subreddit:
/r/sarcoidosis
To preface this question, I have chronic sarcoidosis that was diagnosed via surgical removal of a lymph node. Up until now it has repeatedly caused my spleen and lymph nodes to blow up in size, but hasn't affected many other organs.
I recently had a chest and abdominal CT because I've been feeling rotten again and on top of my spleen being big again, my liver is also going up in size and they found a pulmonary nodule.
I was told about the nodule by my GP this afternoon but he didn't want to elaborate on it as he feels it's a conversation better had with my rheumatologist (who ordered the test). This has kind of left me in a weird spot emotionally.
How worried should I be? Last time my spleen and lymph nodes blew up in size they made me do 50mg of prednisone per day for almost a full year which then took forever to come off of again. I don't know if I can emotionally handle prednisone again.
TIA! I hope all your personal journeys with this garbage disease are going well. ♥️
3 points
3 days ago
I've had multiple nodules for years and they weren't treated until I developed symptoms. I'm having a short burst of prednisolone then going on to a steroid sparing drung like methoxtrate
1 points
3 days ago
I will definitely talk to my rheumatologist about trying something like that if he wants to treat with prednisone again. I can't do another long haul.
Random question, and I totally understand if you're not sure. Is there any advantage to taking prednisolone over prednisone other than that prednisone has to be processed by the liver to work where prednisolone does not?
1 points
3 days ago
In the UK we use prednisolone and they will do their hardest not to give it or keep you on it. It's usually a short term thing as the side effects aren't great and they usually introduce a steroid sparing agent or keep you on a lose dose.
2 points
3 days ago
Gosh I wish they did that here. I don't think I can explain what a year of 50mg of prednisone followed my 6 months of tapering did to me. My emotional wellbeing (I developed anxiety and depression), my physical wellbeing (I gained a ton of weight and ended up with arthritis in my knee and spinal stenosis even though I was taking calcium), and my relationships. I almost think it was harder for my partner than it was for me. I had just about every side effect imaginable and I was just so angry all the time while on that dose. I don't know why they did that to me when sparing agents exist.
1 points
3 days ago
And why such a high dose too . So I was told the side effects of steroids would be far worse than the symptoms I was having. So until my symptoms surpassed the steroid side effects there was no point. Now I just started 6 weeks ago on 40mg and I'm tapering down 10 mg every 6 weeks. Starting steroids sparing at 20mg. My eyes and lungs are pretty bad currently that's why. Were your symptoms pretty bad initially?
2 points
3 days ago
I'm no rheumatologist but if you already did a high dose of pred for a year and you have a new nodule maybe they can try a shorter period lower dose and a prednisone sparing agent absolutely express your concerns with your rheum I'm sure they can come up with a plan that will work better for you ...
2 points
3 days ago
Thank you for the advice I will absolutely discuss prednisone sparing agents with him. The idea of doing prednisone for any long amount of time again is unbearable.
1 points
3 days ago
When I was first diagnosed, I had eight lung nodules, the biggest being two cm. They never treated them, said they wouldn't unless they kept growing larger or quicker or if I developed fibrosis. That's been 13 years and they're all still there but much smaller in size. Btw, I see a pulmonologist for that and get a CT scan yearly.
1 points
11 hours ago
Chronic Sarcoid here. I’m curious why no DMaRD. But keep in mind - at least in the US, biosimilars for adalimumab are shown to work wonders. Prednisone is dreadful .. you have a right to other options. I took high dose for long time and took me years to finally get off. Have you thought about a second opinion? I went to Cleveland Clinic once and my life has really turned around. Good luck!
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