View Full Version : Hello, I'm new to the world of lupus
07-15-2008, 08:14 PM
HI. My name is Lisa, I'm 39 and I have recently been dianogized with Lupus. I have 8 of the symptoms so I am still under going alot of test. There are times that I'm not sure if this is all for real and there are times that I hurt so bad that I know it is really there. I am feeling alone rightnow. Living in a small town (11,000) does not give you support or groups to turn to. My husband is great, but he doesn't need to hear me "whine". I have turned to you for the support I need and to hear other stories of living like this until labeled and treatment, and fears, and laughter. I know it's here. These last few days have been hard and lonely. When I hurt this bad and tired this much I don't want my family to hear all the aches and pains. "MOm, you are always tired." "isn't there someting you can take?"
Little one has woken up again. I will return.
Please take me in and help me see some kind of hope.
07-16-2008, 02:06 AM
Welcome to the site. I can sure understand how you feel. I have had Lupus and Sjogrens for a very long time. It took over 30 years for me to finally get diagnosed and treated, because the Lupus was very insiduous and I did not get the Malar Rash until I was 35 years old. I did not even pull a positive ANA until then either. I had all of the other symptoms since the age of 5 years old up at different times during the illness. I understand how it feels to be in pain and feel like you have no where to turn for help and support. Are you on any medications for the Lupus? There are a lot of folks in here that have Lupus and there are quite a few that are still awaiting a diagnosis. Everyone is great. I just want to say that I am happy that you have come here to talk with us.
07-16-2008, 05:21 AM
Hi Lisa -
Welcome to the site. You couldnt have found a more supportive and informative group of people to talk to. I am just recently diagnosed myself, after almost 10 years of being sick. Though I have consistently showed all the symptoms of lupus, I have always had a negative ANA. That is one of the blood tests they use to determine if someone could have lupus. (There is no ONE test to determine if someone has lupus). There is a large amount of docs, however, that will not dx or treat until someone has a positive ANA.
In May, my GP decided to start me on plaqueinil and prednisone and sent me to a rheumie. He agreed I have lupus and kept me on as a patient. I have felt much better ever since. The prednisone works right away, but the plaqueinil can take up to a few months to really get into your system.
Hopefully, your doc will make a move and put you on something soon. The prednisone does work right away and you should feel less pain and fatigue within a few days or so.
As far as your family goes, I completely understand about not wanting to "whine", and feeling guilty because you cant do things like you used to. However, this is a disease...you didnt ask for it, you didnt cause it...its not your fault. Maybe your husband could go with you to your next appt so he could learn more about lupus, and its devestating effects on someone. This sometimes helps when they hear it from a doctor, instead of you. My children also suffered due to this illness. But you will learn different tricks and tips here that will help you spend time with them AND get the rest you need to keep your disease under control.
This is a life-changing disease, but you can manage it if you take care of yourself. You need to keep yourself educated, and learn to live in moderation. Rest is ESSENTIAL to keeping flares at bay.
Im sure one of the more experienced members will be along soon, but I wanted to let you know that you ARE NOT ALONE...We all understand, and have been where you are today. Keep posting, even if you just want to vent, kick and scream....We are here for you...
07-16-2008, 06:22 AM
/thank you for both of you replying to me so quickly. Let me tell you a little about myself. In 2002 I began to have different things go "wrong" with me. It would stop, by the time I would given in and went to the GP. Little things like gastrointestinal, sores in mouth, itchy ears and nose, and a rash that would leave scars. Finally, two years agoI asked to be tested and the ANA came back negative. I have applied hydrocortizone valerate to my "rash" for two years and every once in awhile take steriods. Finally back in May I went to my grandfather's funeral and discovered so much about other memebers of my family. My sister has lupus (not in her blood yet) but she has horrible pitting on her face. And my aunt suffers from traveling arthritis. I immediatley went back to my GP and said okay this is it. I want to be treated for both. My second ANA came back positive. I see a Rheumotolgist in Mid August. Until then I am on Tylenol 3. the predisone but with in a week my kedneys were hurting. So the GP put me on Tylenol 3. I am testing twice this month for my extremities falling asleep and having stabbing pains. I have learned to gather all medical recods from GP and various specialist over the years and take it to the rheumo. I am constantly gathering education for myself. And until I am "offically" diaginosed this is what I am doing to taking care of myself.
07-16-2008, 06:37 AM
Does the prednisone help with your symptoms? Hopefully, your doc will put you on plaquenil when you see her in August. It works really well and has the least amount of side effects of all the meds. It takes a while to work, but it is worth it.
Good for you for being persistent with your doctors...Many of us had to wait years before being treated/dxd.
Glad you found us - you will be too!
07-16-2008, 06:45 AM
Welcoming you IN with warm open arms...
Humm..I am concerned about you kidneys hurting and Tylenol 3. How much are you taking of the prescribed drug? Be cautious of adding other OTC pain relievers, alcoholic beverages.
Did they do a urinalysis?
I am a bit unclear if you were diagnose with Lupus or unofficially diagnosed? If you have eight of the criteria seems you have met the test.
Note...Lupus is a long tango dance with doctors. Lupus can be an accumulative disease. Not all symptoms at once...and spread out over years, so maintain a journal too will be helpful.
From the American College of Rheumatology (ACR)...Four out of eleven is needed.
Malar Rash ...Rash over the cheeks
Discoid Rash ....Red raised patches
Photosensitivity ....Reaction to sunlight, resulting in the development of or increase in skin rash
Oral Ulcers ...Ulcers in the nose or mouth, usually painless
Arthritis ...Nonerosive arthritis involving two or more peripheral joints (arthritis in which the bones around the joints do not become destroyed)
Serositis ...Pleuritis or pericarditis (inflammation of the lining of the lung or heart)
Renal Disorder ....Excessive protein in the urine (greater than 0.5 gm/day or 3+ on test sticks) and/or cellular casts (abnormal elements the urine, derived from red and/or white cells and/or kidney tubule cells)
Neurologic Disorder ....Seizures (convulsions) and/or psychosis in the absence of drugs or metabolic disturbances which are known to cause such effects
Hematologic Disorder.....Hemolytic anemia or leukopenia (white blood count below 4,000 cells per cubic millimeter) or lymphopenia (less than 1,500 lymphocytes per cubic millimeter) or thrombocytopenia (less than 100,000 platelets per cubic millimeter). The leukopenia and lymphopenia must be detected on two or more occasions. The thrombocytopenia must be detected in the absence of drugs known to induce it.
Antinuclear Antibody ....Positive test for antinuclear antibodies (ANA) in the absence of drugs known to induce it.
Immunologic Disorder ....Positive anti-double stranded anti-DNA test, positive anti-Sm test, positive antiphospholipid antibody such as anticardiolipin, or false positive syphilis test (VDRL).
An antinuclear antibodies (ANA) test is done to help identify problems with the immune system, such as....or rule in or out other diseases...some, not all I have listed..such as
A positive ANA doesn't mean Lupus, nor does a negative mean not. 3 - 5% of the people can have a negative ANA and still have Lupus. Lupus is a great mimicker of other diseases, so they should rule out others before diagnosing.
Again welcome, make yourself at home...chat up, share...
Keep looking for your wellness.
07-16-2008, 09:21 AM
Hi Lisaanne :lol:
Let me also extend a warm welcome to our family here. You've already met some of our members and seen how helpful and comforting they can be. You asked that we please take you in, your were already taken in when you decided to write your first post. As I said, we are a family here and every single person wants only to help you in any way that they can.
You mentioned that you took Prednisone and that, within a week your kidneys were hurting. Do you think that the kidney problems were caused by the Prednisone? I ask because it is highly unlikely that Prednisone will cause kidney problems. However, we are advised to avoid salt when taking Prednisone. Most of us consume much more salt (sodium chloride) than our body needs. Normally, our kidneys keep our body in balance and any excess salt is excreted in the urine. Prednisone causes sodium retention and potassium loss which may lead to fluid retention, weight gain, bloating and low blood potassium levels. In some patients, this can cause high blood pressure or can worsen a pre-existing condition. Therefore, it is suggested that we participate in a no-added salt diet and that we avoid highly salted pre-packaged convenience foods. We are told to use fresh herbs whenever possible. Read food labels carefully and don't add any salt to cooking, in fact, just remove the salt shaker from your table. Instead, use low-salt spices to add flavor to your meals. Ask your doctor about using salt-substitutes which are helpful since they contain extra potassium. It is also suggested that we add high potassium foods to our diet, such as bananas, citrus fruits, melons, and tomatoes.
Aside from that, Prednisone and Plaquenil are the cornerstone treatments for Lupus. If you are experiencing problems with your kidneys (usually in the form of Lupus nephritis which is a result of inflammation in the kidneys that is associated with an overactive immune (defense) system, such as is the case with Lupus), the most common treatment for this condition is Prednisone or Prednisolone (higher dose) or methylprednisolone (an even higher dose). So, either way, the Prednisone was your best bet to treat your symptoms.
In Lupus nephritis, antibodies against your own tissues (auto-antibodies) form antibody-tissue (antibody-antigen) unions (complexes) that in turn deposit in the kidney and initiate a destructive inflammatory reaction. In fact, very often, the severity of the kidney disease parallels the severity of the immune abnormalities that can be measured in the blood of patients with lupus (such as DNA antibody, complement levels, etc.). Accordingly, treatment has to involve medications that reduce inflammation as well as suppress the immune system. Prednisone does both. Tylenol 3 does neither!
Tylenol 3 is only a pain medication and I fear that too much of it may cause stomach problems. This medication does not work on the type of inflammation caused by Lupus (or by any auto-immune disorder).
There are certain tests that your doctor can run to determine if inflammation is occuring. Those tests are: Sedimentation rate (ESR) and CRP (C-reactive protein) binding, both of which are frequently elevated in inflammation from any cause.
Diagnosing lupus can be difficult. It may take months or even years for doctors to piece together the symptoms to diagnose this complex disease accurately. No single test can determine whether a person has lupus, but several laboratory tests may help you and your doctor to make a diagnosis. The most useful tests identify certain autoantibodies often present in the blood of people with lupus. For example, the antinuclear antibody (ANA) test is commonly used to look for autoantibodies that react against components of the nucleus, or "command center," of the body's cells. Most people with lupus test positive for ANA; however, there are a number of other causes of a positive ANA besides lupus, including infections, other autoimmune diseases, and occasionally as a finding in healthy people. The ANA test simply provides another clue for the doctor to consider in making a diagnosis. Also, there are a growing number of people who have Lupus without the positive ANA test (these cases are known as ANA-Negative Lupus).
In addition, there are blood tests for individual types of autoantibodies that are more specific to people with lupus, although not all people with lupus test positive for these and not all people with these antibodies have lupus. These antibodies include anti-DNA, anti-Sm, anti-RNP, anti-Ro (SSA), and anti-La (SSB). TYou and your doctor may use these antibody tests to help make a diagnosis of lupus. Also, don't forget about the tests that I mentioned above to test for inflammation.
I think that it is important that you and your doctor establish weather or not you are having problems with your kidneys and, if so, begin immediate treatment. Failure to do so may result in a loss of kidney function.
I hope that I've been a bit helpful to you. Please let me know if you need anything further. Again.....welcome to our family!
Peace and Blessings
07-16-2008, 10:01 AM
Saysusie always gets into the meat and potatoes, details of it all...I'm still learning lots from you about our illness, Saysusie.
Thank you for all you do, and all that you share with us, Saysusie..hugs,
07-16-2008, 02:53 PM
I agree Oluwa - she is wonderful...But you are no SLOUCH, yourself!! Always comforting, giving info - if I didnt know better, I would think you two have known each other for years!!
LUPUS' Batman and Robin!! (except women of course...though that Robin always made me wonder...)
Im so grateful to have you both, and everyone else here, to turn to when I need info, comfort or just a good laugh!! You have all made this process so much easier for me...I will be forever grateful
Love and gratitude -
07-17-2008, 09:02 AM
I have to ditto everything that Lauri said. You are my angel and you have an uncanny ability of providing warm, comforting and much-needed-to-hear words! That talent is uniquely you and I know that everyone in this family truly appreciates what you do and how you do it! I surely and truly do!
I have been reading your posts and responses, and to put it in your own words..."You are no slouch yourself!" You have added your own brand of warmth and have provided some pretty accurate information too!
We are, indeed, a family here. Each one of us provides something that is uniquely them and that's what makes our community so wonderful. We have members who have been here for years (like Hatlady), and some very new members. But everyone is an asset to this community and what makes me happy is.....everyone here cares about everyone else! In that way, our WeHaveLupus family is quite different from other support groups. We are, truly, a caring family!
Peace and Blessings
07-18-2008, 04:02 PM
Da da da da dadada BatMAN!!!!! and Boy wonder....
Ah, you guys are too kind...huggie
I think a lot of you Saysusie...words that come to mind. Love, dedication, strong, enduring, warm..a spot for all of us in you...
Indeed, we are all special..you, and you, her, him...them, us, we...a nice blend..individually and as a family.
07-19-2008, 04:09 PM