My Rheumy is amazing! I had a follow-up appointment with her today. My sed rate is still high so she is increasing the Methotrexate to 8 pills a week. She also gave me a rx for tramadol. We are both hoping this will help me sleep. Labs again in June and if my sed rate is still high she going to start me on Sulfasalazine. My labs will include two tests for muscle inflammation. It is so nice to have someone finally listen!
So glad to hear! I know how much of a RELIEF it is to have a rheumatologist that listens and cares. Very happy for you.
I agree. I wish I could find the right dr. Sometimes I think even the Dr’s forget that lupus is the “but you don’t look sick” disease. Ya. I don’t look sick. That’s great. Except for how I feel! Lucky you found a good one!! Keep her!!
Awesome. …It took me 5 rheumys to find the great one I have now. In fact I ended up with him because my pcp was mad that my rheumy wasn’t doing anything for me. She told me to stop seeing the idiot, and referred me to her rheumy friend. I hope the tramadol works for you, it didn’t work for me. Getting off of it was horrid and now I take morphine with valium for the breakthrough pain.
I hope she is amazing enough to have a discussion about your concerns based on outside information… Sulfasalazine is often used for RA, which might be why she’s thinking of it, but all sulfa drugs are known to induce lupus in many cases!!! Which may be drug-induced lupus (where it’s from the drug only and goes away when it’s stopped, this only applies to non-lupies!) and also flares in SLE!! Some patients might be fine (genetically be better-suited) or others more sensitive, according to this article I found quickly when I was double-checking the connection before writing to you (I knew for sure sulfa antibiotics are a no-no, and yes it’s all sulfa drugs!)
Why would she want to switch you to a drug that might induce a flare when you’re getting under control??Please ask if you can talk about other alternatives! Methotrexate is also more of an RA drug (although sometimes helpful in lupus too…) It sounds like she’s treating you as if you’re an RA patient. RA is much more common, so it’s likely that’s most of what she sees. My three rheumies I’ve worked with (all great, just switched when different circumstances/locations called for it) are sub-specialists on lupus. They treat all the others too, but are particularly interested and specifically trained further on lupus (two we’re doing clinical research on it.) Maybe find a second opinion from another rheumy about your case overall… If you really like yours due to personality, ease of her admin workings, etc., and she’s open to outside feedback, it’s certainly easy to have the second doc’s input be integrated into what she’s doing to primarily manage your case. You could report yourself what the other doc said (take good notes) and give your current rheumy their contact info, or have them send a note to her directly. If you’re in a smaller town without more rheumies, all the more reason to head to a larger urban hospital, preferably a university or research hospitals’s medical group, since they’ll be most up to date on the latest info (but the sulfa connection is very old news by now… Which is what makes me wonder so much what your rheumy is thinking!!! Guessing again it’s that she’s treating you like it’s RA.)
Good luck, be careful, and remember you have ultimate say in what you take and what you want to find out! It’s GREAT that you get along so well with her, since that’ll make it all the easier to discuss your concerns
PS I happen to have looked into this before because my mom was on sulfasalazine while pregnant and I took preventive sulfa antibiotics age 1.5 thru 7, so I think it’s a major factor in why I developed lupus! Along with other factors… Such a complex “cruel mystery!”
My labs in June were down slightly so no changes. The middle of July I started with all over pain and weekly headaches lasting about 3 - 4 days. Labs drawn earlier this week and my sed rate is 50. That is the highest its ever been. Every muscle in my body aches. The worse is my hands, feet and shoulders. I called my Rhuemy today and was unavailable when she called back. She left a message stating she was leaving for the day. She wants me to start Sulfaslazine. She doesn't know about all the pain only the labs. I saw my dermatologist a couple weeks ago and he wants to put me on a short dose of prednisone. My face, arms, back and chest are covered in a rash. I told him I wanted to wait to talk to my Rheumy before I started. It is going to be a long weekend waiting to talk to her on Monday. Also the tramadol makes me feel awful so I only take it at night so I can sleep.
Brynn - I tried to click on the above link and it wouldn't work.
Started on a tapered prednisone dose today. I can’t wait for my skin to clear and the pain to go away! See my Rhuemy the end of September and we will come up with a game plan.