Hi everyone, I'm fairly new to this website and to Lupus too. I was diagnosed in September 2014 and am still trying to figure out what is going on. I had no clue Lupus even existed until I got diagnosed and I'm learning something new everyday. I'm glad I found this website because it is nice to see that other people understand what I'm going through. My family and friends are all trying to be supportive but its hard when nobody fully understands all the pain you are going through. So I try and put on a happy face when I'm around people even though I'm really in so much pain I can barely stand. I have arthritis in both of my hands and in both of my hips. My rheumatologist has tried to give me all kinds of medicine and so far I haven't had any luck with them:( and he said we are running out of options. I'm currently on methotrexate injections, plaquenil, and some other vitamins and now I am going to start orencia in a couple of weeks. Has anyone been on orencia before? I heard there are a lot of major side effects but supposedly its worth the risk because its supposed to help you feel better right away. I'm already experiencing a lot of side effects from the other medications I'm taking, so I'm scared how this is going to go. I'm only 20 years old and it's very easy to say why me? and why now? but I am trying to stay strong and take it day by day. I admire everyone going through this disease and pray that things are going well for you all.
Hi Leee and welcome, although I'm sorry you have to be here.
Is it possible that you might also have fibromyalgia? It oftentimes occurs in people with an auto-immune disease like lupus and the pain will make you miserable. The reason I raise the possibility is that if you might have it, then your doctor might suggest meds like Lyrica or Cymbalta, both of which help pain from the nerves, which is what causes a lot of the fibro pain.
I myself definitely suffer from fibro, (darnit!) and am questioning whether I might have lupus as well. It's always good to keep an open mind on the possibility of other illnesses cropping up after your initial diagnosis.
I do hope the current medicine you're on will do the trick. It's just awful to suffer so. No one should have to and yet the sad truth is that most people haven't a clue about our suffering because we don't look ill.
Good luck, kiddo!
I can so relate, I have been through all those NSAID drugs that make you sick, and not do much for pain! We finely settled on Celebrex, I take 200mg twice a day for the inflation pain, it is removing about 60% of the pain. I also take Cymbalta for nerve pain 60mg once a day, I have pain from Polyneuropathy in my feet and hands. Neurologist thinks it is tied to SLE Lupus.
I was first Dx’d with chronic fatigue, then FMS, and finely SLE Lupus. It took 30 years to figure it out!
Good luck, hope you find some relief!
hi leee03, god bless you sweetie, i have had lupus for 20yrs now, and i know how it feels when you are first diagnosed, but with all the new stuff they are coming up with to combat lupus, you have a much better chance now for feeeling better.......you keep staying strong dear.....purrs..catspaw1955
Welcome to the group....all here are very compassionate, understanding, and caring. We try to answer questions if we can. It's wise for you to say you take one day at a time, because that's all we 'can' do. Learn as much as you can about Lupus, and have your family and friends also, that way they can understand what you a re going through, and possibly help you along the way. The main thing is to rest when you need to...don't over do because you don't want to miss out in the fun...it will come back and bite you in the butt.......... I personally haven't been on Orencia, but if you are so concerned, make sure you have a heart to heart talk with your doctor. Good luck and feel better.
Its always hard I was diagnosed at 16 and honestly you never stop asking why me. Its a learning disease , I like you never heard of lupus every medication has different side effects if any , every body reacts different . Hell sometimes not even the doctors can explain my symptoms. Best of luck and HANG IN THERE
Welcome… so sorry its very hard. Im 24 i was diagnosed at 4 years old been such a struggle. There are some things that have helped me whuch is vit d zinc probiotics fish oil no dairy low sugar diet. I also use apple cider vinegar braggs my docsays during a meall twice a day for innflammation i know what your going through hang in there and there’s a god that loves u no matter what! I take alot of curcumin too i couldnt live without this
my advice is see your family doctor and get your thyroid levels checked. I did and lots of the pain is gone. I tried orencia last year-bad side effect--headache, neasea, dirrehea, heart pounding, cant eat, cant sleep. no more of that.
good luck in your search to feel good
Thank you everyone! It really means a lot seeing all of your support and advice. I have my next doctors appointment with my rheumatologist in a couple of days and am definitely going to talk to him about some of the stuff you guys are talking about. I also start my first round of Orencia that day too so hopefully it works and I don't get that much of the side effects! I'm praying for all of you and hope that you are doing well!