Lupus Support Group
Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.
Hi, I used to come often to this board as Irishbookfairy. I left because I did not think I had lupus. I am still not so sure about it since I had an ANA test in May and it was negative. However....things are always changing.
I have had Hypertension stage 2 for over 6 weeks now. I am talking 24/7. I went to the ER and had all kinds of heart tests done and they came out good. So far no heart involvement. Yeah! However, I have had hypertension for 11 years and about half of that time it has been uncontrolled. I have had protein in my urine for 5 consecutive times now and WBC in my urine w/o infection 3 different times. The ER doc thought I should see a kidney doctor so I went to one today. My current GFR is CKD stage 2 which apparently is no big deal. He says he is not concerned about my kidneys as far as disease/dialysis. He thinks that my hypertension should be addressed immediately since the new drugs I am on are not helping. He has given me a new drug to try, told me to stay off sodium and NSAIDS. I have to go for tons of blood tests, get a kidney ultrasound and do a 24 hour urine test.
I have a lacy brownish looking pattern on my lower legs that concerns him quite a bit. Its funny because he asked me if I had ever been tested for RA and I told him that I have been going through the process of being DX with it.---for the past 2 years now. My RA and sed rate are slowly climbing each time I go in for a test. My internal med dr. says he thinks I absolutely have it but I have to wait for the RA level to get to 30 before the big guns (rheumys) take me seriously. So I go back every 4 months for checks. I am taking a muscle relaxer and Lyrica for the pain. I was on Prednisone 5mg and it was the only thing that really helped me but I got off of it on his advice. He said since it can be so damaging it was best to wait and see how my tests went. Anyway, about the brown skin on my legs. My regular dr. looked at it and said he had no idea what it was and told me to show the neph. Well, after the neph. said that about the RA I told him I had severe EBV in 2006 and was very sick with it. I ended up with chronic cytomegalovirus(those two viruses are like best friends, when the CMV decides to come out and play, the EBV has to run out and join him--this is even though the EBV is not chronic). I also ended up with IBS, Raynauds, and Sjogrens--so far.
Now, the thing with the lupus. He told me that the livedo stuff could be a sign of a potentially serious immune related disease. I said the RA right? He said "yes the RA but some other ones as well" I asked him which ones and he said he would rather wait and see the blood tests before he talked with me about them. So I looked at the blood tests orders and what did I see? Well, I did not see an RA test order. However I did see an ANA test order. Now I am not stupid so I know that is an order for a test for various immune related disorders INCLUDING lupus. I think he is most concerned about lupus because of the uncontrolled hypertension, the fatigue, the weird rashes on my face and my body when I go out in the sun. all kinds of stuff. So I guess I will find out in 3 weeks when the tests are all in. He also thinks I could have some kind of blockage in one of my arteries that leads to my kidneys. Epstein Bar virus ruined my life, thats funny because I thought the Bipolar Disorder did.
If anyone knows anything about the livedo stuff please let me know. I would greatly appreciate it. If I remember this board, it is very active and the people on here are always eager to help others. Thank you for that!
I have had Hypertension stage 2 for over 6 weeks now. I am talking 24/7. I went to the ER and had all kinds of heart tests done and they came out good. So far no heart involvement. Yeah! However, I have had hypertension for 11 years and about half of that time it has been uncontrolled. I have had protein in my urine for 5 consecutive times now and WBC in my urine w/o infection 3 different times. The ER doc thought I should see a kidney doctor so I went to one today. My current GFR is CKD stage 2 which apparently is no big deal. He says he is not concerned about my kidneys as far as disease/dialysis. He thinks that my hypertension should be addressed immediately since the new drugs I am on are not helping. He has given me a new drug to try, told me to stay off sodium and NSAIDS. I have to go for tons of blood tests, get a kidney ultrasound and do a 24 hour urine test.
I have a lacy brownish looking pattern on my lower legs that concerns him quite a bit. Its funny because he asked me if I had ever been tested for RA and I told him that I have been going through the process of being DX with it.---for the past 2 years now. My RA and sed rate are slowly climbing each time I go in for a test. My internal med dr. says he thinks I absolutely have it but I have to wait for the RA level to get to 30 before the big guns (rheumys) take me seriously. So I go back every 4 months for checks. I am taking a muscle relaxer and Lyrica for the pain. I was on Prednisone 5mg and it was the only thing that really helped me but I got off of it on his advice. He said since it can be so damaging it was best to wait and see how my tests went. Anyway, about the brown skin on my legs. My regular dr. looked at it and said he had no idea what it was and told me to show the neph. Well, after the neph. said that about the RA I told him I had severe EBV in 2006 and was very sick with it. I ended up with chronic cytomegalovirus(those two viruses are like best friends, when the CMV decides to come out and play, the EBV has to run out and join him--this is even though the EBV is not chronic). I also ended up with IBS, Raynauds, and Sjogrens--so far.
Now, the thing with the lupus. He told me that the livedo stuff could be a sign of a potentially serious immune related disease. I said the RA right? He said "yes the RA but some other ones as well" I asked him which ones and he said he would rather wait and see the blood tests before he talked with me about them. So I looked at the blood tests orders and what did I see? Well, I did not see an RA test order. However I did see an ANA test order. Now I am not stupid so I know that is an order for a test for various immune related disorders INCLUDING lupus. I think he is most concerned about lupus because of the uncontrolled hypertension, the fatigue, the weird rashes on my face and my body when I go out in the sun. all kinds of stuff. So I guess I will find out in 3 weeks when the tests are all in. He also thinks I could have some kind of blockage in one of my arteries that leads to my kidneys. Epstein Bar virus ruined my life, thats funny because I thought the Bipolar Disorder did.
If anyone knows anything about the livedo stuff please let me know. I would greatly appreciate it. If I remember this board, it is very active and the people on here are always eager to help others. Thank you for that!
Hopefully you will know better when you get your results back. It can be really frustrating when you don't know the reasons for symptoms, but it sounds like things will get sorted out soon.
Someone else on here will probably give you some better imformation. Good luck and take care c
As for bringing in the big guns, if your kidney function is off, then it is time to bring in the big guns NOW. Docs have a number of things they use OTHER than prednisone these days: Cytoxan, methotrexate, Immuran, to name a few. FYI, when your kidneys stop functioning right, it throws your BP off.
FYI, how high was your sed rate? Docs often will go off of the basic lab positive/neg values, but this is one of the few tests that varies between men and women. For women here's the formula for what;s normal:
ESR = [age (years) + 10] divided by 2.
So in your case, it would be 44 + 10/2 = 27. A standard result will say that your sed rate is elevated, but IT IS NOT. It would only be elevated at 28 or greater.
The second thing to know is that you can feel miserable and have a normal sed rate. And your doc should take you seriously even if he or she has sicker patients. Don't let any doc make you feel like you're less important than other patients.
Good luck with this and ask as many questions as you need to here....
Tracy
Tracy, your knowledge about tests and results is awesome! I believe my sed rate is 12 right now so it is still pretty low. It has been slowly coming up though. 3 years ago it was at 0. I have had a positive ANA test about 3 years ago also but I dont remember if the pattern was a lupus, RA or scleroderma one. Hopefully not a scleroderma one. I dont think I could stand scleroderma. I do remember testing negative for the dna one. Its kinda scary that I am getting more and more symptoms of lupus as time goes on. The medical assistant called me today to schedule my ultrasound for my kidneys and I told her I thought the dr. was thinking I might have RA or lupus because of the tests he ordered and the questions he asked. She did not say yes or no but she did say that he needed to look at the most obvious answers for my livedo stuff. I know my kidneys are at chronic kidney disease stage 2 because of my GFR but I guess that the medical community does not think it is a big deal since you can live 30 years at stage 2. He did tell me that I MUST stick to a very low sodium diet and stay away from all NSAIDS. He gave me a list of OTC and RX meds that I absolutely can not take. Excedrin being one of them---the only pills to get rid of my horrible migraines! They say I can take Tylenol, and I am sorry to say but Tylenol is like a big joke, they do not touch my slightest headaches (sorry if they work for you guys--some people swear by Tylenol!) Thank you both again I really do appreciate your answers!!!
Maybe I should see a dermatologist for all of this stuff. I did see one for my feet not to long ago. My feet have dark skin patches that are similiar to the livedo stuff and then their are these little round patches of dry scaly skin that are actually round! They look very weird and people actually make comments about them. They tell me I should see the doctor about them. Maybe they are all related! Thank you so much for this!!
Levido reticulus can be very common to have with alot of the mixed connective tissue diseases and from what I have been told, if it is actual levido reticulus it is not a serious condition. I have had it for 10 years and its only ugly, really. Doesnt cause me any real problems. Raynauds phenomenon is also another common issue with mixed connective tissue disease. It causes fingers and toes to get cold and change colors during warm weather and stress. This also is something that usually we just deal with as unless it causes ulcers they dont use medication to treat it (and there is no actual treatment for levido reticulus). The dry skin patches sound alot like something that my sister, cousins and aunt have. There is a specific name for it. They are round and flakey but arent serious and there isnt anything to prevent them. I think it is genetic. You can have a bunch of different things going on at one time and sometimes its just a coincidence (like the skin patches may be). If you have levido reticulus and abnormal blood work then this would point a good rheumatologist to start to treat you for a mixed connective tissue disease. Your kidney issues could be exacerbated if you have MCTD and the proper meds may help prevent further damadge. Maybe ask the dr. if he thinks you should start a 6 month trial of plaquenil. You dont want to be on steroids unless none of the other MCTD/:Lupus meds work for you. Its an awful drug (and Im on it) unless its absolutely necessary (and it is for some of us some of the time).
My last flare up when I felt like I was dying again all my blood work was normal EXCEPT for my C3 (compliment 3) blood test which was very low (think 22 is normal and I was at 9). My rheumy started me on prednisone and retested my C3 after a month and it had gone up. Because it was down and then went up on steroids it confirmed a flare. Sometimes though blood work can be normal and you can still be in a flare. Blood work is not always accurate which is why it can be so hard to get treated for Lupus or diagnosed with it. Did you know that EBV can be chronic? I had EBV also and was sick from it for 10 years. It is possible that EBV triggered a mixed connective tissue disease or you may still be suffering from EBV on its own. Have they tested your levels lately? That virus ruined my teenage years also...Was horrible. I cant tell you how sick I was from it and nothing worked to help it.
You should have or get copies of all your blood work that youve had so u know what your results were. If you dont think your rheumatologist is taking care of you properly (and some dont) take your blood work to another rheumy and ask them if things are abnormal why they arent putting you on meds. Sometimes we have to see several doctors of different kinds to finally help figure out what wrong with us (or to at least have everything else checked out)> Very frustrating but you dont want to be treated for something you dont actually have.
Totally agree about the tylenol. Nothing works for my pain except narcotics (vicodin). Since you have migrains, you may also want to see a neurologist as there is special migrain meds (along with pain killers) that can be used to treat them. I also had migrains as a child and they too are HORRIBLE. Gotta run but know we are here to help you.
What do your family members use for those dry skin patches? I would just like to put something on them because they itch really bad and I have tried a lot of creams and nothing seems to work so far. Its good to know they are not a big deal. They are on my feet and I do not want to have feet issues any more than I already do! Yes, using Tylenol only is going to suck. Vicodin I can not use as I am allergic to codeine. I like morphine based products but doctors usually dont give you those unless you have a bad cough, then they give you cough meds with it in it. Well I usually get bronchitis about every 3 years so I doubt I will have any real relief soon. It is a good idea to talk with a doctor about my migraines. I have had themfor so long I usually just deal with them now. But why be miserable? I am 44 and the time I have left I would like my life to be NOT miserable and maybe actually a little fun sometimes!
I think I might have mentioned to you in another post that I was actually diagnosed with McTD. Well, not an actual one but the doctors chart stated--"Mixed Connective Tissue Disorder" and that was it. So I figure they must have thought I had something going on but were not sure what it was yet.
I am sorry you had so much misery during your teenage years. I do know how you feel. I started my period at 10 and never, not once had a normal one. They were always very heavy and always lasted longer than 10 days. My cramps were horrible, like the double over kind. But my mom was tough and never let me stay home for cramps. I had migraines from the age of 15--literally as they started a month after my 15th b-day. I had so many in high school I cant remember them all. They were always so miserable. I did stay home for those but my mom only let me stay home the one day and you know how the 2nd day can make you feel so weak and like you want to throw up. That was tough getting by in school with that. Maybe that is why my mom has had such a hard time dealing with all my illnesses from this past 10 years. She actually was crying on the phone one time and told me that for years she thought I was faking it. That REALLY hurt. At least she admitted it though. I still love her, more than ever. Family is family. I saw a cute Christmas ornament today, it said "Family is like fudge--a little sweet with a few nuts" Well my family is "really sweet with a LOT of nuts" We have at least 6 bipolars, 2 panic disorders, and one schizophrenic little boy---thats what happens when a 16 yo bipolar cousin of mine hooked up with another 16 yo schizophrenic. Kids just dont think sometimes. I know I sure didnt. But my cousin loves her little boy so much and he is so good and sweet---just like fudge!!!
Anyway, thanks for writing and keep up with your own sweetness. You are a very good person!---Tamye
Actually, if the patches itch you may want to see a dermatologist because the ones my family gets do not itch. They are just scaley and ugly :( LOL. I know that going to another dr. is the last thing any of us want to do but sometimes we have to see a bunch of different dr.s because some of the stuff can be unrelated and are treated differently then MCTD is. Migrains can be a sign of other issues as well. I had horrible headaches and they were due to antiphospholipid disease which is almost identical symptom wise as lupus and treatment is pretty much the same. You may want to ask your dr. to give you the Beta 2 Glycoprotein blood test just to rule out that you DONT have APS. It can cause strokes, heart attacks and blood clots...The last thing you want to have happen to you. I am on blood thinners for liife due to this disease. You should also be tested for celiac disease. This also can cause alot of lupus like symptoms and affect the skin. Its a blood test and should also be ruled out. It can cause symptoms OTHER THAN intestinal issues. And, if you see a dermatologist, they can do a biopsy on the patches you have and if it is lupus or celiac disease it will show up.
My family has never thought I was faking anything since they were there when I had my cancer surgery and open heart surgery. My husband didnt really take me seriously until I had the open heart surgery and looked like I was dying in the hospital bed. Since then, he has been wonderful. My sister is completely clueless about how horrible and sick I am. Could really care less and does nothing to try to help me. Its been hard to come to terms that I have a family who will never be who I want them to be. They are all pretty selfish and I am just trying to accept it. My mom has told me before that she feels horrible for the way I have had to suffer my entire life. She finally seems to get it so I at least have her and my husband on my side. The others make me feel guitly for being sick. Like you said, there are always a few nutts in a family. I have several of them (though they dont think their nutty).
Ryan is screaming for me so I gotta run. Just know that there is someone else who has been in your shoes. We have alot in common and Im here to help you.
xoxox