I was diagnosed 2 months ago and at this point am feeling pretty fortunate. I am 50 years old and at this point I have no organ involvement. My biggest issues are chronic hives and terrible swelling and pain in my feet. My rheumotologist put me on plaquenil and prednisone and I realize that it takes the plaquenil a few months to kick in. My question is and the thing that bugs me is how do I decide if all the pain in my feet and shoulders ect are actually a result of lupus and not just my age ?? Lol. I absolutely don’t want to be a complainer and whiner but if there is more that can be done to alleviate the pains maybe I should talk to my doctor again. I just don’t know if it’s something that I just have to learn to live it or not…
Hi Jean - I'm similar to you in that I got diagnosed 6 months ago and I'm 58, no organ involvement. I was diagnosed as a result of acute, intense pain in my arms, wrists and hands that wouldn't go away. I had the same questions about the pains in general, but when the prednisone calmed pains I had attributed to osteoarthritis (knees, ankles) I realized alot of the pains I had experienced were actually due to Lupus.
Plaquenil definitely takes time to work, I went almost the full 6 months before I was able to wean off the prednisone. I've been off it almost a week now and actually feel "pretty good."
Tell your rheumi about all the pains you experience - let the doc decide if they're Lupus-related or not. Its really important to tell your physician about all your pains and symptoms - don't feel like you're a complainer. There are so many seemingly unrelated symptoms of Lupus that its important to let the doctor know so he/she can recognize early signs of new organ involvement.
Look up "The Lupus Checklist" - that's a good tool to use to keep track of what you're experiencing and a good way to let your doctor know.
Good luck and be patient with the Plaquenil!
Nikki, thanks for the info. And yes I’m just going to have to have a sit down with my rheumy and explain things more clearly to her. I have only seen her twice but was super happy with her care and suggestions. I’m so used to being a person that is on the go constantly and other than this new lupus deal I have never had any health issues. So it’s disheartening to feel like this and feel like right now there are things I have difficulty doing without a lot of pain. But I’m sure things will improve as time goes on and the plaquenil starts to work…
Jean, I understand completely! Before Lupus, I had never been seriously ill with anything more than a bad cold. To go from doing pretty much anything to pretty much nothing is a big adjustment. I was "lucky" enough to lose my job right when I was diagnosed, and that gave me the luxury of staying home and relaxing (sort of) while I adjusted to my new life with Lupus. I think not having to struggle to go to work and over-exert myself, and being able to listen to my body (if I needed to sleep all day, I did) has helped me to feel better now. I found the prednisone to be invaluable when I would start to flare and ache all over - my rheumy would adust the dose up and down in response to my symptoms. I didn't want to be on prednisone (love the moon-face, NOT!) but without it the pain was unbearable. I'm glad to be off prednisone now but will go back to it in a second if the pain returns.
Oh Nikki that is almost exactly where I’m at. I’m very fortunate that I don’t work outside the home so can kick back and rest if I need to and my husband is terrific support so that’s invaluable. I feel awful for the people that “have to” go to work everyday and still deal with all that goes along with lupus. My hats off to them !! If I can ask how many mg. of prednisone did you have to take to realize it helped the pain? I can not honestly say that I don’t feel any better on it and maybe my feet actually are worse as of late. Maybe the dosage needs adjusted. Thanks for letting me bug you. I don’t know of anyone else that has lupus to talk with.
The max dose I had was 20mgs, 10 in the am and 10 in the PM. That relieved the pain within hours. I was steady on 10 mg in the am only for a while and couldn’t go lower. Eventually I dropped to 2.5 and 0 and the pain came screaming back. Back to 20, start weaning down again, etc. I was lucky, other people on this board take much higher doses.
It’s no bother! We have to stuck together, people who don’t have it don’t understand Lupus. We do!
Knowledge is power!
I know how hard it is to talk to your rheumy about pain. I'm grateful that my doc doesn't make me quantify it, admitting that it really is impossible to do so fully. Even so, I dislike admitting that I still hurt. I want so badly for thing to go RIGHT, and I resent it when my body does not cooperate. I feel like I am failing (as if this were some sort of test) when what DID work doesn't work anymore, or works less effectively. It's tricky, because I have to admit to MYSELF that I'm hurting before I can admit it to my doc, and that isn't always easy. I fight against having to take ibuprofen, and tend to wait until it's undeniable that I'm in pain. I shouldn't do that, and I really am trying to overcome this inclination, but it's difficult.
But by all means, DO tell your doctor about your pain. Try to be as honest as you can. If you are like me and hesitate, or doubt yourself when you are face to face with the doctor, I have two suggestions. Take someone with you who will help you 'man up' to telling the doctor what it's been like, and/or keep a pain journal. Define your pain as best you can in it, with dates, so that you can look at it and see just how essential it is to share with your doc.
I'm a little surprised that the prednisone hasn't helped at all, but perhaps your dose isn't high enough yet? It makes such a significant difference, when at the right dosage for you and your pain, truly it does. If it isn't working, your doc DEFINITELY needs to know this!
::hugs;: Hang in there! I'm only two weeks today into my diagnosis, though I've suspected it for a long while now. (I've been here about a year, I think?) This is a great group for support, so I'm glad you found us!
Thanks so much for the encouraging words, support and advice. I am on 5 mg. daily after tapering down from 10 mg. for 7 days and then stepping down again to 5. I can’t say it does anything right now to alleviate the pain or swelling. And I have taken prednisone at a much higher level in the past 3 years for chronic hives that we couldn’t get under control. I had good results then. I agree the dosage is probably the issue so Monday I will call my rheumy and talk to her about it. I am so glad I found this site and have gotten great info. already and wish us all the best going forward.
Good luck! Hope you can get it under control!
Hi
I'm lucky the only pain I have is osteoarthritis in my knees. I've been on plaquenil for over a year now. My mouth sores are completely gone. My rash on my extremties isn't quite so bad My new thing is dried skin in my nose and ears., and extremely dry mouth. I finaly got Riteaid dry mouth spray and it works pretty good. I have one upstairs and one in the car. The fatigue has been real bad lately, worse than usual. I went to Vegas 2 week ago and I had to go to my room twice day to nap. Went out to dinner last night with friends and they came back to the house for coffee. I didn'tmind lying down on the sofa because my friends understand. My hat is off to the "girls" that work full time, I know I couldn't. I walk up one flight of stairs and I have to lay down. You can only do what your body will let you do. If you try to push yourself you will pay
Take care everyone
Cindy
Hi Jean,
I was diagnosed at the age of 53 and have a laundry list of other autoimmune diseases. My Rheumy has me keep a daily journal on pain and what number it is on a scale of 0-10. I also document what I've done during the day and naps or resting that I've needed to do. It's very important to let him know, so they can properly track your lupus.
The important thing to remember is to rest when you need to and to put yourself first. If you're like me you've spent your whole life taking are of everyone else, so this is a very difficult thing to do. I know if I push myself and overdue it that I will pay for it the next couple of days. I had to learn to listen to my body and you will too.
I wish you the best!
Della