Decreasing Prednisone,Major Problems

[Nanof3]

I’m a 79 year old women! Started withdrawals from prednisone after 20 something years on this drug! From15 mg to 10 mg for one week then decrease to 5 mg and stay at this dose for now! All recommended by a Rheumatologist. Within a week I broke out in a rash and then hives extremely painful. I was assured it was not from the fast decrease so go to an allergist or family physician. They both confirmed it was from the quick decrease. I’m sharing this experience because I’m still in withdrawal from this drug and it’s taking a real toll on my day to day existence. Please don’t decrease fast.

[PMRpro Ambassador]

Your rheumy needs a reality check. You can have allergies that develop alongside autoimmune conditions that are masked by the pred at higher doses and reappear at lower ones - quite a few of us have experienced it.

But above all. after 20 years on pred, your adrenal function is shut down and it will take months, possibly years, of slow reduction below 10mg for it to return, if indeed it ever does. You were lucky it was only hives - it could have been an adrenal crisi.

I do hope you can find a better educated rheumy for the future!

[Nanof3 in reply to PMRpro]

Thank you for your reply! You’re absolutely right, I’m very concerned about that issue! I did get an appointment with another rheumy , unfortunately have to wait a month. It’s very unfortunate that these things happen and that these so called Doctors are still practicing medicine.

[Bcol]

Can't add to pro's comments

[ab58sf]

Have you experienced any issues with bone density problems while on pred this long? Thanks for this information.

[PMRpro Ambassador in reply to ab58sf]

I've been on pred 14 years - last dexascan my bone density had hardly changed.

[Nanof3 in reply to PMRpro]

So far it’s been fine!

[ab58sf in reply to PMRpro]

Thank you so much. I have been on 5mgs and now down to 3mgs. Actually, I don't cover all the pain at 3mgs, but my GP and my GYN act like 5mgs are awful. They don't hurt like we do!! Thank you for your responses, as they give me hope. I will get a new bone density test. Blessings to all!

[HeronNS in reply to ab58sf]

Are you saying that your PMR symptoms have reappeared at the lower dose? Were things okay at 5 and how fast did the doctors make you reduce?

[ab58sf in reply to HeronNS]

Yes, symptoms are worse at 3mgs. Because of my fear of bone density loss, I have been tapering too rapidly apparently. my skin is also suffering from the pred. I need to chill apparently. 5 mgs are probably not that bad.

[HeronNS in reply to ab58sf]

Have a read of my "osteoporosis" story as it may give you some ideas about how to maintain or even improve your bone density without resorting to anything more than some appropriate exercise and nutrition, including a few ordinary supplements. As PMRpro says, unmanaged inflammation should be of as much concern to your medical people as the possibility of bone thinning. Allowing the inflammation to get out of control is not the answer. Keeping your bones strong is possible, but unfortunately the doctors don't learn this sort of thing in med school.

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador in reply to ab58sf]

They're talking tripe - if what you need it 5mg, that is what you need. It is about the same amount of corticosteroid the body makes naturally if you aren't on pred so it really isn't the end of the world - and infinitely preferable to not controlling the inflammation completely because THAT can result in a return to the state you were in originally and needing a much higher dose.

[ab58sf in reply to PMRpro]

Great advise. Thanks so much. I am super afraid of Prednisone long term. But, PMR is much worse.

[Nanof3 in reply to ab58sf]

So far it’s been fine!

[Karenjaninaz]

Nan I’ve been on pred since 2015 -age 81 now and can only reduce by 1/4ngm at 7.75mgm .

[Nanof3 in reply to Karenjaninaz]

So far it’s been fine!

[ab58sf]

Thank you for responding. I will stop stressing over that and just get it checked. I am battling sciatica now. One thing after another.