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.

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Lupus

deleted_user
deleted_user
Hi Everyone,
I am new to this group, diagnosed with lupus a week back. I am 31 and had a miscarriage at 8th week last december. My Gynec's report showed that I have autoanitbody during the first 2 weeks of pregnancy and my hemoglobin level was so low at 8.4, but she didn't ask me to take any medicine for the autoanitbody part and I also thought it is perfectly fine. after i lost the baby, with in a month i started getting red rashes in my leg with severe joint pain in the knee and ankle. had low grade fever too.. And my hgl level was still low. I was put on 20 mg prednisone. after a week i was again fine and went for a trip. by the time i was back from the trip got my second flare up. this time more severe. was not able to go to work and again on prednisone 40 mg...went to a rheumatologist and underwent a chest Xray , blood test and urine test. he wanted to make sure that the flares hasn't affected lungs, kidneys etc.. all the results are normal except my blood work. which has my anit ds dna positive, complement C3 and C4 at very low levels and hgl at 8.7. I have been asked to take off from my work for 2 weeks. now i am taking prednisone 60 mg, hydroxychloroquine , vitamin D and calcium and also levothyroxene as i have high tsh levels too.my Rheumy wanted me to see a hematologist too, meeting him in a weeks time.
I was perfectly alright 3 months back and i can't believe i am in this plight now. i feel so strange gets annoyed so easily.not able to do my daily activities. I got my job with lot of difficulty and now i am not able to goto work, i am so depressed.
and I have no clue whether i can have a baby any soon with all these issues..due to my prednisone i have a itchy scalp and my face is so swollen and have gained 10 pounds. fighting depression badly
Fortunately i saw this group today and i am here.. friends i need all of your support and advice
deleted_user
deleted_user
welcome you are in the right place. Many people on here understand what you are going through.
deleted_user
deleted_user
Hi there and welcome to the group. Read as many old posts as you can and the advice column. I am sorry you had a miscarriage. It is good you are seeing the hemotologist. Hugs Marilyn
deleted_user
deleted_user
I too am new to the group and have had a similar experience. I miscarried in January around 8-9 weeks and a month or so later began having inflammation of the joints in my hands, knees, and feet that hurt so badly. I also had pleuritis that really limited my ability to exercise (even swimming) or other physical activity. I am now tapering off the prednisone - I'm now at a sub-therapuetic dose and doing fine with the exception of pain in my back when I take deep breaths.

I too am so sad about how long I will have to wait to try again to get pregnant. My doctor said I should wait 6 months after this flare up is over - and as long as I don't have another flare in that time period. I am 29 years old and finally allowing myself to think about getting pregnant and having children after MANY years of "being smart" and waiting until both my husband and I were out of school.

This group is good because it helps me know I'm not alone. Shirdi, I will be thinking of you as we both continue this journey.
kshort49
kshort49
Welcome-I so sorry that you have been having such a hard time. You will find this site a very helpful place. People here are so great, and it's good to be able to talk to people who have been through what you are. And you will find a wealth of information. I hope you feel better soon. God Bless. Kathy
deleted_user
deleted_user
There are things sometimes we just don't understand. I was told that I had the same auto body and that if I even tried I would be putting my life in jeopardy. There are things that sometimes don't make sense but one is for sure medicine is not always the answer. How long have you been on your meds? There comes a time where you can switch it up and you will see the difference, like one day yes and one day no. Also prayer is key...I know you may not be able to work right now but take this time to reflect who you are and grow in spirit. Being depressed I have been there is not make anything better I have been there. Take care and God Bless
deleted_user
deleted_user
I understand except for the part of losing a baby. I am very sorry you had to go through that, my daughter had a miscarriage and it's such a sad experience, one that will always stay with you. My response would be "To be absent from this body is to be present with the Lord" At least you know where your child is. Lupus is new to me too. I found out I have lupus 2 months ago. It is very challenging and hard to live with on a daily basis. I also had to leave my job. I hope you feel better and flare ups won't come that often Kim (1lovedgamma)
deleted_user
deleted_user
Hi overlook, Marilyn, felicitiblue, kathy, ideal123, ilovedqamma Thanks much for your replies. and felicitiblue as you said i will be watching you too in this journey..you all made my day :-) feel i am not alone..Also happy to know that i am in the right place..would be going through all the old posts and advice column
God bless you all and take care
Hugs shirdi
deleted_user
deleted_user
I haven't been posting much on here so i'm fairly new too.

shirdi and felicit, sorry to hear about your recent losses and your flares. Same thing happened to me last year and it flared into kidney involvement, although i do have another kidney disease. swelled up completely. I was initially treated with cellcept and prednisone 60mg. I'm on cellcept and plaquenil, vit d, calcium right now. I've had thyroid probs too. i think the meds helped to stabilize it.

I will keep you guys in my prayers.
deleted_user
deleted_user
I wish you well, and am sorry for your diagnosis. My daughter is now only 28, and had this terrible diagnosis rendered 16 years ago. It is a very long story, so I won't go into all that. My wife has been so distraught over our daugher's prognosis, that she has also gone downhill from all the stress, the lack of caring by so many who don't understand this disease, and I now have two disabled people at home. My ability to render a huge amount of history is not possible here, and I'd have to refer to years of lab works and history to even bring all the autoantibody reactions back to mind. The main thing to remember is if you' ve seen ONE Lupus case,,it is distinctive for YOU mainly as I find no two cases are exactly alike. Keep the faith as best you can, and take this one day at a time. It's not easy, but I will help what little I can in support, within my own limitations. I am very fatigued from the years of fighting all kinds of people and adversities in this battle. but will continue as best I can to deal with it from a caretaker point of view. Best wishes.
deleted_user
deleted_user
Hi everyone,
New to this site and I am currently being tested for Lupus. Almost a year ago I started with a severe headache that landed me in the hospital because my body started spasming. Since then I have been to many doctors and had many panels of blood work. Ana is positive 1:380 also tested high levels for Sjogrens antibody, but I seemed to be getting no solid answers from the Dr's??? I also had unexplained rashes that would come and go and sun exposure skin bumps..The many concern that has been happening on and off for almost a year is uncontrollable body jerks or body spasms accompanied with fatigue. Has anyone had any of the symptoms with Lupus?
Thanks
Deb
deleted_user
deleted_user
Debralee, I was diagnosed 4 years ago and have recently begun to have head and body tremors. The Rheumie, neurologist, and PT told me it is from extreme muscle weakness. I am not sure that this is your issue or not, but you might want to check with your doc. I also hear your frustration with the medical profession. I have been out of work for 6 weeks (4 in Feb & now 2 in April) and have been sick since Dec. and no one is giving me any solutions for me either. Knowing what is wrong in terms of diagnoses, but right now I would settle for health and not knowing. I just went on steroids so hopefully they will help! Take care....
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