Oh Autumm, it's ok to vent. Give in to the tiredness, rest, relax and most of all have patience. It will get better. This is such a milestone, almost a cause for celebration and good feeling. 7 mg daily, (I can only imagine getting there). So gal, chin up and rally, it's gonna be ok. Would love to hear about your holiday, hope you had a wonderful time.... Love Sonia (Got to run, off to see the rheumy, otherwise I would have written more)

When you get that low, it does get really hard with each taper. The good news is you are now to the level that your body makes so you should see it stabilize soon. When I tapered, each taper took about a week for me to feel okay...sometimes two. As Sonia suggested, I just gave into what my body asked for. If it was lots of time on the couch, that is what it got. You will be up to snuff soon.

I have my fingers crossed it passes soon for you. Congrats on getting down to 7 mg!

As Lexis mentioned, it can take a week or two for your body to "catch up" once you get this low on prednisone. But you can do it! We are all rooting for you and cheering you on. Best wishes for a better tomorrow.

Hi Sonia and thank you. Turkey was wonderful. It's Spring in South West Turkey so it was very beautiful. Different world, different pace of life. I love it there but back to normality now. Autumm

Hi Nanny and Lexis. Thank you for the support. Was wondering when my adrenals might kick in again. This tapering is so slow. Going down to half of one mgs when I hit five mgs, I will still be tapering this time next year but that's the way the Rheumatologist wants it. It's tough but better than the full blown PM. Onwards !!!!!!!' Autumm

Good luck with the tapering Autumn. I know that feeling of legs feeling like bags of cement when walking across the room. Hot/cold flashes, headaches, heart racing, blurry eyes, etc.. I hope you will do well. The bad feelings will pass. Try to put your mind on other things like reading and this will help. Keep us posted.

Hi Autumm: Well 7 mg are really good! I just had this discussion with my Rheumy. She said that now that I am heading to below 10 mg of prednisone, to take the first 5 days and alternate 10, 9, 10, 9, 10,9,9,9 then in 2 weeks move to 8 and go 8,9,8,9, 8,8,8,, etc. I hear everyone tapers differently, but my Rheumy said if I was still tired after about a week to move it back up to the next level and try again in another week, and to call if it instigated a flare. So I am at 9 right now, and have not had the tired part kick in, but expect like Alexis said, it'll hit pretty soon....

Can you have your adrenals checked to see if they are kicking in?

Glad you are back from Turkey - what a great trip that must have been!! Heidi

Hi Autumm
I am on the tapering as well. Just started on 8mg this week and you are right it is hard. But I know that this time next week will be better then I will have two almost normal weeks until I go to seven and so on until I am an 0mg! Yes it is going to take 8 months but we will both get there with NO set backs! Keep up the good fight we are both going to be off prednisone at this time next year!
Sending reiki your way for your greatest need!
I am totally with you!
roxanna

Hi Autumn - I hear you. When I was tapering it first was the every other day deal, then 1mg a month. I flared at 2mg! So, take it slow so no setbacks! I know I need to do it by 1/2 mg when I go lower again. It took me 2weeks to get adjusted and was on the couch. Each day is different. You can do it! -:)

Hi everyone. Thank you all for your support. No one understands like we do. I am sure I will get through this one. Had labs on Thursday and they are fine. See the Rheumatologist on the 21st but if I am in trouble he has a helpline and someone from his team or he will call to advise. Good luck to all of you on taper. I am so pleased you are all doing well. We will make it. Onwards !!!!! Autumm

The taper can take forever. It took me a few years to get off. I would get so frustrated. We stopped at 5 mg for a few months. Then again at 3 mg. I was at 3 mg for 4 months before I was allowed to go lower. I had been on an every other day schedule for a few years. Probably since 40 mg. I did 40, 0, 40, 0, 40, 0, etc. I kept on the one day on, one day off for the rest of my taper. Sometimes I felt like I was on a roller coaster. But I eventually got off and hope to stay off.

Be patient with yourself. The trick is to go slow enough, your body doesn't notice.....or is it the disease we are trying to trick....like it has it's own entity? Sometimes it feels like it does. Haha

Glad your adrenals were okay. You will probably want to check them again periodically just to make sure they are doing their thing.

Thank you Lexis. I have a feeling the Rheumatologist will keep me at 5mgs maintenance because of the suppression of the JO1. It's something we have to talk about next time. His Rheumatology Nurse has told me that doctors do not worry about any side effects for patients on that dose. I think its going to be that or stay on the Azathioprine and I think long term 5 mgs Pred is safer. Oh! The joys of our choices with Myositis. Autumm