Hi everyone: My name is Judy. I was diagnosed with... - LUPUS UK


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Hi everyone


My name is Judy. I was diagnosed with SLE about 14 years ago. I have good and bad days like everyone else. Sometimes when I feel well I go in denial and then boom a flare sneaks up and i face realty. I've been under a lot stress lately and find it really takes a tole. My whole body is swollen and painful. Even my eyelashes hurt.

I'm over here in California, USA and stumbled on this site and find it helpful so if it's ok i would like to be a part of your community. I'm interested how treatments and meds compare.

5 Replies

Hi judylynne, welcome to the site!!! There a few members ' across the pond', who regularly post. Hope you find it as helpful as we do.

Hi Judy, welcome to the site. I can completely relate to the good day/bad day feeling. It is so easy for us to think when we are having a good day(s) that perhaps it is gone.....only to find wham ......no it isn't. What I find amazing is why I even think it has gone.....and that the mind does play funny tricks on us with lupus. I think it is just wishful thinking. Are you able to get a steroid injection for your current pain.......I was similar a few weeks ago and it certainly helped me.....though I think the injection is wearing off slightly now. Is it very expensive to have lupus in America......do you get the support you need?

Sending you a hug and hoping that this flare up eases real soon for you x

Judylynne in reply to mstr

Thank you for the kind words. You made me smile. I'm lucky that I have medical benefits through my employer but the majority of stress is from my job. I can pick my own drs and hospitals so I feel I have a good core group with good care. I don't pay deductibles and have a moderate copay for services. Rx is anywhere from 15 to 50 dollars copay depending on the drug but name drugs like enbrel are very expensive and the insurance companies don't cover much so my regimen is made up of pills. There is a support group that meets monthly but after 8 or 10 hrs of work, it's tiring to go. There isn't much media or organizations that get the word out about lupus. The big awareness here is breast cancer and diabetics. I wish there was more awareness about our disease. I have a 24 yr old daughter that I keep a lot from so she doesn't worry and the rest of my family is on the east coast so I am on my own for support other than the drs.

Hi, Judylynne,

I am also a US citizen, but east coast! This site really helps me and I hope it does you! When meds are mentioned by those in UK I don't recognize most names. I don't know if we here just aren't as advanced in treating lupus or if we have same meds by different names. I am finding that heat and humidity play a real game with me, and currently I am taking no lupus meds daily. If I have a bad flare, I go on a prednisone pack and that happens about 6 times a year. Otherwise, I do take Ibuprofen for pain, but it has to get pretty bad before I do. Plaquenil did nothing but make my stomach hurt (it may have helped a bit with autoimmune issues but I wasn't on it long enough to know, because the stomach issues did me in. People do look at me as if I'm lazy, because many times I make plans that I have to cancel due to fatigue. I find that walking helps, and even if that means inside a super store! I am going to try swimming as I have been told that exercising in water helps. I also get massages when I can afford them, but be sure to tell them you have lupus and let them know when it hurts.

Stay in touch and keep your chin up! Jbug

Hi , I'm in Sacramento , California! I'm with ya on everything. I always overdo it on a day i feel better.i will start thinking to myself that mabye its over.mabye I'm finally in remission. But then my body shuts down on me and reality hits hard. I have SLE and Sjögren's. On lots of treatments and tired

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