I know the pain you are talking about very well. If NSAIDs and hot baths work for you, I would suggest keep doing that. I've been on prednisone since diagnosed in 2007. Every time I taper down, I can only get to about 6 mg per day, any lower and I am in too much pain. Now my bone density is going down (10% in 2 years). You will have to take into account the pros and cons of each to make an informed decision.

Exactly. I love the relief I get from prednisone but coming off of a taper is awful. Thanks!

Oh boy can I relate! I do not take steroids on a day to day basis, I don't even have a prescription because I don't want to go on them either. However, when my joint pain gets extreme and I've tried hot baths, heating pads, my pain medicine becomes like I've taken candy I go to my doctor or urgent care and get a steroid shot. My Rheumy suggested I get a double dose of that a non-lupus patient would get. For most flares this gets it under control fast. That said, We can only have a certain number of steroid shots each year (depends on the type you get, etc) so we have to be careful and make sure all our doctors communicate.

Let me add I only get shots when if I've been in major pain for a week or more and gotten no relief, generally for me that means I'm flaring or heading for a flare.

Hope you can find some relief soon. Hugs!

I have to agree with what's been said here. It's tough. It sucks. Pain is just part of our lives.

Only YOU know how much pain you can stand.

My first "go-to" for pain is NSAIDS and hot baths. I can only take so many nsaids because of stomach/liver issues, so there again - only YOU know what's best for you.

My next level of defense is mild pain killers (usually 'codone of some type) because I've had so many steroid shots this year that it would make Arnold Swartzenagger blush.

I'm on constant low dose steroids...and it helps a little, but not much. Especially this time of year.

Hang in there, and hold out as long as you can, but not too long. If you have organ involvement (as I do) it can turn ugly quickly. If it's just joint pain you have - avoid steroids as long as possible.

It's a REALLY tough balancing act.

Thanks everyone for the input. Held off on the steroids for this round. I'm starting methotrexate tonight actually. Hope it will help reduce the joint pain overall.

Holy moly... I started reading your post and totally understood about the pain... and then I read you work 16hr shifts sometimes?! Oh Girl I give it up to you!! I haven't worked since 2007 (I was 24 and a manager of a restaurant - so I remember those awesome 16hr days), but there is NO NO NO WAY I could do it now. I have been blessed to get on SSDI... I can't believe people have to work with this awful disease! I just wish my knees/hips/back/any joint/muscles would EASE up on the pain. =)
Since you asked about the steroids I thought I would give ya 2 cents ... I would stay away for as long as possible. I ended up having a hip replacement at 27. I was only on steroids for 2 years (it was high dose... cause I was like, dying and stuff - can't complain too much - I'm still alive) but if at all possible I would steer clear! Although, I doubt the 5 -10 mg doses will do that but you never know....
If you can take NSAIDs you should but, be vewy careful for your kidneys! Lupus already messes ya up and kickin those ibuprofen back can do some damage. I can't take them since I had kidney involvement. So I'm lucky and get hydrocodone... and...ya... it sucks too. But as of this moment it's not damaging my bones or kidneys... probably my liver and (ahem... libido.. sorry... just tellin it how it is) but for now... that's my scape goat.
Oh and have you thought about Benlysta? I started that when they released it... not sure if it's actually helping but I sure do seem to be in a LOT of pain the week before my infusion (that would be this week). Ok I'm done. Good luck and GOD BLESS ya!

A hip replacement.. WOW.. It is so awful what steroids can do to you. And most of the people I talk to can not believe I'd rather take the methotrexate than steroid therapy. Yikes.

And the 16 hour shift thing.. I don't know how long I'll last at this rate. It sucks because I just started working in August of this year at my dream job straight out of grad school... I'm a surgical physician assistant at a children's hospital. I'm hoping the methotrexate kicks in soon!!

I keep telling myself - it could be worse, it could be worse. But I don't know.... I have heard SLE being described as one of the most devastating and mysterious diseases to have in an article somewhere. At first I thought, devastating? But it's not cancer? Now I believe it!!!!

Thanks for your responses :)

In a blad flare myself ..yuck is rite ...major pain ...now spine is involved...hope you feel better quickly ..stay strong .
Tami