My doctor here in town got me in this morning. Neck swelled more & area around port & the vein its attached to were swollen more. Overall I felt lil better steroids kicked in. Discussed that even though I have become a very hard stick we r having lots of problems w/the port so we r going to take out. She’s reluctant but it needs to be done. She is going to wait for the swelling to go down & the lupus to calm down from attacking my lymphatic system. My WBC is low too. She doesnt to run the risk of them opening me up & allowing infection is. I cld get really sick. Same reason y no hospital admit this time too much bacteria & germs. My doc was pretty concerned & i am too. She acknowledged that by blood work is off because of meds. She is also concerned because the lupus is becoming more & more severe. She wrote a referral to the rheumy i’m trying to get in to see. She is concerned about the lupus attacking my blood & wanted to start me on coumadin but I refused. Sticking w/aspirin And yes I have Sjogrens Syndrome. The gland under my neck is blocked. I’ve experienced it before. Its just more severe this time due to i’m having a severe flare w/multiple systems attacked. I tld my doctor that this flare is taking a lotttt out of me physically. I can feel it. Since my lymphatic system is under attack & my blood seem like I can regulater my body temp, keep sweating, short of breath & body feels exhausted. She encouraged me to hang in there. She is a neurologist. If it wasn’t for what she has done so far I think I’d be a lot worse. She is the only doctor I trust. The only problem is her specialty is MS & Epilepsy. So we r working hard to get a good rheumy on our team. And yes the steroids & immunosuppressive meds increase my risk of Cancer. That’s y I had the biopsy becuz the docs were concerned about lymphoma but i’ve been on other meds they weren’t as effective. My flares r severe and the help the best & fastest for me. Well I am heading to bed to get some much needed rest. GN & may God continue to watch over & protect everyone tonight. This too shall pass! Brighter days r ahead!!! #Healed
Latasha,
I’m glad you made progress with your doctor helping you! I am in a very similar situation. Well, I don’t have an infection but I am not getting any better and have befn in a flare for two years. I just feel sick and in serious pain and fatigue regardless of the meds I am on. My breathing is bad, I’m dizzy and have had to stay on my oxygen. I do have faith that God will pull me through. I’m just getting impatient. I see remission in my future I’m just not there yet.
Get some good rest and get well soon!
Hugs-tina
I have been having problems for 7 yrs now. I have moments when I have minor flares & almost forget I have anything but I flare a majority of the time. Is there such a thing as true remission? I dn’t think so. I think the activity of the disease just decreases because if there is I sure wish it would happen to me! @Ann A. I think we r all brave. U have to be in order to find the strength to get up everyday not knowing what the day will hold only believing whatever it may be u will make it through. (u made me cry) Lol. Thanks for the complement because on those days its flaring severely I dnt feel so brave I feel like giving up, but God won’t let me. God keeps lifting me up & telling me to keep holding on!!! I have to give this all I got eventho sometimes I look up to God & say take me home i’m tired (jus being honest). I have 4 children that need me. So Lupus the fight continues- u may have won this fight but the good Lord assures me I will win the battle!!! 
Have a blessed day every one! Much love.
My Monthly lab results for Feb. ANA SED RATE are down. Yippee,
Still need to take my 5 mgs of Prednisone, if they go down in March then its down yo 4 mgs
@Bozz63. That sounds greatttt!!!
Hang in there, it gets easier once they pinpoint areas affected. Then they can put you on proper meds.
Doesnt take it away completely but goal is Remission
I have on and off swelling of the lymph nodes in my groin. VERY painful! I didn't know they were related to lupus until I read up on it. It is amazing how much is involved with this disease. It is so complex and varies person to person. It really is no wonder most lupus patients are dubbed hypochondriacs before they are finally diagnosed, and even after. We are not hypos....we are victims! Anyhow, I am on Plaquenil and am doing alright, but my hands and feet constantly swell. It isn't taking care of that problem. So my rheummy prescribed steroids. I have had the bottle filled and is sitting in a drawer. I don't want to take it. I know I should try it to see if it takes down the swelling. I just don't want to deal with the possible side effects. I keep asking myself, "is it really bad enough?" We'll see....
I had that “bottle of Steroids” for two years before I started taking it. It really does help. I read that it is the higher doses that are the most dangerous. I am on 10mg. Daily but feel the best on 20. I am working up to that in small doses to get the least amount of steroids with good effects. Good luck and be well!
I was hesitant to take them too. I have been on a lot of other meds but my flares r so aggressive the steroids seem to be what work the best for me. I have been on them for over 2 yrs. I just had a bone density scan. It was low but ok. I did gain 60 lbs but w/a change in my diet- Vegan lifestyle “Eat To Live” weight is falling off. I’m lost 50 lbs. I have been unable to upload pics on my old laptop & phone. I have a new laptop so hopefully it will work. I have developed some side effects: sometimes I feel extremely irritable & anxious, weight, changes to my skin rips easy & very allergic to things, an even more compromised immune system. However the pros have outweighed the cons so its worth it for me. :).
Jenniferforhealing said:
I have on and off swelling of the lymph nodes in my groin. VERY painful! I didn’t know they were related to lupus until I read up on it. It is amazing how much is involved with this disease. It is so complex and varies person to person. It really is no wonder most lupus patients are dubbed hypochondriacs before they are finally diagnosed, and even after. We are not hypos…we are victims! Anyhow, I am on Plaquenil and am doing alright, but my hands and feet constantly swell. It isn’t taking care of that problem. So my rheummy prescribed steroids. I have had the bottle filled and is sitting in a drawer. I don’t want to take it. I know I should try it to see if it takes down the swelling. I just don’t want to deal with the possible side effects. I keep asking myself, “is it really bad enough?” We’ll see…