sorry to hear
What dose of prednisone were you on when you went to 15.
Your drop may be going too fast for your body to effectively kick in.
Yea we all wish taking the thymus out would put us in remission.
Ann

I started out at 22 mg. I have been going slow. I was on 16 mg for about 2 months and just went to 15 MG last week.

Thank you!

I have to take the prednisone drops very slowly. I started at 20, and I am now I'm at 10. I am going to drop an extra day every 3-4 weeks. I seem to be sensitive to even a 1/2 MG drop. The 1/4 mg drop seemed easier . I want to sleep sleep sleep too after a drop. We understand. Maybe you are dropping too quickly? Good luck.

so sorry to hear but so totaly understand. I facebooked my friends and asked if anyone had a cane I could have Because I'm so weak. I was told on nov. 19, 2013 that I test positive achr binding @ 5,25 level I'm still in the angery stage. I went from having a great life to not being able to move. and the pain is enough to rip my legs off my body. because I push myself. which means barely doing nothing. not only do I have that I also have a mixed connective tissue disease. servere restrictived lung disease. the neuro at mayo looked at my results and said I should be dead with those results. but I look find, mayo sent me home saying I was depressed because my mother died. Not.
I have been going to the dr. for the last 18 months to try and find out what was wrong with me. I had given up the figh!!t the dr. thought I was crazy. and had no problem telling me so. the olny dr. that stuck by me was my pcp because we go to church together. I only had two months of Ins. left and I was done. then by god grace a women came up to me because she heard I haven't been well. and my flipped mouth say "oh no they think I'm crazy" she got me in to see her pulmonary dr. who got me in to see the neuro dr. both dr's I got to see with in 5 days of each other. that GOD it takes 2 to 3 months to see one dr. anyway she exam me and she does this blood work. I'm clueless to what this is I just know I don't feel good I have learned so much by reading old post and crying because I think we can all see outself in them and it SUCKS!! big time. but God is in control. and I thank god for this site. I can't wait until I get to go to the live support group. I don't spell well so please forgive me. sorry for all this but it really feel good to tell people who understand what I'm going through. good night all and thank you so much for all your love and support.

Maybe? Consult with your doctor? About raising your Prednisone level, a little? It might not take much. I was at 60mg daily, for a long time. Now: down to 13mg. The hardest intervals: were from 30mg, on down. I can only drop 2mg, every 3-weeks - and that's pushing it (without getting symptoms, similar to those you describe). I don't know - if I will ever dare drop below 10mg.

Keep us posted - as you go along.
Hope you feel better soon!

Sorry for the tough time you are going thru. Are you on a steroid sparing drug, such as cellcept or Imuran?

Judith

yea I cant for the life of me get below 6 1/2 and 7. I tried and tried and tried. Every time end up really sick and last time I ended up weak and weaker about a month after I went down to 6 only 2 days a week.
My body just says NO to less than 6 1/2 and 7 the next day.

I think I am going slow. I talked with my doctor today and told her how I was feeling and she said to stay at 15 MG and stay there for awhile. I was even thinking about going up alittle but I just don't know what to do.
I went to work today. I had to work 9 hours. I feel very weak. All I thought about was laying down in the bed and sleeping. I feel like I can't get enough sleep

Just thinking
I would do 15 one day and 16 the next and so on. 15/16/15/16.if I was you and give that a week and see if you get any relief.
That is slower than just going to 15 /15/15/
The slower is always better.
I found alternating days to work great.
When I went up just a half last week I was shocked at the strength I got.

I had put in a vacation today because I didn't know how I was going to feel. I lying in bed now feeling weak and tired. I went up on my prednisone from 15 to 16 MG. I hope if helps me. I got up earlier to eat with my husband for he went to work. Than I had to come and lay down in the bed. My husband was telling me when I sleep I have been jumping every few mins. He said that the other night that it took him over one hour to get to sleep because I was jumping. Is there anybody else that ithis is happening to.

If you are feeling up to it the MA/NH MGFA chapter meeting in your area is on Sunday. I know at the one in Boston we have a doctor who is there...in Springfield it might be the same and you might be able to get some suggestions from him/her

I wanted to go to the meeting in Springfield but I can't make it. Do you know when the next meeting is?

This sleep stuff sure is an issue.
It is crazy
I take sleeping pills when I travel because I can't sleep when I travel.
I took them the other night and felt sososo strong the next day.

I want to sleep all the time. I feel like I don't get enough sleep.

Keep us posted as to how it goes.
Ann