How does solumedrol make a person stronger?
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May 11, 2008 at 11:11 pm
Most of you know Dell. He is my 4 year old son, dx. with cidp at age 19 months, onset, 5-8 months of age.
He was on solumedrol since 12/06 and this month was finally weaned off. On Monday, he came down with cold symptoms. He had elevated temp Monday, Tuesday, Wed, and Thursday evenings only. He coughed here and there but you could tell he had a little cold. He told me he was tired on occasions and he had shown dark circles under the eyes.
He is a little weaker now. Last week, when he would do a push-up, he would put his head up totally on his own. Tonight, I had to help him pull the head up.
What I don’t understand and I’m hoping someone with some experience can help me, how does the solumedrol make you stronger? He was on 160 mg each week and we weaned down after about 1-1/2 months.
We are praying this weakness is related to the cold but I don’t know. Also, how long should I wait before starting the solumdrol again?
I am going to email his dr., probably tonight and let him know what is going on. I don’t want to start on high doses again, but it’s the neuro’s call.
He is on ivig every 3 weeks.
Thanks, Lori
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May 12, 2008 at 12:13 am
Lori,
I believe that because CIDP is an inflammatory illness, the solumedrol (steroids) must knock down some of the inflammation, thus allowing the nerves to function better. I was on weekly solumedrol infusions for 21 months, & yet neither my husband nor I really know how they work. But they did make me stronger, not much, but gave me enough use of my hands to feed myself & enough strength in my arms to do tranfers using a wheelchair.When I finally went off of them I didn’t notice any weakness, just a lot more pain than I knew I had. Like muscle & joint type of pain; as steroids do mask the pain. If Dell is truly weaker strengthwise, I think he might have to stay on them longer, but at a reduced dosage.
Pam -
May 12, 2008 at 2:37 pm
His weakness could be from being sick. Emily always has a slight set-back (not enough for others besides myself to notice) when she’s sick. It was more pronounced in the beginning than it is now.
I hope you get some answers soon. I continue to keep you all in my prayers.
Kelly
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May 12, 2008 at 3:43 pm
Hi Lori,
No experience with the solumedrol, but Kevin was sick two weeks ago and tiredness and weakness was the chief complaint. It lasted about two more weaks. now my older son has it and he too is weak and tired. Good luck!PS Wow!! Push ups, that is awesome, I remember when it was hard for Dell to even hold his head up, he has come a long way!
Dawn Kevies mom -
May 12, 2008 at 9:10 pm
Thanks for all your replys. He’s doing ok today but I’m still noticing slight weakness. Like Kelly said, family would not notice but mom does.
I should learn to get used to all this crap with cidp but I was so excited about him doing so well and I feel like my bubble has been busted. Don’t get me wrong, he’s still doing great compared with 1 year ago but I want him to get better and not look back. I guess that is what we all want.
Love, Lori
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