Hi,
I'm new to this forum, and I need some support.I am a severe asthmatic, who requires high doses of steroids when I have an exacerbation, so I have been on and off high doses of steroids my entire life (I'm 51). My last round of solu-medrol and prednisone started in March, when I was hospitalized for pneumonia. Since then, I have not been able to get off it, due to worsening asthma and coughing when my prednisone goes below 20mg a day, so I am currently on a maintenance dose of 20mg, with hopes of going to 10mg starting today. For several years, I have experienced horrible side effects to the steroids-shaking, overly emotional(crying), parasthesia, brain fog, but the main thing is the nerve problems I am currently experiencing. I see a neurologist next week and would appreciate any advice on questions to ask the doctor, etc.
My new nerve symptoms began in April when I developed "foot drop" along with weakness and numbness in my foot and outer calf. My primary doc sent me to PT, which helped to make my foot stronger. Although my foot did get stronger (I wasn't stumbling as much, the numbness started to spread up to the back of my thigh. I let my physical therapist know but I still continued PT. By the next week, the numbness had spread even more, up to my lower buttocks. At that time, my therapist decided we should stop PT because she didn't know what was causing this, and she didn't want to do more harm. She did the strength tests again so that my primary doc could see the difference from when I began PT. My strength had improved, but there was still marked weakness. She also recommended a neurologist, who I see on Tuesday. So I've been waiting for my appointment, keeping a journal of my symptoms, and just trying to get through each day. The nerve problems continue to worsen. Two weeks ago I had a sharp pain like a long bee sting on the outside of my hip, on the same side (left) as the foot drop, parasthesia and numbness. It happened 3-4 times a day and lasted about a minute. This symptom lasted about a week, happening up to 6 times a day, and then it changed. I will feel the bee sting and then it feels like someone is holding a blow torch on the area. This is happening at least 3 times a day, and then pain is so intense that it takes my breath away and can bring me to my knees.
I currently take oral & inhaled meds for my asthma, omeprazole, amitriptyline, gabapentin(neurontin), xanax(which I only take when on steroids for the shaking), prednisone, and I just started a new med, Nucynta, which will hopefully help some of the symptoms. I'm scared that the nerve problems will continue to get worse, until I can't walk.
Sorry this post was so long, but I felt I needed to tell the whole story. Both my primary doctor thinks this is all due to the prednisone, and I tend to agree with him.
Has anyone else experienced nerve problems that they think were caused by steroids? What, if anything, helped to ease the pain and parasthesia? I'm hopeful that the new drug Nucynta will help. Does anyone have advice on what to ask the neurologist? Has anyone had a similar experience-from steroid induced neuropathy to the burning pain, or anything in between?
I need help desperately...I just can't take anymore, and I'm terrified of what the next symptom will be.