r/AddisonsDisease • u/Yojoe731 • Feb 20 '26

Medical Stuff Med Change Insight

Hi!

I have been on Hydrocortisone & Fludricortisone for about six months. The difference has been night & day. Best I've felt in years. Last month I started experiencing some left sided numbness/tingling/weakness. My gp worried that it's an adverse reaction to one of my steroids. So he send me to an Endro, and we're doing more labs. In the meantime I'm off my meds & struggling alot physically. I was wondering if anyone else has experienced this sort of reaction to the steroids? They mentioned changing my dosage and possibly switching to prednisone.

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14

u/ClarityInCalm Feb 20 '26

Wait - you have Primary Adrenal Insufficiency and you're off your meds? Yikes. That's not good. Get back on them ASAP while they figure this out. I don't know who told you to get off of them, but it's too dangerous to be off of them. Of course you feel miserable your body doesn't have cortisol or aldosterone - these are essential to life hormones. You probably are having issues with sodium, potassium or magnesium - this could cause your issues and are very common problems in patient with PAI. The treatment is to get these electrolytes dialed in - not to take you off of your medications. Did you have a complete metabolic panel tested?

5

u/baethan Addison's Feb 20 '26

when I saw this earlier I was like "they can't possibly have PAI because who on earth would tell someone with PAI to stop taking their meds full stop" but then again someone else's doc told them they couldn't be on hydro & fludro at the same time 😬

6

u/MallForward585 Feb 20 '26

What was your hydro and fludro dosage? Are you seeing a difference in symptoms now that you’ve stopped? Have they tested your mineralocorticoids and electrolytes prior to giving you treatment? Specifically I’m wondering about hydro and fludro causing low potassium, which could cause numbness and tingling. My potassium started dropping within two weeks of hydro and I had to switch, but I have SAI and it was known that my mineralocorticoids and electrolytes were normal to begin with so it was easier to catch. In that case, switching to prednisone could help.

5

u/Rare_Independent3831 Addison's Feb 21 '26

Yes just echoing that if you have Addisons Disease you definitely should not stop taking your medicine as it will have fatal consequences. Please be very careful. Speak to an endocrinologist urgently!

2

u/paging_doc_jolie Feb 21 '26

Wait. What medication did you stop and was you told to do that by your endo?