I was diagnosed with lupus about a year ago, main symptoms joint pain, fatigue, rash (although I have had symptoms off and on for 13 years prior to diagnosis). Over the past 2 weeks I have started aching really bad, especially at night. My legs hurt so bad I can't lay still. My hip joints hurt also and I feel like someone is sitting on my chest. I've also been getting very short of breath after walking up a flight of stairs. Fatigue has been at its worst, I actually fell asleep at a stop light last week while driving. I've left a message for my rheumatologist as I'm thinking this is a flare, waiting on a return call. I've been really struggling with trying to take it easy. Work has been very busy and I don't want to take off, but finally I gave in today and called in. Unfortunately, when I return to work I will be twice as busy trying to catch up.
Questions: When you have a flare, what does your doctor do? Do they normally do blood work? THe last few times I had a flare (not as bad as this one) they increased my Prednisone for a few weeks and that was all (no blood work or anything else).
Anyone find anything that will work for severe pain at night? I'm on Tramadol 50 mg, although it's not helping anymore. I have tried Aleve, heating pads, stretching, massage....nothing has helped.
My doctor has said the next step is Methotrexate. For the past year I have been on Prednisone (currently 5mg, can't seem to go any lower without flaring), Plaquenil 200mg 2x/day, Cymbalta, asprin, Tramadol 50 mg, vitamin D and B12. I am scared to try Methotrexate....I work in a hospital and I'm afraid of picking up an infection. Can anyone think of any other options?
Last question, does anyone find that resting a lot really does help? I find when I am busy at work it distracts me so I don't notice the pain, but as soon as I get home I crash. I feel bad because I can't get housework done or give my kids the attention they deserve. So I get putting on a fake smile and pretending everything is fine and try to live a normal life until I finally break down. Any tips for finding balance?
Thanks for any suggestions!
I am on all the same meds as you are and I am finding no relief either. I am scheduled to go to another dr in a week. I hope they can help me. I have the pain and the chest weight you speak of. I have also tried the rest thing, but I don't know if it helps. These days, I have no choice but to rest. I have no energy to do anything. I have inflammation of the heart, but they don't seem to find anything on imaging. I am stumped with that one. As for balance, I can't figure that out either. I am a stay home mom and I am finding it difficult to keep up with kids and housework. I am fortunate they understand I am sick, but it makes me feel bad to say "I am tired or I don't feel good right now". I guess, I really have no good advise for you. I just wanted to let you know there is someone who feels the same and can relate to what your going through. I hope you find some relief soon. Please keep us posted as to what happens.
Creekbank, i know how hard it is to not be able to do everything you want to with your kids! My dayghters b’day is tomorrow and I havent been able to get anything ready.
I went to the rheumy today. He said I have pericarditis, just based on my symptoms. He uped my prednisone to 40 mg and will gradually taper over the next several weeks. He wants to discuss methotrexate again once I recover from this flare. He seemed to think I’ll be feeling dramatically better by tomorrow, but somehow I am doubting that. My rheumy is retiring in a couple months. The doctor that is replacing him is much younger and I have heard excellent things about her. I’m hoping that will be a good change.
Good luck with your daughter's b'day. I have 2 kids with b'days 4 days apart. Us mom's always try to do our best to make their day special. I also hope your new rheum is good. Good luck!
Creekbank, i know how hard it is to not be able to do everything you want to with your kids! My dayghters b'day is tomorrow and I havent been able to get anything ready.
I went to the rheumy today. He said I have pericarditis, just based on my symptoms. He uped my prednisone to 40 mg and will gradually taper over the next several weeks. He wants to discuss methotrexate again once I recover from this flare. He seemed to think I'll be feeling dramatically better by tomorrow, but somehow I am doubting that. My rheumy is retiring in a couple months. The doctor that is replacing him is much younger and I have heard excellent things about her. I'm hoping that will be a good change.
I am living proof that treating a Vitamin D deficiency is very important. Ann suggested that I have my Vit D tested, and I was very deficient. I take Vit D drops in my water now, and along with making sure I drink plenty of water, reduce caffeine and I started taking Savella I feel like a new woman. I took this a step further, and I'm improving my diet by eliminating processed foods and eating better. 6 months ago, you couldn't have told me that I'd be searching for full time work now.
Ann A. said:
Misdiagnosed Vitamin D Deficiency
Are You Vitamin D Deficient
My last flare was very small and required nothing more than cortisone cream and a 14 day Medrol dosepak (prednisone). I have been in remission for most of the past decade. The most significan thing that a physician has done for me in decades is to reduce my pain and fatigue by increasing my vitamin D levels.
Have your physicians corrected your vitamin D deficiency? If not, this could be an important factor in your increased pain and fatigue. Some physicians are aware of how important this is for people with lupus and some are not.
Low vitamin D levels can produce pain and fatigue in people who are otherwise healthy.
Low vitamin D levels are linked to more frequent and more severe flares.
If they have not already done so please ask your PCP to test your vitamin D level -25(OH)D, to devise a supplementation rate that will bring you to a sufficient level, and to help you create a plan to stay sufficient year round.
This can seem like a small and unimportant thing, but I promise you that it is very important.
I had all of the symptoms and I was incredibly adverse to taking prednisone, however after several months of ups and downs with low doses, my doc insisted that I take the prescribed meds or I would no longer be welcome in the practice. I am SO glad that I did. It's been about 4 months now since she put the "smack down" on it and I feel better than I have in several years. Sometimes, especially during the first year, it's very much trial and error until you find what works for you. All Lupus is different which means all treatments are different.
Big hugs and health,