sarcoidosis and weight gain

I started being diagnosed in late 2022. Since that time, I have gained about 25 pounds, and struggle to maintain or lose weight. However, this also coincides with taking a new medication. So, I'm not sure which is the cause. Having said that, I certainly am having no issues with weight loss.

As for exertion, my doctors have advocated for more exercise, not less. I cannot say that I feel worse after working out. I am curious what others' experiences may be.

I have gained 25 pounds in the past year, but I have attributed it to an unrelated medicine I now take. My lungs struggle (feels like asthma) in the first 3 minutes of exercise, but feel much better after that. I am assuming that exercise helps me breathe better, at least it seems that way.

Hi 👋🏻! I was diagnosed with pulmonary, lymphatic, and skin sarcoidosis in June 2014 after completing an experimental drug trial for hep c (contracted at birth from mom….very rare). I initially lost maybe 15-20 lbs because I was so sick. I had fever, night sweats, severe fatigue, SOB, a cough, and purplish-red bumps that popped up randomly in various places (not on my shins though which is what most textbooks say). It was diagnosed by bronchoscopy with multiple biopsies. After starting 60 mg prednisone daily, I gained over 40 lbs in 2-3 months. Then I really couldn’t walk or breath. I have found that high doses of steroids do NOTHING for my sarcoidosis. They just cause more problems. However, if I take 5-10 mg prednisone daily, it helps keep the inflammation at bay. I have fought with so many doctors about the steroids because they all freak out and say they can’t just prescribe a daily dose of steroids. Yes, they can and in some cases, like mine, they need to. I went to National Jewish Hospital in Denver, CO and saw a “sarcoidosis specialist”. Over a two year period, I tried EVERYTHING he suggested. I am either intolerant of or allergic to ALL of the meds used to treat the disease….all but steroids. I had a Steven Johnson Syndrome type reaction to Remicade and that was the last straw. I just recently tried imuran (after having taken it twice before in the past with no problems) and had a very strange reaction with lots of neurological symptoms (migraine with aura, severe nausea, dizziness, temp dropped to 96.8, BP was 154/104, face turned purplish-red). It was a hypersensitivity reaction. So now I’m even allergic to that. Sarcoidosis patients tend to have swelling problems because of the lung involvement (impaired gas exchange, etc), possible heart involvement or cardiac problems r/t the lung involvement, lymphatic congestion due to impaired function of the lymphatic system, etc, etc. So, we retain more fluid. This causes drastic weight gain sometimes. If you weigh yourself in the morning right after you get up and have urinated and say your weight is 215 lbs, then the next day you weigh yourself again and the scale says 220 or more, it’s fluid! It isn’t possible to gain that much weight in fat in 24 hours or even a few days just because you ate a burger or some pizza. Rapid weight gain or loss is almost always r/t fluid. The steroids also cause fluid retention. I have to take lasix (furosemide) daily to help with this and sometimes it doesn’t even help. Yes, sometimes I eat more than I should (often because if the steroids), and I am not able to get much exercise, but the majority of my weight gain is fluid related. As for the exercise factor, we need exercise to aid in circulation which then helps with the fluid retention. However, we can’t do hard core workouts. I used to love me some cardio back in the day, but after joining a gym several years ago and trying to do 30 min of extreme cardio followed by light to moderate weight lifting, my cardiac palpitations got a lot worse. I ended up getting a nuclear stress test which revealed a shadow over the anterior portion of my heart which meant that I that particular area of my heart was NOT receiving enough oxygenated blood. So then I got a heart cath which revealed an “anomalous coronary artery” of the LAD (Left Anterior Descending coronary artery) (aka the “widow maker” due to its high mortality rate when there is a blockage). They said that it was “basically nonfunctional”, there was a “trickle of blood flow”, it was “way too small for a stent”, I may eventually need a bypass graft (CABG), and it was most likely “a birth defect”. There were a few collateral vessels that had formed to help perfuse the area, but clearly it wasn’t enough to adequately perfuse the area during exertion and I was told to keep my HR below 140 bpm. I thought they were right about it being a birth defect until just recently I had heard an account from a man with sarcoidosis who had once had a cardiac stent placed and then ended up in the ER about a year or two later with chest pain and SOB. Come to find out that the sarcoidosis caused narrowing of his arteries and causing the stent to become an occlusion of the artery. He ended up needing a CABG to re-establish blood flow to his heart. So, there’s so much about this disease that no one even knows yet! I’ve come to the conclusion that if it’s a weird symptom or problem and you’ve been diagnosed with sarcoidosis, it’s always related to the sarcoidosis. Oh, and I had a bone scan done recently and my bone density is just fine so the low daily dose of steroids is not destroying my bones. I’m fine. So for exercise, all we can really do is walking, swimming, yoga, Pilates….low impact exercises. We CANNOT overdo any physical activity or it triggers a flare up of the disease, but we have to do some form of light exercise to improve circulation and prevent further problems. Our lives are an extremely complicated daily balancing act that is exhausting in itself. I am an RN but haven’t been able to work since 2017. I graduated from nursing school in 2004 and my career was extremely inconsistent due to a multitude of health problems that went misdiagnosed for many many years. We now suspect that I have pulmonary, lymphatic, skin, eye, cardiac, muscular, and neurological involvement r/t the sarcoidosis and the only treatment option I have is steroids. We need more research so we can get better treatment options. We also need doctors to be better educated on diseases like this and on how to LISTEN TO THEIR PATIENTS and stop thinking they know everything…because they don’t! I am still alive because I fight for my care. But I’m an RN and I know what is wrong, what is right, what makes sense and what does not. What about the patients who don’t know what I know?! It’s very scary. You have to educate yourselves and be your own advocate. If something doesn’t make sense to you, get a second or third or fourth opinion if necessary and research things yourself and present that research to the doctors so that they can’t just shut you down. Idk what has happened to our healthcare system in this country but it has gotten so bad. Most doctors are not very knowledgeable and yet they still have a god complex. It’s ridiculous. I hope this was helpful.

I was diagnosed with sarcoidosis less then a year ago. They first thought it was cancer because my PET showed lung spots.I was not having any major issues,I was in hospital with stomach pain, they did CT, MRI and then the PET, and said sarcoidosis was not active, breathing- no issues. But now it’s active, my new PET shows it has doubled in sizes, it’s in my lymph nodes, spleen, bones and more, But I feel ok. They are going to start me on Methotrexate. ? It seems to be a rare disease.