Hi Cadolph, so sorry you are flaring, I am too. 5-10 mg of prednisone is not a high dose. I personally would be happy to just be on 10 mg of prenisone forever rather than some of the stuff I have tried. I am currently flaring as well. Started in November with a rash, which part of it turned out to be shingles on my face, also a rash on my chest. The shingles cleared up and I went on Enbrel (a weekly injection) and as the weeks pass the chest rash has now spread all over my chest, shoulders, back and buttocks! It is blotchy and red, doesn't it but is ugly as hell. Seen the rheumy today - again - and we agreed to stop the Enbrel for a couple of months and restart the prednisone. Yeah, I know it is bad, but damn it is the only thing that makes me feel well. Have been having low body temperature then a low grade fever, feeling horrible. Came home from the doc and logged a 3 hour nap - yikes! Hope the prednisone will setlle things down.

As for working full time - I always worked full time, when I got sick I did part time for quite a while, got sick again and after that it was just part time. I found it very hard to have any sort of a life at home when working full time. I would be so exhausted by the days end at work that even making supper became a real pain yet alone doing any housework at all. On 1/2 time I would work mornings, come home, have a rest for an hour or so and then be able to carry on with daily chores - like making dinner and actually being alive to visit with my family. You should stay on part time if you can it will be much better for your family life - was for me anyway.

Take care and hope our flares fizzle fast!
Leanne

Somewhere just under 10 mg of Prednisone is the amount of cortesol your body makes naturally so it isn't a high dose but I know I would want to try to get lower. How fast was your taper? Maybe it was too fast. It took me 2 years to go from 10 mg every other day to off all together which is where I am now but not doing so good at that.

I have flared once while tapering but I was higher than 10 mg. I think I was around 15 down to 12 when I had to go back up. My doctor made me go back to 60 mg which made me very upset. Maybe go back to the 10 mg for a bit and see if you can taper a little lower if you feel okay.

I've continued to work full time through all my PM experiences. 2 years ago, I arranged to work from home which has helped significantly but I still work around 50 hours a week and travel 1-2 times a quarter....sometimes more. I do struggle to do anything at home after a 10 hour day. I am lucky to get dinner and pass out watching TV. Saturday is my day to get everything done. I do my Methotrexate shot Saturday night, spend Sunday on the couch feeling yucky, and then back at it Monday. Honestly if I could afford to not work, I would try it. I'm trying to get my financial ducks in order so it might be a possibility some day. I do think we might feel better if we aren't stressed and tired all the time (that is me...working).

Hang in there.

I am off on disability now and have come to the conclussion that I am not the same person that I was 5 years ago. I cannot do everything anymore and if I have a good day I would rather it be at home doing something like baking buns or cleaning something that I haven't been able to do for a while that having it be at work. I wanted to keep working part time and the gp encouraged that, but in the end he even said he was wrong and I should have been home long ago. I have accepted my "new life" and accept help from my family when it is offered. Don't push yourself cheryl, if part time is working for you and finances allow it, please stay part time and make sure you get time for you. If you are rested and well your family will be much happier than a cranky worn our tired mom!

Thanks Guys! It's nice to know that others have the same set backs. Sorry to hear your flaring Leanne. Thanks Lexisgirl for sharing your story..

I did have a very slow taper. I guess I'm lucky my doctor has only put me back on 20mg of prednisone for one month and then we will see how my body responds. Hopefully, I won't get the side effects to the same degree ad the last time. Last night, I was only able to sleep 4 1/2 hours.

It was weird, my Doctor called me an hour before I was going to accept a full time assignment for 10 months. As a result, I had a change of heart in accepting it and it didn't work out anyway, but am thankful that I did not accept it. I am working very little part-time at the moment and do need to find something with a little more hours. I need to find a job share in Human Resources.

I really appreciate both of your advice on the whole working full time or part time?

Hi Cadolph, I would be wondering why the doctor thinks you will always need a maintenance dose of 10mg and a part-time job. Your doctor is nice to give you a heads up. Most doctors never tell patients what to do about working and they leave these decisions to the patient.
I would ask the doctor if your disease is moving forward and if you have any new autoantibodies showing up on your test. Telling a patient to stay working part time is a nice hint, but it is a major life decision that effects your income.

I would love to work, but I feel bad a lot. I fortunately live with my mother and I have saved some money. I had to move up to 8mg on prednisone after a recent flare. I started on cellcept generic but I had to stop after eight days due to my head feeling bad. My head also felt bad on MTX and I stopped that drug too. I found out that I have a high centromere B autoantibody for crest scleroderma, and a high ANA titer. I am thinking that the reason my head feels bad may be due to a liver problem. I will have my doctor check for this on Thursday. I know that my disease is moving forward. I worked full time until last July when I was diagnosed with pulmonary hypertension. A few months later, I was diagnosed with RTL epilepsy. I made a right decision to stop working, but I was also financially prepared to stop. I was also able to have mom for my caretaker. I did a lot of careful planning and ran through a lot of bible scriptures. I was also prayerful before making my decisions. I considered all the possible ramifications before I stopped working.

This disease sure does require a lot of planning ahead for the unexpected. I wish you well. Do not make any quick rash decisions but think carefully about your future. Try to plan well. Good Luck.

Thanks Trpt1

I was wondering why she immediately said 10mg.also. I was on 5mg previously when I flared and I gather she is guessing. I felt like negotiating with her - how about 8mg. She tends to be on the cautious side. My next aptmt with her is May 30th and so I will have these questions for her then.

I happened to have an offer on the table when the Doctor called and I asked her what her thoughts were? She then said that she would continue working part-time.

You raised some good questions. It's hard when your looking for work and not really sure how I will be able to function. I do like working as long as there is balance. I find it good for my well being, if it's not too stressful.

Balance...that is an excellent term. It is hard to find, was for me, I was so reluctant to go off work completely. Financially we can manage, but I miss the people and a purpose to get up in the morning. In the end, I much more enjoy being at home, I have found balance. When I am tired I can rest, when I feel well I can putz around the house. I still feel guilty to go out during the day - every time I do I run into someone I know and they say "well you sure look good". How does one reply to that "sorry sick on the inside". It is a tricky decision.