Stepping down the prednisone quickly can cause everything to flare up.....did your doc tell you to drop by that much? Usually you only drop by 5mg at a time.

Beth

Yes maam, That was his instructions to the T. And Im hurting worse than ever

How long have you been on the Chantix? It has numerous side effects.
Also, the prednisone will keep a lot of people from sleeping, esp at that dose.
Mary Ann

rhumy's nurse just called after I set up an appointment with my gp. Wants me to return to the 80mg dose. I hope that's whats wrong. Yet I hope This isnt the begging of alot of mistakes like this. TY all so much I was very worried

Sorry I overreacted. I didn't think I could talk to the rhumy till thursday and was considering going to the hospital. great bunch of people for helping ty again.

Some folks just don't tolerate the titration down on the prednisone in bigger doses. Usually, with the bigger doses...you can do 10 to 20 mg safely...you may have to try 10 at a time, and if that doesn't work, then 5....I did 10 I think, until I got to 10 mg...then went to 5 then 1 at a time then completely off. Took 3 years....

Hope you feel better soon

Yeah, when I decrease my steroids, I went down by 2 mg one day a week. Then, after 2 weeks I went down 2 mg on one additional day, ect. Dropping 20 must have been hard. The Dr said I didnt need to do it so slow but I was able to do it without rebounding on the pain.
Mary Ann

Already feeling better, ankles and knees seem to be the last twinges of it. I'm really glad i joined this group. @ Beth, you gave me the info to give to my gp's PA, since he wasn't in. It was enough for her to contact the right people to make the decision what to do. tyvm

Getting dose down and eventually off prednisone is going to be a long haul, it will probably take months to get your meds all evened out so be patientand expect bad days .I sure found it hard but Im great now.

@ Imrmom, good timing. It's just like yesterday again. I want to be mad with the doctor. Did he cause this? is the dose change the only reason i'm feeling so bad now. And he scheduled me for a lung function and 6 minute something test for Thursday to determine if I can go back to work in the chemical plant. Sorry i'm just ... i don't even know what this morning. i guess i'm just scared. The plant wont tolerate a bad day. Im the father of 4 and my wife hasn't had to work outside the home since we've meet. i'm going to hush. No use complaining about things I can't change.

Complain away .Doesnt that much prednisone keep you awake ?I was also quite hyper babbled alot talk talk talk ,burst out crying quite frankly I was a bit nutty. Reread your first line ,I actually couldnt get to sleep like till 6 in the morning. Take prednisone very early in the morning if you can. Once you get on Plaquinel (hopefully thats all you will have to take) it still takes months to get working. Your work has no coverage for sickness? It would be nice if you could get a few months off. Once you get the right meds youwil be able to get back to work .Disability doesnt pay much. You should try to rest as much as possible after work and weekends I hope your family lets you and underdtznds. Are the kids little? If they are teenagers youre screwed lol ,constant stress! For pain i take 2 Advil and 2 tylenol ,my doc says they are 2 different drugs so you can do it. Youll make it through to feeling better but it takes quite some time.

Oh yes, I'm not sleeping much at all, In fact I had problems before I started so now i'm only getting a few at a time. I'm splitting the pred 40 mg in am and then the second 40 at about 1pm. I do have short term disability that I pay for personally but as far as my job is concerned there not very tolerant. For the whole site we have 3 guys that do the same job as me. When I am working i'm on 24 hour call. It isn't unusual to work 20 to 30 hours overtime a week. Ive been taking about 4 advil gels every 4 hours or as needed since my hip replacement 5 years ago. I'm an instrument tech, I am aslo on the rope rescue team, hazmat team, First responder and my normal duties maintaining controls. If its broken I work on it. For the last 4 years every shutdown (for maintenance) I've had fluid on the lungs. and miss time. this years been the worst, missed 4 months for low pulse/ox, what they thought was pneumonia, worked 2 months after that and was carried to the hospital with a pulse oxygen between 50 to 70 and passing out. luckily they found MCTD so its a different sickness and my short term started over. So i do have 25 weeks again. But after the 4 months they started taking applicants. Louisiana is a right to hire state. (which means a right to fire state without a reason) after my 12 weeks FMLA ran out my job isn't protected. Im scared. Not of death, of being able to support my family. If i do lose my job I wont be able to afford cobra, and will have a preexisting condition. I dont see any light at the end of this tunnel. I so appreciate the chance to talk to people who can relate. I can't bring myself to be totally honest with my wife. I've fallen about 6 times this year, balance issues. even standing on a scale I teeter to much sometimes to get a reading. I normally have 2 to 3 blood clots (phlebitis) at a time. Advil helps with that also. Im getting word today on the blood work for my hip replacement. Its the dupree recalled one. I do babel these days, or at least here I do. I want so bad just to my wife and 4 kids (20,18,16 and 12) will be ok. I promise I've tried my hardest to stay a good husband and father, but I can't keep it up much longer. for example last year I worked 1500 hours overtime. 24 hour call stinks when you cant sleep without help and you cant take meds to help because you may have to work. OMG im so rambling. in summation somethings going to work out. I just don't know how or when. Today started like the last few, pain and all. My septic tank caved in and have a guy coming to pump it out. I have to reinforce it with concrete myself since I dont have the 2500 bucks to replace it. Life keeps moving and I think one day I will get some rest.... Im on my pitty pot it seems. but the pity pot doesnt lead to the busted septic tank so im using it.lol. ty for reading my book, im sorry that its so long. 40 mg lexapro makes me appologize alot. I will try and keep it shorter from now on. but ty all for giving me a place I can vent it, whine about it, not have to be six foot tall and bullet proof. I know im not, and pretty sure my family knows. But I dont want them to know I have doubts and fears. Im the last man in both sides of the family. Im the one my mom, sister and wifes sisters call when its broken or wrong. rambling. lol ty for a good cry this morning, it made me feel better getting some of this out.

Funny, someone else wrote about not being up to the job of being the woman she thought she should be. And now a man with the same issues. Sometimes we dont think the opposite sex has the same problems- but I guess those of us with the same disease really do.
Is it possible for you to look for a job that is not so stressful and such long hours? Looks like this is killing you, But it is hard to find work right now.. You might look though. Never know!
It is hard to talk to your spouse, I know, but sometimes you have to. You have been married awhile, maybe you could get a little support there. Saying that, I will tell you that it upsets my spouse to hear my struggles and so I keep it to myself most of the time.
Anyway, remember we are here for each other and you can always spill your guts here!
Mary Ann

thank you and ty all for this outlet. As far as the my wife I was the rock, she knows whats happening (i bring her to every visit so I dont miss anything)
but I could never burden her with my doubts and fears. She pulls some strength from me to believe its going to be ok. and if thats all I can give her, its hers. As far as my carrier yes I could try and find another job but my field of work is about .01% of the workforce. Some chemical plants only have one instrument man.
I just got an apology email from my internal med doc for dropping the ball again. being this close to a treatment for something thats been without a name for so long, other than the false names, anxiety or heart problems whatever they could blame it on. but it's driving me to be artistic. When I got to the end of the email I wrote a small poem

I am the broken, wounded and possibly the left behind
But in my mind Im still a man and need to use any means
To hold on to that position before I wither beyond a place
Where I can be rescued, gasping on the ground as lifes army
Passes my frail body on the ground without a second glance

I fear diabetes, enough lung damage to make MCTD treatment impossible a heart attack cause my unique ability to clot. or even a stroke for the same reason.

Your all too kind and I can only imagine what some of you think of my entrance and jumping in with both feet. I never want to offend anyone
I never want to cause a glimmer of hope to leave anyones eyes. But for a very long time I was alone in illness. It feels really good not to be alone anymore.

Your poetry really touched me.
Mary Ann