Started with a rash. Then the joint pain. Swollen face and hands. And no one is even sure yet. Biopsy tumid lupus. Need more tests. No insurance: (
Do you have a teaching hospital close to you. We have on about an hour away and they base it on your income and have a pharmacy that also helps with meds.
The photosensitivity I’ve been dealing with since my twenties. It was a family joke how can a Puerto Rican not be able to sit in the sun. I’m so greatful for the support. Thank you ladies.
I don’t have lupus but, my sister does. Her doctor put her on a natural product years ago and it keeps her in 100% remission. Maybe it was just a fluke in her case but, don’t know. Anyways if you would like more info just let me know. Take care! Jeff
Hi, Annie you are not by yourself, my first sign was about 3yrs ago my feet started swelling one at a time and they would hurt so bad like pins and hot burning coals going thru my feet. My hands would be stiff in the mornings I would have to flex my fingers back and forths together until I was able to bend them then make a fist. I would not be able to walk for the first 30 mins every morning until the feelings or the blood can back into my feet and then one day in September 2011 I got a painful rash on my face that ran from ear to ear and my lips swelled up like plums. I went to my primary and she ran test on me and my ANA came back positive for Lupus I was then referred to a Rhumey, it took about 3 to 6 months of trail and error of trying several different meds before we came up with what worked best for me. He placed me on Plaqunel, metrotraxte, Celebrex for inflamation, Oxycodone for pain, Gabapentin for nerve pain, folic acid 400mg, vitamin D3 800mg daily and I had to be placed on a hydrocortisone cream last week for a current rash on my face. Because the Plaqunel can damage the cornea in your eyes you must have your eyes tested every 6 months and I have my blood tested every 6 months as well to check for any changes. I learned the hard way that I must protect myself from the Suns rays and I started using Neutrogena Sunblock spf 85 on my whole body there is also one made for just the face that I use. I started getting lumps on my scalp and one of them had to be lanced because it became so large and full of pus and I had to have stiches put in them so I now wear a UV protective sun hat, sun glasses, and a UV protective face mask that covers my nose down to my neck if I am gonna be in direct sun light for more than an hour.
They say that if you have one Auto Immune disease you will have two, so I also have Crohn's disease and Thyroid disease , my Crohn's disease made me loose my large intestines in 1982 and I have an Illeostomy pouch on the outside of my body. The one thing that I truly believe in and that is taking my meds and going on with my life I don't let my health keep me from doing what I want or enjoying my life to it's fullest what ever that might be for just that moment or that day because Lupus can make you very tired when you least expect it and you must listen to your body and stop what you are doing and go rest.
I won't let my health keep my from working, I am a Home Health Nurse ( how irronic lol ) that I take care of other patients as sick as I am but I never let anyone see me in pain or if I can not be at my best for them. We all pray for a cure and to be set free from all of our illness someday.
Hang in there
Hope that this helped, we are here for you
God Bless
I am really greatful for the support. That’s the thing I don’t have at home. If they can’t see it its hard for them to get it. Jeep2007 I’d be grateful for any info you can pass my way. The meds scare me. I react to everything.
I would be very interested in any info regarding natural treatments for Lupus
Thank You
jeep2007 said:
I don't have lupus but, my sister does. Her doctor put her on a natural product years ago and it keeps her in 100% remission. Maybe it was just a fluke in her case but, don't know. Anyways if you would like more info just let me know. Take care! Jeff
I too have a diagnosis of Tumid lupus. It started out as a rash. Plaquenil is the main med. Right now I take plaquenil, methotrexate, 2 allergy pills, folic acid, a multivitamin, calcium w Vit D and a depression med. I also have Cloderm cream. I have extreme photo sensitivity. I wear SPH 110 every day. My dermatologist recommended tinting the windows on my car. Since being diagnosed in 2005 I have been diagnosed with IBS, chronic pain, chronic fatigue and connective tissue disease. I am extremely sensitive to temperature changes. I try to wear a sun hat when outside. I avoid outside activities and love the shade when outside. I don’t know a lot about Tumid lupus but you can always ask me any questions and I’ll let you know my experiences.
*Mari
Thank you Mari. I’ve been in what I can conclude is a flare for maybe 3 months now. Symptoms above plus stomach upset, can’t move my arms when I’m really stressed and a lot of crying. I wanna tell people I know, thanks for the sympathy but prefer your understanding. Asking for help here is like asking them to bear my children. Which I’ve done. To look fine and feel so sick…
Big hugs! It is so frustrating to have people not understand. I am close with my family but honestly they don’t know a lot of what’s going on with my health. In the past they have not understood the constant pain. I don’t think they really want to know. This site is amazing. Lots of understanding people. Does your rash itch? My drives me crazy! I usually just itch my scalp since it is covered with hair. Like I said before let me know if I can help.
*Mari
sigh itching is insane. Antihistamine for that. You are very kind. I have 2 adult children an an ex husband all DX bipolar. So not a lot I can expect there. But I have a6 ur old by who is a joy