The Prednisone is a curse in that we have to lower the dosage to finally get off, but then it increases the pain and the memory lost. I am writing down mor ethings and inform people that I can't remember certain things. I try to take it slower. I hate lowering my dosage, but I want off so I am enduring the pain and praying to God to help relieve me. Sometimes jus thaving something else to focus on helps. The steriod injections in my spine helped relieve my back pain, but nothing helps my legs. I just wish that I could have a margarita and all would be well with my world. LOL

I am just starting to decrease the prednisone.. I feel pretty good does that mean that as it goes down i will start feeling crappy again

I get those mixed messages from my dr too! It's so frustrating! I always end up calling his nurse to discuss worth him and get a call back! I too have the foggy brain with decreasing pred and got a ticket on Friday! I too get the sinus infections -advil congestion helps me
Love hugs and prayers
-:)

I definitely think the "foggy brain" is being caused by the Prednisone. I notice when I first wake up in the morning, I dont feel like that. It isnt until I have started taking my Prednisone that I feel that way. I know we are tapering, but I feel like its a long road ahead with that and all the side effects that come along with it. Ugh...

Canada, hopefully you will do ok with your taper. I'm sure its like anything else, and not everyone has the same experience. Dont be surprised if you DO start having some side effects with the taper but I hope for your sake you are one of the lucky ones who do not! :)

Hi...here are some suggestions that might help...
Shoulder Pain - I had the exact pain - went to a chiropractor and he
said it was a spinal misalignment (C5 and C6). He did an adjustment and I felt much better. He also had this electrode patch that I had on my upper back muscles that felt great - you might try that.
CK's low - that is great news - your body is not in such jeopardy as it was.
Low energy - try to make yourself do something each day like a short walk. Just a change of pace may help. I am in pain but I make myself walk as I don't want to be an invalid and I want to strengthen my upper legs.
Sleep - I have that trouble too - too hot or too cold. Sometimes I break out in sweat. Try to have your room really dark and cool with blankets on hand.
Foggy Brain - I make lists and play computer card games.
Other - drink lots of water cut out refined sugar. Herbs for inflammation and hair - Black Current Oil and Bioten.
Hope these suggestions help. Congratulations on the new job - always an exciting time :)!

will the "foggy brain" feeling go away once I am off the Prednisone for awhile?

Angie1026, Foggy brain can be a symptom of Cushing's Syndrome which many people get on the prednisone. Your symptoms sound a lot like the way I felt in the past. When I got to 10mg of prednisone I tapered down to 9.5mg. I stayed on 9.5mg till all the weird bloating and feelings left, then I went down to 9mg etc.. Go down by a half milligram each time and stay on it longer than 14 days to allow your body to stabilize. Do not taper down until you feel stable. Having an infection going on in your body while you taper can also contribute to feeling bad. Have your urine checked for bacteria. I hope you will feel better.

Angie, that sounds confusing with the decrease and increase, as though someone did not get the memo at the office. If I were you I'd double check on that. It is what they did with me increase mtx, decrease pred and added plaquenil. I couldn't figure out why they were decreasing pred when I still had symptoms, but I think they expect the mtx and plaq to start to work better. Who knows, I can't figure this disease out either, my brain is too foggy!!! Hang in there and don't be afraid to call the office if you have concerns, that's what their job is!!!
Hugs
Maruska

I just really feel like I'm gonna lose it here. I feel so emotional and unstable. I dont feel like my doctor is listening. She said my "foggy brain" isnt from my DM and I should check in with my family doctor. OK, maybe it isnt "from" the DM but I really think it is from the steroids that SHE is in charge of. I feel like all my doctors want to do is just pass me back and forth. None of them seem to know what the hell is going on.

Angie, i am sorry to say that some of your doctors may not know what is going on. Remember how very rare these group of diseases are. The docs want you better, they don't quite know what to say when you don't fit their profile of how it is "supposed" to go.
It is okay to get a second opinion, or third opinion and find a good fit for someone who will listen and help you weigh if a symptom is something to worry about or not.

I am a fan of a big teaching hospital with a team dedicated to Myositis or DM or the MDA clinics to find dedicated knowledgeable folks who want to help us. The TMA is a good place to start, on their medical advisory board are a number of doctors who have a passion for Myositis. I found mine there, and have been very encouraged.
My best to you, Shawna

I am still concerned 10 mg is not enough. I started on 60 mg daily and I am still working on my taper 4 years later. My Neurologist's philosophy is that you have to taper so incredibly slow that you body doesn't notice. Before we tapered, we went up to 25 mg of Methotrexate by injection weekly. We waited the 6 weeks it took for it to normalize my CK. Then we started to taper the Prednisone. I go months on a level and then taper 1 mg every few months. I was on 10 mg for a good 6 months. When I got to 5 mg, I was on that for several months. I am now on 4 mg every other day and have to be there 3 months with normal CKs before she will even consider additional taper. Then she said we will probably taper .5 mg for a few months.

As far as getting conflicting info from the doctor's office, I call and talk to the nurse and explain my concern. It is very likely they are not reading your chart thoroughly and just trying to help you get off the Prednisone when the doctor really didn't want to do that yet. I don't take any medicinal advice over voicemail. It is too easy to misunderstand.

I agree with Shawna. If you aren't comfortable with your doctor, find someone else. You need someone who knows this disease (or at the very least, learn about it) and will help you manage it to feel better.

As far as the brain fog, I have that too. It is real difficult for me because I have always had a keen memory. Now I keep lists and find myself telling people I just don't remember things well. The biggest issue is with my family sharing stories. I just explain I don't remember. Then I usually joke about having a "50 first dates" disease (from the movie) where she wakes up not remembering anything each morning. It is like a fresh start to every day! I can laugh about it but really it is irritating. Try to hang in there.

Hi Angie,
I can so relate to your situation as I am also in the same place. I've been offline for awhile so I'm going to have to play catch up. The first thing I recommend is having a good cry or even a screaming fit all by yourself. It helps to lower the tension in your mind and body. Working out would be great, unless you are like me - too exhausted to exercise and too weak to go to the gym.

I have quit calling my Rheumy's office because the answer that gets back to me never makes sense, like yours. I think the nurses are playing doctor sometimes.. Anyway, it upsets me too much when I get their stupid answers, so I've just been listening to how I feel and going from there. My Rheumy is wonderful, but his nurses are another story. From my original 60 mg prednisone I was weaned down to 10 mg and all went well. At 9 mg I started feeling a little lousy but it seemed to get better. 8 mg was rough and I finally gave in and went back to 9 mg for 3 days, then to 8.5mg and 3 days later to 8 mg. and it was better. 3 weeks later I went down to 7 and I feel lovely NOT!!! Emotions, moods, strength and everything else is out of wack. My memory left me months ago and has only gotten worse, I'm hoping it improves after/ if I'm off Prednisone.

You are not feeling like do do alone..
Hugs,
Lauren

@la7de
Glad to see you back here. We missed you.

@angie1026 and @la7de
The "foggy brain" issues have definitely improved for me, although my brain still isn't back to normal. I did take a supplement called Neuro PS for a couple months after I got off prednisone in May. I'm encouraged by the improvement I've experienced and hope that the "fog" continues to clear. So there is hope for you.

Lauren, I'm so sorry to hear you are experiencing the same issues I am. :(

Nanny, you are STILL have issues with "foggy brain" and have been off Prednisone since last MAY????? omg..please say this wont last that long!!

Yes, I'm still having some issues, but nowhere nearly as bad as before. Of course, I'm not completely sure that it was all prednisone-induced. By the time I was diagnosed, my thinking power was diminished. So I've often wondered if the inflammation had affected my brain even before taking prednisone. But, please be assured, my brain power has definitely improved. I can deal with the brain power that I have now. Much better than before diagnosis and while on prednisone. Take heart! You can/will get better.