Hi. New to the site

I was diagnosed with SLE 3 years ago, after being unwell about 5 years. Have a circle of friends who don't really understand what Lupus is. I've had an heart operation, pleurisy and blood clots because of my heart. I'm on medication now which keeps the Lupus under control but I still suffer pain every day, some days are worse than others and have lots of flares. It seems to be getting worse month by month.

5 Replies

  • Hi Lancslass1962,

    Welcome to the site. I hope that you find it a useful source of support and information. I'm sorry that your friends don't really understand lupus - this is unfortunately a common problem, as I'm sure you will hear from other members of this community. Have you ever been to a lupus support group meeting to chat with other people with the condition? If you're interested in doing this, let me know which area you live in and I can give you information about your nearest group.

  • Hi Paul. Thank you for your response . I'm in Lancashire

  • I'm not sure how far away from it you may be, but the Manchester Royal infirmary has a lupus clinic headed by Prof Ian Bruce.

  • Thanks Paul. It's not that far from me

  • Hi, I'm so sorry to hear you are going thru this. I really wish I could say it was different but I've come to learn that the vast majority of people I know don't understand lupus or the severity of the disease. You will find out who your real friends are. If they really want to know they would look into the disease. It would only take then a few minuets to google it. Yet it seems like most don't, even those who say they are thinking about me and praying for me. A lot of friends also are interested for a little while but when they realize that you can't give them the answer that you are getting better and soon be back to normal it seems like they start dropping off. I know it's hard, and I'm not at all trying to be negative, just realistic. Yes there are lots that won't be there for you or understand, but the few that do really care about you. Hold onto and love those people. I kind of see the disease as a way God showing me who is real and who is just friends of convenience. Also sorry to hear each month keeps getting worse. I've been progressivly getting worse the last couple years as well. It's disabled me now by how severe it's become. All I can say on that is hold out for better days and keep looking for the best combo of treatment to give yourself the best quality of life you can have. Don't just leave it up to the Drs. When you have a illness like this you must be proactive, make sure they are having you try whatever options there are to see if you can get some relief. I know options are limited with lupus. We've had to throw everything at mine. Currently I'm on high doses of steroids, NSAIDs, plaquenil, nortriptylin, benlysta infusions, and getting ready to add methotrexate injections weekly to the mix. Lately the infusions of benlysta haven't been enough. They would wear off at 3 wks instead of 4 and I would be in horrible shape. So we started doing them every 3 wks. I was starting to do a little better and able to taper the steroids down to maybe 18mg a day. But then this year my insurance as refused to pay for them every 3 wks and will only give me 12 a year, and my dr had to fight them to even pay for that much. Well having to wait longer has mad my SLE really go crazy and I've been At 25mg of pred or more each day just trying to survive. Really hoping the MTX injections will be the answer and help get things under control so I can reduce the prednisone. I've been at around 20mg continually for the past couple years and it's really taken a toll on my body. I don't know how insurance and things work for you guys but here in the states this year it seems like the new thing for all the insurance companies has been they are trying to deny treatment for those of us that been receiving benlysta. It's so expensive that they don't want to pay for it, a lot of other benlysta patients have been cut off and it's sad as for some benlysta has given them there life back. So sad that you have to fight for life saving treatment. Anyways didn't mean to go on for so long. Just want you to know you aren't alone and hang in there, keep looking for options to talk with your rheumy about, sometimes I think even the best ones are so overwhelmed with patients that they don't think about how adding one little thing to your treatment can make a huge difference for you. How things get better soon.

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