Severe flare and looking for support from this group
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Hello Everyone I have had lupus for about 21 years now. I have been in a flare since December 2018 with no luok with my rheumatologist. I live in Virginia so if anyone knows a good Rhemutologist please inbox me. My doctor put me on Imuran which made me worse Now I have fatigue ,chest tightness , shortness of breath ,muscle aches, so I had to stop it . Call my doctor only to be told I couldn't be seen for 3 weeks what am I supposed to do until then the ER does a want me to keep coming there for lupus. My CT scan showed some lung scarring from my lupus which gives me shortness of breath .I went to a lung doctor and he didn't know what to tell me but it must be your lupus!I really need to get some good doctors. This is the worst flare in 21 years I've had so I guess I need to consider myself lucky. Some days is hard for me to get out of bed I have no energy I'm just drained. I was so glad to find this network because I really don't have a lot of support I can relate to people thinking it's in your head, so U stop telling friends or family a lot. I guess now they would try me on plaquenil, if anybody has any reviews about it please let me know. I'm learning to take this one day at a time because I don't know anything else to do ! I look forward to chatting with everyone and any advice will be greatly appreciated!
Hi @Shimurph I am sorry you had a bad experience with your medication and have been flared-up for some long... I have a had pretty long flares and life becomes miserable. I wish medical professionals would better communicate with other medical professionals... like PT with MD and then specialist MD with general practicioner, etc. so our care could be improved!
I am not sure what part of VA you are in, but if you are up north, you would be only a few hours from John Hopkins in MD.
Thanks,just asked my pcm to send me there.
@Shimurph that is great news! When is your appt? Hopefully, you can keep us updated her with your journey as that is one the renown places int eh USA.
Not til June:(
good luck to you!
I was highly disappointed with the Lupus clinic there.Maybe it was the doctor he pushed for plaquenil even thought it almost killed me in the past. Then he tells me tour lupus isn't very bad your not in a wheel chair! What! I haven't been back sense
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