, and several others. The loss of appetite and weight loss are also not uncommon with Lupus. But, because these could indicate other issues, it is important that you and your doctor find the exact cause of these symptoms so that they can be treated.
You are not alone in suffering from depression and other emotional issues with Lupus. Some theorize that depression is a very real symptom of the disease and others say that it is a very real side-effect of the disease. Whatever the cause, almost ALL OF US have dealt with depression. It is probably a good idea for you to discuss this with your doctor to see what is the appropriate treatment for you.
I hope that this has been helpful. I am glad that you've joined our family and I want you to know that you are not alone!
Peace and Blessings
01-29-2009, 11:11 AM
Ahhhh now i get it :)
welcome to the forum
01-29-2009, 02:04 PM
Welcome to the site. I send you a big cyber hug as I along with a lot of others definitely understand what you are going through. I think that it is sad that you were misdiagnosed for so many years. I think that the doctors definitely need to become more educated about Lupus. My name is Kathy and I have SLE, Lupus and have had it for some 45 years. I just turned 50 last month. I went for years with no diagnoses and finally got a doctor right out of med school to listen to me and test me for Lupus. He diagnosed me and then sent me off to a Rheumatologist who confirmed the diagnoses and put me on medication.
Saysusie is right that you should not fear the Plaquenil. This medication is one of the top of the line medications for Lupus and it works wonderfully for most folks. I have been on it for years and I believe that if I were not on this medication, that I would not be here today. Please do consider taking this medication. Understand though that it takes up to 5 months to get the full benefit of the medication, but please do take it.
I am sorry to hear that your husband does not support you. My husband was like that for years and it turned out that he was scared to death and could not deal with it. He finally came around. You should maybe think about taking your husband with you to the doctor. That is what I had to resort to to get him to understand and live with this rotten nightmare called Lupus. I hope that you keep posting as we all care for and about you.