Prednisone side effects

I think I've experienced all the side effects of this hellish drug. I have the moon-face, the horrific weight gain, high blood pressure, problems with blood sugar, acne, etc.

But, the food cravings. Okay. Now, if I'm going to be hungry all the time, why can't I crave food that is actually even semi good for you? All I want is sugar-filled food or carbs! I can't eat much at one time, but then I want it all the time! all. the. time.

Even when I'm feeling nauseous, my brain is wondering where the next brownie is coming from.

All that and it doesn't even work all that great for me.

...ologist

Rheumatologist
Pulmonologist
Cardiologist
Neurologist
Immunologist
pain person...what are they called?


Have I left any out? Might as well add them to the list now while I'm adding, right? blah.

Neurologist on board

I haven't seen a neurologist since I was diagnosed. This new doctor (wonder when she'll become just "my doctor"...Dr. Lowery is still holding that status in my head)...anyway, this new doctor has referred me to a neurologist. Interestingly, it took her a month to get the referral made (she's definitely on the slow side), but once she made it, they got me an appointment within the week! What's interesting about that...usually it's a good several months to get an appointment in that clinic. So, Monday morning I see a new neurologist...not the one that initially saw me and thought I might have PM.

I'm not sure the point of seeing this neurologist. What are they going to do that's any different from what I'm doing? There's nothing different treatment-wise we can do.

But, I'm going to the appointment monday. Like a good, compliant patient. Wouldn't want to deprive **** of making any more money off of me. (okay, so I'm still a little bitter about being forced to change doctors.)

Feeling lost

Yesterday I finished my November IVIg treatment. This was my first treatment with my new doctor. The infusion clinic staff were super nice.

But, I just want to return to Dr. Lowery.

Thing is, when I was with Dr. Lowery, I knew exactly where I stood as far as my health...CPK levels, etc.

This new doctor, she didn't even order lab work. I have no idea what my labs look like. Have no idea how high my CPK levels climbed to before I had my IVIg this month...so, how am I suppose to know if I can decrease the steroids this month or not?

She really hasn't a clue how to treat ME.

I need to figure out how I can return to Dr. Lowery.

In the meantime, I'm about out of pain medications. The pharmacist has faxed the refill request to the doctor twice in the last week and the doctor hasn't replied. I've called the office twice and am told to have the pharmacy fax in the request. So, yeah. Things can never be simple, can they.

I'm sick of all this.

and, I'm already sick of holiday stuff.

You look so Good!

"You look so Good!" "You are doing so well" "You must be doing so much better, you look great!"

First...thank you prednisone, but I'm over 50 lbs heavier than what I use to be. I need to lose at least 30 of it to be in a "normal range"...my hair falls out, my nails are brittle, I get bruises if you look at me wrong and my face keeps breaking out...I know I don't look great! But, yeah, I know that's all physical.

What you don't know is how hard I work to not LOOK like I FEEL all the time. I feel like hell. I'm tired. I'm in pain. I'm nauseous quite a bit. I can't lift a gallon of milk to put it into the fridge. I can't lift the jug of Tide (or whatever I use) to wash clothes. I have trouble getting out of bed by myself on some mornings. Getting dressed in the morning exhausts me before I ever leave the house.

BUT...I LOOK GREAT! So, I must be doing better. Right?

Good days just lead to bad days

Last weekend was a nice weekend. I was feeling pretty good. I woke up not feeling tired...first time in a long time I actually felt rested. I cleaned house and went to the grocery store. I most all afternoon and put a few meals in the freezer. That was Saturday. Sunday was church and hanging out with Mik. Monday through Wed. was work. I got home late two nights (later than usual, but not really late). I had today off (holiday)...and woke up tired and hurting. I ran some morning errands but was home by 11:30, put dinner on the stove to cook for the afternoon and then crashed on the couch. Tired and hurting. My hips feel like my bones are grinding together. My back muscles are painful and in knots.

IVIg is scheduled for Thurs and Friday of next week. I hope it can get this back to a bearable level.

Normal ends again

This new doctor calls me yesterday to let me know that my CPK has gone back up.

So, I'm no longer in the normal range. But, she's not sounding overly worried about it. It's not that much over the high end of normal. However, I expected it to be high as I've been feeling some slight increased weakness here and there.

They also have yet to call the insurance to get my IVIg approved. I explained to her, again, that I need to have it 11/18-19 to remain on schedule. I don't think this doctor seems to understand that by missing a treatment my CPK starts rising fairly quickly and my weakness increases quickly. I can't miss a treatment. Why would she understand that, though, she's not treated severe PM before...she has no experience. (grr. insurance)