Tapering off of Prednisone

Hi@lisabrookside387. I'm sorry you're in such pain. I was diagnosed with Giant Cell Arteritis in May and put on 40 mg of prednisone initially, which alleviated all my symptoms, including horrible head pain and an incredibly stiff neck. My rheumy told me to taper down by 5 mg every two weeks and if symptoms returned with a taper to go back up to the previous dosage. Have you spoken to the doctor about the return of your symptoms? You may need to increase the prednisone to the point at which your symptoms are minor again. What was the last prednisone dosage that gave you pretty good relief? I hope you can find a solution to this.

Met with my Rhuemy last week, did blood work. The markers were normal and she stated my PMR was not active (?) no additional meds prescribed.. Got the Maderna booster last week, forgot to take the meds one night and the pain was back albeit not a full fledged flair up albeit significant. This morning all feels more managed. Currently taking 5mg at night and 10mg prednisone in the AM, 200mg hydroxycloriquine and 2 ea. Tylenol arthritis twice a day. Plan is to reduce prednisone 1mg every 4 weeks. Personally I’m not looking fwd to the taper given the current level of pain in the AM (I call it background level a 1 to 2 at most)…but I guess we must start somewhere sometime.

I'm just wondering if you (or anyone) checks with their rheumatologist every time you either drop down a dose of Prednisone or increase it. I've been on Prednisone for a year and a half and have seesawed from 10 mgs down to 2 mgs. I'm starting to feel the aches come back. Up to now I've always checked with my rheumatologist but wondering if some of you who have been on Prednisone for much longer figure out your own schedule.

@ncgal, For both of my two occurrences with PMR and tapering off of prednisone the rheumatologist left it up to me but did provide some suggestions the first time my PMR was active. I just listened to my body and how I felt and used a daily pain scale log with the prednisone dosage I was taking. When the pains and aches were more than I could deal with I stayed at the same dosage a few days to see if it would get better, if not I did a really small bump in the dose - 1mg or 1/2mg, to see if I felt better the next day and so forth. Having multiple size tablets prescribed really helped me taper down. I used 5mg, 2.5mg and 1mg tablets for the most part when my PMR was active.

Thanks, John. Since I went off the Plaquenil just over a week ago due to leg swelling the aches are starting to rev up again. Luckily the leg swelling has gone down a bit. I'l try increasing the Prednisone to 3 mgs from 2mgs and see if it helps.

my numbers were low even as I was diagnosed. My Rhuematologist diagnosed me on symptoms and said try the prednisone, if your pain goes away and you can move again, it is certainly PMR. regardless of the numbers. When I was first diagnosed, I could hardly walk and could not stand up without aid. After my second dose, the pain was gone and I was able to walk easily and stand. I was amazed. He said the numbers are a guide, not a rule. Before I was diagnosed, I was going to the gym 3 days a week and walked 3 miles a day. Within 3 months I was reduced to not even being able to get out of a chair by myself!

My doctor wants me to take 25mg of prednisone for 14 days and then just stop. I haven’t started it yet because I’m concerned of side effects from suddenly stopping it. He says there’s no need since it’s only for 2 weeks. Has anyone taken this same regimen without dosing down?

I think it might depend on why the doctor wants you to take the prednisone. If you are taking it for PMR pain and you start taking it, presumably it would cause the pain to go away, hence the need to taper off slowly depending on how much pain you have when you taper. Just my non medical training two cents.

I have been on this for 20 years, I cannot taper it. My body wont take it. I take 20 mg a day its a wonder drug for me for something the doctors cannot tell me why it works so well

20 years 10 went to 15 which went to 20. Tried 15 but can't do it