So for the past couple of years right before I start to get sick I experience low grade fevers and ankle and leg swelling. After a couple of days of this my fevers run into the 101-103 range and I'm admitted. I have about a two week break between admissions at this point. My doctors aren't sure what it is because my lab values look normal for any type of infection, but my lab tests for inflammation always come back positive. I've seen a Rheumatologist who ruled out rheumatoid arthritis and has sent me onto an Immunologist who has ruled out any sort of deficiency and has sent me to get a second opinion from another Rheumatologist. The only thing they have treated me with is prednisone and tried backing down on my Orkambi to just one tab twice a day. While the steroids have helped manage the pain and some of the swelling so I am able to move, the change in Orkambi hasn't made a difference. Does anyone else experience this or have any insight to what this might be?
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Low grade fevers and swelling
- Thread starter kenna2
- Start date
Are you still taking Lovenox? It can cause leg swelling. I saw you have a history of a pulmonary embolism? I wonder if a cardiac and lower extremity ultrasound is warranted? It's hard to know if the leg swelling and fevers are connected or two separate issues. The fevers are common with cf...could there be a new bug? MAC?
I have cultured MAC. About a year and a half ago I was having similar issues, low grade fevers up to 101 or so, and swelling of joints, etc...very painful. It was an arthritic response throughout my body. It could very well have been Mycobacterium Avium complex immune reconstitution inflammatory syndrome. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2213635/
The inflammatory response would happen for a couple of weeks at a time then disappear after hospitalization. MAC meds no longer worked. I became allergic to Rifampin we believe. When I was desperate I started using essential oils. Rub some on the bottom of my feet at night and over the last year plus, I have not had such a response.
I have heard of other cfers that have had such an inflammatory response without culturing MAC. something to think about.
Hope you can get some relief!
The inflammatory response would happen for a couple of weeks at a time then disappear after hospitalization. MAC meds no longer worked. I became allergic to Rifampin we believe. When I was desperate I started using essential oils. Rub some on the bottom of my feet at night and over the last year plus, I have not had such a response.
I have heard of other cfers that have had such an inflammatory response without culturing MAC. something to think about.
Hope you can get some relief!
jesuscantu
New member
For me 600mg ibuprofen and some sports cream on the legs will make me feel better and ease pain.
I have been using Cassia, cinnamon and oregano. I rotate between them, using two of the oils every night. Just a drop or two on the bottom of my feet. I believe this has really helped. My cf doctor encourages me to keep doing the oils, even with just starting Kalydeco two weeks ago. Hope this can help if u decide to pursue it. I know it's helped other cfers.
Angela070604
New member
My sister, non cf, had similar issues. She was diagnosed with fibromyalgia and then lupus. Not to be alarming but it took them many years to dx her. Don't go just by blood tests Bc they sometimes come back with negative results. Good luck. Joan