We decided to do a round of steroids. I discussed this with both my neurologists. Throughout my years with MS, I would average steroid infusion treatments two times every year. That is why I was on so many disease modifying therapy drugs for multiple sclerosis, I always had relapses despite taking these medications. I hated steroid infusion. I hated the side effects. I hated the withdrawal. I refused to taper after the first few years dealing with steroids. Going from 1000mg a day to 100mg a day, you still went through the withdrawal symptoms. Then you prolonged it by gradually decreasing the dose amount. I just preferred to deal with the steroids withdrawal symptoms and be done. I didn’t need to drag that shit out for a week. Unfortunately, as much as I hated steroids, they worked well for me. It helped with whatever relapse was happening. It also was a great tool to bring back my energy.
The last time I did a steroid infusion was back in 2018. It was the second time it did nothing for me. I really thought ok, I’m officially secondary progressive, steroids won’t help. I think we just took steroids off the list. It was me who asked the doctors if they thought that steroids could give me a boost. 25 years of steroids I always had it prescribed my regular neurologist, this time it was my specialist.
It has been 6 years since I took steroids, The big difference was that there wasn’t an infusion. I took pills. How great was that!!! My poor veins can’t handle anymore IV stints. I had to take 25 50mg pills a day. If you do the math, that is 1250mg a day. I never did that much. I only did 1000mg via IV. Ok maybe it is because it is given by oral that it is so much higher. I did double check with my doctor’s office and was given the YES correct instructions so I d didn’t question. I also had it for 5 days. I usually did a four day infusion but I know that it can vary from doctor to doctor. I didn’t receive any pills to taper with nor did I ask for any. I would not have tapered even if neurologist recommended
Well I was sicker than I ever was on steroids. That includes the original time when I was on steroids for 3 months during my first relapse. After being off for 24 hours I woke up that morning with severe chills. Worse than I had when I was in the hospital with pneumonia and 103 temperature. My hands weren’t just in the claw my left arm was so hyper spasmodic it was stuck to my chest. This picture is how it was.
I called my aide (thank goodness for my aides) she gave me aspirin and blankets. I finally stopped chattering after 30 minutes. My left arm is still hurting from that spasm today. I was in bed for 3 days. I couldn’t get up. Thankfully my aides fed my dogs. The first two days I slept the whole day. Yesterday I only slept part. Today I fed my dogs, washed my hair and even drank coffee. I finally feel somewhat better considering how sick I was. Never had that with steroids. I have felt bad, but I still manage to get through the day. I still worked and took care of my daughter, who was young at that time. I was NEVER down for the count for 3 days. If I don’t get a good boost of energy, I personally am going to be taking steroids off my list of medication’s. That was a very rough ride this week.
2 thoughts on “Steroid Withdrawal”
I hear you. The first and only time I had a 3 day course of IV steroids, I had chronic hiccups for 3 days. That is not an exaggeration and with the exception of a respite every once and a while, they were constant throughout the day and night. It remains one of the most miserable experiences of my life.
Now I get 1gm a month after an apheresis procedure . Still get the hiccups, but only for one day, and hits on the medical marijuana vape kills them in their tracks.
I have a script of 25mg prednisone pills that I will take on occasion if the leg weka was is really bad but generally try to avoid them. I took 100mg of them once and felt like shit for a day or two.
I would kill myself with hiccups for three days. I couldn’t imagine I’m complaining about just being in bed for three days.
I’m hoping the worst is behind me now however, I can honestly say if this doesn’t give me a good boost that I am definitely definitely not doing this again. By the way, it’s nice to see you back again Steve.