new to the chat room
Hi! I was diagnosed with SLE in 2002 and have visited your site many times seeking out answers. Today I decided I needed to join in on the conversations and to also let out some of my frustrations (sorry).
When I was first diagnosed I was started on prednisone and plaguenil. Since then I have developed asthma-associated with lupus and shrinking lung, peripheral neuropathy/polyneuropathy, and osteo necrosis. I currently take 30/35mg of prednisone, 400mg of plaguenil, 600mg cellcept, 900mg gabapentin, nexium, hyzar, advair, singulair and use a nebulizer 4 times a day.
I am finding it harder and harder to work, but have no choice as I support myself. I usually make it through Monday and Tuesday okay, by Wednesday I come home and go to bed, Thursday I can barely get out of bed and by Friday I am in tears from exhaustion and pain. I spend the weekends in bed in order to prepare to start all over again on Monday.
I am so tired of being tired and being on an emotional roller coaster from the prednisone. We are working on getting me down on the prednisone but everytime we adjust, either the lupus flares or the asthma flares. Anyone have any suggestions? Is there different meds I could be on that would help?
Any advice you could give would be greatly appreciated.
I just wanted to say welcome to our forum!!! We are happy you are "officially" here. I hope you find this place as helpful as I have.
As for your recent troubles with flares, have you been to the Rheumy recently? Have they run recent bloodwork?
Thanks for the welcome. I go to the rheumatologist this week. Just had blood drawn this past Tuesday and should get the results when I go to the rheumy. I forgot to mention that I'm on Oxycodone 10mg for shingles - second go around! It's like a never ending battle!
I'm usually not a complainer, infact the pulmonologist gets upset with me as I wait too long and then end up in trouble. I just hate to complain because I don't know what is acceptable and what is consider unacceptable with both the asthma (though I have gotten better about recognizing the signs) and with the lupus. I have made up my mind that at my next appointment with the rheumy I am going to be totally honest and let him know exactly how I feel and not worry about what he thinks - he sometimes makes me feel like I'm crazy and is a little intimitating. I'm trying to find a new rheumy who is a little more understanding and easy to talk to.
I have a question: I know we are suppose to exercise. What are some of you doing in the way of exercise. With the asthma I can't go outside and walk most of the time (also because of the sun), I can't exercise in the pool at the Y or physical therapy place because of the chemicals and the asthma. Any suggestions?
hi Red -
I think that's a great idea about making sure you are completely honest with your Rheumy, no matter how he reacts. And it is important that you find a doc that is a good listener. I hope you find one.
As for exercise, I do yoga. And I do love to walk, when I can. The weather here is pretty crummy in the winter. I also got a Schwinn Aerodyne exercise bike I can ride at my own speed indoors. I really recommend yoga. Even when I'm feeling my worst, yoga really helps. However, there are lots of different kinds out there and some can be the "no pain, no gain" kind. I would never go that way. I practice Kripalu yoga, which involves relaxation and lots of modifications if poses don't work for you.