Dermatomyositis and Struggling

I am down to 10 mg from 60 mg. Dermatologist put me on this and didn't tell me about tapering off or anything. I hD a reaction to an injection his nurse gave me without my consent. No hello. Nothing. Just came in and injected me. I had a horrible reaction and am now crippled in my legs from this doctor putting me on 60 mg of Prednisone. No conversation until I was totally crippled
I may lose my job from this. Had to be hospitalized 5 times from this pain

They told me this was reversible with tapering and physical therapy on my legs
I am mad and want to sue

@livinglife1 I’m so sorry that you’re having a tough time. You are coming to the end of steroids and it can be tough. I think I tried to taper at least 3 times. The doctors told me to just taper at my own speed and not do it quickly. That was the right answer for me and I started cutting the pills to make the dosing easier. I certainly don’t suggest that you try cutting your pills but at least have a good conversation with your doctor.
The mental problems you are experiencing are most likely due to prednisone. Try to get an appointment with your doctor as soon as possible! Tell them about the mental problems you are experiencing and that you just need help getting off prednisone and need help for the mental problems you are having. If you need help before
Tuesday morning, go to the ER and explain the problems to them. They should be able to help.
I don’t mean to scare you, but I am. This is not your AI disease causing problems, it’s the medicines meant to help you. Will you stay in touch with me? I really care about you.
P.S. I forgot to ask if someone can stay with you during this rough time. Someone who will listen! Make popcorn, give you a massage! But, if you think you need some help right now, ask your friend to drive you to the hospital ER.

I have not, and I have probably tried some 8 times over the last 9 years. I spent 18 days in the hospital in November with my last taper - I got down to 4 mg of Medrol and could not move my legs and began to have difficulty swallowing food. The legs feeling heavy can be from either the DM as you start to taper the steroid and you begin to flare . . . or from being steroid dependent as your adrenal glands aren't working anymore. The body needs the equivalent of 5 mg of prednisone every day, and as you taper below 5 mg, your body starts to struggle as the glands can't produce their own cortisol any more. which can occur from long-term steroid use which can suppress your adrenal glands. Signs of adrenal insufficiency include muscle weakness, body aches, nausea, low blood pressure, and dizziness to name a few. Cortisol is also a hormone critical for regulating the body's response to stress and maintaining emotional balance, so adrenal insufficiency can also cause mood issues like depression, irritability, mood swings and anxiety. What you are describing sounds a lot like adrenal insufficiency.

Prolonged use of steroids can cause steroid myopathy as well which causes weakness of the proximal muscles. It's hard to get up out of a chair or climb stairs or dry your hair. And sometimes you get the double whammy - you have both (which is what I was diagnosed with in the hospital: I have Tif Gamma DM, and I have severe steroid myopathy but can't come off steroids as I've been on them for 7 years so my adrenal glands are now suppressed. I won't be trying another taper any time soon!)

As Becky suggested, it would be good to get an appointment asap with your doctor to address this. If you cannot, then maybe a trip to the ER is the way to go and explain how you've been feeling and that you've been tapering and are now below 5mg at 2mg and having heaviness in your legs and mood issues. If it is an adrenal issue, your doctor may want to increase the dose to at least 5mg which is what your body needs to see if you feel better all around temporarily and then try tapering again in the future - but more slowly from there to see if your adrenal glands can adjust. Best of luck. Hang in there 🙂 Pauline

@becsbuddy hello
I want off the prednisone so bad. But not sure it’s worth all of the side effects. The adrenal issue is scary. Hard to determine if it’s tapering or DM…you’re right.
My mind seems a little better. I really tried to just rest this weekend. Spoke to my Neurologist and he said I need to rest and stop the taper for now. I still work 5 days a week and last week was hard. I need to rest more when I get home in the afternoons. Tomorrow is methotrexate day for me…so the next few days are hard. Praying for a better week. Thank you for responding. This can be a lot mentally but I haven’t felt it as much as I am currently. Thank you again.

@becsbuddy also, I’ve heard cutting the pills to slow the taper side effects is a good idea. I think if I start again, I will do that.

@livinglife1 cutting pills may be easy but also dangerous! You can ask the pharmacist if smaller doses are available. I’m an RN so I knew how to safely monitor what I was doing. But, even with that, I was a nervous wreck monitoring the whole process. Please don’t try it!! Talk to the pharmacist first.

Yes! Of course.
I have a family member that is a pharmacist. We spoke and he said if the pill is scored it can be split. Has that been your experience? Of course not trying as of right now. Just holding at 2mg.

@livinglife1 I only cut the scored ones. Maybe your doctor will give you prescriptions for 1 mg pills and 0.5 mg pills. It does make life easier!

I take Rasuvo for DM. I also have some topical prescription creams from dermatologist.