Painful wrist is this part of GCA, PMR Fibromialga.

Yep sore thumbs

Yep I get the shoulders knees oh yes can’t leave out the lower leg pain that tops if of I have managed to get a sense of humour out of all this you just do hey👍

This thumb and wrist thing is new butt yeah I’ll just add it to my list of aches and pain 😊

Hi Margaret yes thats the exact same from thumb to wrist I have been wearing splint it helps a lot thankyou.

Hey Maggie and alley...tried going down yesterday from 9.5 to 7.5. Wow...I can hardly move my wrist right now and my thumb is killing me as I hold this phone to type! Going back to 9.5 today. Hope that helps. Hugs 2 you both!

Wow that was quite a drop all at once under the 10mg mark.  Who suggested such a large amount? They say the ideal amount is .5mg at a time although some people can manage 1mg. 

Uhhh, actually, that was my own recommendation! I know, I know...big mistake! I'm just so darned anxious to get off this powerful (if not helpful) drug that I'm probably not making good decisions. My doc wants 2 see me next Mon before I lv. 4 vacation 2 reasses.

Lynda, the problem with reducing too quickly is that if you cause a flare you can end up taking a lot more Pred. Believe me I am talking from experience. Under 10% and now under 10 mg I reduced by 1/2 mg.

Think positive and smile. ☺️

You need to accept that pred will be your long term friend helping you get through life in a more normal way, rather than your enemy.  Reduce really slowly and you will feel much better.   There is no short cut with PMR.

How many times must we say Lynda - 2mg at a time is too much at this level. No reduction should be more than 10% of the current dose so 1mg is more than enough below 10mg and for many people 1/2mg is better. You are also dropping too soon - your poor body isn't getting a chance to settle down. I you drop, go back up, drop, do back up you will soon find you need more and more pred to manage the pain - which is hardly what you or anyone else wants. However - poorly managed or not managed PMR increases the risk of you developing GCA - and then your choice will be risk losing your sight or take much much higher doses of pred. Low doses od pred are not problematic - higher doses are. But none of the side effects are worse than losing your sight. Some of the other long term risks of unmanaged PMR are pretty unpleasant too.

On the other hand - if all you are interested in is getting off the pred then it probably makes little difference because if this IS PMR then once you stop taking pred all the pain will be back and the only thing that will stop it is pred.

You have to get your head around this fact - do you want to have far less pain or not? If getting off pred is more important to you than having less pain and a decent quality of life then we on the forum can't help you in learning to live with PMR and pred. 

Thank you Eileen. I'm Still licking my wounds and wiping my tears but I guess I needed a good "butt kicking"! Wow...I'm gonna take all this info to heart. You're right. Being on prednisone is far better than the possibilities of blindness etc. I'm gonna try 2 Suck things up and get "real" about all this. It's just so new and sooo overwhelming. I appreciate your advice and hope you'll ( and everyone else) will continue to communicate with a novice such as myself!

Thanks diana...I'm finally starting 2 figure this thing out. Sometimes I'm a slow learner, or maybe I'm just REALLY stubborn! I've not wanted to give in to all this and am realizing I've been fighting it tooth and nail! Im seeing my Rheumy next week before flying to Texas for a vacation to see my beautiful, youngest daughter and meet my second grandson for the 1st time!! This is a time for me to be joyful!

Has anyone out there increased dosage of prednisone by 1 or 2 mg on their own w/o consulting doc? I'm unable to get hold of mine at this moment as I was just told she's out on maternity leave😱😱...wow! I didn't Even know she was "preggers" as she's soooo small! Nice of them to give me some warning!😠 Anyway, they're trying to figure out who's gonna cover for her till 2019!!!😠😠😡. I'm wondering if this was an emergency situation cuz it sure wasn't handled properly! Back 2 my question... I'm currently on 9.5mg and seem 2 be having a real flare. I can hardly walk on my rgt knee and my fingers, wrists, and neck are almost "frozen" and painful. Any advise at this point would be Greatly appreciated! Thanks to you all.

I spent two years without seeing my doctor. She had only just qualified anyway and did not seem to have a clue about PMR, she did not seem to know much about steroids either. I saw her twice when she joined the practice over two months then gave up as it was a total waste of time. I just reduced as I felt best. I now have a new doctor who has not given me any advice either. 

Have a wonderful holiday meeting your new grandchild...a magical time!  I never see my Dr as I have repeat perscriptions and regular blood tests which I order myself at the surgery.  And my rheumy said I could treat myself and to contact him if I ran into trouble. I never have.     That was over 2 years ago.      If I have a lot to do and anything coming up that causes a lot of work or makes me extra tired like having loads of  guests,  I increase my dose slightly for a short while and when I drop I make sure it's o a week when I am not doing much.     If you have pain put the dose up until you feel better and then stay there until the inflammation is under control.  You need to feel strong if you are travelling!  Enjoy!

Holy Moly diana! You're more or less treating yourself?? That's such a foreign notion to me. However, it also makes alot of sense given the fact that sometimes I don't think doc's know as much about pmr as I'd like to think! I think I've learned more about this condition on this forum than info from my doc. Sad, but true! Earlier this evening I finally got a call from doctor who will be taking my doc's place. SHE wants me to go back up to my original 15mg until I can see her when I get back from my vacation. So, it appears I'm back 2 square one! Man, you're listening to one CONFUSED woman right now. Anyone else had any similar experiences?? It seems everyday holds something new. Also, is 15mg still considered a relatively small dosage? As always, Lynda...sleepless in San Jose!

Lynda, I increase and decrease my dosage on my own and tell my doctor after the fact. A year ago I followed her recommendation into a very bad flare, since then I try to listen to my body. If I believe I am having a flare, I increase to stabilize the inflammation, once stabilized decrease quickly. Hope that helps. Listen, think positive and smile. ☺️

She very possibly thinks - as do I - that a lot of your problems are due to you messing about with the dose at far too early a stage. Managing PMR requires a degree of discipline - you HAVE to get the inflammation under control. Only then can you start to reduce the dose. And the reductions must be of a size that your body can cope with. You have reduced a lot very quickly - you have let in flares and once that happens things are more difficult. 

And yes, 15mg is the bottom end of a moderate dose. It is what you need - at least. You won't stay there, you will reduce, but in a controlled manner and taking notice of your body and any return of symptoms.

Thank you Eileen! I agree that much of my troubles are due 2 messing w/dosages to soon and to quickly! I should say however, that it's all been via my doc and not lone made decisions. I'm learning (slowly but surely)! Back on 15mg as of today😭via NEW doc. who's taking over 4 my (unexpected) departure of my (unknown) pregnant doctor! Ughhh...what a joke!...only, I'm not laughing!#!

I think what Eileen was getting at was that you shouldn't (either on your own or with the advice of a doctor) reduce too much too quickly.  From the 15 you are on now you shouldn't reduce by more than 1 mg, because that is close to the "not more than 10%" which is the guideline.  And you stay on each new dose long enough to make sure it is still enough to control the disease symptoms. It can take several weeks, especially when your dose gets into single digits, for symptoms to build up again if the new dose is too low.  But it isn't slow if it works.  I used a slow reduction plan and went from 15 to 3 in one year.  But then it took me another year to get to 1.5. A year later and i'm on - 1.5! 

I thought you said you had decided to try the last reduction? Whatever - Anhaga is quite correct. Reducing too fast does not work. Period. End of.