Discontinue meds
I have had Lupus for about 12 years. My doctor took me off of Imuran because of cirrhosis secondary to NASH. I take Plaquenil. I’ve been to a gastroenterologist, test showed stage 1 varices which will be monitored. Pulmonologist I have lung nodules due to Sarcoidosis in the past. We will monitor. I also seen Hematologist due to low platelets. We are monitoring this as well. I would love answers after all of this mess. My whole body aches. Sore arms, elbows, thumbs, knees, etc.
I am sorry,
. That's a lot to deal with. And, I wish I could give you answers as to what is going on within your body, but I can't. I think it's very wise that you are being so proactive and seeing multiple doctors to address your health issues. I know it's probably frustrating and tiring, but it's important. I hope all the 'monitoring' starts revealing answers and possible solutions for you. Has the hematologist recommended anything to address your low platlet count?
Please know you are not alone in this. And please don't quit fighting for answers.
Best, Erin, Lupus.net Team Member.I had a pulmonary function test, I either have inflammation or something about fibrosis. They want to do another pulmonary function test. Something the exchange in my lungs. I see the doctor in July. , thanks for the update. I hope that appointment this month offers you some clear answers and a path forward in regards to treatment. How are you feeling overall?
Best, Erin, Team Member.
,
It sounds like you are dealing with quite a bit.
As Erin mentioned, unfortunately, we can't offer medical advice. However, we do hope others in this community will chime in to share their personal experiences.
In addition, I thought I'd share a few articles that may provide some helpful information: https://lupus.net/living/pulmonologist and https://lupus.net/hematologic-treatment
Sending you all my best as you continue to search for answers and relief.
~Doreen (Team Member)
whew so much to deal with. I know it’s pretty scary having all of that come down on you so I’m sending gentle hugs and some healing energies. Talking it all through with your doctors and getting them to communicate with each other can definitely help to see and plan a course of action that can help quell it all down. It’s so hard to pinpoint it all alone and try to figure it out by yourself. The answers may take some time but will reveal themselves with good communication and by you journaling your symptoms to share with the doctors. I’m holding space for you to get some relief, ~Racquel~ lupus.net team member at times it’s overwhelming
KitKat. I sympathize with your symptoms. I had very low platelets and had to have my spleen removed. Fixed the platelet problem. I have pleurisy and pneumonia from lupus. My lungs are bad with bronchiectasis due to frequent pneumonia. Lupus is a watch and wait disease. Waiting to see what it will do next
, I hope your medical team is able to get your bronchiectasis under control, or at the very least, stabilized, so no further damage is done to your lungs. And you're right, Lupus can feel like a real watch-and-wait kind of condition.
Gentle Hugs, Erin, Team Member.It’s a disease with many things that can be affected.
