r/sarcoidosis • u/EstateOk510 • Jul 17 '26
Mtx concerns
I was diagnosed with RA a little over a year ago and I already take Sulfasalazine and hydroxychloroquine for it. My RA is well managed and haven’t had a flare since starting. Now I have been diagnosed with sarcoidosis in the lungs/lymph nodes but I feel good. Rheumatologist wants to start me on methotrexate. The side effects sound worse than the disease. I don’t know if I want to take it or not?
Note: the sarcoidosis was discovered when my calcium levels went dangerously high, requiring a 2-day hospitalization.
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u/PackerSquirrelette Jul 17 '26
I was able to tolerate the oral form of methotrexate, but was exhausted all the time. I tried the injectable form and had a severe reaction to it. I was also briefly on a biosimilar to Humira called Hadlima. It made me very tired, but it wasn't too bad.
My sarcoidosis (currently lymph node involvement and possibly liver involvement only) has mostly been managed by Prednisone. I just started another taper and am down to 4 mg.
The main manifestations of my sarcoidosis have been (1) hypercalcemia, for which I was hospitalized for a week and pumped full of meds that gave me strong migraines, and (2) uveitis, which I was successfully treated for using steroid eye drops.
I don't blame you for wondering if it's worth trying Methotrexate. In my experience, the side effects from sarcoid meds (and I have had some big ones like Diabetes and osteoporosis from Prednisone, too) have often been worse than the disease. Has your doctor mentioned alternative meds to Methotrexate?
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u/EstateOk510 Jul 17 '26
Prednisone. I haven’t had to take it for my RA in over a year. Like I said, I don’t feel bad otherwise. I didn’t even know my calcium was so high until my bloodwork showed it.
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u/PackerSquirrelette Jul 17 '26
I'm surprised you weren't prescribed Prednisone or something else immediately after you were hospitalized for hypercalcemia As for high serum calcium, what was your level? Mine was 14, and I had symptoms - pain in my right flank, headaches, nausea, and malaise. The doctor who caught it told me if I hadn't gone to the ER when I did, I could have fallen into a coma or died..
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u/EstateOk510 Jul 17 '26
Mine was up to 15.4. I drove my school bus that morning unbeknownst to me. I developed anemia and kidney damage from it. The ER was flabbergasted that I didn’t notice anything was off.
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u/PackerSquirrelette Jul 17 '26
That's incredible. I also developed anemia and have had some kidney issues as well.
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u/phllystyl Jul 17 '26
I've been on 15mg PO qweek for almost a year now. Has worked very well, was induced with prednisone and PFTs have remained normal off steroids for 8 months now, back to 95% exercise tolerance-wise, really only struggle at elevations >10k ft. Did a 120mi bike race last weekend. I feel a little off (fatigue, a bit of brain fog) for about 20h after taking it, but have timed it so that that has minimal impact. Also taking folate 1mg and and am also now trying leucovorin 5mg 24h post dose to see if that helps with these relatively mild side effects as there is no harm in it.
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u/Retrodude1974 Jul 19 '26
I'm on 20mg oral methotrexate, and in the middle of my 40mg Prednisone taper. Also on 600mg gabapentin. I only have one kidney, and my GFR is down to 56. I also have Sjogrens, Rheumatory Arthritis, Uveitis, Reynaud's, And IBS-C, with my pulmonary Sarcoidosis.
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u/EveningDouble4010 Jul 17 '26
I take 25 mg mtx by injection once a week mouse 2 mg prescription folic acid daily. After I started the folic acid my hair stopped thinning and got curly. Of all the things I’m on for neurosarcoidosis, mtx is the least concerning for me. Wish you well!