Reduced to 10 now pain is back worse than ever

Yike!  the only time I lost hair is when I was on Methotrexate...went to get a hair cut and she did not charge me as so much hair came out in her comb. Immediately find out Sed rate and C-Reactive Protein if those markers work for you.  Your reductions schedule concept needs to be altered.  Very very slowly, .5 at a time and stay on one day .5 reduction for 2 weeks.  My husband sets up a very complicated schedule for me---I think I may never be able to go below 3 mg. of Pred.  If you have pain you need more Prednisone--find the level you need for now pain and stay on it awhile. Eileen knows more than I do....I am not sure of hair loss and nap on Prednisone. Where is your pain?

So sorry Amy.

This was when I had my one and only flare. I went back up to 12.5 for a few days and then dropped to 11mgs. The drop was too much for me. I am almost 3 years down the line and at 2.5mgs. My hair thinned a lot but now it is thicker again and has been for some time.....even my grandchildren noticed. I had the Cushingoid effect on my face but it reduced some time ago and now I have the wrinkles again. I hope the pain eases.

You are reducing way too fast.  The recommended maximum reduction is 10% - at least that's what I've learned from this forum.  If you haven't read about it, check out the DSNS reduction schedule.........

https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439

Even with that a person can run into bumps in the reduction.  I just got down to 8 mg but am having some of the same issues as you including the incredible fatigue and am increasing my pred dose so I'm comfortable again.  Fatigue is frustrating isn't it?  That should go away as well once you get your pred dose up to a level that keeps you feeling good again.   The reduction isn't a race to zero and it won't be a smooth straight path.  You'll hopefully get there someday.  Good luck!

As others have said, your reduction steps look a bit ambitious. I can't work out 10% of 12.5 in my head but I'm pretty sure it's more than 10% which is as high or higher than most of us have managed. Try going back to 12.5 an d if that relieves the symptoms stay there for a bit. If not then you  may have to go a bit higher still. Don't tolerate the pain for too long; it only means more pred. in the long run.

One of the unwanted side effects I had was hair loss but it did gradually thicken up again when I got to the lower doses.

I have that incredible fatigue also.  Just dropping off to sleep sometimes while watching tv, also taking numerous naps through the day.  It is so odd feeling to be so dopey.  I thought it was my meds for other things, but not so sure about that now.

No - go back to your GP and ask to return to 12.5mg quickly - otherwise you may need to go back to the start. And ask to try dropping just 1mg at a time - for some people 2.5mg at a time is too big a step so you miss the dose you need AT THE MOMENT. It doesn't mean you won't get lower, just not yet.

How long had you been at the 15mg and 12.5mg doses before you dropped to 10mg? 

My hair loss at this stage was due to the PMR - I wasn't even on pred and the house was covered! It is a common response to poor health as well as to some drugs. Don't worry, it will grow back. Some óf us developed curls while taking pred!

Hi Amy, sorry to see you have joined our PMR journey. Please take your time getting off Prednisone, don't rush it not a race. Rushing will only rush you into a flare, I have done it and it set me back a year. Take your time use the DSNS method and stay under 10% . I never reduce it I have any PMR pain. I think positive and try to smile. The forum had provided me a lot of information. Good luck on your journey. ??

Have suffered this nightmare for years now. Got off Pred twice for nearly 6 months before all  symptoms returned and was back to square 1 again. Currently taking 15 mg alternating every other day with 10,mg. I find if I spread the dose throughout the day I dont get the dreaded head sweats or fall asleep at the table every afternoon...(sometimes mornings!) I noticed after the first pred free period, whern symtoms returned I had hip pain as well which had not had before. The leaden legs are the worst. but I know that I am genmerally improving despite some very serious falls last year due to untreated, although diagnosed, diabetis. Had a horrible pressure ulcer/corn on the tip of my second toe. No one took any notice of me when I complained. It grew right through to my bone! I could not walk and my hips had suffered mis-aliggnment because of it. Had treatment now and half my toe was cut away as well as a horrid ingrowing tonail at the side of my big toe which looked like a little biorde beak.

I did not feel this as pain as one of the falls had severed a large nerve in my leg. I was told the nerve would not heal however I took some Vitamin B12 shots daily for 3 weeks then weekly and now monthly. My nerve regenerated and is almost normal after a year. All docs and surgeons cannot believe it.

I have no faith in doctors or NHS any more. I treat myself and haver told my doc thats how I want it to be. He supports me as long as I keep him informed. Actually he has suggested the B12 treatment to another lady who had a similar injury. She is doing well but another without B12 treatment has had no nerve for over 3 years despite it being a lesser injury.

I am very keen on dietary and natural medicines and am feeling quite good on Milk Thistle and Turmeric for inflamation and on a multi variety of Japanese mushroom powders.

If I get a flare or if I am poorly with flue or the like I take 20 mg Pred and taper off by 1 mg aday for a week. I can get down to 10mg and still feel OK but 15 mg lasts longer for me without too much pain. Spreading the dose also has done away with the headaches and the feeling of being a Picasso painting with my eyes on other side of my head.

I am determined to beat this one day but know that it is only patience that will do it. I have had other auto immune conditions and they lasted anywhere between 4-8 years then suddenly vanished.

Hang in there kids. At least we can have a bit of a life with Prednisolone.

Sorry for not replying to anyone sooner had a really poorly baby last couple of days. I get pain in lower back, hips and if I'm running around after kids it starts to feel like it's shooting down my leg. I'm not trying to rush off the pred I was just doing as my doc told me I started on 15mg end of March when I got diagnosed then 4 weeks later it got put to 12.5 then 10 last Monday. I went to docs yesterday and he is sending me for a blood test today, he said the pain couldn't be from pmr??? It has to be something else because I'm still on a high does?? From what I've read on here most people start on a higher does than 15mg. I just want it to be over already 😢 I'm only 26 with 2 small children I don't have time to be not ok